The 7 Deadly Emotions of Caregiving: How to Cope

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almost 6 years, said...

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almost 6 years, said...

Thanks for this article. My wife is now ill for 8 years and I am trying my best to keep everything together. Every trap is so applicable to me and I will try all of this to cope!


almost 6 years, said...

Thank you. It's so helpful to just hear that the way you are feeling is "normal". I have been feeling anger toward my mom's situation and especially have been dealing with anticipitory grief and guilt for several years now. My mom has been sick with one thing or another all my life whether real or exaggerated. That's how she got attention from my dad. He's been gone for 34 yrs and she does the same with everyone else in our family. I am the major caregiver. I'm struggling with health issues of my own. My sister helps some, but very little. I'm taking a vacation soon but feel guilty about leaving. I'm going to try to have fun and enjoy the break.


about 6 years, said...

This article is spot on! My worst feeling is guilt. On December 22, 2017 I lost my wife Bonnie after 35 years together. She was the kindest most caring person you could ever meet. When we met it was "Love at first sight' ; everything in the room disappeared except for her eyes and mine. After that we were joined at the hip, I have a scar on my right hip and she has a scar on her left. It is like we must have spent a previous lifetime together. Half of me is missing. I have been researching things like why no alarm when her heart stopped. She was on 2 blood pressure meds and one was Metoprolol which was used to keep her heart beat down because she had an arrhythmia. The day she died she complained of her heart beating hard and the nurse said the doctor had stopped the Metoprolol. This med cannot be just stopped or people die from heart attacks. If I had known more about the Metoprolol I could have brought her meds from home and saved her life. She had also left a message at home for me at about 8:45pm asking please to pickup, but I missed it. I was home but did not hear the phone. If I had spoken with her I know she would have asked me to get over to the hospital and help her. The nurses were being nasty to her because they did not like having to change the pads when she urinated in the bed. They would let her lie in her own urine for over half an hour and acted like it was no big deal. Anyway long story, I feel awful. The mornings are the worse and I cry everyday. I lite a candle in front of her picture each night and apologize. I don't go out except for food. Bill collectors want money. Closure would be for the hospital to admit their mistake and the doctor to lose his license. The doctor did not even call me after the event and to this day I never met the man. I am afraid that I am going to crack. After all there is nothing to live for anyway. She needed that medication.. She was not hospitalized for a heart issue. She was hospitalized for hemorrhoids and skin tags on the outside of her rectum that were diagnosed as squamish cell cancer. She would have big trouble stopping the bleeding when wiping in the bathroom and the bleeding was getting worse to the point of becoming severely anemic and needing blood. she was hospitalized four times from November 15 to December 22. They kept discharging her on a Friday and she was always back on a Monday. She was a good girl she had a kidney transplant from a cadaver that she maintained for 23 years. She took her meds at the same time everyday, but while in the hospital they switched up meds and gave them anytime they felt was convenient. If her doctor of 33 years had not retired she would be alive today. He believed that if it was not broken don't fix it. He would have made sure her meds were maintained. But if I had just answered the phone I could have gone to the hospital and advocated for her. If hospital security had gotten involved I would have called the sheriff. I had a couple of go arounds with a nasty charge nurse which resulted in her getting reprimanded an security would hang around when I would visit. I have a lot of patience, but I can't abide a liar. Why do these people all back each other up? The nerve to say "Well she was 72 and had a lot of problems" when she had just passed was classless. She died and I did not need to hear an excuse. They were wrong about her meds and someone was not watching the monitors. I was called a 6am to be told she was not responding. 6am is bed check time and in critical care they need to check patients twice to 3 times an hour and alarms should not be silenced. The excuse now for the hospital deaths is "Alarm Fatigue" and not enough nurses. Solution is hire more nurses (RN) and create business rules that do not allow for alarm silencing and if a main nurse station is found not manned the nurse should be fired on the spot. If people are dying then they have to pay the piper and hire more staff or take less patients.


about 6 years, said...

Nice article, i will bookmark this. Please keep on sharing. http://leadcareservices.co.uk


about 6 years, said...

William I would suggest you check with your state Dept of Human Services and see what you state and county has that might help you and your wife. I would think you would qualify for disability and social security for yourself. I am 62 and just started getting my social security. It sounds like your dr's would have reasons to support you in applying for disability. At least in our state they have waivers which my husband has a brain injury waiver and if you qualified for an ill and handicapped waiver or any other one you would be eligible for medicaid which provides home health care. I would think your wife would qualify also. I'd check out anything that is possible where you live, You can ask your dr for advice and any info on getting help. I hope you find some help for much longer.


about 6 years, said...

I know people who feel these feelings from caring for adult children and the grandkids. Often this is because of drugs, mental illness and/or unemployment. The older adult looked forward to retiring and instead they are consumed with worry about the survival of these family members. They often invite them to live with them till they "Get it together" and then no one moves forward.


about 6 years, said...

My wife has Secondary Progressive M.S.. She was diagnosed 34 years ago. WE have been married for 41 years. She had a fall 7 months ago and shattered her right femur. She had surgery to have a metal plate and screws put in her leg. Through the years She has experienced every symptom you can think of. She has had both hips and both shoulders replaced. A nerve rerouted in her left arm. Emergency appendectomy, that due to lack of feeling, caused an abscess and had to have part of her colon removed. I could go on and on. Let's get to today. She is at a point in which she is essentially bedridden. She is 62 and I am 63. I have Coronary Artery Disease, Peripheal Artery Disease, 4 bad discs and a cyst on my spine. I suffer from depression and panic attacks and so does my wife. She has dementia. She cannot get out of bed and into her wheelchair alone most of the time. I have to help her out of bed, into her wheelchair, go about 3 feet, help her out of her wheelchair and onto the bedside commode, help her stand slightly so I can pull down her pull-ups. When she is dome, I have to help her stand a bit, pull up her pull-ups, and help her back into the wheelchair, Then back into bed, help her get her legs in bed, and help position her so she can lie down. She has occasional accidents in bed, both wetting and bowel, which means I have to strip everything and clean everything up. I cook all meals, do laundry, clean house, take care of home and yard maintenance on 4 1/4 acres of land out in the country. I cannot get her to shower, so she just gets sponge baths from me. I cannot get her into our van, so I am trying to find a service that can take her with her wheelchair to doctor visits. Often times when I go to the store or pharmacy, she calls me to find out how long I will be gone. We live around 30 minutes one way from town. I recently quit work as my Cardiologist suggested, as I have been hospitalized 4 times in 7 months. Twice to have stents put in my Coranary Arteries, as one of those times my heart actually skipped too many beats and stopped while I was out. I had to have CPR and emergency care. We cannot afford home health at all. I am currently awaiting word on my filing for SS Disability. My wife has been receiving S S D for several years, and has Medicare, but she only gets about $730.00 a month. We are in debt past our ears, but have about $40,000.00 in equity in our house. I feel horrible even thinking about it, but is it time for her to be placed in a Nursing Home? We really don't eat properly. I don't sleep properly and neither does she. I take medication for Angina, as well as a host of other ailments. There are many times where I feel I will not live another year at the current pace I am having to be in. Wfhat does anyone think?


about 6 years, said...

I am currently taking care of my mom, who has suffered from psychological flare ups all her life. Whenever something, as she sees it, goes haywire, she freaks out and suddenly gets delusional and it last years. This is her 3rd go round with it. It started off with her going down a one way street (which she has taken numerous times before) so it was completely out of the oridinary. This was in June 2016. My dad then passed away later that month on the 24th. I moved my mom in with me because she developed severe anxiety and could no longer do the normal day to day things that she did before. Driving, cooking, bathing, etc. It was like a full dementia patient overnight. It's now Jan. 2018 and over 2017 we lost 3 more people in our family. My grandmother in May, right after my daughters bday and right before my mothers. My grandmother was like a mom to my mom, so her loss was huge for both of us. I went to Kansas City and sat vigil by her bedside and held her hand as she took her last breath. After her funeral we were in a car accident that put my mom, sister, and uncle in the hospital. My uncle alter died from his injuries this last Aug. 24th. My oldes brother, passed away the very next morning while on an anual camping trip. I seen him just hours before his death, which was a freak chance, since we had spent the prior 2 1/2 months fighting and not talking. SO.... this last 2 yrs has been hell for me. I took care of my grandmother, moved her out of her apt of 40 plus years and moved her into a nursing home because she too had now gotten dementia and could no longer live alone. This was so hard because my grandmother was 90 years old and still VERY independent! I flew from KC- CA and back numerous times for my father as his health declined and he landed in the hospital 5 times in 1 year. When he died I handled his miliitary funeral by myself. When my grandmother died, I handled her funeral arrangements, myself. And when my undle died, I too handled his funeral arrangements, myself. Yes, I had family, a brother still alive and a sister in KC. I was angry because neither chose to assist me. Now my brother's gone and that resentment and anger turned to guilt. I miss him more than anyone. Anyway, my mom's been living with me since June 2016, and things are insane. About a month ago I had to place her on a 51/50 hold to get her the help she needed! She had been turned away and released at 2 am from a mental hospital prior to this, simply because the psychiatrist on duty didn't think she "Belonged here!) My mom had taken of more than 7 times from my house while i was gone at school, and the police had to form search parties to find her each time. Luckily they always did. She almost got hit by a car, because she was in the street looking for me to come home ( her anxiety got out of hand this day, again!) Stories like this just kept happening and I kept asking and searching for someone to help, but NOONE was there! So, after yet another trip to the ER, one Dr. finally listened. She got some help and on some medication and she's doing MUCH better, but now she's doing other things that are driving me coo-coo! Drinking straight from the cartons, trying to make coffee, but pouring water all over the counter instead of in the machine (did I mention she also has stage 4 glaucoma)., she won't stope eating- every 5 mins she tries to put something in her mouth!) So, I now have a locekd fridge and a locked pantry in my own home. Sad... UGH. She has to bathed, I administer her medications, I dress her, I cook for her, I driver her everywhere, manage her Dr appts., bills, rent (yes she still has her own apt, but doesnt' live there!- I know stupid... but that too will be taken care of - I also have another younger, disabled, brother that lived with my mother, who now lives with my sister in KC.) My mom's care is a constant struggle. I am starting to feel my overwhelmed and I know this is NOT what I want to do forever. But, I also don't want to throw my mom into some home where she's abused. My mom has lost her ability to talk, only says 1-2 words through a list of stutters. She's congnitively like a 4 year old and she's starting to need more care than I think I can provide. But I feel absolutely guilty. I told my mom I'd always take care of her. I have 3 kids of my own, I'm a full time student in college, and I am pursuing a psychology degree. I feel trapped with my mom here now because she's reached a point where I can no longer leave her alone. Once my kids go back to school from xmas break and my semester starts up again, I am lost. My brothers gone and I have no more family here in CA. Medicare swiped all my grandmother's savings in order to put her in a home, where they only stole from her. Most people were nice, but as everywhere you go, you always get one asshole. So, that scares me. If my mom can't express herself or ask for help, how would anyone know if she was being abused in a home? This is what I struggle with. I would never forgive myself if she was harmed. But how do I keep myself from losing control. I'm starting to feel irritated. I feel I no longer have control over my own life and where it's headed. I feel she is in control of my every move, becuase it is me that has to care for her. What she needs, she gets. Not me anymore. I don't want to hate my mom for this!! I love her. Her dementia (which still has Drs baffled and don't know whether to call it dementia or psychosis) has gotten pretty bad. She can't remember anything anymore, yet still wants to be so independent!!! I don't know if I can strip away another woman's independence and place her in a single room, where noone will come and talk to her. (Yes, this is how it is). I watched this continuously with my grandmother, and she was in an excellent place. It was just to busy of a place for any sit down conversation sessions, and that was something my grandmother wanted so bad. She only got it when I was there or when my dad would call her on the phone. But then he died and I moved back to CA and had to talk to her long distance. LONG story.... I'm rambling. What it boils down to I guess, is this. I feel guilty, but I need my own life back. However, is this just what I think I need, or will this ultimately wind up to be something I regret for the rest of my life...??? The family I had and knew just 19 months ago, no longer exists. I went from celebrating my 40th bday in Hawaii in June 2016 to losing 4 of the most important people in my life. I don't even have my mom to support me, emotionally, anymore. That's hard at only 41 years old. For years I've struggled to keep my family together between KC and CA, and now that's all history. I can't say that I miss that part, there is so much more to this story.... but I miss the one's I love. Every person that died was unexpected to a point. My dad had emphazema for years and was declining, my grandmother was 93 when she finally had the fall that broke her hip and killed her, my uncle died from complications of the wreck, and we still don't know what happened to my brother. I'm struggling with just putting the pieces of me back together, and trying to care for my mom. It can get so emotionally draining.


about 6 years, said...

I found this site after awaken myself from an awful nightmare, triggered by the deep dark feelings of my current depression of caregiving for my mom. I have been taking care of her for 6 years now. She has Dementia currently going through the phases of struggling with speech and unable to dress herself, among several other difficulties. I'm at the point now of resentment, guilt, isolation and suicidal thoughts. I never would have thought that caring for someone else and being a good daughter would have such a negative impact in my own life/health. Without having any respite or help, my negative thoughts and depression are beginning to get the best of me! I try to seek help but no avail. I'm wondering, How you are doing and coping Zac from your last message 3 months ago? I feel like I maybe on the same path, of needing my freedom but when I do have it, I may just abuse it and spiral in more darkness. It's a constant struggle in my mind and I feel the frustration and anger building up. The complexity of the caring is extremely difficult and at the same time, my mom is my best friend, and means the world to me.


over 6 years, said...

YES- All of them describe my life right now.


over 6 years, said...

I'm feeling a lot of the anger and resentment taking care of my 83 year old father who has not always been so nice to me in my teen years and adult life. He had a series of mini strokes about 17 years ago, and apparently had a heart attack around 2003-2004 and had triple bypass surgery. The list of his ailments is a mile long and includes untreated Diabetes, diabetic neuropathy, peripheral artery disease, nerve damage from his strokes that left him unable to take a shower or a bath, swollen feet and ankles from Diabetes, going deaf from decades of working with power tools, going blind from cataracts, gout in feet and hands (he has a huge golf ball size knob on his thumb knuckle that he refuses to get 'scraped' off under local anesthesia), one kidney smaller than the other, spinal stenosis, a dead spot on his brain from the strokes, Stage 3 congestive heart failure, can barely walk because he's in so much pain and out of breath, and though he's always had some mental health issues all his life, I'm pretty sure he's entering the stages of Dementia. He's very argumentative, has problem communicating, and gets angry when he can't communicate and blames it on the person he's trying to talk to. I recently talked with my uncle, who is the executor of my father's Trust, and my uncle said he sympathizes with me having to deal with my dad because my uncle knows how my dad behaves. At least I have some emotional support in the family. But it's really a struggle day to day because I can't carry on a conversation with my dad for fear he'll just explode in anger because he took what I've said out of context. So, I just go about my business and try to ignore him while he sleeps all day and night. But when I go to bed, I can hear him 'clomping' around on his heavy swollen feet at about 2:00 a.m., then around 4 or 5 a.m., then again around 7 or 8 a.m. and then it's quiet around 9 a.m., and he sleeps until about 2:oo p.m. I am a light sleeper, but I have a fan running for 'white noise' to drown out dad's extremely loud television. He has the TV on even when he's sleeping, but usually turns it off when he's clomping around at around 2 or 3 a.m. I am not going to feel guilty for wishing he would just die and get it over with. He's been griping and groaning for 17 years that he's going to 'die tomorrow'. He sold off a majority of his belongings except for house, tractor, and car because he thought he was going to die all those years ago. His condition is much worse than it was 2 years ago when I moved back in with him. He can't go out and do any work in the garage anymore. He is a prisoner to his recliner chair. He can't sleep in a bed, and hasn't for about 10-15 years. I don't know why he is just lingering and lingering in agony and suffering. I don't know why he keeps holding on. Dad was forced to have a doctor's appointment about 2 months ago because his prescription for Lovastatin was running out and the only way the prescription could be renewed is if he saw his doctor. He begrudgingly went. They did blood work. Then they told him to come back in a month for blood work and a Doppler study. He did. And yesterday, his cardiologist's office called and wanted him to have blood work done 3 times next month and to see his primary doctor. This makes me think that something very serious is going on and this could be an indication that he may not have much longer. And in some ways, I hope that's the case, because I can't stand to see him suffer any more and I also can't wait to get my life back. So, I watch this shell of a man who was once a strapping 6'4" and now withered down to about 5'10", but heavier than he was in his 40s. And he's miserable and that makes me miserable. I am trying to take care of myself through all of this. I am trying to exercise, eat right, make sure my quality of life in my 80s will be much better than my dad's. But the depression kicks in. Depression is often pent up anger, so it's a double edged sword we as live in caretakers must deal with. I've been a lifetime sufferer of depression, so I'm dealing with my own battles, but taking care of a father who is dying a slow, miserable death has given me a bigger struggle to deal with. I just wish the good Lord would take him soon and take him in his sleep so he doesn't have to suffer.


over 6 years, said...

how are you all doing now? I wondered if the holidays are going to be a problem for you. My dad passed away Dec 6 1990 and his birthday is Dec 31st. Dec is still a tough time for my mom and me. Time does make it easier to deal with these feelings but it never goes away because he is still in my thoughts almost every day. IF you are struggling with depression as many of us do you should try to find something to hang on to. when I get into my dark place I think about my grandson Jake and my granddaughter Rachel. they are both very loving and lots of hugs and concern for me. so I push out the bad feelings and remember all the good times with them. I visualize a drain and I let my bad feelings slide down the drain. I also pray a lot. How you feel is a choice. It may not seem like it but it is. I used to tell my kids you choose to get angry. Noone makes you angry. They can't make you angry if you choose not to be. You are in total control of your emotions. They are only allowed free rein if you choose to let them. However I have been in the mind set where I wasn't willing to let go of my anger or frustrations. I care about you and hope you have some fun and excitement though out the holidays. I wish you all Sunshine and Laughter and May God Bless You and Keep You in His Hands. May He give you peace and joy and love and surround you with comfort when you need it.


over 6 years, said...

Well people... I used to write about about taking care of my mom, and not being able to travel, not having the freedom to do what I want. It's never really as simple as that -- my mom passed away in March. I took care of her my entire life, but now that she's gone, do I enjoy my "freedom"? Not really. I'm actually abusing the so-called freedom and gotten into drinking. Now there's no one to question me why I came home late ... or not at all. I have no one to chat with in the late evenings .. mom used to give even a feeble smile at my jokes trying to please her. I miss that and have taken to drinking to cope with my loneliness ... coming not out of necessarily missing her, but just being alone. From what I see, care-taking can get quite complex -- you can't live WITH them, you can't live WITHOUT them..


over 6 years, said...

Ahhh Lost in Space please don't give up the site. I know you are dealing with a very depressing situation. I wish I could give you something that would help get your husband to be there for you. At the very least you can vent here and get some release from frustration for a few mins. You need friends to keep you on an even keel. No we can't fix your situation but we are there for you any way. I am keeping you in prayer and I hope things do get better. Can you get your husband to talk to anyone? at a guess I'd suppose he acts out because it frustrates him and being mean is powerful when someone feels powerless or just refuses to deal with the stress any other way. Please hang in there and let us know how you are doing


over 6 years, said...

Hi Lost in Space - I am not sure why you feel this site is useless. It's been extremely useful during my caregiving journey.


over 6 years, said...

This site is useless.


over 6 years, said...

Hes just SOOI MEAN N ITS BREAKING MY HEART.


over 6 years, said...

God help me. I can handle the medical end..since my Son was paralyzed almost 2 yrs ago..He had been diagnosed with Schizoprenia 3 years before his accident..He aldo sustained a traumatic brain injury..and all the bones in his face were broken. He fell 30 feet off of a roof. So on top of this seemingly unmanagable mental disorder..he gets a tbi. Hes so cognizant..when THEY..counted him out. But the schizoprenia is getting worse. Yes hes had med tweeks..weve tried several different meds. Hes getting worse. I dont wanna put him away. I dont know whst to do!!!! Again..the medical care..no problem..This horrible mental disorder is tearing my family apart.


over 6 years, said...

I'll add emotion trap #8: Doom Caregivers are encouraged to get right back up off the mat, do their best, be good people, seek a little help when needed assuming that it's available. But, in the final analysis, you're on your own and it never ever ends. No amount of positive thinking will get around that fact.


over 6 years, said...

I GET U RHONDAW. UNDERPAID.. NO PAY..CERTANLY NOT APPRECIATED N UNDERRATED. I GET MONEY FOR TAKING CARE OF MY SON..BUT IT ALL GOES TO HIM ANYWAY. I DONT DO IT FOR THE PITTANCE..I DO IT SO IF/WHEN THIS SUIT GOES THRU..THE INSURANCE COMPANY HAS TO PAY THE STATE BACK. WHAT I WONDER..AS A 24/7 CAREGIVER IS.. DOES A FAMILY MEMBER GET LESS PAY THAN IF SOMEONE WAS COMING IN N DOIN WHAT WE DO..I HOPE SO..OTHERWISE HOW DO THEY MAKE ENDS MEET. ITS ALL TWISTED. BEST WISHES N GOD BLESS. WISH I COYLD HELP YOU. DID U EVER TRY A GO FUND ME PAGE..IF N WHEN TIMES GET TOUGH..WHICH IS ALWAYS. HUGS


over 6 years, said...

One of the issues that have come up in my search for programs and help for my handicapped husband has been financial payment to a caregiver. If the care giver is not the spouse they can be a paid care giver through government waivers. But if the spouse is the care giver then the gov will not pay them for doing all the work needed to keep that handicapped person in their home with decent care. I have searched all the info anyone has ever given me and have in the last 20 yrs not found anything that helps the care giver spouse. My mom can be my husband's care giver in our home and she gets paid through medicaid. It just doesn't seem fair that the spouse can't draw something for a full job of taking care of a documented disabled spouse. I don't get into politics but it seems like the rules need to change to help people survive a handicapped existence for the family. I am a care giver for my autistic grandson and I get paid for that to give my daughter a break so she can spend time doing things with her other children. My mom serves that role with my husband to give me a break . But if you are the care giver for your spouse and it is a 24/7 job then there should be some financial support. You can't go out and get a job because your spouse needs you there. There should be some compensation when the handicapped spouse is documented as needing 24/7 care. Thanks for letting me vent LOL It frustrates me when I try to do everything I can to give my husband as much independence as I can so he can regain some sense of dignity and the gov ties your hands in financial ways. NOT looking for a hand out just want some recognition of what we as caregivers give up to be their support system above and beyond being their spouse. We lived on just disability for several years and let me tell you it wasn't much money!


over 6 years, said...

LovelyMe38 I feel your pain. I am my husband's caregiver. He is not able to be supportive. I really don't have anyone to be my backup. I am the backup. Do you have anyone who can give you "time off"? a family member or a neighbor? It is important to take care of your own health both physical and mental. In Iowa my husband qualified for a waiver and it pays for someone to come in and stay with my husband for awhile. Maybe your state has something similar. I'd check it out. there are also Elder care centers sometimes where the elder person can be cared for for a few hours. We don't have that here but in some of the bigger cities this is a possibility. When I went to a quilt retreat a few yrs ago I paid one of my grandsons to come and stay with my husband while I was gone. Maybe this is something to think about. I hope you find ways to get some ME time for yourself. You deserve it and need it to stay sane. God Bless! Rhonda


over 6 years, said...

You're welcome Lost in Space. I hope things get easier for you! It takes a lot of time to get through the rough spots. I've thought many times can I really live the next 30 yrs like this?? My DH is handicapped with a brain injury for those who don't know. It is possible to get through anything if you just think this one moment I am going to get through this and the next moment and the next. Take it one step at a time one day at a time one moment at a time and you can do anything. God loves you and cares about you.


over 6 years, said...

Thank u RhondaW


over 6 years, said...

LovelyMe38. I meant..CAREGIVERS..GOT A BIT MANIC THERE. GOD BLESS. PRAYERS YOUR WAY.


over 6 years, said...

LovelyMe38. I get you. Your deal is diff than mine.mine is my son..yours is HIS Mother. Nonetheless..We ARE XATEGIVETS..NOT IF OUR OWN CHOICE..WITH HUSBANDS..WHO ARENT PROACTIVE!! THEY ARENT "STUCK". ARE THEY? NO OFFENSE TO ANYONE..BUT I GETCHA. STUUUUCK!!!


over 6 years, said...

Been sittin in a motel room for two days..makin "Dad" be any kinda proactive. Schizoprenia rears its UGLY . EVIL HEAD..AGAIN. I CAN HANDLE THE PARALYSIS,ETC. ALL THE PHYSICAL..I CANT EVEN BE AROUND THE MENTAL ANYMORE. IM DYIN HERE. WAITIN 4 A ROOM IN A UNIT..SOMEWHERE. HE CAN DO IT..THIS ONE TIME..AT LEAST.IM SICK. IM SORRY FOR BITCHIN. WE ALL HAVE A STORY. GOD BLESS N KEEP ALL YOU N ALL YOURS.


over 6 years, said...

I have been the main caregivef2for my mother in law for the past year. She has severe dementia. I am also only 3 classes away from my B. S. in Psychology. I am a online student. I am also a mother of 4 children and a pastor. I have started becoming very depressed and overwhelmed as her caretaker because my life has become so isolated. My husband has been wotking 2 jobs and has bren in denial about his mothers illness for a long time. We moved her in with us about a yeat ago after she could no longer live by herself. I found mysekf having to do everything for her, such as make her bathe, cook her meals,wash her xlothes and make sure she get to her doctors. Basically, I do evrything for her. My husband is so checked out on reality most of the time and he doesnt even give me the time and attention that I need. I am bexomung very angry at him and feeling like why should I continue giving up my life to stay at home with his mother day in and day out with no feelung of appreciation. What do I do? There is so much more to this story!


almost 7 years, said...

Ok I'm posting alot but I have one more thing I want to share. I am a care giver to my husband and also to my autistic grandson. I get paid for being his care giver. Zach is now 16 and was diagnosed at the age of 2 as being autistic. it is really unusual to get a diagnosis so early but my daughter worked with 2 yr olds in day care so she knew hwen things weren't right. Now Zach is 16 and we are working on getting him to learn social skills for self help. He is a great kid but I worry about not holding expectations for him that will make him reach for more. I also have worried about him growing taller and bigger than me(which he now is) as he used to throw himself on the floor in temper tantrums or lean over me and try to physically control me. He has come aways from those behaviors but I still have that on my mind at times. It's hard seeing your grandson not be able to do things and watch him be limited in his abilities. He is mostly stuck in kid cartoons and tv shows abut he has an almost photogenic memory. he knows all the minute details about his shows as in who the directors are who the sponsers are who appeared in which shows and which episodes etc. There is very little he doesnt' now about these shows. We have hopes he will not be stuck in TV land and will some day move behond this. but who knows. It is not the same as caring physically for a loved one but it is more of an emotional stress for me. I watch him and listen to him and think about what a "normal" 16 yr would be doing now. NO they would not be watching and mimicking little kid shows. but that is what his world exists of mostly rt now. He's very smart and has a quick mind. He is very loving and sensitive to other's emotions. He is funny and usually happy go lucky. It bothers me to feel he is missing out on so much. He will probably never get married. It's completely unlikely he will ever have children. But he is the love of our lives. and we take it one day at a time. I have him at least 2 weekends a month and in the summer he stays a week or more several times. I do wonder what his adult life will be like and I hope he continues to mature. We worry about him and it is stressful to meet his needs emotionally and any other ways he needs us. Thanks for listening.


almost 7 years, said...

wimped out daughter I'm glad to see you post here. my dad passed away a long time ago but he struggled with his health at home. I worked in nursing homes for 10 yrs as an aide. It is very typical for people to be angry when they can no longer do what they used to do. My husband went through some of that too. I'm sorry it is so tough on you and your sister but yes it is worth it. You will be able to look back and say I did all I could do for my parents. God Bless you and your sister for being willing to do all you can for them. I'm sure your mom appreciates all you do for your dad. Hugs my friend! we understand your struggles.


almost 7 years, said...

Zak I hope you have found some ways to deal with your feelings. I understand as I deal with depression in myself and my husband went through a lot of bad stuff due to depression. He felt he didn't have anything to make his life worth anything. What I figured out is get up and get out of the house. If you aren't on medication please consider it. It's important to have interaction with other people. even if you don't feel like it. I hope you make the effort to find something that brings you happiness as in a hobby or going to a favorite restaurant or spending time with someone who cares about you. I know it is easy for me to give you advice but you have to find what works for you. I hope and pray you will find that spark again and lift your spirits. Since we are now into summer there are lots more options open for getting back into life. Remember you are not alone! We care!


almost 7 years, said...

Lost in space I am so glad you are finding help for you and your son. Life is so worth living and it is better when you can reach out for help and find friends who will gladly help you! Please keep us posted on your progress. I care and I know others here do also. We have to keep each other strong! Please remember you can always come here to vent and we will listen. Life is hard without any added stress. Adding stress just means we have to work harder to stay strong for yourself and your family. I can't tell you how many times over the last 42 yrs I have sat and cried for my husband's loss of abilities. It is like stroke symptons that come and go and alzheimer's that takes his ability to process in his brain. I've had many times when I thought he was dead. He would be laying in bed with no blinking. I have had to live with a constant not knowing what will happen next with him. No it's not easy but I love him and I didn't get married to walk out the door. So we travel this path together. different than we might have been in my husband hadn't had a head injury. but are we better people for it? Yes in some ways we are. so if you are battling depression or having a hard time making it day by day remember this ____ THERE IS ALWAYS SOMEONE WORSE OFF THAN YOU ARE!!!!! Put your troubles in perspective. No I'm not saying your fear and frustration and anger etc aren't valid. Your feelings are normal for someone in your situation!!! But it could always be worse!! So if you need us we are here to listen and to comfort!! We care about you and want to help. YOU ARE NOT ALONE! post script: I always told my kids it could always be worse . when I found out I had to have surgery my 6 ft son walked behind me down the hall saying ---"Mom it could be worse!" LOL at that point I didn't want to hear my words coming back at me LOL I was miserable and I wanted to be miserable LOL


almost 7 years, said...

Thank you Rhonda . Much appreciation. Startin thetapy..me n my Son. I need everything back. Mind soul body n spirit. Such a wonderful inspiration. Hugs back.


almost 7 years, said...

Im so sorry about your Mom Zak. I also wasnt on for awhile. ... I pray that you find your spark again. Maybe someday..at least in many of our situations..or all for that matter.. We will get our mojo back n wont feel so EMPTY..


almost 7 years, said...

God Bless those of you who have lost your parents. I help my 86 year old mother care for my 87 year old father in a nursing home. He has a lot of ailments and is in denial about all of them. He treats Mother badly and is angry. She is a successful, famous and dynamic artist who never stops working. My sister and I have to run to keep up with her. It's exhausting and we have given up a lot in our lives to help our parents. Is it worth it? Your comments here have shown me that it is. So, thanks.


almost 7 years, said...

Hi Zak, Bless you, brother. Yes, I understand. My Dad died from Alzheimer's in October, wheel chair bound, then bed bound, and unsighted, and I had been with him every day, and I, too, come from a whirlwind background in the music biz. In my case, nothing will ever replace my Dad -- no person, no activity could ever do that. He is my lifelong angel -- even in his present state. I'm glad to be of retirement age, so I can do freelance work if I want. (The last thing I would ever do is re-chain to a desk or corporate malarkey. That's just me.) AND, I am now living with 88 yr old mother, full time (keeping my own apartment for later). I am also diagnosed, years ago, with Major Depression. Now, it comes and goes, thank goodness. But not without my AA group (which I mention only as my personal need, not anybody else's), and massive, aggressive therapy in the past. I will go out on a limb, as a person who is not medically qualified, and say you are depressed. There is no doubt. I hope you will find therapy and/or a support group that is meaningful, not window dressing. All best to you, and much love.


almost 7 years, said...

Dear Lost in space and everyone, Those of you who read my earlier posts, would know that I was taking care of my 82-year-old mom. And you’d also know who much I was cribbing about having "lost my freedom", not able to travel, how my life is ending at 59, why is it only me who has to take care of a mom, why not John Travolta. I'd complain about my "crippled" lifestyle, and I'd blame it on lack of time and space because I had to take care of mom, who was then confined to a wheelchair and suffering from Alzheimer's or dementia. I had every right to complain -- I quit my flamboyant traveling journalism career and relocated to take care of her. I was with her nearly three years, every day. I got her medicines, applied balm to her feet, prepared food, sat with her watching TV, fed her ... She passed away due to a stroke in March. She spent a week in the ICU and when the doctors said "this is it", we (my sister came in from Canada) moved her out and she died quietly after five days. So how do I feel? After having "regained" my freedom? While this emotions zone is highly disturbing, it's also terribly baffling. Sometimes I wonder if there's really a way back. I'm starting to think it's a one-way street. You spend what seems to be a lifetime taking care of someone you love or once loved, and you think your life has ended there. For all I know, that seems to be perfectly right -- there's really no way back. You (I) have exhausted the possibilities of an unchained life in your mind, and when it really happens, you don't care. Since my mom died, I have moved to another apartment, and I'm single and would appear to have the world at my feet. I have the time, freedom, money to do anything I like. I could fly to Europe tomorrow. But I'm not doing anything. There's no spark. Even the most exotic food tastes flat. Nothing excites me, not even the idea of a date with Kate Beckinsale. Am I sad she died? No, not really ... I took care of her my entire life and I didn't want to see her in pain. I'm quite clear on that -- I have no reason to be sorry or sad.. Well it's barely three months since mom left, so maybe I will regain my enthusiasm at some point later ... but it's definitely not like what I thought life would be like "living single" again. Far cry. But the question is will I be the same guy I was three years ago. I'm sorry I didn't keep in touch with you guys for quite some time. I'll try and be here as often as possible. If I can help with any questions about "life after" .... I will try.


almost 7 years, said...

Lost in space you really should check out any thing your state has to offer for help. In Iowa there are waivers you can apply for and that will get you help as in respite care - someone to come in and stay with your son for you to have a break. there are many different programs through the government you should be able to access for help. Here we have the Dept of Human Services. I 'm sure your state has something similar in your community. There is also support groups locally and your local government should have programs that might help. Our hospitals also have support groups and help available. I am positive there is help if you just search and see what is out there for you and your son. If I knew what state you are in I would be happy to do some research for you. I have had to be my husbands advocate and have done all I can to find anything that helps us in our situation. There is hope out there!! You just need to let someone help you. My husband has a brain injury waiver and it provides among other things - respite care and pays for someone to come in and stay with him so I can be "off the clock" for awhile. I would think your son would also qualify for in home health care. It's worth looking into to keep your sanity and to make both of your lives better. If you'd like any help looking to see what you might qualify for just let me know!! I love doing this kind of research into what is available. Hugs my friend!


almost 7 years, said...

Had a nervous breakdown in 2004. I know how it feels and all that it entails. Hospitalized for 3 weeks. Ive HAD another one. I cant go to the hospital because there is nobody to take care of my Son.


almost 7 years, said...

To "Lost in Space," you have got to get outside help. Even if there is no money left, you must hook up with a social worker, and my suggestion is that finding "the best one" can be done at a very reputable "homeless" placement agency. You must INSIST on outside help. You canNOT solve your own, grave, emotional, psychological, physiological and medical problems until you do. You must be a squeaky wheel, and get that help you need. Make it your only priority until it is done. Right this minute, you come first, and your son comes after that. That is the only way that will lead to success. One more suggestion -- if you can't find a proper agency or social worker right away, then get yourself to an OPEN meeting (call AA and they will direct you to an "open" meeting, locally) of alcoholics anonymous. Raise your hand at the appropriate "sharing" time, and tell them, "My name is _____. I am here because a friend of mine who is a member of alcoholics anonymous directed me to ask if there is someone in this room who will talk with me after the meeting, because I have urgent needs for my health and saving my life." There are many alcoholics in recovery who want to be of service, and they may have some ideas, because we all share similar stories. You don't have to be a member to become a very good friend of someone in the fellowship.


almost 7 years, said...

I totally understand the feelings of helplessness and hopelessness. I have battled them all over the last 42 yrs. I still battle them at times. it is not a cake walk to take care of love ones and especially when the loved one is less than cooperative. My husband doesn't mean to be mean but he is verbally at times. It is his head injury that causes it most of the time. At one time he was also physically scary. He would go into rages and temper tantrums. Medicine has helped with that and he doesn't do that much anymore. He would never hurt anyone in his right mind but sometimes his paranoia takes over and he thinks things are true that aren't. I have been through a lot of what everyone here talks about. Not all of it but a lot of it. It is a day at a time moment at a time life. We do what we can and when we can't we just stop and do the best we can to survive the moments and days. We are Christians and believe God helps us through all things. If you believe then call on the Heavenly Father to help you through. If you have a different faith or don't have a faith then you need to turn to friends and family if you can. By posting on herr WE ARE YOUR SUPPORT also! You can do anything for one moment of time. When I walk I concentrate on one step at a time. I look just a few inches beyond my feet and that is my goal for that moment. when I reach that spot I look forward just a few inches and choose another spot to use as my goal. When you keep doing this before you know it you have gone a mile and didn't realize you'd gone that far. Life isn't fair it doesn't come with any guarantees. We have to do the best we can. If I can uplift anyone with my words then I hope you take away from this comment with a feeling that someone cares deeply for what you are going through. I've done the crying and the getting angry and the fears and the deep sense of loss of who and what I once was. I feel for my husband for all he has lost and can't ever do again. At the same time I feel sorry for myself that my marriage wasn't what it could have been and what kind of people we might have been if not for the head injury. We both have dealt with depression. We both have had anger issues. My kids and grandkids have grown up knowing the way life has been for my husband and his disability. They have been affected for the better. they understand that life is a struggle. they understand you can't take things for granted. They are more compassionate and more understanding than they might have been. Those around you are watching you and they are learning also by watching you and your family. You are teaching others that life is not fair but we have to keep on keeping on. I want to leave you with this -- You are not alone! You are not the only person who is dealing with what you are dealing with. Whether I have done what you are doing or not there are others who have been in your shoes and made it through the dark days. YOU ARE LOVED!! WE DO CARE ABOUT YOU! HANG ONTO THIS WHEN TIMES ARE TOUGH! I hope you can find some help through state help or local organizations that can help. My husband is on a gov. waiver and that allows for some in home respite care. I'd urge you to check into any help available. Search the web for any help you might qualify for. Praying for you and your families May God lift you up and surround you with His Love and Grace and Comfort. May God Bless you and keep you in his Hands!!


almost 7 years, said...

Hi RhondaW. I'm done. My son was diagnosed with schizophrenia at 22. His accident was on November 14.2015. No. I have no support system. My husband is not proactive and has let this accident tear him apart. He was diagnosed with schizophrenia when he was 22. He's gained about 70 lbs. Whereas I've lost about 60. I'm all alone in this.DEGENERATIVE DISC DISEASE. BULGING DISCS.AND ARTHRITIS ON MY SPINE. I'M SORRY. I'm not gonna make it. I'm in excruciating pain all the time. I can barely walk. N I know he's mentally ill.And now paralyzed. I wish I could take it all away..but I can't. He's angry. I get that. But since his schizophrenia diagnosis. .everyone tells me .watch your back. In the last few months I've had a black eye.bout a broken cheekbone n 2 days ago he kicked my ass..from that chair. He's gained about 70 lbs. I've lost about 60 due 2 stress. He had a very long arm span m where I used to be strong. .I am now very much weak. Covered in bruises n can barely move ...I lost. I'm done. Fuck me. Sorry for the language. No hope left for me. Much higher love n many prayers. .for you n yourz. I'm only 47 n between caring for my parents before they passed..n now him..I've yet to have a life..or even one good day. I'm done . Love....


almost 7 years, said...

RHONDAW. THANK YOU.


almost 7 years, said...

Lost in space thanks for the comment. I feel for you in your situation. I know how hard it can be to deal with an impossible loved one. You need support and they can't or wont' help you. I'm so sorry you are feeling so down and that things are worse. I may have my problems but dealing with your son's issues must be more difficult than anyone else can know. I do understand the depression and the hopelessness. It is hard but please remember you are not alone. We all are here to uplift and keep you going forward when you need help! I hope you have a backup system where someone can give you a break from time to time. God Bless and know I am praying for you!


almost 7 years, said...

Hi RhondaW. Hope you n hubs are well. I haven't been on with you or Zak in a long time. I admire you. I'm losing it with my son. My family is destroyed.


almost 7 years, said...

Hi Zac n Sandra..I haven't been on in a long time. I hope things are going well for you both n that God is Blessing you n makin things easier EVERYDAY. MUCH LOVE.


almost 7 years, said...

I'm with you fellow commentator. .takin care of a loved one. My 25 year old. Fell 30 feet off a roof last November and is paralyzed from the nips down. broke all the bones in his face. traumatic brain injury among other things. This actually happened in Nov of 2015. My husband is NOT proactive. .in any way..shape or form. I also have a 18 year old. My son with the accident also came down with paranoid schizophrenia 3 years before his accident. Between tryin to keep that in check..and the brain injury. .JESUS. .HELP ME. I HAVE. SINGLEHANDEDLY GOT THRU ALL THIS IN THE LAST 5 OR 6 YEARS. .WITH GOD AND DUE TO HIS GRACE AND FAVOR. .BUT I'M EXHAUSTED. .I ALONE CAN'T SLEEP. INTESTINAL ISSUES ..HEART PALPITATIONS. ..ELEVATED BLOOD PRESSURE. I AM SITTING IN A HOTEL ROOM FOR THE SECOND DAY IN A ROW. I FEEL LIKE I'M DYING. LET " DAD" TAKE CARE OF SOMETHING ONCE IN AWHILE. BUT GUESS WHATHAT I DID TODAY? WENT N PUT MONEY IN THE BANK N CAME BACK TO THE ROOM AND PAID BILLS.. FOR A PLACE THAT I'M NOT EVEN AT. BECAUSE "DAD" CAN'T FUNCTION 2 WORK AFTER ACCIDENT. A YEAR N A HALF AGO. I CAME STRONG OUTTA THE GATE ..BUT DON'T KNOW WHAT TO DO ...ANYMORE. MY PRAYERS ARE SO WITH YOU. GOD BLESS SWEET DREAMS SAY UR PRAYERS.


almost 7 years, said...

I had to stop working to take care of my mom. I have no life, cant make any plans. Im sad and mad all the time. It affects my marriage etc. I love my mom but i am so unhappy right now. I hope i can find a way to help all the bad thoughts i have. Im anxious all the time, im having a hard time falling asleep. I wake up in the middle of the night with palpitations. Im tired.


about 7 years, said...

I hope I die soon. I hate caregiving for my mom, done it since I was child. My mom is disabled with CP and got worse, now needs more care. My dad left us when I was almost 18, I feel angry because I feel like my dad should be taking care of her. He was the one who married her. I never had a life/childhood because I was raised in a cult. I still can't have a life now and I will be 30 this year. I know if I'm feeling this bad, I should put her in a home. I would feel guilty because most people abandoned her. I sometimes wish she aborted me so I didn't have to live this life and feel this way. I was an accident anyway. Im so depressed and stressed. My personal hygiene is suffering bad, I eat mostly junk, I need medication to sleep. I have a lot of panic attacks. All my energy is going towards taking care of my mom. I have no one who can help. All I can do is hope I die soon, at least I wont have to feel guilty when she goes into a home.


about 7 years, said...

I have a sibling who fed on everyone's negativity about me living with my parents. They helped me when I needed it the most, so, in turn, I did the same for my parents. I had 4 siblings, 2 brothers, 2 sisters, aged 18-8 years older than I am. My mom had Alzheimer's, dad had diabetes. I also had 2 boys to worry about so I worked a full-time job at night and was a single mom, heading fundraising, team mom, coaching mom and watched my boys go to state every year. I succeeded at my job, fixing inventories, cash rooms and grocery departments at work. I slept 2-4 hours a day, IF I was lucky. Now, because I didn't take care if me, I ended up with stage 4 breast cancer at age 45, 3 years after my parents died. When I told my siblings I had breast cancer, I was told I was lying to get attention. I don't have much to do with my siblings these days. I'm a 6 year survivor.


about 7 years, said...

this doesn't help the feelings at all. I recognize what I am feeling, and still feel immense resentment, pain, depression, hate, anxiety and anger. I am tired. I have not been able to live my life at all. First I took care of my father, now my mother. Do I sound selfish? Indeed I am sure I do. I just want my life back.


about 7 years, said...

I am experiencing grief and guilt in measures that are more than I can handle. My mom passed away after 10 years of my care, of an aortic dissection. She was 89, a diabetic, on blood thinners and she said no to surgery. But I'm not entirely sure she understood what was happening to her. When she lost consciousness after 3 days, I asked them to take all the tubes and wires out, because mom was clear that she didn't want to be on life support. She passed away peacefully. Now I'm wondering if I did the right thing. I've heard several stories of people who survive aortic dissection, and I feel guilty that maybe I should have talked my mom into the surgery, and not have her life support measures removed. I loved my mom very much, but there's this nagging thought in my head that I didn't fight hard enough for her life.


about 7 years, said...

I am obsessed with being sure my mom's needs are taken care of n a very short staffed nursing home. She suffered a terrible fall and is not longer mobile and is in wheelchair with an alarm sitt No across from nurse station all day. She is legally blind, helpless and cannot press a call button to be toilette. She is on Medicaid, and am paying extra help $2000 month additionally for extra care. This is killing me because I am obsessed with her care. How can I let go of this obsession?


about 7 years, said...

I hope you all will continue to talk to someone if not here so you can continue to deal with your situation. You are not alone!! Reaching out is the best mental heatlh move you can make. I never had anyone to uplift me when going through my husband's head injury and subsequent effects on our lives over 40 yrs. So please stay connected to someone to help you through the tough times. Rhonda


about 7 years, said...

I need a support group


about 7 years, said...

This is such an informative article. We agree that emotions can by deadly if not properly dealt with. It's great that you have not only brought to light difficult to deal with emotion - but you have also offered a solution on how best to deal with them.


about 7 years, said...

How are you doing now lost in space and Zack? I hope you are finding ways to cope. Depression is a very real problem when you are a care giver. I look back and can see how much I was depressed along the way. We didn't know then what we know now. We limped along dealing with my husband's problems with no help from anyone. Glen had his accident in 77 and other than some therapy on a knee he had no help. Most of his problems are mental. He as paranoid and still deals with that. We couldn't go to a restaurant unless we got there when they opened and noone was there yet. I couldn't stop at a gas station to get gas unless there were no cars on the lot. He thought everyone was laughing at him and making fun of him for being stupid. I could write a book on PTSD and paranoia and care giving. I just hope to help anyone I can. It is tough to be a care giver and I have wanted to walk away many times. I contemplated suicide at one point in my life tho not because of my husband but because I had a problem with money. But he has never been there for me as any kind of support. I am his support and I have no one really. My daughter is some support but I can't lay everything on her shoulders. she grew up being my sounding board. now she has a family and has her own problems. I so understand needing to be your own person and not just someone's support. Finding time for something that makes you feel good about you is so important!! I am a quilter and I have been for 35 yrs. It gives me something that is mine and I teach online. so I get positive feedback from that. You are not going to have happiness and joy handed to you. You have to make an effort to search out ways to make yourself feel good about you. I also read alot. It takes me out of my situation and I go where ever the book takes me for awhile. it is an escape anyone can do. Another thing that helps me is if I am really upset I sit down and write on my word processor. I get out all of my frustrations and say things that I would never say to that person in real life. I often just erase it later but sometimes I keep it and go back and reread it months later. I don't keep a diary too hard to do but I do like ot write. I also like to write poetry and that has been an outlet to release feelings also. Whatever your strengths are think about how you can give yourself a lift each day. If it's a bubble bath or a walk in the park or anything that makes you feel good about you then you will have combatted in some small way the depression and the cares that drag you down. Another issue I have had to deal with that I know many of you do too is wishing it was me and not my husband suffering. I so wish I could give him back all the dignity and the personal strengths he's lost. He had a hard time giving up his driving. He loved to drive for hours and it was his stress reliever. He was a mechanic and it took him years to get too a place to accept he can no longer do that. I have done everything I can to give him back some of his independence. There have been times when I thought he had died. Many times during a seizure he stops breathing. It is so scary. There is only so much I can do for him and I have had to accept this. He will live with his limitations for the rest of his life. We have come to a point where he is doing well now most of the time. He has seizures and large muscle spasms from time to time and other problems. But the meds he's on has him in a good place now. We live one moment at a time as I never know when and if he is going to be able to get up and do things. His body shuts him down and any given time. He loses the use of his arms hands or legs at a moments notice. so we have learned to accept and live with this a moment at a time. We don't make long range plans. We don't worry about what tomarrow brings. We live in the moment for the most part. I can plan to leave at 9am but if Glen has a bad episode as we are going out the door then all bets are off and we stay home. I hope my ramblings brings you some sense of being able to cope with your situation. I do understand very well. We have been through pretty much every thing you are going through. One last note. - the best thing we ever did was both of us are on antidepression meds. If I forget to take mine noone wants to be around me LOL I start taking peoples heads off LOL Wishing you all sunshine and laughter and warm thoughts!!


about 7 years, said...

Thank you Fiona, Rhonda, LIS for writing in. I'm safe, don't worry ...no drastic moves. I remember my professor at San Jose State telling me: "Suicide is a permanent solution to a temporary problem." Sometimes I need to write furiously or dramatically to get rid of the poison in my mind. Makes sense? Thank God for this Forum where I can write my mind out, which, I hope, most will understand. Meanwhile, the staus-quo with my mom is still the same -- but not once in the last 3 years have I expressed any anger at her. She has no idea what's going on within me. I still hug her, I sit with her watching some TV, feed her with a smile and wheelchair her to the bathroom,,,, a nurse comes in to take care of her till next morning. She's actually looking better lately. I'm happy with that, but my pain is so strange, so abstract, changing colours from inside- to outside-anger to depression to loneliness. I just don't have my freedom, is that too much to ask? Don't I live only once? As you said, I will explore any self-help groups out here in Bangalore, India. There are no government programmes ...


about 7 years, said...

Zak, please seek care from a doctor, licensed medical professional, or a crisis hotline to get connected with someone who can help you right away. If you're in the US, call 1-800-784-2433.


about 7 years, said...

Zak do you not have any friends or family that would help out? I don't know what country you are in but here in the USA we have government programs that can help also. What about your doctor? Does the dr not have any suggestions to help you? I'm really sorry you are in this position. You need somebody to give you a break. that would at least help. Have you researched all the possible ways your government can help? Is it possible to hire someone to come and help your mom? I know the stress you are under. I hope you find some help to keep you going. Rhonda


about 7 years, said...

This will be harsh -- so if you can't take the rough, please stop reading. See, sometimes it's possible to see the end of the road, however foggy or distant. The only way this relationship with my 82-year-old mom can end is by death. I mean natural death, of course. Waiting for death implies that Either she or I must die..... there's no other ending to this, because I don't have facilities to put her in a care home. Such facilities do not exist in my country. Sorry, this is so blunt, but I am aging, at 60 and I can't wait forever for her to die. I love her a lot, I'm taking care of her like a baby last nearly three years. But don't you think I have a life? I live only once, don't I? I'm so used to living/freedom last 42 years of my life. ... is that a wrong thing? Even she's tired, sometimes she says so. And her dementia is creating extra problems, she doesn't believe me, etc.... her physical health/vitals are excellent. So I think I don't want to get old living under such circumstances. So why not I just create my own death, setting up enough funds and a trust to take care of her? I'm rich. Disclaimer: These are just my thoughts about how to resolve this issue, not that I'd necessarily commit suicide.


over 7 years, said...

To the commenter with the alcholic husband- Can you get respite care through your dept of human services? There are resources out there if you check into them. Your county should have programs that can help you care for your husband. Here in iowa we have in home health care where a nurse or aide comes into the home and helps with needs like lifting and bathing etc. It's something to check into anyway.


over 7 years, said...

My husband just 7 weeks ago had a total hip replacement, he's an alcoholic , he's been told he has to have the other hip done soon. I work full time 10 to 12 hrs a day and take care of him, I didn't know all the care that was involved, feeling overwhelmed, I have no help, and he went through alcoholic withdrawals and nicotine withdrawal he choose not to go through rehab, but volunteered me to be his full-time caregiver , he didn't tell the doctor he was an. Alcoholic . We've had some fights, trying not to loose it. Anyone have advice?


over 7 years, said...

Thank you Zak for always reading my posts. I haven't been on in awhile. I appreciate your time and caring and your input. I pray that we can all find our way back... I want my identity back. No just someone's wife, mother, sister , aunt, friend...I want me back. I'm afraid I'll NEVER find her again.


over 7 years, said...

Thank you fellow commentator. Every word of support and encouragement means so ooooooh much... and I agree. I am a Christian woman. I have to say that I've questioned and been made at God and I had to come to the realization that if it weren't for Him, my Son wouldn't be here. But he IS.AND EVERYDAY I THANK HIM GRACIOUSLY FOR CARRYING ME THRU. BUT EVERYDAY SEEMS LIKE A YEAR.


over 7 years, said...

Thank you RhOnda W. I'm very new to caregiving. Last November my Son fell 30 feet off a roof and is paralyzed from the nips down. broke all the bones in his face among other things. He also had a traumatic brain injury. I so admire you for sticking by your husband. You are a True angel. I'm 47 and it's been just over a year. My son just turned 27. On Dec.17. It seems to get harder everyday as opposed to easier. My husband is totally non proactive and I'm so tired all the time. Sometimes I feel like I'm gonna drop and never get up again. Stare at a wall and never speak again.


over 7 years, said...

thanks for appreciating my comment. I just want people to know there are others that have been where they are now. And you can move forward one day at a time. I still struggle with alot but it is just the way our life is. Such is life is my favorite phrase. You do the best you can and you pick yourself up and keep moving. What else can you do? LIfe goes on.


over 7 years, said...

Such an encouraging comment from Rhonda W Thank you wonderful person.


over 7 years, said...

I'm new here but I am an old hand at the care giving game. My husband flipped a fork lift and landed on his head on concrete and a wooden skid. He has a brain injury. This happened in April 1977. We have been dealing with this for 40 yrs. There were years where he improved and then got worse. I know all about the feelings and the ups and downs of feeling all alone. I have gone through a lot of what ifs,. I wish I could trade places with him and give him back his normal life. but I can't do that. I have to deal with him in all of his problems. I chose not to leave him when he was injured. I was encouraged to walk away but I didn't get married to leave at the first bad thing that happened. We will celebrate 42 yrs next Jan. I have been through some pretty tough years. but we have learned to take it one day or one moment at a time and we get through it all. I truly know how tough it is for you to deal with your situations. My husband has a head injury that mimics stroke symptoms and alzheimers symptoms and he has paranoia and PTSD from Viet Nam. I get really low and think how can I do this for another 40 yrs? I have worked hard to give him back as much dignity as I can. He can't read he can't work he can't concentrate on much for very long. We fought his depression and mine for years. we are both in a better place now. Please if you get nothing else from what I post is that there is hope!! You can get through the bad moments. You aren't alone. I am so very sorry for the pain you are going through. I firmly believe that how we deal with what our life brings us helps others around us. We may not know how we have affected others but they are watching and they know you and your loved ones are doing the best you can.


over 7 years, said...

Hi Cha-Cha.It must have been tough, going through a passing-away anniversary of a loved one. I wouldn't know to what intensity you have felt any of the '7-deadly care-giving emotions'. But since you wrote, you must have felt somewhat like most of us here. I'm getting help realizing that I'm not alone with such feelings of love, helplessness and to some extent anger, that I feel towards my 82-year-old mom. I'm exploring how best to handle the situation. Two things are helping me -- Zen, a school of Buddhism that teaches how to live in the moment and, strangely, history. Thousands of wars have been fought for independence.... so, in my own way, when I can't have the freedom/independence to do what I what I want, and when and how, and when I don't have a choice, I despair. ...and history tells one can't win all wars, ........ On another note, it's two and a half years since I climbed on to a plane and it's a lot for someone who's used to international travel twice or thrice a year ............... Care-giving, it's so complex because of conflicting emotions. I see many guys who leave their parents or challenged kids in a 'home' of some sort and go on with their lives. Am I being too sensitive ... perhaps. But no one has put a rule on how much 'sensitive' one must or must not be..... So Laurie, if you're going through overwhelming feelings as you said, I hope you will try and accept them, however hard it may seem. Then again, sometimes you may accept, sometimes you may fight -- but you do only one thing at a time. I think there may be a solution in Zen: "When you walk, you walk. When you eat, you eat." You don't do anything else. Period.


over 7 years, said...

I stumbled across this site by merely by accident when trying to seek answers to overwhelming thoughts and feelings I've been experiencing. Much to my surprise I found the 7-deadly care-giving emotions were almost written with me in mind and this is why I am interested in joining this support group. Yesterday, November 15 2016, was the one month anniversary of my beloved mother's passing. All of the emotions I've been experiencing have intensified so I know in my heart of hearts a support group is just what I need. Whether or not an online support group is better than an in-person group is best for me is unknown, but I figure this is as good a place as any to at least start the process. I appreciate your consideration. Laurie


over 7 years, said...

Lost in space...I ache for you and all other people who wrote here. I sometimes think that this life is truly hellish but I have my faith in Jesus. I pray that he comes back soon (I know that may sound like idiocy to people who don't believe this). There is hope in this life but there is such suffering. I pray for your comfort.


over 7 years, said...

5 a.m. Sitting here one year to the day of my son Alexs accident. I'm trying NOT to think of November 13th, 2015. He has another surgery next week. I hurt so bad when I see him struggle with simple tasks. Huh. Simple for us.. not so simple for him But he does his best and I'm Blessed to be able to sit here and listen to him breathe. I wish I could remember how. I either feel like I'm not doing as well as I could be. Or am just inadequate. Never in forever did I even fathom that all the first steps..the running, jumping, and playing would end ever. I'm trying to think of ways to help him more everyday....I'm trying to think of how to help myself...everyday. it's very difficult and stressful ... if I could trade places with him.. I would in a heartbeat. All my prayers to everyone n to your loved.ones.


over 7 years, said...

Thank you for your response. I don't know what to say except I have suffered major losses in my life (loss of brother in a traumatic accident) and loss of dad and I am only 41. Becoming a "sole" parent and trying to look after, never mind love, my husband has become overwhelming to the point of .,.....I can't even say. Sometimes I truly wish my life would end soon but I am going to see a therapist and hopefully this will help. I am a follower of Jesus but I can't even pray. I can't even fathom how God has allowd this to happen to me....(but why not? ) I guess I figured I had suffered so much in the past five years that it bought me some immunity from suffering. Some blessings? The house is paid off, my amazingly beautiful and brilliant six year old daughter, an amazing mum, and at least there is always some kind of hope...isn't there?


over 7 years, said...

I'm not sure what you mean by "I have all of these in abundance right now",stressedade. I take it that you may have a lot on your plate, maybe more than you can handle ("in abundance")? I have felt like that so many times, that it's just so enough, that I couldn't possibly take any more. That maybe it's the rock bottom. But it never is -- you keep discovering new bottoms. A few weeks back my mom slipped into dementia, and it's impossible to make conversation with her now. Someone might wonder why I wouldn't put her in some sort of care home. But I either can't or won't -- I know how they treat inmates there. My mom loves an early morning cup of coffee just like me, and I know she won't get it there. I will die a different death knowing she may have to wait till 8am for coffee. I understand I may be overly sensitive, which also makes me angry for she's doing to my life. Then again, she's helpless like a little baby, and you don't leave one in the middle of the road, do you. I also try to let her know every evening that she's not alone.... not sure how much she understands. Coming back to the rock bottoms, you never know when it's the real bottom. I think that given any situation, whether you're on the top of the world or sunk beneath the oceans, the chances that your condition will improve or worsen are EQUAL. You might have $8 million in the bank and yet win a new BMW. Or you could be in $80,000 in debt and still find a parking ticket on your windshield....or vice versa. Two months ago my mom was much better off, she now can't even speak. Two years ago I was a big-ticket journalist, covering commercial events in Europe, now I'm under house-arrest. So there's no real top or bottom -- today is what it is. Today is the absolute for today -- tomorrow there will be a new absolute. Having said that, if I must find a new standard or rule to continue to live at all, I need to change what's inside, rather than what's outside. I am exploring the Zen philosophy of life, scratching the surface of "Essential Rules to Live More Like a Zen Monk" .... It's tough what's happening, and my heart goes out to all who're experiencing it. Millions won't understand it. But let me tell you, "you're not alone".


over 7 years, said...

I have all of these in abundance right now.


over 7 years, said...

I know just how hard it can be being the only caregiver, I totally understand the conflicting emotions. I know that some of you can not afford outside help,but I just have to preach this over and over to all the wonderful caregivers out there. PLEASE!!! Call ever agency out there that might be able to help,I was finally able to get Aging and Disability to help us. It was to late to save are relationship as a couple, but it saved are friendship. So please don't be afraid to reach out to your local churches,highschool's (yes high schools,they have kids wanting to learn nursing and such,plus some have volunteer senior projects to do.) help is out there ,but you have to be willing to take what you can get at the time and way it is offered. And please don't stop doing things you like,heck the things we like are the only thing that keeps us going. Those that say they don't travel any more,well my brother in a wheelchair and has ALS and he not quitting his traveling,he not done with life he says and by golly he going to keep trying to do what he loves ,so keep doing what you like to do,thou it may involve a lot of extra prepping and planning it will be worth it.


over 7 years, said...

Lately I'm trying to take it lying down. I'm like a boxer that's been knocked down, and taking punches while floored -- because I know I'm in a no-win situation. I've been told to "accept it", and that "this too shall pass". I think I understand what all that means, but that again means I'm fighting back. I don't want to fight it. I know I'm beaten. It also means I'm going to have to close out the only universe I know. These are extremely intricate circumstances which words cannot describe. Going from one wall to another. @Jaslynk I might understand what it means when you say you haven't been able to travel overseas. I used to travel to Europe all the time, but not for last 2 years. Someone asked me, what will you achieve by traveling? I'd ask them back, what will I achieve by NOT traveling.


over 7 years, said...

Why can't I wrap my head around what happened to my son and our family It's been almost a year. Why do things seem harder aso opposed to easier? Anybody? ?


over 7 years, said...

I am a 24/7 caregiver for my mum. I have been taking care of her for more than 3 years. She is 88 yrs old with 10 yrs old IQ. Her conditions is getting worst this days. Hidding her pills under her toungue instead of swallowing them, hate showers, slap me when she is angry. Bite my fingers if I don't follow her way. You name it she done it. I am feeling very ill and I guess I might die before her. I really hate it when someone I hate most in my family boast to me the places he had travelled. Which I had not been travelling overseas for 3 years. Never offer any help when I need to run errands or tired. Mess up the house and leave the mess for me to clear!!! He just feel that this is my job. So I should do my job well. Sigh...


over 7 years, said...

Feeling so very list. I'm so tired and in so much pain all the time since my 26 year old fell 30 feet from a roof. He's big n heavy n.I feel all kinds of sick..ALLLLL THE time. 5 mins before his accident I would never have believed that it would happen and that he would be paralyzed. Another spinal surgery comin up soon. I'm trying so hard to be strong n patient. I'm driving everyone away because I feel so lost n depressed. I'm trying so hard to hold on. ...ugh and humph.


over 7 years, said...

Thank you...Mom is with us and has been for a fe months. We have good days and bad.


over 7 years, said...

Sue it's ok. We all lose it now and then. It is impossible not to break down sometimes, and misunderstandings are so common with all of us. Is your Mom still with you? What I do, every night, I whisper to Dad, "ok Dad, just listen for a moment. You won't have to yell or anything. Just wanted to say here you are, best Dad in the world, in the most comfortable bed and the safest home of the neighborhood." Then I lean down and touch his chest with my arms and I say, "ok, hug back," and he will just touch or push my arm, and I say, "see that, Dad, now we can have good dreams." And I always feel better after that, no matter how combative the day has been. Lots of love and support to you, Sue. You are doing your best, you deserve credit, and you are perfect!


over 7 years, said...

I misunderstood my Mom (96) and yelled at her now I feel terrible.


over 7 years, said...

I'm with you, Zak. Couldn't agree more. I watch movies late into the night, the kind that I enjoy, no matter what others might do. Ah, if I only still smoked -- can still feel the inhale that I loved! But, no more for me. And of course I respect that folks have gotten very ill from smoking. BUT, I'm glad you are enjoying your caffeine, your ciggies and fresh air. Open the sashes, mate! :)


over 7 years, said...

L-i-s: There's a minute to breathe -- now. Lately I find myself waking up as early as 2 or 3 am and I make some really good coffee, throw open the windows, turn on some music and light a cigarette. These are the few moments I call on my own. This is when the world around me is sleeping and cannot steal them from me. I experience some remotest form of freedom, a trace of which I was used to. Even then I find myself immersed in complex, conflicting emotions. Am I being very selfish? Do I or don't I love mum? On the flip side, maybe I should not be thinking at all and live one day at a time. I can pretty much imagine what you're going through, and I can write up some fantastic advice. But I wouldn't. I have heard many 'inspiring words', talked about spirituality and philosophies, but however much I try to change my own attitudes, deep within I know what I want and it's next to impossible to lie to myself. These are the moments when my my wanders to some extremes, and I wonder "Doesn't James Bond have a mum to take care of? Or a sick child?"


over 7 years, said...

I appreciate you for reading. I feel your pain. I'm so hurt for everyone. Who is going thru what we go thru. Specially those who need our care. I pray you have little break when you get a chance. Keep in touch ? When there's a min to breathe.


over 7 years, said...

Zak. I also feel your pain. Besides my last post. I would like to know. . Why are all the things I do never good enuf? And why when I'm in constant pain , is MY PAIN MINIMIZED BY MY SON? WHY AM I MADE. ..EVERYDAY MADE TO FEEL INADEQUATE. I HAVE MY OWN BONE ISSUES AND MY SON IS VERY HEAVY. I , LIKE YOU , HAVE NO MOTIVATION , NO INTEREST IN MUCH ANYMORE. I HAVE NO DESIRE TO EAT. NOTHING APPEALS TO MY PALATE ANYMORE. I KNOW I NEED TO EAT MORE THAN A SNACK EVERYDAY BUT MY STOMACH IS UPSET ALLLLL THE TIME. AND WITH ALL THE CARE I GIVE if I sit. Or stand , to put a piece of food in my mouth that's it. I get so exhausted that I am hit and am unable to go on with my duties. He, being so mean , when I am doing everyday doin everthing , is there no appreciation.? I can't keep up with everything.anymore. I'm averaging maybe 2 to 3 hours of sleep a night .. I'm doing this alone . I'm just feeling so dejected. And what I don't get is why does he feel so entitled to Everything? ! I'm trying to take care of everything by myself and I feel all the emotional and physical and pain and deep in my soul. I'm,tired of his selfishNess and self absortion.. I'm.breaking down. I.am praying for you .


over 7 years, said...

Lost in space -- I read all your posts. Not sure if this will help, but I definitely understand your feelings. Someone else saying "Oh, take it easy blah blah" only makes it all more bitter. My sister calls once a week from Canada, and goes "how're you're doing, mom" and "Zak, take care of yourself" and stuff. This doesn't help in any way. My heart goes out to you -- I do understand the suffocation, because I feel it myself. I'm sure you love your son and husband just like I love my mom, but my question is "What about me? I live only once, don't I?" I see hundreds of people around, who seem to going on with their life without a care (They may have some other problem, but that's beside the point.) I ask myself, "These guys, don't have a sick mom? A sick child?" ..... So many feelings come rushing at me. I remember reading a quiz somewhere, "What would a slave prefer? Eternal love or freedom?" The correct answer was "Freedom". Of course!! Without freedom, you can't love anyone. I'm missing the only one thing I lived by for so long -- my freedom to do what I want to do and how to do it when I want to do it. I heard just today that an ex-colleague is leaving for Stockholm to attend a Volvo research demonstration. That would have been me ... this may sound silly, but my point is I just can't do what I want to do. I'm not even interested in eating out, the movies, nothing ... I am not me, so how I can enjoy anything.


over 7 years, said...

I haven't done any traveling out of the country. Lots across the U.S. Now. I related to you situation. My son . 26. Was paralyzed in a 30 foot fall. All the bones broken in his face. , traumatic brain injury. I feel like I'll stuck. I am stuck. No more than he is. .just in a different way. Now my husband comes down with heart disease. I'm in my room by myself ryt now. For a min. Trying to catch my breath. I never stop. This is my destiny. But , I, like you.. want my identity back. I'm not Anne anymore. I'm Alex n Ginos mom. And Rocky's wife. Every appt I take Alex to a dr they always call me by my maiden name. Because my husband hasn't been proactive in any way since our sons accident. And I get to take care of him too. When he wasn't there for me when my son was dying . How much more can we all take?!


over 7 years, said...

I'm 59, male and single and had a travel-writing job that involved free trips to Europe. I had to quit the job when my brother died 2 years ago to take care of my 82-year-old mother. Since then I'm not able to leave this town even for day. I have a passion for travel and I'm well-off, so I can afford at least two trips a year, but I can't go anywhere because of my mother. There's a 12-hour maid service but I still can't leave home. I feel resentment building up against my mom, even while knowing she can't do anything about it. I felt a little better reading here that resentment can be a natural response in such situations.... I still feel i don't have a life and that I will die like this.


over 7 years, said...

My mother is only 64 and has completely given up. She got sick about 3 years ago with sepsis due to a kidney stone lodged in her urethra. She has had multiplayer surgeries to repair the damage. She has also had multiple bone surgeries through out the past 30 years. She also has hydrocephalus due to premature birth, which causes her to have petit mal seizures. Well After she returned home from the rehabilitation hospital she hasn't wanted to do much, she sits in a wheel chair all day rarely going to the bathroom which by the way she can accomplish on her own. Physical therapy comes by the house and every time they do she complains about something so she won't have to complete the exercises. I'm at my wits end I don't know how to help her if she doesn't want to help her self anymore. Please give some positive feed back I really need it right about now.


over 7 years, said...

I am so feeling what you're saying. My son was paralyzed in November. He fell 30 feet off the roof. I try so hard to be patient. Nothing I ever do is enough or I'm doing everything wrong. I've been up for 36 hours and he laughed at me and the me the he hoped it hurt. Because I have discovered disease. Why is it getting harder and not easier? I don't even want him here anymore. He's mean . Self absorbed n self centered. In March in every pain that I'm sure you can all understand. GOD.WHERE ARE YOU ?


over 7 years, said...

My husband is dying of ALS. Each week a new problem arises to be solved. I feel guilt because I wish he coukd just pass on and give us both a break. I know I will miss the "him" that was...but not this. I feel like my life is nothing but ALS...because it is! I'm angry, resentful and many times, impatient...even though I don't want to be.


over 7 years, said...

My heart n pain go out to everyone. All my props to every one who is going thru it


over 7 years, said...

I'm with you. How am I supposed to care for my 26 year old son after falling 30 feet and is paralyzed from the nips down. Angel two weeks ago my husband was rushed to the hospital and was diagnosed with heart disease.


over 7 years, said...

If that which does not kill you makes you stronger...WHERE do you find the strength or even will to survive?


over 7 years, said...

Is it just me or do are children seem engrossed with their needs only? I get angry because they don't want to get involved. They seemed to think that their mother is my problem not theirs sounds to me like I'm on the pity pot. I thankful that I have a personal friend who cares(Jesus)


over 7 years, said...

my husband was dignosed with stage 4 lung cancer a year and a half ago .im losing my house aug 17, I feel like a worthless piece of crap because it seems as though I am being controlled by my inlaws because I recently went through a bout wit child protection because my inlaws turned me in. I think the motive behind it was greed and jealousy. im not sure, I have never been accepted yet I live with my mother n law and the judge ( brother n law lives next door. even though it may not be true I live under a microscope, I want to relocate but have no money and my husband tells me what I want to here in regards to moving and behind the scenes gets what he wants because im too stupid and . my marriage has never been good and I long for that relationship he has detailed coversations with his family that im not included in and I live in the dark, he thinks we have a good relationship and he tells me everything but its not so. for example we went to the movies yesterday and this is the third time he just never sat with me, stayed gone, my whole life is like the movie situation. when he feels good enough to function im either burned out or he spends it away from me we go to the casino he gets lost and blames me . its just a sad situation and I miserable and stuck . and lonely


over 7 years, said...

My Alex has been sleeping for a few hours. I've been up and running for 19 hours. I know I should sleep when he does. But I would rather just sit here in silence as opposed to sleeping. So I know it's wrong but can anyone relate? I'd rather work for all those hours and sacrifice what sleep in may be allotted. And work all day n night n drain myself just for a bit of deep couch sitting and silence. Ugh and humph.


over 7 years, said...

I hurt so bad for everyone's hardships. Thought I was the only one going through this. Commenting on Alzheimers. That part of the brain't that causes swearing and inappropriate behavior is not the patients fault. I don't see by law how that can keep someone out of a facility. I'd check it out. That's a terribly debilitating disease and nothing should be considered as harrassment. Where's the empathy???


over 7 years, said...

Thank you for this. I'm having trouble with anger, for slights that are too often real, but also exaggerated. I know I am "overly sensitive," much as I also resent that catch-all description. And I get as much support in my recovery communities as I can. But I am often "trapped" for too many hours and days in succession, and expected to be the loyal family member who is expected beyond reason to give in rather than speak up. I have two parents to worry about, with the Alzheimer's situation being the less difficult than my other parent's wants (beyond reasonable and even somewhat luxurious needs). So, anger is too often my middle name. Now today, I've heard that a certain hospice organization may refuse service for a friend's family member, and it worries me about my own family. So, I have a question: Is a certified, notable hospice organization permitted to refuse service if an Alzheimer's patient uses language that contains sexual reference or reaches out to touch someone on the breast? I am not trying to be graphic, but I was appalled when my friend told me that the hospice care (by a quasi Catholic organization, though bonafide health care agency) for his mother was discontinued on this basis. My own parent uses language he wouldn't have used before the onset of the illness, and I can't imagine that, in this day and age, an actual hospice care facility would be ALLOWED to discontinue care because of Alzheimer's symptoms that we ALL have come to recognize! So, please add "confused" to my "anger" and "overly sensitive" problems, I guess. But I won't let it get the better of me, or my family.


over 7 years, said...

Hello! I can relate to the many things you are going through. I care for my grandmother and her life has changed significantly since her fall about 4 years ago. I feel I no longer have a life because of her 24 hour care. I moved my family to her home and things were ok until lately. I'm feeling the burnout and am struggling to sort out many emotions at this point. I want a sense of myself back and I only wish her adult children and adult grandchildren will lend a hand. Thank you for sharing your post and I know I am not alone going through the struggles of caring for an ailing adult.


over 7 years, said...

My son fell off a roof in November and is paralyzed from the nips down. Broke all the bones in his face among many other things. I have no life anymore and I am alone in this. My husband is not proactive at all. I have a 17 year old that helps a little but he is only 17. I'm sick and tired of being sick and tired. My son was also diagnosed with schizophrenia 5 years ago. How much more can I do. I feel like I'm dying.


over 7 years, said...

the information was great /understanging


over 7 years, said...

Get help. Go seek out respite care, look at companies. You deserve a break, they deserve you well-rested as possible in the circumstances,


over 7 years, said...

Oh my dear orphangirl.......just breathe sweetie....just breathe. I lost my Mom on April 22, 2015. My Mom and I had a fabulous relationship my whole life... .often very unconventional. She was always larger than life. I was honored to care for her. But it wasn't easy. She received hospice care for 2 yrs, but was always on the verge of being "too healthy" for their services. Slight dementia, panic attacks, COPD, early/mid stage Parkinsons. But you know....she reallywas doing pretty well. I would get so frustrated with her.....forgetting to put on her oxygen, walking around without her walker. Sleeping all day and reading sll night. In the middle of all of this I had to adopt my 2 grand daughters, ages 2 and 10 at the time. I would nap when the baby napped, Mom would feel I was avoiding her.....because after lunch was when she would wake up. Suddenly she started to act really strange, goofy.....then panic attacks that would last for hours, pacing, trying to leave the house.....all within a few days. She wasn't coherent. This lasted a week...I got almost no sleep...I had to knock her out with sleep meds to get her to rest at all. Hospice started to come every day. About 10 days in, the nurse realizes that my Mom has become septic from a kidney infection and her ammonia levels were toxic. They started her on strong antibiotics immediately. After about 3 days, she seemed to be coming around. She could rest comfortably, the panic was subsiding. She finally came out of it....very weak, but she was back. I held her hands and cried and told her how she had scared me. She told me "Don't be afraid, I will always love you" She went to sleep. I didn't put the bed guard up that night.....she was okay. The next morning I found her on her floor. She said she had been there all night. She told me her chest hurt. She said "I think I'm dying. " I called the hospice nurse to come and check on her immediately. She fell asleep.....and never woke up again. I sat,at her bedside for 7 more days and nights as her spirit fought to keep her body alive,,,,,and then that moment came. And it was over. And I couldn't breathe. I couldn't swallow. I should have taken her to the hospital when she started acting strange, when we thought it was sepsis, I should have called 911 when I found her on the floor. And now she was gone....realky gone....forever.... and it was my fault that this incredible, remarkable, amazing woman was dead. For months I could barely function, but I had 2 little girls and a loving husband to take care of. So I put one foot in front of the other. It is now over the 1 year mark....not that that means anything.....but I am doing better. It was a rough year. I cried a lot. I gained a bunch of weight. And I cried a lot. And I talked to my friends and family. And I cried a lot. I cried while writing this. But I breathe a lot more now. I know she would REALLY not want me to be less than who I am because of her death. So I can't tell you it will get easier....no, it won't. But you will find a way, a thought process, a gut instinct....to cope every day, to just keep putting one foot in front of the other, and just keep breathing.


over 7 years, said...

Hi orphangirl63, I understand and relate to some of what your write about--I'm currently caretaking my mother who's going on 96 in August, cared for my Dad until he died here at home in 2000, and feel the same emotions and will dread the day my mom doesn't wake up again or something else happens. But I hope you realized in some small corner of your thinking that you couldn't be able to keep her happy and healthy forever--and her time came. Yours, after the pain and shock, will grow stronger--and the orphan will become the adult growing into a mature woman ready and waiting to come to her own life and adventures that's also in another small corner of your thinking. I wish you all the best and hope you can find support to get through what you are feeling--


over 7 years, said...

Hi, I desperately need help.! I am an only child , I need help. I took care of my parents since 2008. My Dad had heart attacks, blood clot and then had small cell lung cancer. He passed Feb 2013. I took care of him and my Mom during that time- My Mom had sepsis in 2008, 2009 & 2012- she had spinal stenosis and scoliosis- she had UTI's on and off . I have slept in hospitals,in the ICU, in emergency rooms- I had both parents in 2 different hospitals at the same time, both in a bed downstairs in our home. I have a husband and 2 sons. Since my dad passed, I took over al the care of my mom, meals, washing clothes, getting her dressed, all her appointments, make up and hair. I had therapists come in for both my parents, hair dresser , my parents have been on every vacation with us too. My Mom died suddenly 2 weeks ago and I am consumed with guilt I loved her desperately, i took care of everything, but I don't know what I missed , she was talking to me a half hour before-She screamed for me I ran upstairs and she was white, her pupils were dilated I called 911 but they could not bring her back. She was everything to me, but the guilt is killing me' I would yell at her to do her therapy, go to the bathroom, walk, anything to keep her going she was hard to get out but once I got her out she loved going for manicures, pedicures, botox, movies, out to dinner.. I feel like I cant breathe, I feel as though I should have done more for her, I made her bathe herself and put up her pants every day and when she went to the bathroom- other than that we did everything for her I feel Like I was constantly picking on her to do more ..I thought I was doing the right thing. One other thing, is when I would ask her to do anything she would get angry and yell and use colorful language, blame me for my father getting sick . her being the way she was, I started feeling like I couldn't breathe, but now she is gone and I want to die I feel I should have been a better daughter How do I get through this?


almost 8 years, said...

Mom is going to be 95 this year. There have been a great many changes over the past 6 months. The stress of being her only caregiver is stating to take its' toll. The anxiety...anger at my sister who refuses to help with anything...and putting the stress on my husband who I just married in July is unbelievable. I went through this 5 years ago with my Dad...I just don't know how to do it again. The stress is bringing on my Lupus. Has anyone gone through this? Any ideas of coping would be so appreciated!


almost 8 years, said...

This is a great article. I am going to review it for my blog. I hope this is OK with you, it will come up in about 3 weeks, so let me know if you have a problem with that or if you would like me to credit you in a different way other than authors name and link.


almost 8 years, said...

My husband's parents are both deceased. Which leaves his 90 year old aunt behind. She always lived with her sister, my husband's Mom. "Dee" is mentally challenged, born a premie, and only went as far as the 6th grade. Born in 1926, she seems to have a very sharp mind, also, especially for a 90 yr old woman, she has such beautiful soft, almost wrinkle-free skin! She never smoked or drank a day in her life! . She is 4'8", weighs 80 lbs., and has SEVERE Osteoporosis. My husband has 2 other brothers, yet "Dee" has "latched" on to my husband since he was born. He says she is his second Mom. She taught him all of his bad habits, ie, she always wanted him to pretend to be sick and stay home from school since elementary schl. Which he ended being kicked out of for bad attendance. She never ever worked, never had a boyfriend, a husband, or kids. She always wanted my husband near her. Plus, my husband is handsome now, but was drop-dead gorgeous when he was a young man! . She is wickedly jealous of me and whines to my husband. I swear she has a sick, sick twisted love for him. Out of guilt, my husband won't even get an hha for her.. She lived with my husband for yrs and after he moved into a small cottage, she now resides with one of his brothers, wife and toddler. She has absolutely no regard for the sanctity of marriage or privacy. It took me a good three years to get her to put her guard down to me. She's with us for 8 days now BC brother is on vacation. When she is around, I help my husband out. But he has to take care of the SEVERE incontinence. The problem is, he totally shuts down and gets irritated and agitated when she is around. She's so oblivious and acts so entitled, it's disgusting. I know I should give her a break BC she's 90, but under all that cute sweet little old lady business, is a wickedly scorned woman! Psychology 101. I cannot wait til she goes back home bc my husband will miraculously come alive then!


about 8 years, said...

Hello everyone....and gentle {{{hugs}}} for you all. Hey! How do I keep this short? I CAN'T! There was/is too much going on! So here goes. Sorry, but I am so distraught with EVERYTHING going on, that I'm ready to pull out what's left of my husband's hair! I have been a caregiver for a lot of years, but now, the shoe is on the other foot, First of all, please let me say, that we are care GIVERS, not care TAKERS. We GIVE care to our loved ones; not TAKE it. Just to get that out of the way, but no offense given. I had a dream. More like a nightmare, if you ask me. I woke up screaming that my mother was dead and her house had been robbed of everything! I called her at 3am, just to see if she was OK. {She had to wake up at 6 to go to work. She said she'd call me later and because of being so petrified by this nightmare, my girlfriend had taken me to bingo with her. She did call and when she found out I wasn't home, she told my son to tell me to stay home the next day; she'll call again. She did..... I was a 27 year old woman who took care of my then 47 year old mother, who passed in October of 1988, just 2 weeks shy of her 48th birthday, from lung cancer. She was going in the hospital to have her foot operated on and we ALWAYS have x-rays that need to be taken as a precautionary. Her doc said "NOPE" to foot surgery and ordered 15 radiation treatments that did nothing but make her very ill. It did nothing to shrink the cancer, either. Next came the 1st surgery in February of 1988. Went back for follow-up and was told that some cancer was still there and more surgery needed. That came 2 months later. Cancer spread to the other lung as well. Sent home to die. I had moved from Philly to Pittsburgh area , in 1980 and rest of our "family" was there in Philly along with Mom. With my grandmother being the sole care giver of my mother and her own sister, who lived in Ohio, dying from cancer, she had a lot on her "plate". At the time, there was 2 sisters and 2 brothers and myself, with me being the oldest. My grandmother called my house which was unusual to begin with and told my then husband that I had wanted to visit with my mom and the time was now. In Early August, I'd had surgery for a tubal reversal and 2 weeks later, was in Philly with my mom. Seeing her like she was, I didn't even make it up the 6 stairs to her livingroom, before I sat on the steps and cried my eyes out at the sight of seeing her hair very gray with a canula sticking out of her nose. {Oxygen} THAT was NOT my mother!!! Where IS she??? She's lost forever. I've heard through the years, that lung cancer, when it spreads, goes to the liver and the brain. It hadn't affected her liver. At the time, she didn't know who I was and it upset me. I didn't really "know" what the outcome of cancer could do to someone who has it, until I saw her. I took my suitcase downstairs, where my grandmother had slept and went back upstairs to talk to my mom's g/f. She told me that my grandmother is staying with her sister for awhile, as all of the long distance driving was taking it's toll on her. O a good day, my mom told me that neither of my sisters can't be with her, because the 1 a year younger than me, had a jealous boyfriend. The sister a year younger than her, mom just didn't want to have her there, period; she's nuts. She didn't want either of my brothers, well...because of them being her sons and she'd be embarrassed to have either of them wash her. That's where the dignity kicked in and so, there I was; my 2 sons at home, with my very brittle diabetic husband. I'd gone home 3 times total and one then would spend a couple of hours with my sister when my grandmother came back to be with mom, then one week before she died, my husband called to tell me that I BETTER be home by Thanksgiving, or I BETTER not come home at all!! WHAT?!?!? 1st, I get into an argument with my mother, because after sleeping on her floor in the bedroom for a month straight, I fell asleep on the recliner in the livingroom. I didn't hear her call me, blow her whistle to wake me up. She called the nurse, my grandmother, even my husband, 300 miles away. She SWORE that I wasn't in the house when she needed me to help her use the bedside commode. I love to draw cartoons and I drew Pepe Le Pew on a poster board and hung it to where she'd see it when she opened her eyes. She kept insisting and INSISTING that I left her alone! I SWEAR, as God is my witness, I did NOT leave her alone! I DIDN'T!!! Now I have my husband making demands of me, so I told him, that if it takes TEN YEARS for her to die, I will be here with her til the end! She passed on October 14, 1988. Be back later to finish.


about 8 years, said...

I think my problem is unique but I am sure it is not. My wife spent 65 days in the hospital, 39 in a comma, had heart surgery, kidneys failed and was 100% on life support for 43 of those days. During that time we discovered she had Hodgkins Lymphoma Cancer and started treatment. Up until a few weeks ago I had to do 100% of everything for her, from helping her to the bathroom, to bathing her, to cooking cleaning and all the other things that come with being a caregiver. 2 weeks ago we were told she has Pulmonary Fibrosis and the average length of life for this is 2.5 to 3 years but because she is weak it could be less. Needless to say it has been stressful since last July when this all started. Our kids are grown and gone and I have been dealing with it all by myself. she recently starting doig more for herself and insists on taking the calls from the Doctors and making all her own decisions. These are good things for her mentally but I am feeling shut out. Anyone experience this and if so how do you deal with it?


about 8 years, said...

I am a non certified but I have watched the once a week nurse and the doctors have showed me how to do pretty much everything! I live with an old friend that has no family around except his 21 year old grandson whom has robbed his pawpaw. my husband and I have moved in with this man after coming and going weeks at a time we just gave up and realized he needed us 24/7. my husband works long hours and his house is built like a mother inlaw home an apartment on the side so we have our own little spot and privacy. I have been here now for a year and a half we have been through many surgerys he no longer can drive and barley can even walk has no upper or lower strength in his body but he stills walks very slow and carefully with his walker I do everything! wake him up get him dressed change his super pubic catheder when its needed I bathe him cook clean give medication twice a day walk his little dog a few times a day do his grocery shopping balance his check book put him to bed at night I was packing a wound he got on his behind but that one is getting better I change the drain sponges daily around the tubing of the cath. he has no balance so he is 6'2 and he has lost close to 65 lbs but still weighs 206 and dead weight I'm only 5 foot tall 160 llbs and that is a lot of weight to be catching and pulling and maneuvering ive got a bad back


about 8 years, said...

I went from taking care of both parents for three years prior to my dad's death to now caring for just my mom. She is staying with me, for a month now, because the doctor's felt it was the safest place for her due to the lack of care my sister was giving her, the lack of cleaning, old/moldy/outdated food in the fridge (disgusting), floors hadn't been mopped for months, mold of all kinds in the bathroom among other unmentionable substances around the water handles. Within two weeks of my dad's death, my sister made sure to have my mother close my parents joint checking accounts, have my mother open a joint account with her (which she calls only hers - not hers and my mothers), and make give her financial power of attorney. She keeps my mothers bank statements from her, she doesn't keep my mothers bills paid (some overdue by as long as 10 months), changed her locks on her home and never gave her a key, and keeps both her PO box keys. I don't trust her and have filed a complaint with Adult Protective Services, whom have spoken with my mother. My mother defends my sisters actions. She can't see what she is doing and NOT doing. It feels like no matter what I say, that it just doesn't matter. I feel like all I do everyday to make sure she has all she needs; all my daughter and fiancé do, that it's all for nothing. I don't get time for myself. I feel very hurt. I feel like I need a weekend away, yet feel too guilty to even suggest the idea.


about 8 years, said...

I would highly recommend a new book "A journey to an end" written by Anita Denner Dahlby that chronicles the last 3 years of her father's life. Her personal diary and approach to dealing with long ago feelings about him and how coming to terms with being his caregiver is informative and honest. It shows the many facets that come to light with dementia and the aging process.


about 8 years, said...

Your loved one doesn't have to have dementia, my husband has Parkinson's and these comments also apply in this situation.


about 8 years, said...

I really appreciated that article, as I found most items apply to me at this time. Thank you, I will try and follow through with the ideas.


about 8 years, said...

Anjuka: your husband ignored your warnings, and you shouldn't have to pay the price for his bad judgment with the rest of your active life. If your daughter objects, tell her to give up 3 weekdays & one weekend day to care for him. Those are all 24 hour stays, by the way. She has no right to comment nor make decisions - he is your husband & that overrides children's rights. Besides, didn't she basically imply that it's your problem because he's your husband, too bad, deal with it? Unless she's willing to do the above suggestions or move him in with her, she has no say. You could hire a nurse (I say nurse brcause a CNA isn't perhaps capable of all he needs). As far as I see it, he took a chance, made his bed & now must lie in it. If Medicare or insurance will cover 3 days & a weekend day so you can go out and socialize again, great. But life is too short for you to give up yours to a man who was only thinking of himself when he went down those stairs. Since he could go on like this until you're too old to enjoy your own retirement, I would investigate & place him in an assisted living facility. If he requires more help than living there allows, I'm sorry, but you can't let him take your life down with his. Because what you'll be in ten years is bitter, angry, resentful and physically worn down after doing the work of two people, and even freedom then may not be viable for YOU physically. Remember: we regret the things in life that we DIDN'T do, not the things we did. You can visit him, so can your daughter. It will be difficult to do and you will face much opposition. But at the end of the day & the end of our lives, we only have ourselves, and no one is going to give up their comfort to make sure you're happy. You said he feels bad about the situation he put you two in? Fine, work off of that. Say this last accident, which he was warned about, was the last straw and has given you more than you can handle; something to that effect. Don't apologize and don't let anyone (daughter included) guilt you out about it. And before you start the search process, ask your daughter or find an agency that can provide 24 hour care for him so that you can go spend a week with your mom. An assisted living place or nursing home will free you to reignite old friendships and make new ones! And have a weight lifted off you that will make you stand up straight again, put some spring back in your step. If anyone you know gets nosy about your husband's new arrangement, just look them straight in the eye and say "I made some changes that worked out best for every one." End of story. One other thing: do NOT get sucked into permanent 1/2 you, 1/2 nurse supervision, because if you are there when a nurse is...sleeping, dinner, chilling out, the nurse will be overridden & you will be interrupted or awakened because "you do it better". FYI I hope I've helped you. Feel free to contact me again because I'm in a similar situation only without children. Good Luck! Take Care.


about 8 years, said...

I notice their is no way to give a word of support / reply to others here! I wish their was, Natural caregiver, talking here ... :) seriously, amazing to see so many responses here, and so much pain and isolation. I have felt all these feelings at different times. For empaths the mental health issues that arise from caring for others with mental health issues, is profound, I feel the experiences of isolation and lack of support can really hurt. and it takes some creative imagination and community to rebuild oneself and discipline to go toward positive resources, al - anon, yoga, meditation etc, to lighten oneself. Addiction to quick and easy feel goods cigs or glass of wine became a problem for me. Meetings are free and comraderie and a is spiritual practice is helping. Online Skype or Chat room for Adult Children of Alc/Dysfunction /Al -Anon available.


about 8 years, said...

My husband fell and broke his neck 2 months ago, going down a flight of stairs he had been asked not to go down as he is partially paralyzed already and taking a big risk. I had been expecting a disaster at some point because he often takes chances, believing he is always going to bounce back. He is 73 and the past 6 years have been all about his health...leg paralysis and weakness since he was 27, prostate cancer, major back surgery and now this devastating fall. I have always picked up the slack for him because he needed help with things and I was his wife, my job was to be a partner. I am 13 years younger and we have been married since I was 18, a long and mostly good marriage. But now I am finding myself overwhelmed and all the above emotions run thru me daily. I feel so alone as I watch my friends and neighbors go on trips, go to dinner, make plans to LIVE and enjoy their lives. I am trapped in a house with a man who needs help with every single thing a person does in a day. He is trying to walk and overcome the effects of this fall, but it is not going well and the hope he will ever get around without a wheelchair and help with transfers and dressing, etc. are starting to fade. He feels bad for the situation he has put us both in, but here we are. He is otherwise very healthy, so I know this life could go on for 10 or more years, all the while I grow older and more isolated and bitter as I watch the life I waited for (kids grown, financially sound, retired and "free") walk right out the door....hi-jacked was the perfect word. My daughter lives close and she helps a lot, but she also stresses how this is "too bad, just deal with it, I will not put my dad in a nursing home". I am not asking to do that, I just want some compassion and some real help, some freedom....I am also 2500 miles from my 89 year old mother and I fear I may never get free to see her again, my heart is breaking over this.


about 8 years, said...

My husband has alzheimers...to be a caretaker is beyond hard. Each day is a challenge...I pray for patience...it is hard to come by. My children help as much as they can..thank heavens. I am very lonely but to go with friends makes me feel so guilty. I am still working and hope I can continue.


about 8 years, said...

MY HUSBANDS HEALTH IS GOING DOWNHILL MORE AND MORE . ADD TO THAT THAT HE IS A LAZY AND SELFISH PERSON MAKES ALL MY EMOTIONS ON EDGE . HE HAS GOOD QUALITIES . IN THE BEGINNING OF OUR MARRIAGE I CATERED TO HIM EXTREMELY TILL OUR KIDS GOT IN THE PICTURE. EVEN THEN HE WAS CATERED TO A GREAT DEAL. NOW THAT HIS HEALTH IS NOT THE BEST HE IS USEING IT ALSO ON ANYONE TO GET WHAT HE WANTS. MOST PEOPLE SEE HIM AS A HUMOROUS KIND EASY GOING PERSON. I KNOW THE OTHER PERSON . LAZY AND SELFISH. ALL THOUGH IN HIS LATER YEARS HE HAS REALIZED SOME OF MY WORTH. AND IS MORE THOUGHTFUL . HE WANTS TO PLEASE ME MORE . I THINK WAY BACK IN HIS HEAD THAT IF HE ISN'T MORE CONSIDERATE I MIGHT LEAVE. SO NOW HE ASK WHAT DO YOU WANT. I FEEL LIKE I DONT WANT TO HURT HIM OR PUT HIM IN A BAD POSTION AT HIS AGE 76 YEARS I'M 68 YEARS. BUT I DON'T HAVE THE ENERGY , EMOYIONAL ENERGY , PHYICAL ENERGY. AND AFTER AL THERE YEARS I WANT SOME TIME FOR ME AND HAVE SOME THINGS FOR MY SELF . I DO'T KNOW HOW LONG I'LL BE IN THIS POSTION. BUT I DON'T THINK I'LL LAST MUCH LONGER.


about 8 years, said...

I've been a caretaker since I was six years old; I'm 64 now and the emotions talked about in this article are with me in spades daily--moment-to-moment. I am tired and lonely/isolated--never married--never even dated--a young child can't understand what's happened/happening if their life has been hijacked and her parents' lives are so much more important than the ghost of hers...All those that I'd grown up with are gone, except a brother who has a life of his own 1000 miles away, and my 95-year old mom who doesn't even understand what she's done to me--and never did. My now-deceased sister's and my brother's children don't acknowledge our existence. I desperately want a service dog to help me cope day to day and for the future--if I have any--but no money or resources. I AM hanging on, but it's very very hard. I lived with family values and caring being of the utmost importance--I wouldn't change that, just how much they help or hurt the people involved. There has got to be a better way than all or none. I have a serious operation due in January--maybe I'll die before my mom--and never have lived. What will my life's struggles be worth then' what life lessomn's will I have learned? I am very afraid!


over 8 years, said...

I took on seeing my friend through radiation followed by chemo. The illness she has is incurable. The chemo and radiation will alleviate the symptoms and possibly slow down the disease process. There are siblings of whom I have not seen a one, but I am wearing down. I can feel it. I need to take better care of myself and my emotions, but I do not know how.


over 8 years, said...

I took care of my termanilly ill mother at the age of 24. Then became an oncology nurse...it's a love/hate relationship. Chronic caretaker...lol. Things were and can be so draining. The best advise that I got, that I give my patient's family members who take on these roles, is self preservation is a necessity. it is ok to so no, I can't do this. Sometimes, saying no allows you to be a wife still, a daughter still ...being someone full time caretaker is hard. Get any help that you can to make it earier for yourself. Do not feel guilty getting help to perform ADLS, cook or clean...Inlist anyone who will help even if it is helping your household while you do what you feel like you have to do with your loved one. You are a good person...you are only one person and you need to give yourself a break and a hug sometimes....


over 8 years, said...

I did yoga for many many years, ( I am now 83) and it was a great part of my lifer. However, I am now alone without transportation and feeling quite isolated and I miss yoga very much.


over 8 years, said...

I experience all of these emotions daily. Mom had cancer, was in the hospital after surgery, died twice and they saved a woman I cannot deal with. I lived with her for 5 weeks until my brother came for 2 weeks, now it is off and on. My spouse has been supportive, but how long can he deal with it? I am exhausted. Mom was placed on meds to manage her mental issues, but refuses to take them. I am on meds now because of her. She totally sucks all my joy for living and leaves me with nothing. I cannot get her to use he oxygen or bipap as she is supposed to, because she thinks she will get addicted to it. When she does not wear them, I pay the price with horrible confusion, argumentativeness and her nasty tongue. I am an RN and I feel as if I never leave my job. I go home to what I was just doing at work. I am so frustrated, angry and tired. I have panic attacks off and on throughout the day. When my cell or home phone ring, I literally have a melt-down. I just know it will be about her or from her. My brother is 2500 miles away. I am so tired of this life. I did not sign on for this kind of a nightmare. I would not have worked so hard to get her home if I knew at the end of it, I would end up with a woman that is mentally not right. I would make her incompetent, but she would make sure to wear the oxygen and bipap before going to court. This is my greatest frustration, a lot of this is totally avoidable if she would just do what she needs to.


over 8 years, said...

Hi everyone i take care of my 70year old mom-in-law, she has 3 daughters older than me but none of them even bothers to visit her at home. if my husband and i don't take her to their house they would never see her, i also work so during the day my hubby tends to his mom, i bathe her, cook and clean the house before and after work, sit with her during dialysis every Saturday, every day after work she nags at me that something else needs to be cleaned or washed, by the time i finish my normal cleaning " dishes, sweeping, wiping furniture's, mopping, cooking" i'm exhausted, i start work at 7am finish at 4:30pm - 4: 40pm, i arrive at home roughly at 5pm or 5:30pm. i trying to fall pregnant and when she doesnt get her way she says stuff like my "nation' doesnt deserve to be around thats why my womb is rotten, lol yet my hubby has a low sperm count. i just feel down on some days, yet i still dont have the heart to leave her in a nursing home, just for the record im 25 , i have been living with hubby since my 19th bday


over 8 years, said...

I love my family and my husband passed away about 20 moths ago and I'm living with my family and they have been good to me and my 17 year old boy prior to my husband passing, well to get to the point, I always was the aunt that cooked, baked and kept my house spotless and loved my family to be around, have sleep overs the 1# aunt, well now, I here little comments about me,like the house serve the, another phrase I much rather not say!!! But it's to the point as if it is aspects do, down to the young ones,my feelings are getting hurt a lot, and it is like no one else has noticed,


over 8 years, said...

I want to vent! I do NOT NOT and NOT want to take care of my sick mother. She has brain cancer. We never had a good relationship. Even though she is not a complete narcissist, she does have narcissist traits. I feel resentment towards her and because of this I take care of her out of obligation which is no fun and only stress. I wish I could take care of her out of love, but no matter how much I try, it doesn't work. Any kind of rude, victim type, emotional black mailing attitude I just feel like abandoning her. My brother lives some what far away and doesn't help very much, his life is too busy and I have to take the burden because I live next to her. It's only the two of us. I am a single mother of two young kids. I now feel I do not have a life because I have to take care of someone who says she loves me, but doesn't really show it. She acts as if it's my responsibility to take care of her and that I would be the worst person in the world if I abandon he. Or maybe this is what I feel also and what the rest of the family expects from me. With cancer or not, she is a very difficult person to be around. I want to travel the world with my kids, but how will I do this if she depends on me? I feel guilty a lot of the time. I feel resentment and anger. I want to take care of my health, but I worry if it will be possible with all of these negative emotions and stress. I most of the time feel like running away from all of this but at the same time I think there is a lesson to learn here, or I must find a way to heal and be at peace with my mother. But for 42 years I have not found healing at all and I just have this urge of getting away from her. I some times do not KNOW WHAT TO DO! Does anybody feel the same way or can shine some wisdom on this situation of mine. Thanks a lot.


over 8 years, said...

I cared for my husband almost 7 years until he passed. He was in a wheelchair for the last 5. The pain and guilt were suffocating at times and I wish I'd reached out and gotten some help or had someone to talk to. I thought I could handle it, and did, but the stress was overwhelming. That's why I help others now. No one should go through it alone.


over 8 years, said...

I have been taking care of a friend of mine. She is 93 and has Alzheimers. When we get together it's like oil and water trying to mix. I'm at my wits end and do not know what to do. I promised her husband o his dying bed I would take care of her for the ret of her life. She was the mother I never had. This is just the tip of the iceberg. There are more emotions flowing from my heart than youu can imagine.


over 8 years, said...

I know I get so depressed .I've been taking care of my wife for 15yrs 14hrs/day.Just seeing somebody you love being in a minimal vegetative state really takes it's toll. I can't bring myself to putting my wife in a nursing home because they will just let her rot away.My wife does't speak She,is incontinent, can't walk,can't swallow,and really can't do anything. They really don't have any support groups in my area for caregiver's that take care of tbi patients. I was going to a caregiver support group but all of the other caregivers there had love ones with dementia or Alzheimer's which is completely different from what I'm dealing with.


over 8 years, said...

Thank you so much for your information. I'm carrying for a 90 year old mother. I'm an sometime so overwhelmed with work and caring for her. I divorced my husband of 29 years because he is abusing me verbally and physically abusing my mother. I have to work to survive and put could on the table. My mom has dimentia. She is to be so active but now our communication is one way. She can talk and I listen but the moment respond she can't hear. I get do frustrated and don't know what to do. I have to talk so loud and she gets hurts and tell that she can hear me. I can't reason with her any more.


over 8 years, said...

I lost my husband after 151 days in the hospital, then my father on my kitchen floor four months later. My mother seemed to decline relatively instantly. She is diagnosed with AD,brain injury, diabetes, extreme anxiety and all the consuming behaviors associated with all. She is also on hospice. I lost my home after my husband's death, our cars, jewelry (what little we had) and virtually everything else. I care for my mother 24 hours a day. My mother will not stay with anyone for any period of time no matter how long, so I have to take her with me everywhere. I can not relieve myself without her standing right next to me. Last year I lost my second job because mom was having another meltdown with the aide I was paying out of pocket for so I could work. She does not qualify for Medicaid as her and my father have property in the Carribean and since my father passed, it is in forced heirship. The two siblings of mine will not sign over their forced inheritance so we can sell the property and have the profits go to mom's health needs and other daily living expenses. They did not work for that property and neither did I and it is meant for my parents to have a resource for their times of financial health needs. I have run out of my savings and can not afford another attorney down there to fight this. No one is helping me with mom. Hospice is pleasant and I love the aide that visits, but volunteers to come and assist are rare, 4 hours in 2.1 months. My mother speaks English rarely now and I have trouble understanding her daily as hospice can not communicate as they have no staff that speaks Spanish. Fighting for SSi for her, the other two do not help and have limited love for my parents when both were alive. My father and mother always knew I would be caring for one of them when we can to this juncture, however refused to plan appropriately for this time. I am doing the very best I can with so many odds against the opportunity to survive. Fighting off depression. loneliness, and all the other caregiver burnout symptoms. I know my life was over when my father died. I was picking up my pieces from my husband's death with was horrible, and had to stop because mom needs 24 hour care. Be well caregivers, try your best.


over 8 years, said...

I'm 50 years old and have a boyfriend and can't or don't feel like I can marry him because I have taken care of my dad till he passed and mom has dementia but not the worst stage and feel guilty to put her in a home. I need help to get out of not wanting to care for her anymore.


over 8 years, said...

Hi there , i'm feeling so trapped with my mother having dementia . She is in the early stages of dementia . I feel that my life is being destroyed as My mum won't make any friends . If she doe's make friends she argues with them and turns them away for no reason at all . She argues with me and my sisters partners and tries to destroy our happiness . I'm just feeling depressed and angry because she is so dependant . I'm thinking of studying for a new career and i feel that I won't beable to do this . Please could you give me and my sisters any advice because arguments are happening between us . Kind regards Kate


over 8 years, said...

there is no god. are he would not have done this to my mother or me. 3years of no life taking care of bedridding mother just my thinking.


over 8 years, said...

do not give up. get yourself into a support group. This has been very helpful for me. You can do it. I encourage you to live in the moment, take care of you. Sending love , compassion , hope and healing prayers for you. make a greatful list everyday.


over 8 years, said...

I'm ready to give up. And know I can't siblings which by the way are the favorite children (I'm not) but they're no help. Financial, assistance or visits are non existing. They have family of they're own and I adopted my nephew to get him out of my brothers care. I work take care of mom, myself (cancer ) and my nephew alone no one to talk to to help shoulder any of the stress. I feel terrible about the future of our lives. I hate the person I am now.


over 8 years, said...

My husband and I have always helped our parents despite having siblings ive always accepted the responsibility. A year ago my mom was put on hospice due to copd. My dad is also on hospice now due to parkinsons disease. My husband and I put our house in foreclosure and moved 50 ft out my parents back door a year ago. Between the stroke my mom had and my dads accusing and paranoia from parkinsons I feel anger, resentmant and guilt not to mention depression. I recently quit my job of 25 yrs after moms stroke. Now I feel trapped. I feel like what I do isnt good enough my sister only comes around when theres a crisis. When thats over shes gone. My brother moved in recently to help and is a big help. But he and my husband have to work. My mom and I was once so close but now it feels strained. Again with the guilt. And depression. Alot of resentmant towards my sister. But what can you do.


over 8 years, said...

My mother has been a caregiver for my grand-father for about 11 years who is bipolar, invalid, and is showing signs of dementia. I witness the hardships of caregiving and the toll it takes on the caregivers childern. Why is this never brought up? I feel so resentful and angery with my grandfather for not taking care of himself while slowly sucking the life out of my mother and I. Is this normal!? What can I do? I haven't had a sound sleep in over a year.


over 8 years, said...

My ,other had stroke on left side she has a feeding tube my older sister and bothe want to throw her in nursing home..but my mother wants to go home I told her I would move in with her how can I stop them?????


over 8 years, said...

I'm so stressed about this. I'm 20 and it's been a year having to care for my terminal ill mother. I've recently been frustrated at myself and at her. It's just that I want to do other things but there's no way I can. I have two older siblings and they don't help at all, I have to do her daily work and my dad helps as well when he gets home. I can definitely admit I've felt all those emotions. I really feel like I'm going insane, I've already had to become a part time student because my father kept grilling me about doing more. Sorry I'm complaining but I was just looking for something that can help me cope.


over 8 years, said...

I took care of Mom for over 10 years at home. When she could no longer walk, Dad & myself had to place her in a board & care facility. Mom has been away for almost 14 months. I visit her daily as she is close by. Mom is in a home with a total of 4 residents. The care she receives is excellent. All of Mom's disease has been a challenge. My siblings have not helped. I have focused on Mom & helping Dad through this challenging event with prayer & meditation. I Keep focused on the great life Mom & Dad have given me. Everyone makes choices to help or not. I have chosen to help . This is very challenging. The Alzheimer's Association is of great help. Their number is 800 272 3900. I also attend a support group. Many blessings of love & great compassion to all of you.


over 8 years, said...

this is so hard,to ask ,but how do I know when its time to put my 89 year old mother in a care center, lately she seem s totally lost, waking people up at night and saying she has no food ( she has plenty ,she can eat ) ,also asking them to take her to the hosp ,by time we get there this morning it was at 1:00 AM she was back in bed ,fine ,then when we left I found out it started all over agin ,,some of the people where she lives, want her gone ,,but she would have to give up her cat and her little apt,,I really don't know what to do ,,any ideas would be appreciated...thank you ...


over 8 years, said...

this is so hard,to ask ,but how do I know when its time to put my 89 year old mother in a care center, lately she seem s totally lost, waking people up at night and saying she has no food ( she has plenty ,she can eat ) ,also asking them to take her to the hosp ,by time we get there this morning it was at 1:00 AM she was back in bed ,fine ,then when we left I found out it started all over agin ,,some of the people where she lives, want her gone ,,but she would have to give up her cat and her little apt,,I really don't know what to do ,,any ideas would be appreciated...thank you ...


over 8 years, said...

I really feel for everyone going through this and I believe I'm about to join your ranks at age 31, maybe I already have and don't know it yet. My girlfriend of 4 years is dealing with parents who divorced last year and both have been showing signs of mild dementia at least since I've known them. She is by far the youngest of their 6 children but the only one who will give real help or care. I'm along for the ride and it is a bad one. In the past 2 years she has been very sick as a result of balancing care giving and her job as a travel nurse, which is our only income 6 months a year. I take care of our dog, cleaning, meals, home and auto repairs and driving everyone to doctors when she works. So far I'm perfectly healthy but this will take it's toll. I no longer have close friends, can't get a job and my family thinks I'm making a mistake. Sincere empathy to those entrenched in this painful process. Thank you for letting me share/vent.


over 8 years, said...

RCG: I am listening to your problems and I understand completely. The same senario is happening to me. I am the caregiver while a sibling takes off on vacations and when home, gives excuses. I have seen this behavior throughout this website. It must be common. Hang in there and I will too.


over 8 years, said...

i get up set with my mother went not thinking go to bath room and just wet the paper panty for her she sit and watch tv not think about she be wetting her pant and the chair like she just don't care about thing i got up set and yelled at her i told her i want my real mother back but that is never going happen i get stress out and loss my cool there is no one here to help me with mother i have take walk out side just to cool down and tell her i love her


over 8 years, said...

I am beyond frustrated ,still taking care of my mom who just turned 89 .. find out my brothrer ( who is 4 years older ) and his wife went on 10 day crusie I try to get them to come up and give us some time off, just a weekend as my husband and I work full time plus care for mom .. but they wont come 6 hours up here unles we are going to be here as they don't want to have the responsibility ,, then when I said I might have o get some alternative help for her ,,they all get upset.....anyway thank you for listening to my problems...


over 8 years, said...

Thank you for sharing all your experiences with us, reading all this has made me realize that I'm not alone, I take care of my aunt who has chronic pain caused by herniated vertebrae and she has some really bad days where she only wants me to take care of her, i try to understand but it's taking a toll on me and my relationship with my boyfriend, i can't make a plan to go out anymore because my days depends on wether she is having a good day or a bad one where I have to be stay by her side all day, i spend hours applying hot compresses to control the pain even for a couple minutes, but seeing someone who you love so much going through so much pain can take a toll on anybody, i feel resentful because I feel that my life revolves around her and her pains but then I feel guilty for feeling that way and I cry and cry while I spend nights where I can only sleep 2 or 3 hours before I have to get up for work and start all over again. Thank you all for listening and I hope we can all find the way to take care of ourselves in order to keep taking care of our loved ones. God bless you all for being such kind souls for those who need you. Love. V.


over 8 years, said...

If there is a God ...he, she or it has a heck of a sense of humor!


over 8 years, said...

Believe it or not, you may even accidently find out through Facebook that a sibling took a vacation very close by for 9 days and never even contacted you to see if they could help in some way. If seeing your siblings smiling face on Facebook with a friend only an hour from your parent's home where you are the primary caregiver and not telling you they are coming for 9 days doesn't destroy your faith in people (and everything else) ...what would? But hey! At least they had a good time!


over 8 years, said...

I really appreciate this forum. I too am a part time caregiver. Our family lost my wonderful dad 4 yrs ago and after 60 yrs of marriage, my mother feels lost and started declining. She lives in a nursing center with the best of care but still complains that it's not home. The guilt eats us up but we know it's not safe for her to be living with us. I am working hard to make sure her life is stimulating and we we include her in all events, but she can't walk anymore so it's becoming more difficult to take her anywhere. I am in danger of the repressed anger mentioned here because I am very upset with her decline. How dare she get old and I have to watch it? It's heartbreaking. Thanks for listening.


almost 9 years, said...

I am eaten up with resentment. I have children who are successful contributing adults with nothing in the world to worry about. But they have abandoned me to care for their ailing mother who was for years the primary caregiver for our Down Syndrome daughter. They have not only abdicated their responsibility to their mother and sibling, but they strung us along for years about keeping the family together and helping out with their sister. The ugly truth is, once they had a way to leave the home, they disconnected, but not before they emotionally drained us. My only stable thought about their behavior is that I knew their biological fathers, and they have definitely inherited the "nature" of placating, lying, and disconnecting instead of any hard work that involves their families. Like their fathers, they are more interested in their own personal lives and have no problem leaving us beind so they can pursue selfish goals. I should be proud of their achievements and ability to create a life for themselves. But by turning their backs on us they have proven that family was only important to them when they were on the receiving end of family blessings. I don't plan to "get over this" because they were too close to me, too able and intelligent, were brought up understanding family and social values, and yet chose a chicken-shit way out of a situation that would have been no big deal if only they could have come together for the family.


almost 9 years, said...

Caregivers are not made they are born, it's a gift a talen


almost 9 years, said...

My mom had a tumor removed from her pituitary gland about 14 days ago. I have been struggling with trying to go visit her in the hospital as well and continue my day to day activities. I feel bad when I don't go see her. My day to day routine is in shambles trying to cope with this. Does anyone have suggestions on not feeling like you are forgetting about her because I don't go to the hospital. My job has been understanding but of course jobs dont really care because there is always work to be done. Please help


almost 9 years, said...

I'm taking care of 86 year old Husband for 10 years and I'm so emotionally rattled and can't take The depression I'm even on anti depressants


almost 9 years, said...

My father in law passed away about 2 1/2 months ago my wife and her site stayed with her for about a month 24/7 afterwards, which I thought was wrong. She has a mild case of copd and is playing it and everything else to the max trying to make them feel guilty which has began to put stress on our marriage. She refuses to move into assisted living and wants everything done on her terms live at home her daughters to stay 24/7 of course splitting the times.


almost 9 years, said...

I have been taking care of my mother in law for a little over a year now. She was diagnosed with stage IV lung cancer and she moved in with us. Chemotherapy has caused some damaged and now is unable to eat or hold onto anything. She needs using the bathroom, bathing, eating. I am a stay home mom with four children, 2 of them are toddlers. I am extremely overwhelmed, for almost a year i was the only caretaker. I had a nervous breakdown a couple of months ago and i asked for help. I take her to my siser in law in the weekends now but its not enough. I resent having her in my house. She is rude to me, calls all day long to do stuff for her, and complains all the time. I have to leave my children alone constantly to care for her. My sister in law said that i spoil her mom too much and that i shouldnt kill myself for her. She wont take her because she has to work and i really dont think she wants to. i dont know what to do. Her sole presence is consuming me. I have no life, i have no energy for my kids or my husband. Sometimes i feel like packing a bag and going somewhere far away from here, but i cant do that to my children. Its not their fault. My mother in law is draining my life away. We were never very close but now she clings to me because I am the only one who shows her patience and love. i get headaches and i feel shaky, i forget things easily, i feel lonely too. I used to be strong and energetic, a multitasker, happy. Now all i want to do is hide and cry. Thanks for the post, at least i know im not the only one.


almost 9 years, said...

I'm feeling all of those emotions right now and I need a respite from it all.


almost 9 years, said...

My momma passed away a day and a half ago. She was diagnosed with alzheimer's dementia 8 years ago. For the past 4 months she has had pain that kept increasing. Because they couldn't ever find anything, and sometimes she couldn't tell them exactly where the pain was, the drs kept brushing it off as alzheimer's related perceived pain. Maybe she's sleepy or hungry they said. After a visit to the ER and an abdominal CT scan, the lower lung showed some questionable spots. She was diagnosed with pneumonia and they recommended a follow-up CT when the 10 day course of antibiotics were completed.the follow-up chest CT showed numerous lesions and masses in her lungs that had also spread to other organs. On March 20th her dr called with the results and a "there's nothing we can do" A second opinion concurred with the diagnosis. The family opted not to do a biopsy because all that did was stage the cancer. We already knew it's stage was iv or end stage. By the time of the diagnosis that evening, momma was in severe pain So we took her to the ER for pain management. March 22nd momma was sent home through hospice. She passed away on March 27th. 8 days from diagnosis to death. I was her 24/7 caregiver for over a year. The amount of guilt I have is crushing me. I should have done so much more. Not let the drs get away with "maybe she's tired or hungry". I'm devastated. I'm lost. I'm heart broken. I'm numb. I don't know where to go with this....


about 9 years, said...

My husband is 47 suffered a massive stroke is on kidney dialysis and can't walk put him in rehab to learn to walk and all he tells me is that he wants to die he wishes he was dead we have 3 amazing teenagers together too I know he is going through a lot but so are we never thought this is how life would be at 46. Wish I would wake up and think or believe this is all a dream . I just want my husband back before this all happened 4 years ago ! Life sucks it really does I haven't been able to enjoy life as I used to know it too young for my family to experience this we are good people why us


about 9 years, said...

How to take Care of Emotions : Try and have a balancing force in life. Your balancing force can be hobbies like music, painting, swimming, http://dailycome.com/how-to-take-care-of-emotions/


about 9 years, said...

I didn't mention that not only am I the care giver for my mom....with my husband being my full support.....but I have also adopted my 3yo and 11yo grand daughters.....my hubby and I are retired, and starting a new family, and caring for an aging parent.....not exactly what we planned. I deal with all of the listed emotional issues every day....even with my care of the girls. I am stretched pretty thin these days......add that I am a breast cancer survivor, and that my husband just had to get a pacemaker put in a few weeks ago....sometimes I feel like it all spins so fast that I can barely hold on....


about 9 years, said...

I am realizing that what I am going through providing care for my mother is okay, that what I have been feeling is not because I am less than capable, but is because I am dealing with real, daily, demanding issues. I am truly going to try to do more to take care of myself.


about 9 years, said...

Well some of you have read a few of my post. I am here once again to encourage and plead with every one of you dealing with the care giver roll, to please seek every type of help you can from anyone and everyone. As of March 11th 2015 I will no longer be my ex's caregiver and or share a home with the man. 15 yrs of angry outburst an intimidation, mental an verbal abuse took its toll on me. I have a restraining order against him, tell the end of March 2015, but I will be asking for a full yr. I am here to say I have went threw every emotion in this article an more, my daughters have been threw every emotion plus more due to the fact that they grew up with him aka Mr Grumpy. I am here to say if you are being abused in any way by the person you are caring for, you don't have to set back an take the abuse for years, get help and if you have to a restraining order. The YWCA/YMCA has free counseling and resources for those of you that are or have been abused. Seek help before it is to late for you and your loved one, there is help out there, even some free help. Good luck am God bless.


about 9 years, said...

I struggle with each of these daily and it has caused an immense amount of stress in my life and in my marriage. I can never seem to feel as if I have done enough. There is always more and it can always be better. I am trying to cope with all seven of these emotions and keep on a happy face, but it is damaging my health, life, and marriage. I feel angry, resentful, lonely, and every other emotion that was listed. Until now, I thought that I was the only one to feel this way. There is some comfort in knowing that these are real symptoms that real caregivers have. Our loved ones are experiencing the physical pain and torture, but we as caregivers experience the mental and emotional prison that we put ourselves in.


about 9 years, said...

my mother was diagnosed with early onset altzimers. She is very repetitive, throws my personal stuff in the garbage and so many other things that drive me bananas. I feel like my blood pressure rises from the anger that just rushes thru my body. I can't take it anymore and I'm her only daughter and we are broke. I barely make ends meet. I'm overwhelmed and feel like I'm going to die before she does. Lost and in pain Barbara


about 9 years, said...

It's sad that I'm getting comfort from reading all the problems everyone has. My mom has had Parkinson's for about 20 years, since my dad died. She also has depression/anxiety and starting some dementia. She ended up in a nursing home after falling at home. Went into rehab and then said she needed more help. My mom has always been sickly with headaches, etc. Now realizing she has had the depression/anxiety most of her life. She is very needy & its been extremely taxing and challenging for me. My brother is 6 hours away and doesn't want anything to do with her care. My mom makes me feel guilty every time I visit her. Saying that I promised I would never put her in a nursing home (which I know I didn't). Also saying I've changed, I'm not there for her, etc, etc. I'm only 10 minutes from her, so I'm there usually 3-4 times a week. I dread going and then dread telling her I'm leaving. She will call and say "help me" and then hang up. Her Parkinson's has progressed the last six months. She cannot move much on her own or eat by herself. I feel bad for her, I really do, however I have been dealing with her for so long...It's like the story of "calling wolf"! She hangs her head most of the time and to hear her you have to really bend down to hear her. My kids don't like to visit her. My husband has been a saint in supporting and listening to me and visiting her once a week or so. In the same breath I have to tell you that my mom had always been my best friend. We baked Christmas cookies and went shopping and other outings. I've been told by others that she has always treated me that way and now its just getting to me. It feels good to just say it out loud to someone.


about 9 years, said...

In the past three years, my brother nearly died twice, my mother went into severe decline and my husband was diagnosed with Parkinson's disease. I spent the better part of a year and a half travelling across the country to help care for my brother who survived and my mother who died. My husband was forced to leave his job of 40 years at which point my closest friends implored us to move back to where we had lived 20 years ago because we had such a " strong support system". It has proved to be a good choice for my husband in terms of medical care, but in fact I have no support system here. My friends all have their lives and my best friend has thrown a bone to me now and then, but is busy with her life and new live in boyfriend. I have been so supportive of her through her many ups and downs, I " expected " she would be the same to me. When I mentioned one day to her that my husband had an especially tough day the day before, she didn't even respond but asked if I liked a dress she and her daughter found. I know that this care taking thing is not for the faint of heart, but I just feel so abandoned and misled. My cousin says this friend was never truly a good friend. I thought she was. I wonder how much has to do with having an ill husband. Suggestions?


about 9 years, said...

I see two futures, my loved one will die, but I'll be too old to follow through on any of our dreams.or I will die. Which one should I hope for. I'm feeling hopeless.


about 9 years, said...

After nine years of loving my soulmate and husband I had to make the decision to place him in a nursing home. I thought it was the hardest thing I ever had to do. Not yet. Then because my serious health I have to pack to move to another state to live with my family. When I starting packing up all the beautiful pictures of us/him that is when the grief really started to hit me compounded by his phone calls from the nursing home to come get him and not let him die there. I have cried for days. Then I saw this website. It explained every emotion I have gone through in the last 4 1/2 years, 3 surgeries and a massive stroke that my husband suffered. I hope that my pain will eventually go away and people will stop criticizing for me having made the decision that I did.


about 9 years, said...

BTW my mom is a very courageous sweet lady..Everybody who comes into contact with her falls in love with her. Mom does not balk at the idea of living in a nice nursing facility or having in home professional care around the clock..She realizes that her care needs have become very heavy and impossible for one live- in person to meet.. Even if the live -in person has/had nursing experience, there is only so much that one person can physically do in 24 hours.. So our main problem would be funding and availability of beds in nice nursing facilities.. Medicaid has denied Mom's application.. We 2 children have no way to fund her care privately unless or until we win a multi million dollar lottery..


about 9 years, said...

I enjoy this website, it is very informative.. My sister and I are facing the possibility of being full time care givers to our mom who needs total care..At some point Mom may be discharged from a long term care facility to home after her Medicare funded days are over.. Mom may be coming home without the ability to stand up, or sit for any length of time...Or to turn herself in bed...At this point, she is incontinent of urine and feces and she has an unstageable sacral wound that looks bad..She continues to be totally dependent on people for all of her ADL's except feeding herself.... Mom does not have dementia.. Long term funding for being in a nursing facility or for professional home nursing / custodial care/wound care is not available to us thru Medicaid..... My mom may have just a short time on this earth...Or she may have a few more years left..We don't know, it is up to God....My sister and I are overwhelmed at the possibility that our lives as we know them may change... So my sister becomes very upset when I try to talk to her about this situation..I feel kind of abandoned, because I can't talk to her about Mom's future or our own.. So I talk to/write to two or three close friends who say they are honored to read/ listen and give me feedback to problem solve if need be....One of these friends was a full time caregiver to her own mom who wasn't total care but had lost the ability to live alone safely.. I don't want my friends to become tired of listening to me..So I will limit my discussions of this topic to them.. I am beginning to think I am a weak or bad person for having the need to vent and talk about my feelings.. An example.....In my sister's presence , away from Mom's room, I was mentioning something about our abilities ( my sister's and mine) to travel back and forth to be with Mom..My sister quipped "Don't give Nurse A*** your life story " ... I know part of a nurses job is to provide a safe atmosphere for patients and family to vent feelings/problems..To lend new perspectives when possible..To provide teaching moments.. So I am beginning to feel very guilty for wanting to talk about my feelings.. I feel very guilty for being pragmatic and wanting to know what is expected of me.. I like to pre plan and work out the logistics of any situation whenever I can..I know that pre-planning is possible, even in this awful situation of Mom's.. I want to figure out what is expected of me as a caregiver.. I want and need to reconcile what is expected of me with what is reasonable given my strengths/limitations ( health, finances, distance of my home from Mom's)... I just feel so guilty and evil and like I am jumping the gun for having all of these thoughts swirling thru my head..


about 9 years, said...

I feel devastated I have just put my friend in permanent care after looking after him 24/7 for 5 years he is only 44 and I feel I have made a big mistake,He has only been in the home for one week and I feel like the home is shutting me out and I feel like they are taking my rights away he was in respite for 3 weeks before then and I was happy with staff and the way they included him in activities which is the reason I made the final decision but now he is permanent they want me to stay away for awhile because of his changing emotions which he cant help because of his condition I cant stop crying


about 9 years, said...

So how to you cope with a husband that resents the fact that I can't give an exact date when I will be home. I live 5 hours away and my 93 year old mother broke her hip and is in rehab and my 89 year old dad has dementia. I am an only child and my only child lives 1600 miles away.


about 9 years, said...

My mother in law is dying, and I just gave birth to a baby girl. It's SO OVERWHELMING! My husband is her only child and works all day long.now all of a sudden I'm a caregiver without a choice. She had to move in with us. I know she's so near death it makes the house feel depressing, I'm scared to be close to her and see her die. It's my biggest fear. I use to watch scary movies and all I do all day is imagine the worse possible scenario. I feel like I can't even enjoy watching my baby grow I'm so worried about her all day. She no longer eats or drinks anything. Just now she was screaming her brothers name, and he doesn't even live here. I'm so freaken scared it gave me chills and goosebumps and I ran to my room and locked myself. I don't know what to do, I've praying to gain strength and comfort but I'm still scared to be around her. I feel extremely terrible, I just want to cry for the rest of the night. I feel like a terrible human being for being scared of her.


about 9 years, said...

I really enjoyed reading this page which helped me a lot.Thanks


about 9 years, said...

I feel like there are no more perspectives in my life. My only family are my parents who are elderly and sick. My mother has alzheimers and my father has parkinsons (and dementia). They live at home and once a day a paid caregiver comes to help them wash themselves. It is very expensive and eventually they will need 24 hour a day care but we don't have the money. This puts even more burden on me, I am 40 and haven't started my own family, something that seems very unlikely now. It tears me up to see their situation and I simply see no perspectives for myself anymore..i will probably have to give up job when the situation gets worse to care for them full time. I am very isolated and have very few positive experiences in my life, I help them as much as I can but the frustration, guilt, overwhelming sadness and bleak outlook for both their lives and my own makes me feel that life is just not worth living anymore. I feel completely alone.


about 9 years, said...

Thanks for the article. I feel trapped, as I will never get a chance to live my life. I lived until the age of 29 with my mother, divorced, never remarried, who lives with her own mother and her disabled sister. We took turns caring for them while I studied and worked. My father didn't remarry either, and lives with his own disabled mother. I'm an only child. I lost my job, and I was considering going abroad because the outlook is very bleak. But my mother is starting to have health problems herself. I'm going to stay at her home for a week to take care of her, her mother and her sister. My nightmare has begun. My parents have no one else, and don't have money to hire someone. Neither do I, since I've lost my job, but I can't even get a chance at another one since I can't leave the country. Most of my friends are expats, and nag me daily asking when I'm going to leave. I'm not married, I don't plan to, I don't plan to have children. I just wanted to be independent... I feel like dying myself.


about 9 years, said...

you nailed it!..."..thinking that I am a BAD daughter.." This is the worst of feelings!...all of this anger and resentment and complaining about being the sole family provider and caregiver to my husband makes me FEEL like I AM a BAD person, a bad mother, a bad wife...but I KNOW...I KNOW in my heart that I am NOT... I am always there for everyone...taking care of everyone...and GIVE whenever I can...I KNOW I am not a bad person...yet I can't help FEELING like it...especially when I dare to complain about anything...I feel that I being made out to be the bad person...it's just not fair... I take solace in reading and re-reading this article...it was bang on...just validating it for me is great...learning that it is "normal" and it doesn't make us bad people helps...


about 9 years, said...

Someone said...They feel robbed of life here.....I said the same thing. Just when I thought that I would be able to spend some time with my husband , now that my youngest is 18, I have become a full time caretaker for my Mom. I have all the same feelings here and now I will try to shed the guilt that I feel thinking that I am a BAD daughter for feeling like this.


about 9 years, said...

like looking in a mirror


about 9 years, said...

Moved in with in laws when it became evident my father in law was failing.fast.heart isues.We were renting at the time so we moved 250 miles away from our life as we knew it.before he died my father in law made his only survive child promise never to make his 80 year old mother move.we gave up our life our relationships with his kid's and grandkids .to keep her here.She is living her life and we have lost ours.My husband has laid down and accepted this.Our income the last 7 years has been mine as a "professional caregiver" so gething away has been impossible. Once a year I go to see how my Mom is 1200 miles away.she also lives alone after death of my sister .mom has vascular dementia.I have been experiencing so much anger and resentments centering mainly on her!! I FEELING ROBBED OF A LIFE .How do I cope when it a pears there is no way out


about 9 years, said...

Guilt isn't my problem. How do I cope with the ANGER? My mother was an abusive parent. The only one of us she treated well was my younger sister. Now I'm the one tasked with taking care of our mother and my sister won't even take her for a month per year to give me a break. My mother is disabled and has the beginnings of Alzheimer's. I also have a disabled husband, so I do nothing but chores from morning to night. My life has been shit anyway as I have bipolar disorder and went undiagnosed until I was in my 50s. I have nothing to look forward to. No vacation, no weekend off, nothing. Got any brilliant suggestions?


about 9 years, said...

Hi anonymous - Don't give up on your friends, even if they ask the wrong questions. They are most likely assuming that you are doing the best you can with the situation you are in. Are you having your kids take responsibility for chores around the house? As well as helping with their Dad? Teens have a lot of energy, and can do a lot around the house to help you, including planning and cooking meals, laundry, dusting, vacuuming, changing beds, washing cars, yard work. Burn off their extra energy. Make it a part of their routine when they get home from work to do their homework quickly, then pick have a room assignment for them to clean. Weekends - yard work, cooking, running errands, if they can drive. It's never too late or too early to start giving them responsibilities. Learning to care for a disabled person is a good thing for them to do - gives them life skills and patience!


about 9 years, said...

It must be soooo hard to caregive with teens AND a full time job! Hugs and prayers going out to you. Hang on! Don't give up! Keep venting on this forum. Lord knows I have. It really helps and you are among friends that KNOW. God Bless You for all you do.


about 9 years, said...

i understand it now...but it still hurts...i just want to scream "HELP! get me outta here!" "make it go away"!...i'm only 49 and have been caring for my husband who was diagnosed with MS before our 20 year marriage...sole income provider...sole "everything" provider...mother of 3 now in their early teens...working full-time (40+ hrs/week)...no money...no place to go...mini explosions...pre-menopause??...and the worst...trying to control myself in front of the children...i MUST SUPPRESS my daily frustrations and resentfulness and show loving care despite my true feelings, for the sake of the children...resentful and guilty beyond words...anyone at the point where they are actually worried about THEMSELVES? i feel like i can't hide my feelings and emotions anymore...i am brutally honest with people now when they ask "how's you're husband doing"...(another thing i'm resentful about...it's never, how are "YOU and the kids doing"...it's always about HIM)...so i've noticed, they don't ask me much anymore :) ... how's THAT for sucking!...definitely on a downward spiral...so much so that i worry that it will be ME some day soon that will need caregiver support...which makes me suppress my true feelings even more...trying to accept this role...finding it very very hard...sorry, but nice to know that others feel the same way...am thankful for this article which validates my feelings...and thanks to this forum for allowing me to vent...


over 9 years, said...

Mother in-law wants to act as if she is part of our marriage I'm so frustrated with everything she tells me how to be a mother


over 9 years, said...

I married a wonderful man and I also knew that he was taking care of his dying father and sick mother I moved in and do everything to help with the care of my mother in-law but now that we have a baby things have to change she doesn't seem to accept that his son has a family of his own we still take care of her but I want my space but he feels too guilty to be honest with her she seems to want yo live his life too and that's not fair


over 9 years, said...

I found this site by googling "how to keep from going crazy while caregiving". The article is something i will print and keep. I have become so angry and bitter lately from caring for an ailing spouse that every resentment I ever felt has boiled up inside me. This week, I felt like I was having a heart attack. I would appreciate any support from readers of this site. Thanks.


over 9 years, said...

Thank you agin , she is 88 and the Dr. said close to the last stages of dementia, thank you for understanding.....


over 9 years, said...

With time, you will become adept at adapting to her changes, so that they become less obvious to her, and less painful to you. Just remember, this is something that is happening TO her, as well as you.


over 9 years, said...

Thank you CA-Claire.... it just seemed so fast ,she was a totally different person today. and I know it upset her. so I tried to just act like everything was fine....


over 9 years, said...

It's amazing how the speed of the changes in our loved ones vary. Some days, it will seem like they are getting better, others, slightly worse, sometimes drastic changes in either direction. It is all designed to drive us all crazy. Try to roll with the flow, as there doesn't seem to be much rhyme or reason to the changes....


over 9 years, said...

My mom has just gone down hill over night , gradually ive seen changes but ths was drastic today ,yesterday she seemed fine , today she was totally lost ....is it normal to change that fast ???


over 9 years, said...

There is a Chinese saying, "to have a parent or elderly to take care of is a blessing." When I was in the throes of caregiving, at time certainly did not feel that way. When my mother and father were both gone, it really hit me--this is saying is so correct. Wish I still had them around to take care of--I missed taking care of them, and if I could do it again, I would be more patient, understanding, loving, and attentive. If you are still doing the caregiving, considered yourself blessed.


over 9 years, said...

The isolation, lonliness is overwhelming. My daughter keeps saying I chose to be my mom's ft CG but I was a selected volunteer. NOBODY would choose this lifestyle. I miss conversations with sane people who don't ask the same questions all day. Family and friends don't get it but I always tell them I hope they never have to.


over 9 years, said...

Greeting and blessings to you all. I have just read many of your messages and my heart goes out to you all. I too am sort of a caretaker. My brother is in a nursing home and needs skilled nursing care. I go with him to all appts., handle his finances,etc. Deal with all nursing home issues and all. I'm all he's got, sibling is no help, and right now I'm feeling pretty sick of it all. He's angry, non-compliant, mocks me ("blah, blah, blah" etc.) Anyway, I have not read anything about how you all feel about your own care when you need it. I have told both my sons and their wives, "Do not take me into your homes!! Put me into a home, visit me regularly and call it a day! Don't hesitate to pull the plug when the time comes. No guilt!" I have a living will where I have spelled it out. The last thing I want is to be a burden on my kids. By the way, I am in 70's and in pretty good health. But I'm telling you, sometimes I worry that I'll stroke out when I'm dealing with my brother. Curious how you all feel about this!


over 9 years, said...

Yesterday I was on "caregiver overload"! Today I feel better, so I can post. My mom has had diarrhea for 21 days. We've been to the doctor 7 times, ER twice and a CT scan. She can't remember any of her symptoms correctly when questioned by the doctors, so I interject and tell the correct info so the doctor can try to diagnose her. This makes her unhappy with me. I have always respected my mother and I don't correct her on most things because it really doesn't matter. This ailment does. My sister, who is usually AWOL when Mom has a need, now can do no wrong. Can you see the tension here? My husband was home from work with a sinus infection yet I left home to tend to Moms appts, being told no one else was available to help. Thank you for listening to my "vent". Today is another day and it's sunny and warm in Denver. God is Good :)


over 9 years, said...

It summarized the many emotions and feelings I have had for the last 8 years of caregiving. I am trying to work through a serious criticism that I over-control my spouses behavior. I've been looking at it for 3 months and the person who pointed it out does not want to communicate anymore. My husband actually welcomes my "direction"; he can still verbalize this. To him it is not control. We have been together 54 happy years. How do I get this off my back?


over 9 years, said...

I am dyi g inside. Trying to be strong for everyone else. I've been the primary caretake to 6years. Noe she had dementia Alzheimer's for 10 years. Recently fell and crushed her hip. Two and half months go by and they finally allow hrt do walk with modified wt bearing. She is having respiratory distress pulmonary hypertension. Renal problem. Going down fast and I feel my heart breaking. I feel like I am dying on the inside.


over 9 years, said...

My husband has lived with his mental illness most of his adult life. He's a 38 year Veteran, and retired with a 50 percent disability. We have been married 14 years. When we met and fell in love he was working, going to the gym and seemed normal We dated for a year before we decided to be married. He was my 2nd husband and I was his 4th marriage. In retrospect it been against all odds that we're still together. It seemed like only weeks after our marriage did I begin to notice how quickly our lives Changed from bliss to sadness, distance, and disputes. He just seemed to slip away into his own world. We are now both retired, his is 72. He has recently been in two MH hospitals, has had a series of 7 ECT, (electrical shock treatments), and was recently diagnosed with dementia with psychological disorders. My husband is showing signs of depression and is angry at me because the doctors have taken away his driving privileges (temporarily), and he's blaming me because if I wouldn't of said anything "they wouldn't" have brought it up. I am very uncertain about what to do. We're financially dependent on each other, and not sure where to begin to help or to flee. My health has been declining since all of this has come down. I am extremely stressed and anxious, and afraid. I am insomniac and don't sleep unless I am medicated with Zolpidem.


over 9 years, said...

I am a caregiver of a severly depressed teen and this artice has helped me tremendously. I have caregiver fatigue and have noticed my approach to the person I care for has changed considerably. I thought I was just getting cold to the situation, but I am resentful of the fact that my life is hijacked for his care for now.


over 9 years, said...

this is the 4th or 5th time to read this. Each time it helps me. I have experienced ever one of these.


over 9 years, said...

I was trying to be the perfect caregiver. I scheduled my PA LS tube feedings every couple of hours, gave him his meds at the right times, reminded him to use his ventilator & Cough Assist. When he resisted I felt terrible. Then it hit me! He is perfectly capable of deciding when to do these things. It's his disease. Let him be in charge of his care. I will be the facilitator. If he wants to gain weight, he knows how many calories it will take. I'll be there to help. This arrangement has worked wonders for us both. He's happier, I'm relaxed, and it's going well. Our one caveat is that he must weigh himself each morning so that we know if he's gained or lost.


over 9 years, said...

Thank you for your article. My mom just passed in the last few weeks. I was the main caregiver 90% my sister less than 10%. In the last two months she was there more as I stated that I had to at least show my face at work. Mind you... she worked her full time job..while I went to 2.5 hours a day or no hours many a day as I could not leave mom alone as she was not well..even though she said she was ok... I knew better so at last moment I would call out. Many a time my sister would proclaim...if it weren't for you.. or your doing a great job...but mostly you chose to take care of mom..you chose it. Yes..I chose it because it was a privilege to take care or her...my mom was a great patient. Yes sometimes she wanted things done yesterday but that was because time passes so fast for those who are ill. At times we had arguments. ..but it cleared the air. Yes I had been grieving for a time even before her death. No I never resented Mom for the time I was with her..quite the opposite. I didn't want to be anywhere else than with her. I got very stressed when I would go to work..I wanted to be with her not work. I got stressed when I was with my husband..he would say..I know go..you want to be with your mom. He was right..I only wanted to be with Mom. If I was not with her..I wanted to be with her. This was time I would never be able to get back. I knew that caring for Mom would be my 1sr priority. I didn't bother to me that I didn't see my friends. I made sure that her house was always open and welcome to her friends. now that she is gone..I am somewhat displaced.. yes I ha ve guilt that I could have done things differently..but that cant be. I'm so glad that here friends visited her and were true blue. Yes..I also put my health on the back burner but thats ok..my Mom put her whole life on Hold when it came yo her kids. Too bad my sister didn't realize it. I am so glad I did what i did as caregiver. Yes..my sister thought it was a control issue..but I truly knew what was best for my mom and fought for her quality of life and the fact that she did not want to be so drugged up (even if it helped her) that she could not talk with her friends or feed herself or dial the phone. I miss her so much.. my life will never be the same. No counseling would ever be of help. We all know that we are going to loose loved ones.. it just doesn't change the outcome. Having to pack up things andthen you go on with your life. lifestyle goes through it. Just some of us like my sister accept it and get through it and on with their lives. Other like me will be forever grieving and trying to make a life. Forever in my heart and soul my Mom Gerda.


over 9 years, said...

It was a brilliant article. I felt it was actually written just for me.


over 9 years, said...

I hate I did not find this article sooner...I just lost my momma to small cell lung cancer Oct. 3 2014 just buried her today....I've never felt grief and heartache like this. I was fortunate to be off with her the whole last year she's been fightimg this which that has put me at ease a little also she's comfortable and with the Lord now but I still fi d I have so so many what ifs should've or shouldn't haves.....I'm still super stress and believe me I though stress and depression was gonna kill me because physically and mentally falling apart. In July I knew my moms tine on earth was coming to a closed and this is the calmest I've been all year but I was trying to be strong and stay prepared. Every week it seemed she lost the most important things her ability to walk control her limbs her ability to think but I thank god til the very end she kept that infetipus smile precious laugh and personality and she always knew who I was. For the first time in the last two weeks I was in hopeful denial that she may remain with a month longer....I was so wrong and her death has torn apart. I've found some comfort in religion good amount from wonderful friends and great family but these 7 emotions are hitting me 3 fold now.....this helped a lot I will definitely try to take pointers. My momma wouldn't want me grieving negatively she want me to stay positive remember good times and move on. I'm 28yrs old and now Im still in shock...there's so so !much I did t get to experience with her...I feel robbed :'(


over 9 years, said...

Hi Oldest girl - I'm the youngest daughter and youngest surviving kid. The bookends (oldest and youngest girls) get so much stress from being caregivers. My Mother always imagined that I "wanted" Dad to myself - I'm sure there's a "name" for this complex. I loved Dad, but never more than Mom. He had a soft spot for me because he knew Mom was tired by the time she had me - they married at 29 in 1950 - late for their time. Dad spent most of his life spending extra time with me, because he knew Mom was tired. About a month before Mom passed away (I was primary caregiver), she blurted out "You're just glad I'm dying because now you get Dad all to yourself". It made me so sad, so I did my care management from the background at that point, leaving her care to 24/7 caregivers that I managed. I miss Mom so much, and now that Dad's coming closer to the veil between Heaven and Earth, I'm sad. Being without parent's is like losing my family, especially since I never had children, and with 4 years between the next closest child and I, we will pretty much just go our own ways once Dad is gone. So many regrets and so many tears. My sister had the tough job growing up, being the only child, and the boys were born within 2 and 3 years after her, then there's me, born 7 years after her, and a widow to boot. Caregiving has been my life, work came second, and myself third. High BP, Severe Sleep Apnea, Thyroid problems, Lung problems, all ignored during the 8+ years of caregiving. Find time to take care of you, Oldest girl, or you will leave before your Mother. Take care. Ca-Claire.


over 9 years, said...

Nice to know I'm not the only one feeling I'd lost my compassion for my own mother. I always thought I was the type of person who had empathy and compassion for others, especially older people, but I seem to have to pretend to feel that way with my mom and then beat myself up with guilt for feeling this way. Thankfully I've managed to hide it from her so far but I now have high blood pressure where I never did before.


over 9 years, said...

Thank you so much. The article "hit the nail on the head".


over 9 years, said...

Hi my husband contacted pneumonia about seven months ago, we have seen and are still seeing numerous doctors. The X-rays still show several types of pneumonia. Some days I feel overwhelmed, and wonder who will be able to make my husband better. I feel afraid when I consider the alternative of life without my dearest friend and companion.


over 9 years, said...

i am my mother caregiver when she had brain stroke; she can not read or cook for her self; i do the cooking and house cleaning and yard works; i am get stress out lot time then i have pull my pant up go through life; not like my job.... i love my mother lot i do care for; i wish i get paid it is a rea job; i get stamps for food; i have to ask my sister and her man mike for help; i get tried and my legs is starting to hurt ; my sister and my brother both have a job; my brother in law mike have his only life to worry about;


over 9 years, said...

We now have a caregiver and I have been leaving the house almost every day she is here.I am loving the way I feel when I am away, but tend to cry if I get a call from home during the time I am away.I find that I also get very angry with my man when he calls and have told him he is not to call when a caregiver is with him because I absolutely need that time to my self. I have currently moved out of the shared bedroom and avoid him on purpose.I am just so burnout.I have advice for those caring for their partners/husbands/wife/parents/children get help an do not wait years to do so.take time for your self to do thing for your self.I do not want anyone to feel like I do tords someone they love. I know in my heart I no longer want to live in the same home as my man nor do I want to do the most basic task for him,it very sad when you have to tell the person how you feel tords them.So please get help early on in the care-giving journey for all involved. ASK FOR HELP! From the Doctors an hospital staff they can try to give you info on people that possibly can help.


over 9 years, said...

I am glad and relieved to know that I can grieve my dad. He is very sick and I can see that he has aged this summer. I know that he is walking around wishing he would die. He is unhappy. He doesn't want to live any more. This article says it's o.k. for me to be in grief. And I know my mom is in grief. So, thanks.


over 9 years, said...

Hello, I am caring for my 87 yr. old mom with Alzheimer's. I left my job of 12 yrs., a job I loved, to care for her. Now, I have no income and no health insurance. She is staying with my husband & I. We are getting ready to move 500 miles away to her home. She is so hard to deal with. As soon as I get up in the mornings, she is at me, demanding things I just can't do right now. I always keep in mind that she has this disease, but I still find myself beginning to hate & resent her. She is also a chronic hypochondriac. I do meditate & do deep breathing, but it is still so stressful. My hubby helps when he can, and stays with her while I go for groceries. I am very grateful to get these little breaks away from her. I'm glad you are here, it feels good to vent. And knowing there are so many other people in the same situation makes me feel a little better. Thank you and God bless you all.


over 9 years, said...

Thank you Roger.. What a brilliantly put comment... Very refreshing honesty and clarity on our situation and our emotions!!


over 9 years, said...

To everyone on this care giving journey... We are the chosen ones. God has set our destiny and circumstances have allowed us to do this... Vent your frustrations, validate them, feel them and then let them go... We all have moments of weakness, we lash out, we scream, we cry and scream some more. then when we've allowed ourselves to do this, we can regroup and move on to what needs to be done..... I admit, it's not easy but it has to be done and I will continue along the journey I am on.... Blessings, love and hugs to all of us on this journey..... Roger


over 9 years, said...

My sister has Alzheimers and now my husband had dementia. Although my sister is in assisted living, I'm her main caretaker since her daughter won't help. My main problem (at this time!) is my husband is losing control of his bowels and won't wear depends . After cleaning the floor when my sister wet it, a day later I cleaned the floor, rugs, etc. of feces from my husband. I am totally worn out and so sad. Thanks for listening. Carole


over 9 years, said...

Also want to add: Worry is not typically considered an emotion, along with several other states mentioned here. The reasonable labor this so much is because to unlock these unwanted stuck states, beginning to identify the actual feelings underlying them is key. Also on one of the frames it says that it is not about you, but it should be about your loved one. I completely passionately disagree with this! It is about you, the caregiver! And it also is most definitely about your loved one of course! It is about us both, we are in this together. The path, journey, needs, experiences and all of it are a deeply mutual thing, done with each other, together - even when you feel as if you're carrying it all, alone. I encourage to try and think about it in this way, and to address both/all involved peoples needs, and see where that leads you. I believe it leads to a better, more fulfilling, whole, compassionate place. I have found this to be true. Avoid and let go of codependency, having to be perfect, "shoulds", hyper-vigilance, self-judgment, which just only lead to beating yourself up again, and possibly resenting your loved one and the situation even more. It is about everyone in the situation!


over 9 years, said...

I want to add something here, based on the work that I do with people dealing with emotions etc. First of all, refusing to feel certain emotions or considering them to be "deadly" is in my opinion deadly in itself! There are no deadly emotions! The thing deadly is when an emotion is stuck, judged, devalued and unprocessed. Doing certain actions, activities, choices, speaking words, or failing to do so, judging, labeling, nurturing or harboring, or holding to stuck or unprocessed emotion can definitely be deadly or undermining. Emotions themselves never are and never can be. This ties us in knots, lowers our strength, power, energy, response potentiality, good decisions, peace, joy & perspective, when we proceed to not allow ourselves to feel the emotion so that it can move through. This is always been my experience and is what my work is based around. There are many people offering protocols and methods for processing one's emotions. There are methods everywhere, from from Scott Peck to Byron Katie and many things in between. "Emotion" is merely "energy in motion". When it ceases to be in motion & it gets stuck, is when it can become deadly. However, as much as I agree with intense language when it is appropriate & called for, I strongly object to and caution against the drama-laden and imo convenient, trendy, sensationalistic, out-of-perspective reference in this article of such an extreme word as "deadly". I would rather say that such emotions are merely unhelpful or unfruitful. To call it deadly puts yet another anxious, triggered, I-must-change-myself-&-do-better, I'm-not-okay, must-try-even-harder, must-not-be-myself, fearful, upsetting thought into the mind of an already overloaded caregiver in my opinion. (Especially if one is dealing with a loved one whose medical condition is "deadly" and a sense of death is all around.) I also strongly object on principle to any idea of switching negative emotions to "positive" ones on purpose, versus processing through the ones we are experiencing. I find a great results with this for myself and others, and they are usually lasting, beneficial and expansively life enhancing results. Finally, such things as guilt or not emotions. Guilt can cause emotions, such as sadness, anger, or frustration. I believe guilt is defined more as a state of mind, but I am not sure. Any motion is a simple thing, it is a feeling. To identify such a thing is guilt by calling it an emotion, is imo likely to hinder someone from processing the emotions, ie feelings, which actually come up around and in response to their sense or state of guilt. I find it immensely helpful to quietly identify and pinpoint what simple sensations are noticeable in our body (and mind), such as "my stomach feels tight, right there" or "my head and shoulder blades feel crunched, painful and squeezed in"... and to simply BE WITH those, and not try to change them at all. Just to LISTEN to them, lay a hand on them softly, as one would listen lovingly and attentively to a cherished child or treasured loved one. They are merely a language, rich with energy waiting to be freed up for our use once they are recognized for existing, not argued with or altered, not devalued hierarchically or called dangerous or by bad names! I have found it relatively easy to locate lists of emotion words online. I have used them in my professional capacity, and have benefited from them infinitely in my personal life. In our culture we do not think in terms of speaking out about what our emotions actually are. Most of us are at an extreme loss for words as well as awareness in that arena! But to look at these list of emotions, noticing which things are actually emotions and which ones are blame, projection, or actual states of mind or a sense of something vs an actual emotion, I find extremely helpful. In reading through them and noticing what fits for me, the dam begins to break, the ice begins to melt, the river of my emotion begins to flow, and as the energy is put back in motion, which is what e-motion is, I begin to feel whole and boundless and comfortable more again. Breaking the logjam and breaking through stuckness inside, without committing any activity outside which could be deadly, hurtful, or regrettable, in my mind is the ideal goal. I find it amazing and very positive to do whatever works for each person to let the dam break and the flow of wholeness to loosen up inside again. Resentment and anger disappear or at least decrease, a person feels worthy and deserving again of wholeness and recognition within themselves, and they become more able to give to the person they're caring for without feeling hurt, blocked, slighted, overloaded, overwhelmed, scared or shut down by it themselves. I do not desire to be unduly corrective, superior or contentious here... I benefited greatly from reading your generous and caring, intelligent, experienced, thoughtful article! I simply wanted to add, as my loving passion is to do, in help to people processing emotions. I am currently a caregiver also, and I am stressed. So if I sounded sharp or corrective here, I do not mean to, it's simply about the best I can do right now lol! Thank you for listening, and thank you for your contribution on the internet here. I have benefited from it and I feel a sense of gratitude :)


over 9 years, said...

Resentment has been my biggest enemy. I have a family member who gives excuses or just doesn't answer the phone when my mother needs help. I give and give and give and would like to have a break more than once a month or once every 3 months. It has caused me huge stress, anger, outbursts, family trouble...then one day....I just decided to NEVER expect any help. I started seeing it as my role in my mother's life right now, as a chance to be with her and have more memories and love together before I lose her. We do have glimpses of fun and we do laugh a lot. I've been asking God what he wants me to accomplish with the rest of my life now that I'm 62. The connection I have had with Mom the last few years has been one of deep understanding. I know her needs by instinct now. When I finally decided to never expect any help, I relaxed. I know God knows EVERYONE'S real intentions and actions, and I'm satisfied with that. I exercise more. I reward myself with artistic times even if only briefly. I smile more. I let it go.


over 9 years, said...

Caregiving is without doubt a roller coaster of emotions. I share these many emotions in "From my Heart in Pictures and Poetry." I have learned that emotions are just a part of each of us, they need not be justified and it helps when I share. Photography and writing have been my voice of expression. I would urge all to look beyond my words and images and find their own story. Appreciation and Interpretation take root from past experiences, present circumstances, and current frame of mind. If we are to stay well and be successful, it is essential that we learn to accept, understand, and come to terms with our own emotions. I believe that how we react to something is much more important than the event itself. I do hope that my work offers support and comfort to others.


over 9 years, said...

My issue right now is that my sister can't "find her words". She avoids conversations with anyone but me. I always remind her, since she feels stupid, that her brain works but the disease interferes - and it has nothing to do with her intelligence. It seems to help.


over 9 years, said...

Everything in your article has been helpful.


over 9 years, said...

Mammala1 - i know how you feel. My Mother was given days to live Halloween 2011. it was a long horrible 10 weeks later that she passed.


over 9 years, said...

I am exactly as u explained. How did u know? MY life is a shamble; emotionally, financially. 5 yrs ago it was said mother had a year at most, it's now 5 yrs later...


over 9 years, said...

I have a really hard time giving the care to my 86 year old dad and my 68 year old husband. My husband has said that I care nothing for him because I spend all my time with my dad. I start at 8 am every morning 7 days a week and I go from one house to the other doing cleaning, meals, and washing clothes and whatever needs to be done. Dad can't get out ,but my husband could make it easier by eating his meals at my dad's but he is so jealous of the time I have to spend time with him that he won.t even come to his house. Am I the only one that has this problem?


over 9 years, said...

THANK YOU I just spent 25 min. cleaning floor again


almost 10 years, said...

it seems everyone has family. I sm 62 yo divorced nurse who has no family.brither died last year and left everything to wife . I am taking care of our 88 year old mom with alzheimers who gets around 1000 a month and no assets. I have so much anger still since I have this burden and his wife has given us nothing despite brother telling me he was leaving funds. I get very sngry, have heart problems, but don't have heart to place her in nursing home. Tried it fir three days and brought her home due to them not giving her fluids and not satisfied with care. What choice do I have? Limited funds, no support,and sorry nursing homes. I get dick of people mentioning assisted living. If I had money brother said he was leaving , I could put her in nice place.a trust would have been nice. All she has is Medicare so have to cover med expenses also


almost 10 years, said...

I have a great deal of guilt brought upon by the care team at the hospital. My ex husband of whom I have been a caregiver for in our home is 57 with frontotemporal dementia. He is awaiting placement in a facility. The hospital 's attorney had a judge appoint a guardian and they have not let me see him in 2 mos. They did not even tell me they were doing this. I already felt guilty, now I feel doubly guilty that I was a bad caregiver. I did my best.


almost 10 years, said...

My name is Mark & I am a late coming child born to my mother at 49 years old!! I had one brother which was 22 years age difference between us!! Recently in 2010 my brother passed away, now I'm here to take care of my mother!!! First of all my mother was a curmudgeon anyway throughout her life, nothing I ever did was good enough!! I placate her all day, she eats when I don't, however she still complains all day!! I'm so afraid that my mother is going to push me over the scrimmage line & I'm going to end up doing something that I will regret!!! Please pray for me because I sure need it!! I'm so sick of this whole situation!!! It's not that hard (for me anyway) to take care of someone sick, but this Leo over here makes it almost impossible!! I am my mothers son, NOT HER HUSBAND!!!! God Bless & whomever reads this PLEASE keep me in your prayers!!


almost 10 years, said...

5 yrs now mom living with me; at onset life expectancy was 1 yr at most; in home hospice for 1 year now, seems for days she's crossing over then miraculously rallies; vitals sustained; she hardly eats; incontinent for 3 yrs; my life's been on hold so to speak however I have to go to work to support us financially; nursing home at this point defeats purpose like all these yrs would go to waste ie to pass in her own bed...money wise part of her doc sec pays half of the rent; all else up to me so in that way I'd b worse off now (was ok $ at onset) we r ok as long as I keep up work & daily caregiving of her but it's my only life, I'm trying hard to b positive, friends don't understand, I m to tired for social life but try & force myself to go out & work cuz one day she will pass; but I'm never happy doing any of it like my whole being is an obligation. Thanku for letting me vent. Going to sleep now or at least try.


almost 10 years, said...

Great article! I wrote a book about my caregiving journey, “What to Do about Mama?” and I think I hit all seven of the emotions listed. The following excerpts come from pp.87-88 of the book. • Just as your loved one’s condition is progressing along a timeline of inevitable decline, your own emotions are morphing right along as you continue the journey together—experiencing all the highs and lows. In the beginning, as mentioned, the predominant feelings are fear and worry—emotions generated out of love and concern. And when taking on the caregiving challenge, you might feel optimistic or even gratified that you are able to show your loved one just how much you appreciate what he or she has done for you and meant to you in your life. • The big trip-up occurs when you discover that the realities do not meet your expectations and you begin to feel disappointment and frustration. When you are carrying so much burden on your shoulders as a caregiver (in addition to your other roles—such as spouse, parent, and/or employee)—and if you feel unappreciated, overwhelmed, and out of control, these emotions can turn into anger, resentment, and bitterness. These nasty feelings seem to eat away at you, like cancer, from the inside out. • Your original sense of empowerment has been replaced by depression and anxiety. Depending on how you interact with others—family in particular—and whether relationships become difficult or even toxic, you may feel distraught, devastated, or demoralized. You may even develop a fear of losing your emotions and becoming hardened through the process of steeling yourself against them. Feeling trapped, your mind fluctuates between imagining both the “relief” and the “grief” you anticipate feeling when your loved one passes. And that, of course, generates the mother of all negative emotions—guilt. As you become more and more tired and run down, you begin to experience physical repercussions, quite often serious. Visit my blog for more dialogues about caregiving: http://www.bgmatthewsblog.wordpress.com


almost 10 years, said...

This article was helpful...it also showed me that I have all of the items listed except the last one. I know I need to do something to help my situation because we are both suffering. Being very low income doesn't help matters. I need a support group that was help me at least be able to talk about how I am feeling.


almost 10 years, said...

Oh my, this article has helped so much. Firstly, it has defined and verbalised what I have been feeling, but have not been able to identify at times. Secondly, it has given me some tools to work on those issues. Thirdly, it has given me something tangilble thath I can share with my doctor (who provides my prescription for anti-depressant/anti-anxiety medication) and our counsellor, to whom we are going as I am struggling with the changed roles in our relationship dueto my husband's COPD. I think it will help them to understand me, and also other caregivers. Thank you so much.


almost 10 years, said...

Hi anonymous - Stop the second guessing. When you make a caregiving decision, or react to a situation, chances are you are doing the best you can, with what you have available, and what you know at that time. We can only do our best. Sometimes our best varies, depending on the stress at the time. Second guessing only creates grief for you.


almost 10 years, said...

I am confused a lot of time for trying to find a better solution. Always question myself, did I do the right thing. What should I change?


about 10 years, said...

Yes, I will do deep breathing exercises to ease the burden of caregiving, as if that will give me my life back. Journaling about it? My old father gets enough of my time without rehashing and writing about how I don't have a life because if him.


about 10 years, said...

Boisegem, Your comments were beautifully stated. I couldn't agree more! Yes, as primary caregivers, we have to let go of our expectations of others. Though we don't always get the respect we deserve, we know we are doing the right thing.


about 10 years, said...

I see the anger in my friend who is caring for her mum who has Alzheimer's. She is constantly angry at her siblings; she thinks they are not doing enough, and snaps at me often which hurts my feelings often. What can do? She needs to stop her snappiness, it is really ruining my friendship with her. She is a wonderful person but getting really hard to be around. I know what it is like to care for people, I have been a caregiver most of my life, but I have never felt that resentful, so I don't understand this anger and I hope I never do, but I know she need something, but what? How can I help her? I started taking care of her mom once a week to help, but it doesn't seem to stop her meanness.


about 10 years, said...

I have taken care of my elderly mother for almost nine years .With No help from any of her other children or her sister. They place her in a home.They told her they were taking her for lunch then had her pleced in a lock down are. I brote her home and it has been nine years. It has affected me and drain me .But in the bible it takes about you will have a long life if you take care of your parent. Who what's a long life a quallity life is something else. I feel not only has her children not help. But also God. All these comment in the bible of blessing and long life if you take care of your elderly parents.Most caregiver become sick because so much stress that they go threw for another. But the worst part is you realize the bible is not so. And God does not help the caregiver or bless them. So please don't make it out to be cherry when it's really hard on people. And don't talk about the bible whan god is not even there for the caregir. And who want's a long life if they can't take care of them self to me that's no a blessing. A quality life is a blessing


about 10 years, said...

CA-Claire, I feel the same way often, as my life has been put on the back burner as the disease takes it's own course. Finding resources for help are very time consuming and resources are hard to come by given our economic climate of the last decade. One thing that I have found that is helpful is networking within your community, and although time is always a problem as it seems as I am always playing 52 card pick up, one thing after another, I make time to do one thing for myself, be a class, or my art work, something in the community. Isolation is a huge factor in being a caregiver, as friends and family slowly disappear from our lives. The fatigue is relentless a huge obstacle in trying to maintain a sense of self but I was not going to let this disease strip me of everything in my life that I've accomplished in my lifetime. Careful planning and time management was essential to my own survival and once I was able to actually seek out different avenues that I could engage myself with, I was able to find many resources that I did not know were available in my community. It's helped, far from what I would like, which is to have the autonomy of my freedom in my life, but it helped. Sometimes it's baby steps that get us through each day, I just put one foot in front of the other, and more important I've never given up, never ever, never give up on yourself and your life. We matter, you matter, we are the unsung first responders and we should be valued and appreciated. That time will come, as our national awareness changes and we who advocate for the family caregiver continues to fight the fight. Heart hugs !!


about 10 years, said...

In the beginning I felt resentment towards my extended family members. I did not feel guilt and I still six plus years into caring for my Mother do I feel guilt. I think that many do indeed feel this but my feelings of resentment was a huge sense of pain and internal turmoil for which I finally had to except that I had a choice and that choice was detachment from feelings of expectations that were a source of my feelings of resentment. Were my feeling justified? Absolutely they were justified, but that did not solve the problem, it only made it worse, justification only allowed me to stay in a place of resentment, that in turn made me miserable. I did not want to feel that way as being a hands on caregiver to a parent with AD/Dementia is in itself extremely difficult on all levels. I learned to ask for what I needed from certain family members and at the same time I learned to prepare myself for not getting what I asked for, this was at the advice of an excellent counselor, and it has served me well. Others go on with their lives, and there is not darn thing that you can do about it, that behavior is theirs to own. That is not saying that it makes caregiving any easier, it certainly doesn't do that, but it's more of a point of clarification for yourself, so that you do not stay in a place of spinning in circles waiting for the other family members to do the right thing. The reality is that they are so self consumed with their own lives, their own dramas, their own self service to themselves, that they are not capable nor do they have the desire or the abilities to rise to the occasion. I've learned to let it go, let them go, and to consistently remind myself that I'm not responsible for their choices. I've learned to assign significance to what is important in my life and as my role as a caregiver, although it was not something that I chose it was the circumstance that I found myself in, but what I've come to know is that once to deal with the emotional cobwebs that we all have in our lives, within our family dynamic, I'm been far better off. I say this because the energy that is required to provide care for someone else is relentless. I'm no longer willing to exhaust my energy supply dealing with what others do or do not do to help in this situation, it's too emotionally draining, it's sucks the energy right out of you, and for what, the reality is that I do not have any control over others actions. I only have control over my own perceptions, and my reactions, and my emotional well being. It's been a wonderful lesson, and I did not come to this easily it was torment in the beginning, but I eventually took responsibility for my own well being and part of that was letting go of all expectations of others. The only expectations that I have are of my abilities to live my life within my moral compass and what I can do within my abilities and capabilities. May peace be with all that walk this road. It's not easy and it doesn't get easier it becomes more difficult when your dealing with progressive diseases. Self care and self compassion was my key. I hope that my thoughts are helpful to others that find themselves going through this dynamic. Peace be with you. ~


about 10 years, said...

As I come back on-line after dealing with yet another ER Visit, this time with a 3 day stay in the Hospital with Dad (fell, hit head, dehydrated, BP unstable, kidney function poor), caught the H1N1 from one of the people coughing their head off in the ER, so a week of work in bed for that, then foot surgery that was more complicated than I thought it would be. Nearly two weeks away from my work/caring.com email. Dad now has 24/7 caregivers in addition to living in AL. Kidney function now worse than it was in the hospital, after only a week out. I am back to feeling I have no life.


about 10 years, said...

I just realized I deal with feelings of resentment. Actually, reading this list made tears spring to my eyes right away, so maybe I feel all these things, with the possible exception of guilt. ? not sure...But i realized i feel a fair amount of resentment that in my family, I am the one who all the care giving is falling upon.


about 10 years, said...

Care- giving is a universal phenomenon : parents caring for their progeny, spouses caring for one another and care givers ( of varied categories) caring for someone in need of special care such as those afflicted with Alzheimers Disease, for instance. Your essay is timely given the looming pandemic of the disease. The care givers perceived absence of gratitude from the cared person is often the cause of much unhappiness. Understanding the reason for this would help. In the final analysis, developing a sense of empathy on the part of the caregiver when providing care is a good foundation. What would the care giver expect from the cared person, if their roles were reversed?


over 10 years, said...

Claire, I know you will be able to make a difference in the quality of life for your father. Many times I thought my father was ready to leave this earth. As much as he suffered, he fought hard in the end. While I was writing my story, I had to remember that he writes the ending, not me. Your gift of "being there" is a remarkable way to help him in the end. Aimi Medina


over 10 years, said...

AimiMedina - You are most definitely in the crowd of the people that have probably the most guilt of all groups in the world. We all sway between - I know I've done my best and Oh My goodness - how could I have done (or not done) _____!. There are times when I have almost wished for my Father to pass, but then I realize he's just not ready to go yet, and we plow on.


over 10 years, said...

I dealt with unbearing guilt myself. I share my thoughts and guilt of wishing my own father death to relieve him of his daily suffering in my story "Being There". I'm only now finding out how common guilt is for a caregiver.


over 10 years, said...

Since I was a teen my dad protected moms feelings, I and my brothers & sisters get scolded for upsett ing mom. Our being upset is ok,I'm tired of this,and I'm afraid to say anything


over 10 years, said...

Really good reminders.


over 10 years, said...

Generally a good article. However, two phrases were offensive to me - "imaged slights" and "anticipatory grief". The slights are often very real and the grief is often related to what has already been lost, such a the relationship in a marriage where a spouse has dementia.


over 10 years, said...

realizing others feel the same way I do ..to much to do and with having to work ,,feeling overwhelmed......


over 10 years, said...

Thank you for an excellent 'checklist' so to speak of the very emotions that can be detrimental to our health and welfare as caregivers. I'm fortunate to have found a support group but for those of you who don't have that option please use telephone or online support to vent with others who are familiar with these issues. Warm Regards to all Caregivers:)


over 10 years, said...

This is my 2nd round of caregiver burnout and i need help but am not finding it in our geographical area. Things like this may help me cope so i do what is best for Mom AND for me. I am single, working full-time and have another part-time job in addition to being a caregiver. I am grieving the loss of the relationship we once had before a stroke damaged her memory, comprehension, and emotions. I am about to go under and am going to counseling but articles like this may help.too.


almost 11 years, said...

What a superb article.. so helpful making oneself reflect on our own state of mind. THANKYOU.


almost 11 years, said...

Great article on different feeling you go through when you are a care giver. Explains things and gives you ideas on different things to try.


almost 11 years, said...

CA-Claire, Thank you for letting us all see the positive you experianced... I have always said dispite the evils of this, the positive that I have experianced washes the negative away. Those are what got me through Dad's passing and one day will get me through the final chapter of this journey and then a new book will begin and God only knows where that will lead. He guides me, he holds me safely in His armes and He will see me through...


almost 11 years, said...

Thank you Roger! It has taken a lot of hard work, both on my part and my siblings. At the start, my family only came together to get Mom and Dad to move near me. That was February 2009. Mom passed in January 2012. We finally all feel ing a cohesive group starting in February this year. A long haul with 4 intelligent obstinate OCD people, and two smart spouses. I share our family's example in hopes that some of the lessons we have learned can help others. I will say that once I CHOSE to change my perspective from looking with critical eyes to counting my blessings (positive things), things got a whole lot better. Thank you for the feedback.


almost 11 years, said...

CA Claire, you are so fortunate that it all came together for you. In the four years I've been doing this I've come to realize that your situation is the exception not the rule. We all hope for the ideal and accept what is and continue on. You are correct in saying that we all have our strong points and our weaknesses. I have also found that I spend as much time caring for the feelings of my siblings. I have always said that they are going through their own thoughs,issues and feelings with this situation, but that got old. I still care for their feelings but have prioritized everything and after Dad's passing they are as follows: Mom is number one, I am number two and everything else comes after that. I sometimes have guilt pangs but when it all gets overwhelming, I take a step back and that is just the way it has to be. I have five other siblings and get little to no help. I love them and forgive them but I am dissapointed. I often wonder if we were raised by the same parents. Having spent many years in therapy, it is all very clear to me. Bless you and your family for coming together at this time. Since Dad's passing, I have often said he would be as dissipointed as I am with the behavior of my siblings and the treatment I get by them. I have even said that to one of them shortly after his passing. My parents were loving, giving and humble people. I give until it hurts and give some more. I've asked for things of them and have rarely gotten help though they all say all I have to do is ask. When you keep walking into a wall and expect it to be a door, you just stop doing it. So as to avoid dissapointment I stoped asking except in desperation. By changing my expectations, I'm no longer in a constant state of dissapointmen. When you look at things differently, you see them differently. Went you look at whats wrong, you will find it. Again bless your family for stepping up. and as always, hears, hugs and prayers to all of us on this journey... Roger


almost 11 years, said...

This article came across too hard for me. I'll have to save it for later.


almost 11 years, said...

Hi All - I am one of the lucky people. Our parents have saved assets well beyond what will be eaten up by the care they need. That said, all of these 7 deadly emotions apply to my family and myself. I am the caregiver of the family, always have been, probably always will be - I'm the youngest. What was difficult for me was, my caregiving journey really started with my husband's stroke, then his sudden death 3 years later post open heart surgery. Almost a year prior to his death, it was obvious that our parents needed help, as their home was showing signs of neglect, and having to call the Sheriff's office twice for welfare checks was a real wake up call - they lived in the country about 3 hours from me and between 4-9 hours from my siblings. When we moved them to an Independent Living community in my city, they really should have been in Assisted Living, but it was hard enough to get them into IL. That's when we realized how bad it was. I spent the last 4 months of my husband's life working full time, then going over to care for Mom and Dad, then making it home about 9:00 at night. Then my husband died. I started resenting how far away my siblings lived and how little help they were in caring for our parents. It took me a long time to realize that each of us have things that we do intuitively (call them gifts). My big one is caregiving. I realized that not everyone has the same gifts, but if you look, most of the time, the gifts interlink. My sister (the oldest) is great with finances and keeping accurate files. My oldest brother is good at coming to visit every 3 months or so and giving his impressions on the cognitive state - he is a special ed teacher, so this works very well. My other brother comes out and has dinner with Dad once a week and once a quarter does 3D slide shows for the residents. I take care of Dad's medical care - I'm his advocate and go to all Dr. appointments, monitor how he's doing, track how the AL is doing with his meds, make sure he's keeping his weight on, and coordinate with the lady that comes 3 times a week to change his bed and do his laundry and take him out for a walk and sunshine. This all started back in December 2008, and it took a couple years to work out the kinks. If you had told me in 2006 that my siblings and I would work together on any kind of project, much less caring for Mom and Dad (Mom passed in 2012), I would have told you that you were nuts and didn't know my family. It's possible - you just have to look for the gifts, rather than trying to have them work at what is your gift.


almost 11 years, said...

Kyna and Enaid, I see with clarity we all live with similar circumstances. Just knowing that eases my burden. Mom and Dad were financially sound so that is not an issue. Working full time with paid help while I'm away at work and hospice an hour each day and an hour and a half on weekends is all I get. I have 3 sisters and 2 brothers all within a 25 mile radius and very, very little support. I have MS and except for the last two years it had been in remission. The stress on me has taken its toll and I have had minor exaserbations and this gives me great fears. I spent nearly 2 years with complete poralisys including blindness on one side. I pray it goes away for my mission is not over, I don't foresee Mother going more than another year as swallowing has become a major issue and asperation pneumonia will be what takes her from me. No matter what, the outcome will be the same, the time is the only variable and only God know when He will call her home. As always, hugs, prayers and love to all of us on this journey.


almost 11 years, said...

Thank you for your words of encouragement. I have been helping Dad care for Mom . I love them both very much. My siblings are missing out on their life . As challenging as this is , I have accepted Mom's disease. Yes we all reap what we sow & then their is KARMA . The universe will give you just what you put into it. Peace & Blessings to all


almost 11 years, said...

Boisegem, this is so common, the promise of financial help from siblings or others, and then have the broken promises. It is terrible. Desicible. Look that word up in a good dictionary and you will begin to appreciate the way they are treating your mother and your family including you. Like Roger said, what goes around, comes around. Or Karma is a thing that will get them in the end, if nothing else will. Even with no insurance, your mom should be able to get into an assisted living facility. What is Medicaid like in your state? Mine pays the majority of my services, GRH, General Residential Housing pays for the rest of my rent. You mother is actually indigent so she may qualify for benefits you don't know about. Please contact a lawyer who specializes in the elderly and get a consultation. Have questions prepared so they can be answered quickly. Social Services is trying to save money so will not tell you anything they don't want you knowing. These are only suggestions, I am not trying to meddle in your affairs, maybe you have tried these things already. Or you could hire some one to help you and bill one of your siblings for the help.


almost 11 years, said...

Roger, as Boisegem called you a gem, she is right. As one of the few male caregivers, a real rarity, caring for Mom is a more than full time job. To just go home to care for her after your dad was buried was an act of sacrifice and courage. If you have other siblings, they need to step up if possible, and help you. Perhaps you might see a therapist. I did that as have others who have caregiver burnout, but little help from others. My therapist helped me develope coping skills that are used to this day when I need them. My husband cared for his mother when she was very ill. He said it was hard but very worth it. You are to be very commended for the love you are and have shown both your parents. Kyna


almost 11 years, said...

I truly believe that the feelings that I have had towards my brothers, and the extended family, aunt's, uncles, and nieces, etc. in the beginning were of complete and utter disgust, as they were so wrapped up in their own lives, that I seemed like an after thought and that of Mother, the problem that I dealt with is in the beginning they all promised emotional support, and my one brother is in a position to actually help financially, made promises, such as "if you and Dick (my husband) relocate Mom to Boise, I will help as much as I can financially" as it was impossible for me to continue with my freelance work, that limited my income, my Mother's brother and sister, are extremely well to do, and it was nothing but "broken promises". Mother did not have the financial resources to pay for an assisted living, and I spent the majority of my 401K financing her care, as I did not want to apply for assistance for her care. That was a huge mistake on my part, as the reality is that it will be very difficult to replace the money that I spent. I can deal with that aspect, as it was my choice, and I did what I had to do, my husband has been very supportive but after the first year of financing Mother's care, as for the first year she was in an assisted living, as her deficits were so extreme that I did not know how to care for her. We had to really sit down and reevaluate the financial aspect of exactly what this was costing us, we had to stop the financial bleeding, so that is when we decided to move Mother into our home, not an easy decision to make, but there was no other way, and the care that she was receiving was on a spiral decline, 3 documented falls, 4 medication errors, and the cost was astronomical. All along I communicated to my family members the cost that we were dealing with, the fact that my time was not being compensated, and it's very time consuming, I became the unpaid, and devalued care provider, and they could have cared less. It was as if I had nothing better to do with my life, my life, was completely devalued, and that was the absolutely hardest aspect. The resentment that I felt was horrifying, and I became so depressed, every single day, at some point in the day, I would literally go into our bedroom and cry my eyes out, sobbing, wishing that I was dead, as my life seemed to have disappeared right before my very eyes. As my husband said once to me, "we stepped up, and they stepped out, you had better except the reality of situation." There were days when I never even got out of bed without entering into prayer, just asking that God would help get through the day ~ I'm exactly like you Roger, I no longer have any expectations from anyone, except from myself and in the process I have forgiven the people that I felt had betrayed me ~ it was not for them, no, it was for me, so that I did not carry that kind of angst and resentment in my heart. It sounds horrible, and at times it felt like I was not going to be able to continue, but I did, by the grace of God. I have also been blessed my a wonderful husband of 33 years, he has treated my Mother better than her own sons have, and we have a wonderful 29 year son, and a lovely daughter in law, and now we have been blessed with our beautiful 17 month old granddaughter, Roxie, the sweetest little angel, pure love and complete joy has graced our lives by her presence. I look at the most beautiful of blessings, and that is what has carried me through this experience. I will not allow this disease to define me or that of the people that have shown their complete lack of empathy and or compassion. I know that the day will come, when Mother will pass, but I will have the memories of providing her with the dignity of life in her last years that she is deserving of ~ and the rest of my extended family, well, suffice it to say, their choices will be theirs to live with and to justify. It is not for me to place judgment, no I do not do that anymore, as I have come to learn that a certain amount of suffering is a part of life, and I have a choice as to how I want to live my life, with my integrity intact, my heart open, and to actually know that when all is said and done, I will rest, and I will know that I did everything possible to be a loving and caring daughter. I've learned so much through this time, and I will leave a legacy of love for my beloved ones. I never thought that I would feel this way, especially in the beginning, but I've learned that I may be fragile in many aspects, but I'm a survivor with a love for life, the good, and the bad. May peace be with all of you ~ and a special hug to you Roger, as your an amazing man, with values that we can all learn from. ~ Robin, aka, Boisegem ~


almost 11 years, said...

To all of us, If God has brought us here he will see us through... and to all the no believers. Karma dictates the same, what you give, you will get.... or what goes around, comes around...... All the best to all of us, and you are never alone, just lood here and you'll know you are not alone.... Roger


almost 11 years, said...

Anonymous, You will only find validation from others on this journey or shall I say tour of duty. Right, wrong or indifferent our feeling are real, true and valid. Be with those feelings, and they will be easier to let go of. Love, hugs and prayers to all of us on this journey....


almost 11 years, said...

Boisegem, Except for the begining of your journey, we've lived parallell lives. I love my family but I am truly dissapointed. I understand we all have our feelings but I no longer live in their drama. As you may know I had Dad and Mom, both with thier own symptoms of alzheimers and two completely different sets of circumstances, needs and challenges simultaniously. Dad passed a year ago in July and with no time to process, breath and even grive. Drove away from the grave and rolled up my sleeves and went home to continue the journey with Mom. She had no idea and didn't realize anything was any different today than it was yesterday. It is a very lonely place at times but one day this leg of the journey will be but a memory and our tears will be turned into dancing..... I have no more expectations of others and I'm not dissapointed in them any more... I have very precious memories that no other person will experiance and that brings me joy through the tears. Roger


almost 11 years, said...

it is just so nice to receive validation for my emotions...and tools to help deal with those emotions.


almost 11 years, said...

Roger, your a keeper! I am so impressed by your words expressed so beautifully, a true treasure. A gracious giver, wow, that's a gift from your friend to hold close to your heart, how special is that? Your friend was very wise in his advice to you, as I have learned through the years that receiving is something that one must value as much as giving. It's not an easy concept to wrap your head around, especially when we as caregivers are always on the giving side, but we all need to be gracious receivers as your sweet friend bestowed his wisdom to you. This is something that I have worked on myself, as it is a pace of grace when we are open to receiving as much as we give. In reference to excepting respite, reaching out when in need, knowing when it's too much to go it alone, expressing your needs. During this journey of caring, in the beginning, I went to a geriatric counselor that specialized in the caring of the caregiver, family members who were in fact caring for loved ones with Alzheimer's and or Dementias, but of course it could be any life altering situation were someone can no longer care for themselves. I went for two and a half years, and the wisdom that I gained literally saved my life, as I was absolutely not prepared to be a caregiver to an aging parent with these kinds of deficits, who is? No one can truly be prepared for this kind of life event, and in my case, I refer to myself as the "accidental caregiver" as one day I was living the dream life, as I had planned so meticulously prior to Mother becoming ill, oh, yes it was all that I had planned for and more, I was in an excellent place in my life. Then in a blink of an eye, boom, I'll never forget it, as it was December 5th and I was in the process of decorating a beautiful Christmas tree that we had for the upcoming holidays, I felt so happy, looking forward to the holidays, the first snowfall, the celebratory aspects of the winter season. All was well in my world, and then the phone rang, the news came that Mother had suffered a stroke, and that we had better make plans to fly to her state as it was very serious. The first snowfall that I was anticipating turned into a living nightmare as we were snowed in, too icy to fly, so it took a few days to even leave our city to fly to Mother's city. Then came weeks of rehabilitation in the hospital for Mother, flying back and forth, as my husband had to continue his work schedule, our holidays were put on hold, and then I was dropped into the middle of Doctors, rehab, weekly meetings with the team of doctors evaluating Mother's progress, and all of the legal aspects, that needed to be addressed, Power of Attorney forms, Advanced Medical Directives, etc.... dealing with relatives, and their input, dealing with their mini dramas, as they are so good at living, and sharing, even at time as this was, it was so very stressful, and then to find out that the final evaluation was that Mother would never be able to live independently again, and that we or I as it turned out to be, as I became the point person, that everything was referred to, and then I had the duty of reporting to the rest of the family, as you soon find out that the Doctors, nurses, therapists, they have a very limited amount of time that they are willing to spend with family members, so one person is selected as the "point person" and that person than relays all the pertinent information to all others, and that person was me! The next aspect was meeting with the Team of Doctors, and being told that we had to address, what is referred to as reaching the " insurance plateau out " level, which was like, what is that? Oh, simply your Mother has reached the level of that in which her insurance will no longer pay, my head spinning, and on top of that, there had to be a "Safe discharge Plan in effect" meaning even though the insurance would no longer pay, the hospital would not release her, given her deficits, unless I had a safe plan in place for her, i.e. a long term care facility, and or my home, or whatever we or I could come up with, because they would not release her because they would not assume liability if she indeed returned home to her prior residence she was unable to live alone, not even with in home health care in place. If I didn't put together a "Safe Discharge Plan" in effect, they would select a long term nursing facility and that would be that, it was a living nightmare. All of that is prior to Mother even being diagnosed with Alzheimer's/Dementia, no that came a year later, after I had relocated her to my state, to oversee her care. That is the beginning of my journey into the caregiving world, and five plus years later, I'm still in the thick of it, so I completely agree with opening ones self up to receiving, it's so important, but more important for me, was that I learned a very harsh lesson, the people that I thought would be there for us, i.e. extended family, it's safe to say, they were not, and that was one of the most heartbreaking aspects of the entire story. I remember sitting in one of the family rooms that the hospital provides, while Mother was in her daily rehabilitation routines, reading one of those hospital magazines that they so freely provide, and I was reading an article that clearly stated that when something like this happens in ones life, to be prepared for friends and loved ones to abandon you and your loved one, I thought to myself, O.M.G. that would never happen, not my family, not my friends, impossible, but guess what? That is exactly what happens especially in a long caring process that followed in the case of my Mother, it's sad but it's true, and that is why I went to the therapist, as I was literally heartbroken, overwhelmed, my life put on hold, and for the most part, very, very, much alone, in seeking the medical care and help that was needed for Mother. I also learned that one can express their needs, which is important, don't assume that others will simply tune in and figure out what is needed, they will not, but more important once you do express your needs and or concerns, be very much aware, that they may not respond to your needs, and then you really learn the true reality of what it's like to be dropped into a situation that has so many facets, your head is spinning, your heart is breaking, and exhaustion becomes your steady companion. I have found more solace in others that have walked this road than that of family members, and certain friends, as time goes on, they go on with their lives, while you are in a place were your life continues, but it's not the same, and your outlook, or at least my outlook on others and dramatically changed. I'm not the naïve little sweetheart that I once was, always, looking at the good, and being naïve to the fact that others simply do not live their lives in the way I have, I've always been giving, and perhaps this is my lesson, to take of those rose colored glasses and see others for what they really are ~ character is an interesting beast, some have it and others think they have it, and then there are the rest of us that actually live our lives with character and grace. This experience has redefined my outlook on many things, but with that being stated, I'm glad that I have had the courage to live this, to provide the love and care that my Mother requires, and to still live my life with an open heart, walk with grace and be the example to my family and friends, I don't want to live my life with a closed heart, a dose of pure reality, that's a good thing, but I'm still have a very open heart and I'm proud that I can actually open myself up to receiving and giving, it's a wonderful aspect of life.


almost 11 years, said...

Anonymous, Kyna and Boisegem, Everything you said is soooooo true. I'm one of the male caregivers. It's my nature and in the toughest of times, lonliness, self loathing, second guessing all rear their ugly heads. A dear friend once told me when he was in the processing of dying and I quote "Roger, you are a gracious giver, it's time you become as gracious a reciever as you are a giver". He gave me a huge gift and thanked me for my part in his life. We as care givers, give until there is nothing left to give and then give some more. I do believe that can be stated in many way, call is Karma, Paying it forward, What goes around comes around, no matter how you see it, we are what makes this world a better place and should be, proud, greatful to have continued to dig deeper and deeper to comfort our loved ones, friends and family. What ever we do or don't do, the focus is on them, right, or wrong. If you start to feel out of sorts, burned out and just plain fried, remember, every other care giver would do the same for you! You are never alone on your journey, we are all in this together. My door is always open to anyone here no matter where you are, if you come to the great state of Maine, you have a place to say... Love, hugs and peace in your hearts. Roger


almost 11 years, said...

These are all the feelings I've experienced, but was afraid to admit.


almost 11 years, said...

I went through each of these things. When I needed help, it seemed like there was very little of it from my friends. After my husband died, it seemed like the friends we had, just left. It was like, "Well, he's gone, we don't need to do anything for them anymore." Loneliness set in because suddenly I had no one at home and everyone seemed to be 'busy'. It was so stressful for me during and after his death that I ended up in the hospital due to heart problems brought on by the stress of everything. I cannot stress enough, have a good support system in place.


almost 11 years, said...

As a daughter, sister, wife, mother, and now grandmother I have been the resident caregiver to my entire family for the better half of my life, it's something that comes along with the said roles stated above and I think part of being a woman. That is not to say that men are not fabulous caregivers, because they can be and they are on many levels. What I have come to know is that being a caregiver to an aging parent with Alzheimer's Dementia, is a whole different paradigm and it has made me, re-evaluate my contribution as the resident caregiver and chief in my family. At some point during this time caring for Mother, I really started to think about how much caring that I have provided in my lifetime, and with that reality, looking back, I realized that for the most part I have always put the needs of everyone else before my own needs. I feel that this is a mistake on my part in life, as I am just as deserving of the same care and consideration that I have freely bestowed on my loved ones. If there is an upside to this disease, and it's very difficult to find one, it would be that I have learned to be that compassionate caregiver to myself, and not feel guilty about it, my daily mantra, "I matter too." and I mean it!


almost 11 years, said...

You have hit the nail on the head with this article. I found it so very encouraging. Thank you.


almost 11 years, said...

Lots of times in life we are care-givers, whether with that name or another. So easy to be a self-critic, especially if there is no one saying the opposite,


almost 11 years, said...

I was intensively engaged in eldercare for my parents for about 20 years, my father until age 84, and my mother until age 93. I have felt all those emotions, and in retrospect, I wish I had recognized and dealt with them better, taken them into perspective. It is a lonely road, as caregiver, and only those whom have gone through it truly understand and have empathy and sympathy. I am a son, my parents lived with me, my sister was afar, and she did not understand or have empathy and sympathy, and sometimes attacked me on my sporadic unemployment and not being more diligent in finding work. My parents and I lived in poverty and I loaded up on debt when I was unemployed to pay those tremendous care related expenses. Only my three female cousins who have gone through the same with their parents truly understood, in particular, one of them. Walk a mile in my shoes certainly applies.


almost 11 years, said...

Knowing how common these emotions are and no longer feeling alone.


almost 11 years, said...

Thank you for that last line. I have been critisized for "laughing at an the wrong thing for the wrong reason" its a nervous laugh I have always had - and it makes me feel better. Almost relief.


almost 11 years, said...

Robin, LOL back, the Lorazapam is for Mom, not me. I do have bouts of severe depression, exhaustion and self loathing for what you stated so well, my weaknesses but I've long ago tossed that thought aside. As I stated before. I find that taking time with the emotions, examining them, feeling them, being with them seems to cleans my soul and gives me the strength to continue on. Sometimes it takes a few days but when it's over I do feel much better and revived in strength and in my soul. You are fortunate that you're Dr. supported you, mine thinks I should give up the fight for my own well being. I have had several exaserbations with my MS and though it scares me. Like a good BM, this too shall pass..... LOL It's a pleasure chatting with you, Roger.


almost 11 years, said...

Roger, I agree with your decision, they are difficult decisions to be made, that's for sure. I know that this is not a laughing matter, but I did have to laugh out loud when reading your post, as for the occasional Lorazipam for anxiety, because my Doctor has prescribed this medication for ME ~ and I take it, when needed, I also take an daily low dosage anti-depressant, at the urging of my Physician. In the beginning, I did not want to take any kind of medications, as listed above, because I thought I could manage my own anxiety with yoga, walking, and support groups, but I became extremely depressed, and overwhelmed by pure physical exhaustion, unlike anything that I've ever know, they call it compassion fatigue, and I honestly thought it was bull ..... until it happened to me. I remember when I decided to actually listen to my personal physician as I went for my scheduled visit, he walked into the examination room, and I looked at him, and he looked at me, and I burst into tears, and I could not stop crying, I mean I completely lost it, I was sobbing, I was so exhausted, physically, emotionally, and spiritually depleted. My doctor sat down next to me, put his arms around me, and told me that I would be alright, that he would be here for me, no matter what . . . I will never forget that moment in time. I knew right then and there that I did indeed need to rethink my stance on taking the anti-depressant and I also had the Lorazipam filled, and I don't feel guilty about the decision. The point being that many of us go into this situation thinking that we can handle the emotional and physical aspects of providing constant care, the financial drain, the elemental strain on personal relationships, and the reality is, few are capable of handling this kind of experience with a strong will and determination. This disease will kill the family caregiver, in many instances before the patient passes, it's detrimental to ones well being, and to think that you are the exception to the rule, is a huge mistake. I now except my vulnerabilities and I welcome them, as they are the sign of my humanness, and perhaps before I would have looked at this as some kind of weakness on my part, I do not do that anymore, no I do not, because, this is one long hard road of reality that is unknown to anyone that has not traveled this path. I too send love, hugs and prayers ~ Robin


almost 11 years, said...

Lizzy and Boisegem, Mom is in the early/late stage and have been through it all with Dad too, God rest his soul. At this point for me, any non essential meds have been stopped. To aboid stroke, she is still getting a 325 mg aspirin each day and occasional Lorazipam for anxiety. It's a difficult decision to make and I think about what they would have wanted and I use how they cared for their parents when I made it. Whatever your decision is, it's the right one for you and your circumstances, no one else in their right mind would dissagree and would support you 100%. I've had ramifications from the decision but I live with my decision and stand fast to it period. Much love, hugs and prayers to all of us on this journey... Roger


almost 11 years, said...

Wow, Lizzie, I'm really touched by your post! I've been home all day today caring for my Mother, and I hear what your saying, there are days like today, when I think to myself, why in the hell am I doing this? I too go through periods where I find myself feeling the exact emotions of depression, resentment, and as of late the isolation as her disease of Alzheimer's is progressing. It's simply exhausting to have to be someone else's memory, to have to constantly answer the same questions, over and over, and over again, it is truly an exercise in extreme patience. It sounds unbelievable that the insurance would cancel the In Home Health Care, but I believe it, I know how difficult it is to find the resources needed in addressing the care needed for your loved one, I've gone through this myself, and it's very trying, and time consuming to address the care that is needed. It seems that the more the family caregiver does, the less that is available to the patient. I have been really frustrated by the entire medical system, in relation to doctor's actually having real, personal knowledge of what it is like for the caregiver, my Mother has Medicare and health insurance, and it's still a struggle to find helpful resources. I have actually had my Mother's primary Doctor and her Neurologist suggest that I completely stop giving mother her regular medications, i.e. for blood pressure, meds that are not even related to Alzheimer's, meds that she has taken prior to her diagnosis of the disease, and as it was stated, "how do you feel, about just letting nature taking it's course?". I was in a state of shock, I really couldn't believe what I was hearing, but this actually happened, my response was, that I couldn't within my moral compass, agree, to this this suggestion, what if I did agree to the above and Mother stroked out, but was still alive, and then what? I'm still in disbelief but this is a true story, as if this situation is not already the most difficult challenge I've ever experienced. My Mother, is not in the final stages of the disease, she is actually in the later part of the middle stages of Alzheimer's, perhaps I would feel different if she was in the final stages of the disease, but that's not the case, and truly am still taken back by the suggestions made by the doctors caring for her. Please take care of yourself. I know it difficult, my thoughts are with you.


almost 11 years, said...

I commented on this article about two years ago and honestly rereading this article was both very helpful and yet feel like I've been there done that. Trying to find support with dealing with the issues of my mother without losing myself. Have been finding that while I feel like I'm making concerted efforts to maintain a hold on myself and my life, that I still feel as though she's holding on harder to maintain the connections because of her more ranging fears of abandonment. She is suffering from PTSD, from several traumatic childhood events, as well as at least two adult events. She also has had two heart attacks, one stroke and several mini strokes. She is morbidly obese and suffers from diabetes, diabetic neuropathy, one replaced knee, and she recently fell and dislocated her shoulder. She is also very arthritic. She is beginning to have severe issues with memory and taking care of herself. Since, the last hospitalization the insurance cancelled the home health care because she 'didn't need it anymore'. She doesn't drive and she won't get involved in out of the house activities and so I'm her primary contact as well as her caregiver. We are way past the switching of roles and sometimes find myself pining for my mother the way she used to be. Anger, depression, anger, resentment, anger, it's all there. Can so empathize with all of the people commenting here because I'm hanging on by an unraveling thread.


almost 11 years, said...

Dear Beentherestillthere, ~ I do not think anyone would place blame on your for wanting to live your life, in fact, I'm proud of you, life goes on, and that is one of the most hideous aspects of caring for a loved one, your, life, stops, and everyone else goes on with their lives. I think what you have done takes an enormous amount of courage, and your still providing care for your husband, so it's not like you abandoned him in his time of need. Take good care of yourself, and know that you matter too!


almost 11 years, said...

Dear Anonymous caregiver, Yes these are the facts and they are depressing, but we need you, we need voices to be heard, to make a difference. The point being is that sometimes you will not have the option to kill yourself before you allow yourself to be in a situation that requires someone else to care for you, if you have a stroke, or you lose your cognitive abilities, your not going to be in any position to say no ~ as depressing as the situation is, the only way to bring change is to be an advocate for the wrong, that is being experienced by regular families across our country. I am in agreement with how our country prioritizes war, endowments to corporations (especially the ones that do not a dime in taxes) and then our Congress is willing to slash what is now referred to as "entitlements" to the American Citizen so that we can go with less, to fund their agendas, it's wrong on so many levels


almost 11 years, said...

This is all too real and the actions can cause immense harm to the caregiver! I needed heart surgery.


about 11 years, said...

I have been caregiving for my husband for over a dozen years now. I brought him home from the hospital after a massive stoke and watched the twin towers going down several times before it registered with me what was happening. He had been in the hospital for six weeks and out because his insurance was exhausted. His after-care and therapy exhausted our savings for our retirement rapidly. He was 56 years old and I was 51. Life as I knew it, died the day he had the stroke. I remember praying that he would live, with no thought as to what his quality of life would be like if he should. I know that I experienced all of the articles points and still do have the anger and resentment (depression) from day to day. I became the wife no more and the mother forever to him. For the first five years or so, I thought "he will get better". Then it came to me that "NO! This was the best it would get-EVER!" Several years more pass and I become very depressed-want to die depressed! My doctor finally said he had to go for care other than home or I would be "put away" myself. It took a while to find the right "fit" for him. His behaviors wouldn't allow some of the placements and money was an issue also. I finally explored a Veteran's Home and it "fit just right". He is in their day to day care and a great burden has been lifted. After a year, my heart and soul healed enough to look for someone to fill my life with love again. I found that person and have gone on with life as I watch over my husband too. I still feel so much resentment that I can't be truly free of the worry of him (husband) and guilt of having him (guy-friend) in my life. I am the one to watch over him(husband) but couldn't do it without him (the guy friend watching over me). Does that make sense?


about 11 years, said...

It's almost 11:30 im sitting here in a chair in my 87 year old moms apartment.With no help.Is there anyone that can help me.I have no moneyto get her help and me.


about 11 years, said...

This is just amazing. Controlling deadly emotions


about 11 years, said...

Layo37, you will alwasy feel the guitl in the illogical mind but your logical mind MUST know that all we can do is our best, and no matter what, you did your absolute best. I was standing at the sink overlooking the den and Dad fell and it ultimately took him away. The falls your husband had could very well have happened while you were standing right there. Let go of the guilt and focus on the wonderful memories that will make you smile. Love and hugs to you!


about 11 years, said...

Thank you so much for this article! I still hold so much guilt over my caretaking of my deceased husband. To make ends meet I had to work part time (we had a lot of trouble paying for my husband's medications). While he was very ill, in the last few months of his life I worked from 5PM to 9PM. He was home alone at that time. Well, two times it happened that he fell in the house and couldn't get up to answer the phone or even call me or anybody. Yet, I continued to work even after the falls. I feel guilty because I'm thinking that he maybe hit his head two times, and that maybe had to do with the hemorrhagic stroke he got early one morning. This was what let to his hospitalization, surgery, and, ultimately, his stay in a nursing home, where he died suddenly. Please tell me- has anyone else had the same experience in having to work while an ill loved-one stayed home- and do you feel the same guilt as I do? Thanks to all!


about 11 years, said...

Though all of these things are great, keep in mind first and foremost that YOUR feelings and emotions are real and deserve consideration as well, right or wrong, they are real. Hugs and Prayers to all of us on this journey! I have found that laughter is the best medicine...


about 11 years, said...

I talk to people to have gone from doctor to doctor.They talk about side-effects of meds. One was mis-diagnosed and had been on the wrong medication for years.Frankly I'm scared of the disease and the treatments. Dementia and parkisons go hand and hand but what about the medication they put them on. I'm the wife(caretaker) and have the decisions to make as to the right thing to do.


about 11 years, said...

Depression, guilt, anger, frustration, & just plain drained. Even when ask professionals for help....nothing. Go into Dr. appt. w/ the person....explain the worsening/on-going symptoms, & nothing's done. Just feeling you're the only 1 who's actually there. Feeling alone. Very sad. Stuck.


about 11 years, said...

Of all the pages, they were all helpful. This one I think hit home the most. I am having a very hard time at the moment. Guilt,anger, depression. I think more than anything, guilt.


about 11 years, said...

Right now i refuse to give my husband meds for his parkinsons and dementia. Everything we tried, reacted terrible on him. But i do have very guilty feelings when i hear what people say their loved ones are on, that might be help.. .


about 11 years, said...

, Been there many times! Forgot I also was having limited usage of my body capabilities. So, therefore was noticeing I was not giving all my best to my loved ones. You have to learn what your own limits are so they can get the proper care. Not sorry for my last show of love I could give all 7 family members. May they RIP..GOD BLESS


over 11 years, said...

Yes, life is very hard, & too sad. I can't deal with my Hubby's behaviors, anymore. It's taking a toll on both of us. I've had it. So done. Nobody to talk to, other than my elderly Mom, & 1 friend. I'm in a chronic state of depression, stress, sadness, worry, & anger. Plus, I work full time at a locked mental health crisis center. So, I worry about what he's doing at home, alone, & job's stressful, too. It never ends. Come home to BS, every night, after work. I don't think I can bare much more.


over 11 years, said...

Hi. This is my first comment, and I simply need someone who understands to talk with. I have taking care of my mom, who is 87 for the past 15 years. She is an amputee and confined to a wheelchair. Until recently, her mental status was "steady" but recently she is having more and more problems. Her short term memory and perception is..... awful. I am realizing that I have already lost the mom that I knew. While it is hard, I am accepting this new reversal of roles, where I am the "parent" and she is the "child" who needs care. I have so many issues, but right now, I just put her to bed and she was crying. That just kills me. I had earlier tonight discussed, well, really chastised her for removing the dressing on her remaining foot and toes, which could have caused a huge problem with an ulcer on her toe. Since she cannot retain alot of information, I was trying to impress on her not to do this, due to the dire consequences. (I am trying to keep her remaining leg from being amputated.) I must have had a n angry tone, to have caused her to cry. I tried my best to explain to her that I was only worried and didn't mean to sound so harsh. My mom never, ever complains, and I know that I become frustrated and so very tired! Why, oh WHY do I get so short with her. I know I'm under alot of stress, but the last person I want to hurt is her. I feel like crawling into a hole and crying. No one to talk to this late at night. So very, very tired.


over 11 years, said...

I am 52 & my husband is going to b 61 in a couple of weeks we have been married for 2 years 2gether for 15. Prior to my husband's stroke this is my second marriage both with no children we have a dog who has warranted our attention for the past 9-10 years. She needs insulin shots twice a day & has been our priority for 11 years she is our 7 pd bundle of joy... My husband has no family is a loner... We r in the process of selling his home the one he lived in prior 2our marriage because we cant afford the upkeep since he is no longer working. I cant go back to work cause my husband needs me to take him to doctors appoinments, errands, homemaking & caregiving with his needs... My job now is to take care of him... I dont mind but i took care of both my parents when they were sick & my husband was there for me so i could help them but when he calls me a c--- word i see stars! He was always a gentleman, kind but after his stroke he is plain nasty, angry resentful. & he take this all out on me... My parents died & left me an appt in my parents house & i have been spending my time going back & forth to prepare for the move... When he is around other people he makes me look like im the bad one... He is disrepectful outside in public & lately i try to ignore him & walk away... I try to do everything for him to be independent but he has been so abusive i dont know how much more i could take & the thought of me being so far away 2 hrs drive each wayfrom my family home & he has been saying he doesnt want to come back with me to get the move underway... He doesnt make any sense sometimes & gets mad & friustrated when he cant verbalize it... His cognitive behavior was affected by the stroke & his short term memory is lacking at times... I constantly have to remind him to take his medicines, clean his person try to do chores or somekind of physical work of course without a cane cause its a man thing.... Quite frankley im disguested with him... Im taking anxiety medications cook clean shop prepare his food... I dont what to do next & am i doing the right thing? I told him he cant live alone though i am trying to make that possible in the future for him? Its pitiful to c him this way but fighting me isnt the answer? What do u suppose i do with the rest of our lives... I cant help but feel my/our life is over!


over 11 years, said...

I am a care provider through a local agency. The woman i take care of is bitter, angry and passive aggressive. I have done everything i know to connect with her. But i just cant do anything right and she constantly complains and critisizes me. What can i do as a profesdional to better care for her and get her to open up? Thanks rhonda


over 11 years, said...

I'm 25 and an expectant single mum dealing with a custody battle with my other two children.I care for my Nan and have been for a year after her stroke..she has aphasia. And I find my patience wears thin ecspecially when my Nan yells at me bout something beyond my control...no family help me so I feel alone. .sometimes I catch myself. Raising my voice or being assertive which embarrassingly catches the attention of public bystanders...I do resent to some degree I cannot getaway on weeks holiday...but my Nan raised me she was my strength till the stroke...overall. I love her so much I will not back down from my responsibility. As a carer but at times feel I am a crap carer because I don't have patience to assess my reaction or response and sometimes wont care to listen to her because frankly I don't understand her with her speech difficulty ...I do feel guilt lonely angry at myself for not listening or being impatient and unappreciated when she yells at me...end of rant lol


over 11 years, said...

Yea, my emotions are "˜out of control'. Pretty stuck. Totally losing it. SAD.


over 11 years, said...

good discussion and airing of what lies hidden


over 11 years, said...

I have felt all of those emotions as a caregiver of both of my parents. This article helped me, specially, with the issues of resentment and anger. Never thought it was so common among caregivers. I discussed those topics with a Psychologist and by just expressing those feelings relieved me of the tensions.


over 11 years, said...

I am 47 years old and have been a full time live in caregiver for my now 97 year old nana for 3 years now. She has dementia and at one time I was the director of a dementia unit so I was perfect to just help her due to the lack of funds. My parents are now going to move in and take over where I have left off. Prior to this I literally have had maybe 2 weeks off in the three years and her dementia has taken another drop. My packing is very confusing and it is causing her worry and repetition goes on for 4 hours...I am all she knows....I have become short and fustrated and not so nice and don't understand my behavior...I also believe she is dying and I will not be here when it happens and that is very difficult and makes me sad...I am very lost. We are very close and have been my entire life...she was almost more of a mom then my mom.


over 11 years, said...

What a bunch of unrealistic jibberish BS...none of the recommendations are based on reality....


over 11 years, said...

I just wanted to say that I am so proud of people who take this responsibilty on. My son has been diagnosed autism and MR, he is 8 years old. My husband and I are his caregivers for now, and we will do it for as long as we can. Every day brings something new, and emotions are always so incredibly high. One minute I am upset bc he put something ELSE up his nose/mouth, another minute I am begging my other kids to help me out. This article touches on so many areas of my life, and while I am so thankful to have my beautiful son, I know that it has taken it's toll. I was diagnosed crohn's disease, and my heart is out of balance, which is really terrifying. I don't know though.....is there really any other job out there that is more satisfying? It brings me such joy to know that I am able to care for my son (at least for now anyway) I have been given a wonderful oppertunity to just hold my son, love him, hug him, nuture him, and spend quality time with him. I really don't think there is anything better than that! He depends on his family to be there for him, and I am so very thankful to do that. I love you Nicholas!!


over 11 years, said...

I teach Social Gerontology and this is great information for my students. My dad also died from complications after having Pick's Disease for over 20 years and my mum and I were his primary caregivers until it got to be too much. We were very lucky with the facility we found for him, we believe he was happy there. Thank you for all the great information, keep i coming


over 11 years, said...

This article came into my sight at a good time. I was feeling tired, lonely and many of the feelings listed in the article. I am trying so hard to be strong and I forget that overall, I am not doing so bad as my mother's caregiver. I can not strive for perfection. I can only strive to do the best I can with the resources that are available to me. This article came in as a note from God saying, do not for get to take care of yourself too.


over 11 years, said...

I feel so much for anyone in the position of caregiving . . . but my heart really goes out to younger people who are essentially being robbed of their young adult years. This is heartbreaking, and I have total and absolute respect for anyone that is willing to place their life on hold to help and nurture a loved one during this difficult time. I have been married for 33 years, my husband and I had wonderful plans for this time in our lives. I am in my fifties and I have been caring for my Mother for over four years, my husband has been constant in his support. However, with that being said, extended family and friends go on with their lives, and they really do forget about the designated caregiver. It is extremely depressing, and isolating, and yes there is an element of loneliness that few would understand. In regards to criticism of the primary caregiver, as posted below, I find anyone that does not educate themselves about the disease, in our case it is Dementia/AD, and offers their advice from the outside looking in, are really making a dreadful experience worse. If they would like to offer their time, or perhaps, truly sit down and think of something that they could offer to the primary caregiver, such as perhaps a gift certificate for dinner, or something that would give additional respite to the care provider, that would be wonderful. Unfortunately, that doesnt' happen, they simply want to express themselves and offer their opinion of what they 'think' is best, well, I can tell anyone that is living this, until you spend your time, and make this kind of commitment, it is better to keep your opinions to yourself, it truly doesn't help, it may make the person offering their advice feel better, but it does nothing for the person who is actually doing the caregiving. This is a real point of contention with me, as I have listened to many so called well intended family offer their so called opinions, with little insight to what this particular disease entails. I say put your money where you mouth is, and offer something that will actually help the caregiver, give them some time to actually have their life back if only for a short period of time. You know what they say about opinions, everyone has one, just like something we all have.


over 11 years, said...

I found the part about resentment of the patient and remarks by helpful people who really don't know the situation to be true and right on. Also the part about listening to others who may have a better idea being not a criticism of the caregiver, but may actually be practical and needed. I found that very often I was not seeing the big picture as someone outside might see it. My view was narrow comparitively speaking. Those are two things I found helpful.


over 11 years, said...

OMG, #2 and #5 are SO very much me!! I felt resentment more in my twenties, when I was doing all my caregiving duties and trying to balance that with college or work and I could see how all the other twentysomethings out there were going out, having fun, engaging in multiple relationships (when I had to abandon relationships after my father's death and I started being my mom's caregiver), etc. I would've killed to have been an indie-absorbed hipster type who went to see small bands in clubs, dressed in paisley sun dresses, consumed artisan crafted microbrews, etc. That would've been where I'd been at had I had a chance to be a twentysomething. Now I have resentment toward other people in their thirties who got to experience all that and settle down, have families, live blissful lives with two (or more) healthy parents, etc. As for loneliness, I do feel extreme loneliness because I don't have a social life. I just don't have the time to do so. I would love to be able to go to coffee houses, participate in poetry slams (even though I suck as a poet), frequent art galleries, go back to painting (something that I was engaged with from when I was 10 - 20 years old), spend time hiking, and take some cooking classes, but I can't because I barely have enough energy to work, do caregiving, keep up my household, and go online. I'm fortunate if I can squeeze in five minutes of exercise in a day. So I bury my feelings and emotions in food and feel frustrated when it takes me a herculean amount of effort to not gain any weight and... argh. It is just so hard to be a younger caregiver and I desperately wish there was some support group out there where I could talk out my feelings and figure out a way of working past all this sadness, stress, frustration, and resentment. And now I'm going to cry! So... yeah, this article is so touching all my sensitive buttons right now.


over 11 years, said...

My aunt went thru what I am experiencing when my grandmother got Alzheimers and she moved my grandmother from her home to live with her and her husband in the country. The family really criticized my aunt for her choices and now I understand too well what she was going thru. She did not like the other family members visiting my grandmother in her home as they were always questioning her on why she had moved granny and she should not have sold the family home. My aunt used the money to care for my granny all those years when no one else stepped up to the plate to feed, bath and care for my grandmother. My aunt devoted her life to my granny for 12 years and got no thanks for all her efforts - no life of her own. She was bitter and we even judge her on that also. I am the oldest child and have had to move my mom and my youngest sister has yelled at me and called me all kinds names. She had really upset my middle sister and me by her actions lately and won't speak to me now. My mother would never have wanted things to end this way, she always told me to take care of her children and for us to love one another always. This disease had taken its toll and I hope others are helped by my story.


over 11 years, said...

I just spent 30 minutes composing my comments, only to have caring.com tell me that I needed to get a new "something" so I did, and now I'm too tired to re-do this. Long story short version: mom is 95, can't see hardly anything, can't hear, is getting very senile--obsesses about my brother--he's 68 and a schzofrenic (sp) but medicated and he's been able to live a good life last six years. But she has him in the past, "is he al right" "can he come here" can he take a taxi--(he lives an hour away). I'm 71 and so is my husband. Our 18 yr old granddaughter came to live with us in November. My husband asks me "when is it going to be our turn?" My sister lives about 1-1/2 hour away and does take mom every couple of months for a month or so. She and her husband both work, and have no children. I feel bad sending mom there because I know how frustrated they get and mom really hates to leave here I don't know what anyone can tell me---I guess I wanted to vent. Thanks for listening.


over 11 years, said...

Hafa Adai All, This article was really helpful for me. Thanks to Ms. Scott for creating it. Stumper, livin' the dream


over 11 years, said...

To TiredGuy, Thanks for "˜Well Spouse Association' info. I'm going to check it out!


over 11 years, said...

The authors are, David A. Travland, PH D and Rhonda Travland. I hope this helps you. It helped me.


over 11 years, said...

TIRED GUY, MAY I KNOW THE AUTHOR OF THE BOOK YOU ARE TALKING ABOUT PLEASE "THE TOUGH AND TENDER CAREGIVER"


over 11 years, said...

Since my last post here I found a site that has helped me a great deal. I suggest going to "Well Spouse Association". It's full of people going through the same things we are. I also found the book "The Tough & Tender Caregiver" to be a great source of information. I am in a much better place since finding both of these. Good luck to you all.


over 11 years, said...

I too find comfort in the sharing of everyones stories, until you have lived this dynamic for yourself, it would be very difficult to have the empathy for what others experience. The one aspect that really brings me to the edge is family and extended family that are not on the day to day regime of caregiving, they come to visit and then they want to dispense their advice, you should do this or you should do that . . . it's unnerving to say the least. Even though you try to explain the disease, the exhaustion that ones goes through in caring 24/7 for a loved one, they think that they can step in and out, and they know what your going through, it really drives me nuts. The isolation of caring for your loved one is difficult, and although you welcome a visit from family, it ends up bringing more stress to an already stressful situation. I say honor your emotions and your feelings, because others that may be well intended do not have a clue as to what this experience is really like.


over 11 years, said...

This is my field and i can see a lot going on now !! I'm learning more and more about caregiving which is very good for me.I promise to take care of my clients in a better way. Thanks for these lessons I appreciate the the time your putting in to let us know what to do. Amy God Bless you. tinbarsca.


over 11 years, said...

Naming the emotions and then antidotes for the stressed-laiden feelings.


over 11 years, said...

KUDOS 2 everyone who shared their stories & bless all of you caregivers! This article was extremely helpful & I hope it helps MANY others, too. I'm a CNA & my 86 year old father-in-law lives with us-again. I find comfort in the on-line sharing board here at Caring.com. I also find the story of 104 year old caregiver, Rosario Schielzeth of FL., very inspiring! Hugs from WI! <)))><


over 11 years, said...

These points truly validate my feelings. Thanks. There canNOT be any human condition more stressful than long term caretaking of dementia. Friends and faraway family cannot possibly comprehend unless they themselves are given the responsibility and it is useless to moan or groan.


over 11 years, said...

My husband passed Jan 2012 after being on the decline for years with PSP - the last 20 months he was in hospice care. All your points are valid, helpful and I went through them. The point on Grief was right on - thanks for your validation of my caregiving.


over 11 years, said...

It helped me to release pent up emotions expressed via tears streaming down my face & the pain I feel in my heart. Today, Mom's Primary Care Dr. will receive my Urgent, USPO Certified 6 page Timeline of my mom's 2012 erratic, odd behaviors. "It is my understanding he has to refer her to a Elder Care Psychiatrist/ Psychologist who can provide home visits to verify & record how unsafe our home is & my mom's continued denial of it all. Let my 2012 Timeline serve as an aid for all our combined benefit." So right now I let it go & give it all back to the Divine. To myself , I offer a much earned day off in the sunshine in our blooming garden to refocus on the upcoming harvest of mom's renewed wellness. Underlying it all: I pray mom does not have dementia & that she can get the proper help her life needs via her Dr's elder-focused, mental health referral to the proper professional(s).


over 11 years, said...

Although my loved one (My husband) has passed away, I now see that I did have all the emotions listed. Now I understand my frustration and anger at my spouse as he was dying. His anger at the world made him overly critical of me, and he was stubborn in complying with what I thought would be good for him. His life dwindled into dementia and he could not remember past events, and would get angry at me for not agreeing with him. Thanks to this article, I can now apply it to my caregiving for my friend, who is 85 and in poor health. I now recognize the emotions I am experiencing as normal, and will try to be kind to myself with this difficult situation. Thank you again!


over 11 years, said...

Well written, easy to follow, good advice...thank you.


over 11 years, said...

I am three months out of 24/7 care giving job. I am STILL exhausted and struggling to rebuild a social life. I thought that all of my issues would end when the job ended. That was absolutely not the case. I appreciate the validation of this article. As my boyfriends said, "You had the toughest job in the world." It takes time to return to normacy. Hats off to the care givers of the world!


over 11 years, said...

I went through these emotions too while caring for my mother. This website and having supportive husband and friends helped me cope. Luckily my father was fairly healthy during my mother's long-term illness. My mother is gone now and I miss her dearly and think about her everyday. Since I have learned so much from caring for her, my father is receiving "better" care for his current frailed health. My friends and I talk a lot about caring for parent(s) because they are going through it and we try to support one another. It is a tough and at times gruelling journey that only other caregivers understand. This article is a good reminder for me to balance the threat of guilt/angry feelings versus maintaining a healthy perspective. My prayers to all of you caregivers.


over 11 years, said...

Yes. it confirms what I already knew and relieves me of feeling guilty about the unknown yet to come.


over 11 years, said...

I just began care-taking for my mom 8 months ago, and she was officially diagnosed last week with Moderate Alzheimer's. God gave her the perfect neurologist in my opinion, because his mother has AD as well. My father was diagnosed last year, and found out the Neuro Dr.'s dad had it also! "Someone I can relate to in person" I thought. I am so thankful for the information he has given, along with the friends God has placed in my life who have lost loved one's to this disease. Hearing about the options I have as time goes on, reading up on the disease, educating yourself as well as great articles like this are so helpful. Find support groups, classes on the illnesses and the role of caregivers for those illnesses, and "down-time", even if it's just an hour away from them, can help you immensely. it's hard, but well worth it. There's a bond you will never regret having with them. They are so worth your time....God Bless you all ♥


over 11 years, said...

Reading this article made me feel as though someone had gotten into my head and found out exactly what I was thinking---and that I'm NOT alone in these feelings!!! Some I already knew and use and some are new and I will certainly try!! Thanks for the great article.


almost 12 years, said...

I, too, have all the emotions. I try to do the suggested "˜things'. It's, still, very hard.


almost 12 years, said...

I just found out that I pretty much have all of the emotions listed. I also took the test for caregiver burn out. I now know that i'm burned out as well. The only break I get is to go to the gym and work out. I've been the caregiver since 1995 and I don't see anything changing. My wife does not qualify for any assistance at this time because I have a pension. It was suggested that I divorce her because then she would be able to be place in a nursing home. I guess i'll have to contact an attorney to get all of our leagal options. What I have learned in this journey is that all the years I spent being constantly in deadly force situations, was to me, less stressfull than being a caregiver.


almost 12 years, said...

i am 51 years old and my husband has parkinsons and now lewy body dementia. the portions of this article that hit me the most were the anger, grief and lonliness. Every week brings something else to grieve for. this week was about not having someone to bring me a cup of tea. I am reminded now of when the children were little. I tried being the stay at home mom, but after a year felt there was more to life than diapers, going to the park and watching sesame street. I was able to go back to work part time for my sanity and found myself a much better parent for it. Sadly, there are much more child care centers than adult daycare centers. I left my job to care for my darling husband and I pray that was not a mistake.


almost 12 years, said...

I lost my grandpa in august to death and now I am losing grandma to alzheimer's , I just dont understand I am so angry. She has been my best friend since I was a little girl, Their is nothing we have not shared, I know when I cry I am crying for myself because I miss her so much. I feel bad saying it but I wish God would take her home. Her and Grandpa were married for sixty four years so why should they be seperarated now. I go and see her every day hoping that to day will be good and I leave crying . It is just so unfair and my hands are tied, When I was growing up she made ever thing better and I want to do the same for her I can not and it breaks my heart. Thanks for letting me ramble


almost 12 years, said...

I relate all too well, unfortunately. I am going on my 4th year of caring for my 88yo mother who now has mid-level Alzheimers. I was living with her at the onset of this terrible disease (still am), so I got to see how it starts. Caregiving has taken a major toll on my physical and mental health. Without the help of a therapist (who's mother also had AD) and my AD Caregiver Support Group - I'd likely be in a mental hospital by now (not kidding). I have a brother living 7 minutes away who never bothers to pop his head in to see how mom is doing, nor does he ever ask me about her! He's too busy having a life. What about my life? It's on hold. I do my best, but I am only human. The obsessive tendencies drive me crazy - doing her nails 10 times a day, reviewing her calendar 35 times a day, etc. Arghhhhhhh! Thanks for listening. Hugs to all you family caregivers. We must take care of ourselves - as no one else will.


almost 12 years, said...

I'm pretty sure i've had all of these feelings at one time or another. right now it's the guilt. my mother moved into a nursing home 4 months ago and everyday is hard. i visit her everyday and when i don't because i go out of town or go to dinner or a movie i feel tremendous guilt as if I'm abandoning her. i cry alot lately because it hurts me to not have her home with me. i took care of her for 9 years. i'm 36 years old, not married and no kids. it was always just my mom & my job.


about 12 years, said...

It's hard to always keep your feelings to yourself, and it is not healthy. I truly believe that the best way to keep yourself healthy ( emotionally ) is to belong to a support group in which the participates have some knowledge and experience into the caregiving dynamic, especially when caring for a family member. Everyone has a different time frame that they are dealing with, some are new to the caring dynamic and some have been doing this for a very long time. It helps to share feelings with people that have experienced this, wherever they may be in the their lives. Friends and family can offer support, but rarely does it compare to others that have actually walked the walk.


about 12 years, said...

Great article. I would add, as a professional coach, that the way through the feelings and emotions is literally through them. It takes more energy to repress them, stuff them down, put on the brave face than it does to let them rip (safely and appropriately). With anger, for example, I find beating the pillows on my bed and screaming into them, or doing an 'anger dance' almost to the point of exhaustion, completely removes the anger. With the exhaustion of the powerful emotional outburst comes tranquility and some space to consider the truth of 'what is'. The truth being "I love/care for my father/mother and I am doing my best". Adding a caveat - shout and scream quietly or in a space where you can't be heard and don't hurt yourself - try it. As for resentment - write a letter or a list of all the things you resent about the other person/authority/God - yes he can take it/family. When finished look at the list and ask yourself what are the benefits, then the costs to me of holding this resentment - you will find that there are few real benefits - other then the ones that seem like it but are really just harmful to me - like "I just don't have to speak to her". That really is a cost - it costs me energy (for one) to stop speaking to someone, especially if they are in my life and around the person in some capacity that I am caring for. The other costs are huge - to our health; our spiritual well-being - "am I really that person who 'hates/dislikes/add your own word?"; our personal relationships and more. Then decide - do you want to be a person who holds resentment or do you want the be the 'real you' - the person who has given up a lot to do the job you are doing; the person of generous spirit; of kind and loving heart - yes, that IS you! You are not the first resentful person - you are a human being who sometimes feels resentful. Then just let it go. When you see the costs to you that is easy to do. The other person may have little idea of what is going on for you, why you are upset, so it is only you that the resentment is harming. Cry when you need to and take plenty of respite breaks! I've been doing this for 7 years and have learned that not taking breaks costs big time! All my best to you - you, the amazing person who does so much to help someone else!


about 12 years, said...

Putting labels on feelings is remarkably helpful. Acknowledging the full range of feelings, including resentment, guilt and anger, resonated well. That the feelings matter for the caregiver as a person, rather than the caregiver as an instrument in the existence of the identified patient, is crucial.


about 12 years, said...

Very helpful indeed! I've heard so much advise from others that don't even know nor understand Alzheimer; it drives me nuts. They mean well but I try to remain calm because they may make some sense and I might get an idea towards something I don't make sense of. I've joined a group here that is exactly what I need, so understanding, helpful, caring, professional, should I go on? Well, I can't go out as much and I do feel that my Mom right now is more important than my social life; I take some time for myself here and at the grocery stores. Mom loves that too. LOL I wish to thank you all for your continued help. Hope this New Year brings much more blessings to you and know that I love you all....


over 12 years, said...

Most of the time I feel so isolated and alone, but finding this site and reading the stories here have given me such hope! What wonderful people are on here. Such loving and giving souls. Everyone on here is a testament to the ability of the heart to love in the most adverse of circumstances. My husband and daughter help me every day with my mother, in spite of the toll it is taking on us, and they are right in the category of people I am reading about here. God bless each and every one of the caregivers on here. Deborah


over 12 years, said...

Agreed, it is a 24/7, no days off, no vacations and isolation as you provide care ~ My Mother lives with us and has for two and half years. The time commitment is complete overwhelm and takes a toll on you after a short amount of time. We are never prepared for this experience beforehand, probably a blessing in disguise. Had I known in advance, there is no way that I would have have ever imagined the impact on one's life. It takes a very strong individual to be able to provide this kind of time commitment, it is a shape shifter in one's life, at times it seems almost impossible to describe your feelings and emotions. I also believe that you have to practice extreme self care in order to survive and not ruin your own health in the process. This has been critical to my being able to continue caring for our Mother. I also went to therapy for two and half years, which was extremely helpful in moving on with our life, and letting go of the resentment that I was feeling, because of the dynamics of family members that do not have a clue and at times act as if they couldl care less, of your contribution to the care provided to thier loved one ~ all too common. The pain and resentment that I felt in the beginning was almost unbearable, but I was the one suffering, so I had to let it go, and to release that anger and resent -ment that was consuming me . . . it helped me so much. Now I could give a rip, about what my extended family think, and I am not here to educate them about this disease or the caring process. I now save that energy and I feel better. Yes, it is hurtful and I have cried a river of tears in the past . . . now I do not. I will always for the rest of my life, be an advocate for the caregiver, that gives without, the recognition that they are so deserving of ~


over 12 years, said...

It's not easy. Getting through it is possible but what lies at the end? I've an 88 year old toddler living with me, not at a center, not at a facility, right here, all the time...this is beyond "caring." This is consuming.


over 12 years, said...

It seems that the once again I am dealing with the AD agitation that seems to come along with Holidays. In the past four years, every holiday seems to be a point of complete exhaustion, and frustration, no matter how much advanced planning that I do ~ I am wondering if anyone else deals with this problem with their loved ones? Yesterday in particular was extremely difficult, I send Mother to an Adult Day Care Center, two times a week, she has been attending this center for two and half years, a trusted care provider that works at the center, came to pick her up, she announced in front of my Mother that one of the participants that my Mother was very fond of, had died, the previous Monday. It was just a matter of fact type of statement, and I was completely at a loss for her lack of judgement. My husband and I discussed the situation, he felt the same as I did, that this should have been handled in a different way ~ later in the afternoon I had to discuss this with the care provider, I did not want to discuss this with the Center and her Employer, as I knew that she would more than likely be in trouble for her lack of judgement. This is just an small example of the hands on, never ending tasks that one goes through in caring for loved ones, although it is minor in the scheme of the daily caring process, it still is one more, frustration and annoyance that could have been avoided if, better judgement had been used by the care provider. I am the one that is left to deal with the endless questions, and even the agitation, and confusion and fear that my Mother is dealing with . . . it never ends.


over 12 years, said...

Explains what a caregiver goes through. They need understanding, not to be made to feel guilty from thoses that don't live it 24/7..caregivers do enough of that on their own. Good to have articles like this..shows what all caregivers experience.


over 12 years, said...

Please Caregivers understand that all this stress is harmful to your own health- mental & physical! I have read that the death rate for (family member)caregivers of Alzheimer's Patients is almost as high as the death rate of their patients! I suffered caregiver burnout taking care of my F-I-L and he was not hard to care for - it was just that my life was my job and my job was my life 24/7/365 for 5 1/2 yrs with only 1- yes 1 weekend off the entire time (also had 5 small children at the time. But what worries me most is those who care for lovbed ones long beyond when it is healthy for the caregiver and the patient- there comes a time with Alzheimers they NEED to be in a facility where they CAN be watched over 24 hrs a day--- a single person cannot do this!!! I watched my Mother care for my step-father a good 2yrs longer than she should have.... let me tell you she eas only 60yrs old with few health problems of her own and she died 2weeks before he did- very suddenly and without warning she had a massive heart attack. So please allow yourself to let it go- you are not a 'bad' person if you can't do it- It is not your responsibility to do this when it becomes too dificult and No One I Repeat NO ONE Expects You to be a Martyr!! I Truly wish she would have listened when we begged her to put him in a home. I miss her so much! Please Caregivers listen to your own body and ghet respit! No One person can care for another (or 2 others) all alone! It ius not humanly possible- and if you cannot find resources Dial 211- it is available almost everywhere and will give you local resources and information and the person on the other end has always been very friendly and helpful when I've called- they can help and give you hope! Please Caregivers Remember the old saying cuz it's so true... If you don't take care of yourself you can't take care of anyone Else!! Take Care of Yourselves!!!


over 12 years, said...

To LoveMySon: It's good to see someone else on here dealing w/ Schizophrenia. Though, I'm sad to see it's a violent type. My Hubby has this, & other health issues. Also, I work on a locked Mental Health Crisis Unit. So, I get it. I hope he gets the help he needs. But, You are right to separate yourself from this while he's in the grip of it. You stay strong, & don't feel guilty for taking care of yourself.


over 12 years, said...

This whole website has been helpful to me. I was a caregiver several years ago to my mama with Alzheimer's. Wish I had know about this then. I have been helping my neighbor whose husband is end stage Alz.....and have been sharing your articles with her. They have helped her alot. Thanks & God bless your continued endeavors.


over 12 years, said...

My dad has alzheimers and mom is loosing her eyesight . I am their caregiver and I feel needed for first time in a long time. I love them but I am their caregiver because the economy. Or by default (lol). I moved in with them, I am 50 female, not married and sadly no children. OH yes , no money. I used to be attactive but now I have a unkept look going on. My well-to-do sibley's (four of them) have RUDELY refused to help me with my parents. I am wiped out and very resentful. I father uses a catheter now and being retired minister with alzheimers has made a more difficult transistion(spelling no wonder iam broke lol). My mother can be hateful and threatens to put him in a nursing everytime I mention I am tired. I dont know what to do. She dosent want me to BOTHER my sibleys ....how ironic. My mother, the nut, just informed since I woke he up while checking my dads cath bag, that I need to find a new job because she is selling the house and moving him into a nursing.ITS 1AM. Now I dont know when I will fall asleep.


over 12 years, said...

I can relate to the person who poured their heart out, & then, it didn't post! But, like the other person said, at least, you got it out. But, still. Another annoying thing one should not have to deal with. The little 'daily' things add up. I get it! UGH!


over 12 years, said...

I just poured out my heart and this stupid thing just erased it when I signed in - anger & frustration at the world!


over 12 years, said...

Best & most helpful article I have read on this site so far. Thank you, thank you, thank you!


over 12 years, said...

thank you for the article, the part about expressing anger healthily instead of holding it in was helpful.


over 12 years, said...

Humor,that's the ticket to get through the day


over 12 years, said...

Another thing I need to say about caregiver burnout is that in my mother's case, many of her friends and relatives admired her for being such a martyr. So she felt virtuous. There were community resources available to her that she had no interest in using. She would tell everyone that dad didn't let anyone else do anything for him except for her. But it turns out that was false, because he has had many caregivers since he was out of the hospital eight weeks ago, and she has not been at home for the last three (she is in rehab after knee replacement surgery). Recently she told someone that she was still taking care of my dad all the time, even though we have had five full-time employees caring for my dad for the last two months. I do love my mother but she was ill-equipped to be a caregiver and refused to discuss ways she might be able to cope better. She would blow up in anger and tell my sisters and me to mind our own business, that we didn't live with him and that we had no idea how hard it was. But she didn't accept any of the substantial help that was offered until after my dad had been severely damaged in the nursing home.


over 12 years, said...

I just have a question. Is the emotional stress differant in the children that come from loving home and loving parents vs an abusive home? Or is the stressful emotion the same.


over 12 years, said...

I would add pride to the list of deadly emotions. It is one of the seven deadly sins after all. My mom was too proud to accept my offer to pay for in-home care as my dad's condition progressed. She ground herself into the dirt caring for my dad 24/7 because she didn't want to accept my offer of financial help. She ended up putting dad in a nursing home with one day's notice to the rest of the family, where he almost died because of the massive amounts of tranquilizers they gave him. He would have died there if my sister hadn't rushed him to the hospital. So she took him back and accepted my offer of help. A bit too late. They really damaged him in that nursing home. Now he is home, and mom has a live-in housekeeper 24 hours a day, seven days a week and an additional skilled caregiver 20 hours a day plus 1x per week nursing. Why she did not accept this in the first place is beyond me. It's not charity, it's a daughter helping her mom and dad because she has the resources to do so. She told us it was none of our business what happened to our father.


over 12 years, said...

I experience ALL of these emotional traps. Your article offered some good coping skills. Finding the time for these coping skills is another story. I am taking care of both parents who live in different houses and am disabled myself. Have 2 brothers. One lives in Florida and the other in Nevada. They are useless and do not have a clue (or seem to want one) as to how bad things have gotten. I live on SSI. Taking short trips or even going out to a movie is not an option. Also, my father is very controlling and downright mean. Wants to know where I am at all times. My mother is not this way but is almost impossible to deal with. She does not want or trust homecare. HELP!


over 12 years, said...

I care for both my parents. My mom with dementia and my dad with kidney failure. I am there with them almost every day. Go to the dialysis center 3 times a week. I do this alone. I feel every emotion every day. This is the hardest thing I have ever had to do. My faith keeps me going just knowing God is here with me and gives me the strength to face another day.God Bless you all.


over 12 years, said...

It is a great reminder to me. Especially the hidden anger that just "pops" up as anxiety or depression--sometimes I just don't realize that it disguised anger...


over 12 years, said...

Always 'get through it'....but, still.


over 12 years, said...

i do find a lot of my emotions in this article. it helps to read that i am not a bad person because of these feelings.


almost 13 years, said...

Yes, we can get through it, with support, & ways to care for ourselves, too.


almost 13 years, said...

He is forgetting more and more- not all the time the it is getting more often-he seems to slur his words and has a difficulty walking-- taking him to the dentist today- hope he will handle it okay-- and me too! is this slurring speech something anybody else has experienced? I think a lot of this stuff is due to the AD- Is it?


almost 13 years, said...

It's just good to know that these emotions are 'normal' for a caregiver. I have caregiver burnout for sure. Trying to do what I can. But, still. It's hard.


almost 13 years, said...

When I first suspected dementia I took my husband to the mental clinic here- and they sent us to another doctor and a neuralogist- We ended up seeing several different mds all of which upset him- with the different tests etc. which you all probably are familiar with- then someone told me about a clinical testing place and we took him there- had to go thru all those tests again- After that I just decided I was not going to put him thru anymore tests etc. I told his GP this and he agreed with me--you want to explore everything you can to help but there is a time when you realize there is nothing more you can do-- Just try to keep him as content as you can-- which sometimes is difficult or impossible I just don't think a lot of people understand this and certainly the insurance companies don't. This is a lonely journey for us but thank God for this site.


almost 13 years, said...

I worked in health care for many years,even on Alzeihmers units i could handle it well, when i started seeing the signs that my Mom was havin i tried to prepare myself for what was to come w/her no way to do this when it's your Parent IT IS HARD i am learning that my first thing is to make sure she is ok ,but what i have been not doing is takin care for myself as i have not been i was recently put on blood pressure pills for stress related high pressure,i am afraid of havin a stroke because i have pains in my face and my head,i want to go to a support group but no one can handle Moms mood swings my children can't cause they don't know how to tell their Big Mamma NO, i sometimes feel like giving up cause i cry 70% of the day i really try to be strong and just shake off her words and other violence but holdin it in is making me unhealthy if something happens to me my sister is not going to step up.i really need some help with My Mom if anyone has some more suggestions e-mail me Please..Prayers to All..


almost 13 years, said...

I am replying to love my son and perhaps to others of you that need extra hugs and prayers. There is sometimes when love it not enough- You love him so much but there is alimit to what you can give someone - I thought of bringing my mother in to live with us- still had three children home- but I realized that unless I sat with her all day she was unhappy that was years ago- she lived next door and I saw her every day- if we had the meds we have now we could have helped her anxiety-especially at night that is called Sundown syndrome now. You need your life back-- See if you can't find a place where he could go. It sounds like he can be violent and needs more supervision than you can give him-- God bless you and keep you, Knitwit7


almost 13 years, said...

Wow!!! I'm not crazy!!! I'm glad to know there are others who have the same feelings I do!!!! This has been very helpful...thank you...the Lord can help you through anything


almost 13 years, said...

My son was finally after much work by myself and my elderly parents (he's schizophrenic, 24 yrs old) put into a home in New Orleans called Grace House. He was supposed to be on lock down. He got out somehow in the middle of the night last night. He is very belligerent, even though he is getting Zyprexa injections. He is still completely delusional. After walking about 15 miles in 100 degree heat he got himself arrested by cursing out the groundskeeper at the Greek Church (his father's side of the family is Greek and his is obsessed with his and their greatness.) Luckily they brought him to University Hospital and not jail (after Katrina the city closed down our very functional Charity Hospital.) University is a trailer and he'll only get a couple of days there. His family from his dad's side of the family - 2 aunts and a grandfather live in Florida and have not ever offered to take him or help. I'm just giving up at this point. He has intense violent feelings towards me and I'm still suffering from ptsd from Katrina and barely surviving. Thanks for letting me share.


almost 13 years, said...

True, Revs. Caregivers fall through the cracks more often than not and there is going to be a real problem when we're all stressed and "cracked" ourselves...


almost 13 years, said...

Very relevant and indeed helpful. More attention should be paid to caregivers and caregiver stress.


almost 13 years, said...

Being able to read about the differing aspects of caregiver emotions and how to deal/cope with them. As the former primary/now secondary caregiver for my mother, this article has pointed how several things I'll be able to use for myself and to share with my sister Thanks so much for having such high quality, informative, and easy to understand articles on your website!


almost 13 years, said...

My son was caught acting up and thankfully brought to the hospital. As to the article, as you can see the deadly emotion of "guilt" has been the reasoning behind my username. I need to change it. This site is helping me lots.


almost 13 years, said...

Praise for all of you. This is so difficult. It's truly the hardest thing I've ever done. Much more challenging than raising children....Bless you all. And hey, if you get mad, frustrated, laugh or cry, it's all okay. It is all okay....


almost 13 years, said...

I have had my Mother over a year now, last August she had a terrible stroke,She is no longer able to help herself at all, I feed and give her water through a Tube in he stomach, She has had dementia for several years and now sundowners. At times, she tries grabbing her feed tube and I sometimes have to get firm with her. It breaks my heart and then I sit down and cry. She pulled it out twice and the last one I had to put back in. It's scary and nerve racking. My Mother is almost 89 years old and she deserves to be here with me, she needs the love that I give her. I have given up my life and yes I don't think of myself anymore, I have slept on the sofa so I can be right there for her, I know my hubby of 52 years feels neglected but he also understands why I need to do this, Many times I feel like I will sufficate, I never go anywhere except the laundry. This is the hardest job I have ever had and the pay,will be a Crown someday. Mothers are Precious


almost 13 years, said...

This is all so very true. Thanks for the tips. My hardest part is having someone to talk to who can relate. I feel like I am getting old faster & maybe far too sensitive as I deal with my parents. I also realize why I am the way I am through caring for my parents. I have been trying to keep positive & humour is my best medicine. Thanks again for the info I just have to remember how to keep positive!!


about 13 years, said...

I am in a constant state of mental and physical exhaustion. My schizophrenic son is 24 years old. He had a psychotic episode the day before Katrina, and was picked up by the NOPD crisis unit from my Mom's house (near the levee) and I was at work. Since then it's been a tormenting roller coaster ride (and i hate them). Even when he is supposed to be lucid, he can't take care of basic needs, diryt, dirty clothes and hair, unbelievalbe filth, sour milk , weeks old food, et. I read the Aramour(sp?) book about non-compliance a month ago. Followed instruction to a tee to gain his trust. He scares me. He is big and strong. He spent Katrina and the week long aftermath downtown near the superdome, but in charity hospital with no food and tiny drops of water. The mext summer his dad died. He had an episode yesterday, I vowed never to make the call again, someone else would have to, because he harbors reresentment and am afraid of him Before 911 was called night before last, he grabbed my expensive laptop. When i asked nicely for it back he became extremely hostile, then grabbed my cell phoe and crashed it across our hard tile floors. I felt that he was going to kill me, strike me with sonmething. He waled across the street to the neighborhood bar and was not allowed in. Recently the manger told me, a schizopghrenic man walked in walked up to a total stranger, and slit her throat. I am over this. I refuse to keep him with me anymnore. I'm still apt to apt, afte 14 years in my little cottage in Lakeview that I had perfected. It's still good, though Don't know where Matt (son) ius going to go,.


about 13 years, said...

boy, this hit me on the head with the 1st one...guilt....been a caregiver for an older hubby for yrs...so I hope to get some good hints from the website, thanks,cd


about 13 years, said...

I just logged on to this site but see already how this can help. I guess I am not the typical "caregiver" in that I live in AZ and my ex-husband is in MIchigan. But I think about him a lot and do what I can from here. I tried to talk with him on the phone yesterday and wasn't able to make out anything he said. He just doesn't have the ability right now. He's been in the nursing facility for 2 weeks and was in the hospital for 2 weeks before that--1 week he was on a ventilator. It was just so sad to not talk with him. I did go back to Michigan for 2 weeks and got him from the hospital to the nursing facility. And he does have a friend back there that sees him a few times a week. So all is not lost. Just so hard. He's been dealing with this for some years but now it's escalating.............


about 13 years, said...

Both of my grandparents suffered from dementia. Watching them go through the different phases was unsettling. My grandfather, who was much older, stayed at home with a nurse. My grandmother we had to put in a home, the nicest one we could find, and it was really nice, but the staff were stealing things and not giving the medicine so many residents needed, they were closed to new residents and then new management came in. Even the nicest places have problems, and the management denied it, but paperwork wasn't filed and families started to complain. If you're not prepared to bathe, help in the bathroom, and feed and clothe your loved one and can't afford a live in nurse, assisted living is mostly good, just make sure to keep any valuable like jewelry or heirlooms. We put some of those items in her apartment to help remember her life, but it turned out to be a bad idea. Ask a lot of questions, don't turn your back on your loved one once they're in a home, and if their bank is paying the bills, be sure to get an itemization of everything. We were paying for gifts our nurse gave to us fro X-Mas, and clothes and other items were being purchased that were not appropriate for my grandmother. Also, I was amazed how many residents never get visits from their families, for years! I often sat with other residents and chatted, or tried to chat, or keep them company in the dining room or tv room. The other thing, TV watching is the main activity at these places. So before you commit, find out what activities they have, and if you do mind that your loved one will be sitting in front of a TV all day, keep looking. You know, they are often viewing shows that are not age appropraite or remotely interesting to older patients, the nurses turn it on and leave. Not acceptable. I've learned a lot. Ask me if you have any questions, more than likely I have an answer for you.


about 13 years, said...

Rdee, I do understand how you are feeling. I have had similar thoughts, but then he gives me a good day. My husband is 64, I'm in amazement each day how much this disease has robbed my husband from me. He's at the beginning of the third stage I believe, I never know when his mood will change and he becomes so angry, he doesn't remember that I am his wife. Tonight he took my laptop, thinking it was something of his, would not let me have it. He took it over to his brothers (who lives next door) for safe keeping. I have been packing today, and I think it has gotten him all confused. We'll see what a good night's rest will do. I also just want out some times. I can only go a day at a time. I'm still planning to move to Maine in April with him. If he becomes violent before then we won't be moving. I'm not so sure the kids will be able to help that much anyway. Try to keep the faith.


about 13 years, said...

Rdee It is a little easier for me I am seventy five and have had a good long life..I understand your frustration and all I can do is say prayers for you that life will become easier..hang in there.. you are not alone.. wishing you a better day.. you are a good person trying your best.


about 13 years, said...

Edythe, thank you for your CARING, KIND words, you have no idea how much they were needed. You were my angel this early morning....thank you.....God bless you.


about 13 years, said...

I'm sorry, but don't any of you ever just want to throw your hands up in the air, or scream or just run away? All this sweet, precious memory stuff, and love, and caring...come on. I am so sick of this "job" sometimes I can't see straight. And now the day care where I could take my mum in law has done away with their adult day program. The state offers vouchers once a week and you have to get on a waiting list to get one, but now the places that will take her are clear across town. Aaargh. This is really terrible. I have given up my career, friends, fun, hobbies, etc. to take care of someone who is a shell sucking up air and time. There I said it. Am I bad? Am I forgiven? Honestly, sometimes we should all be so honest....


about 13 years, said...

Dorothy , Our Mom's are with us always, even afer they have passed. I find so many times My Mom is with me with thoughts and memories. I even hear her saying things to me to give me strength at this time. She also was a Nurse, a tough one..who gave TLC in her well years.. I realize now that much of my toughness and strength to get through these times is from my dearest Mom, who had dementia and was declared an in capable in her last years. She was angry at me much of the time, but i knew it was what had happened to this independent precious lady...her independence was her strongest suit. She read the Daily Word every day of the last fortyyears of her life, a recovered alcoholic, who gave so much to her 12th step work.. I now read the Daily Word and and often forward it on to my daughter in Seoul, who has a hard time being so far away, so you see my Mom, is still guiding me ..our mother's never leave us, we started life with them and our Mom's are with us always..I am sure of that. take care Dorothy, you were there for her..she would want you to care of you now..peace to all the care givers tonight and to their charges.


about 13 years, said...

Hello! I hope our pain gets a little better. I called my husband, I talked to him, he sounds like he is ok today. He tells me how much he misses me and loves me. He asked me: Why is it that I miss you so much now? I would love to have a baby with you, he says: Even though we are a little old, he says. I responded; who's old? not mee!! that made him laugh. It was nice to hear him laugh. He says; every day, I want to grab you, I adore you, he says. He says; I want to see you and hug you. He remembered his aunt, and the way his uncle used to call his aunt. That was a strange thing to remember. He mentioned the way his uncle called her. Just tears streemed down my cheeks just to hear those words, and to know that I was thinking about taking a day off, and not going to see him today. I feel he is waiting for me. He still in the hospital. He has no freedom. I know he is been treated well, but I worry, that they are not doing much to keep him sharp. Thank you for listening. Hay PS My husband is only 58yrs old.


about 13 years, said...

I am caring for my 64 yr old mother who also had a heartattack this week. She's been in the hospital since Tuesday and I have been dealing with the guilt of not going to see her yesterday. There were extenuating circumstance but i still felt SO bad. Her ability to guilt trip is unprecedented and yesterday was my birthday and i was just so angry that she had put herself in a position to have a heart attack. She also doesn't hesitate to tell me that she wants to die and is disappointed that she didn't. So this article was VERY helpful in helping me to recognize MY issues and reminded me that I'm ALLOWED to feel this way. Thanks.


about 13 years, said...

I will keep you all in my prayers tonight. What a special group this is. I have felt so alone and angry today. Glad I slowed down enough to really read all the comments here tonight. Hang in there, nice to know I'm not alone.


about 13 years, said...

This article was immensely helpful. We have had a horror of a week, and my diagnosis of Pericarditis was a major red flag that I need to get more help, seek out a support group and consider that soon mom is not going to be safe at home. She went to the store with a family friend who helps out on occasion-he had to go down the aisle to replace a broken box. She walked out of the store, leaving my RX (she had lost the written one two weeks ago. Why I even allowed her to bring it to the pharmacy still upsets me.), took off her jacket, and was looking for her car to leave! My friend ran out of the store, calling her to come back in. He was so upset. She later criticized him for hours for 'losing' the prescription. (it was found, and turned in) She had absolutely NO memory of this, and I had to tell the pharmacist NEVER to give her any of my RX again. When she asked me as she left for the market if I needed anything, I declined. She was the one who approached the parmacist, telling her I had a new RX and to fill it! (turned out I did, but I didn't tell her!) This is killing me. I am so distraught at being in this position alone. Checking out support groups ASAP. Just need one that meets while my adopted grandson is at school. He is 10, and I am no longer able to leave them alone together:(


about 13 years, said...

thank all for all the helpful comments...today has been a difficult day..I had an appointment and was told I most likwely have a rotator cuff tear in my right shoulder...I had an injection of cortisone.. surgery at this time is not possible..and the Dr is hoping the injection and exercises will keep me going.. I felt overwhelmed at first . but after reading the comments I am encouraged again and know there is a place I can come and tell it as it is..thank you..all of you..I say a quiet prayer before I go to sleep that allof us in this special group will have a good rest and a better day tomorrow..Peace to each of us...and our loved one


about 13 years, said...

Today, I am going to a support group. Everyone is encouraging me to attend. Also, my hubby, had the Lumbar punchal, Thank God he is ok, the doctors expressed how important it was. He is only 58 yrs old and progressing quickly. I still cant believe this is so bad. The doctors said he has dementia, and is not typical, they want to know what kind so that he can be treated to slow down. They said; his son should be tested because there is a 50% change he can get it too. This test is also to find out if is genetic. I feel very bad about this, I was really scared that something else would happen while doing this test, which they explained is like a spinal tap. He is ok, I spoke to him, and thank God he was in good spirits when he talked. That made me feel a little better and I can go to the support group with that in mind. Thank you all for listening and for your understanding. Hay


about 13 years, said...

I am feeling guilty he is there. The social worker tells me get a day off from visiting him. She says, you have done alot for him. She says, is ok to take a break. I am tired, I leave the house around 7 am to get to work, I leave work at 5pm to take a train and a bus to get to the Hospital where he is at now. I get home close to 9Pm. No dinner, at that time, I dont feel like eating. I have been doing this since he is been in the Hosp without missing a day. except for this past weekend the visitng hours were different. But, still I went to see him. He still want to go home. He cant remember to call me, but I call him at lease once or twice a day, which he express he wants to go home, he was to be with his wife to take walks. It makes me sad.


about 13 years, said...

Hi Anonymous, Thanks for your feedback. Sorry to hear you are having trouble with how our site loads. Site speed is important to us and we are constantly trying to improve the speed of our pages. Thanks again for your comment! -- Emily


about 13 years, said...

why does your site take SOOOOO long to load? it's so annoying when I'm trying to go through the pages.


about 13 years, said...

Great article! I am suffering from nearly all of these signs:( The hardest part is that nearly all of my friends have already lost their parents, most to illness VS Alzheimer's Disease/brain injury as with my mom, so I do not feel I can freely confide in them.


about 13 years, said...

@ Boisegem, you are so right about EVERYTHING. I agree with all you say. My mom lived with me and my husband for 5 years 8 months, and yes you cry....you cry for your mom(husband,/loved one), you cry for your loss of freedom, you cry for the feeling of being a prisoner, you cry for having those so called selfish feelings. Which they are NOT selfish at all. those feelings are the reult of being overwhelmed, and feeling so helpless, because try as you might you can't cure that disease. You cray as you watch them basically die a little each day right before your eyes. You know one line I stated in my mom's eulogy was "I learned a lot about myself, others, and how stoic my mom was". you do feel abandoned my family and friends because those who lack character DID disappear. I was very fortunate, my husband was right there for my mom the whole journey, he always was more like a son than her own sons, who had their own ideas and stubborness and were not there for my mom. I feel sorry for them, I would imagine they are going through tremendous torment becaese of their actions or rather lack of, then again, maybe they aren't, perhaps they are too callous. So cry, be strong, and research, research and research some more. Keep coming back to this wonderful Caring.com....it is a great support system without even leaving your home, and it is available 24/7....just like a caregiver! God bless all!


about 13 years, said...

Hay@ It sounds to me like 'overwhelm' which is one of the aspects of caregiving and or overseeing every aspect of someone else's life, the energy that one puts into making sure that you live your life, and care for your Husbands needs, it is overwhelming, especially when you are alone. My experience has been the same, and it is exhausting, fatigue, for me has been the hardest part of this experience, and the second, would be the feelings of abandonment by family and friends. I have really learned alot about what true friendship is all about. My definition of Character has been redefined. How long has your Husband been sick? Has he been evaluated by a Neurologist, an Internist, and as I suggested yesterday if you can find a Geriatric Psychiatrist and they all work together, this is the formula that worked for me in addressing the agitation in relation to Dementia with Mother. I must tell you that it has been my experience that every single situation is different in it's own right. Do you belong to a Alzheimer's support group? Support is something that you simply must have, others that are going through similar situations, and the sharing that brings much needed emotional release for you. This disease is a emotional rollercoaster for the caregiving/spouse, the caregiving/adult child and the caregiving/parent. Caring for your loved ones is hard work, and if you do not look for and put together a support system, in the end, you will end up with your very own unique health challenges, stress will kill you! Living in NY there should be groups that you can find, even if you can only attend on a limited basis. The local hospital and many church organizations offer such groups and resources. Resources can be very difficult to come by and of course there is a price tag attached to all services, unless you qualify for zero cost of share for certain services. With many social services being slashed due to the economic environment we all face limited services, it's becoming very difficult to access. Please know that you are not alone, this website is a wonderful place to share your journey, and receive messages by caring individuals. One thing that I have learned is that learning everything that you can about the disease, and, reseaching every available resource is vital to your well being, yes, you have to take the time to do this, because if you do not, you will be caught up in the catch 22 of today's medical approach to this disease, you must be your own advocate for your Husband's care, and in doing so you will know that you have done everything possible. Please continue to write and share, this is one of the most difficult life experiences one goes through. When you speak of crying and crying, honey, tears can be very cleansing, the first year, after Mother became my charge, I cried everyday, for one entire year, I knew my life was forever changed, I grieved for my freedom and our life as we once knew it. There are days, even now, three years and counting, that I will cry, why? This disease is heartbreaking, and I have come to know that it is okay to value your feelings and emotions. Your friend in Caring ~ hugs to you ~ Boisegem


about 13 years, said...

Boisegem: Thank you Robin, That's exactly what I did. I follow my feelings and went to see him. I know that if I didn't I would have felt really bad., because it was Valentines Day. I would have wanted it a special day, but, he started to get a little agitated again, wanting to come home. I have no one to help me with him, if I would sign him out. He was asking me if there another man in your life, is there someone else, because there is a way to find out, he said. I am still learning about this condition and it got a little scary to the point that I said I had to go to the bathroom, I will be right back and asked the nurse to let me out. I cried and cried, but what else can I do. He was threatening and I got a little scare thinking that at any moment he will hit me. In this moments that I was with him, there was no one around. I didn't want to cause more stress on him and have the nurses put more medication on him. I was told that I should not visit him everyday because it makes him want to come home, it reminds him of home.. I am very stress and I have a full time job. A 9 to 5 job. I leave the house by 7 am, leave work at 5 pm to go see him, visiting hours 6-8pm get home close to 9:30 pm. Nothing I can do now, but to wait. I hope the evaluation determines that he is put in a place where he can be comfortable. Alzheimer is a terrible disease. I have been married for over 20 years. I live in NY.


about 13 years, said...

Hay@ I think that you should do what you think is right. My experience has been that the so called professionals are so emotionally detached that it is easy for them to dispense their advice, without, having to deal with the emotional feelings that you or your husband are experiencing. The worst that could happen is that he becomes agitated, but hell, you would too, if you were in the place he is in, so go with your gut feelings. They will be able to deal with his behavior after you leave, always go with what feels right for you, no one knows your situation better than yourself. Robin.


about 13 years, said...

Should I call him or not today? I just dont want to upset him anymore. He gets agitated and upset wanting to go home. Should I go visit him at the VA, this can again trigger to upset him and want to go home too. The doctors and the nurse said; give him a break so that he does not get upset. I feel so bad; he is at the Psyc unit. But all he want is to go home. The doctor said they want to regulate his medication so that when he goes to a homecare they will know what to give him.


about 13 years, said...

This post in response to Hay ~ I went through a similar situation when moving Mom into our house. People with Dementias, especially Alzheimer's, become extremly agitated when it comes to any kind of change. Incontinence became a huge issue within the first 24 hours, I took her to the ER to make sure that she was not suffering from an infection, she was not, it was directly related to her Dementia. So they recommended that Mother go in for a "evaluation" at a nearby mental health hospital, I agreed because the suggestion came from the Doctor. What I have come to know is that this is NOT the place for folks with these kind of Diseases, it simply adds to the confusion and frustration that they experience ~ and they do not simply give them medication for the agitation without observing them for at least 24 to 48 hours, and that is only while they are being observed for the psychiatric evaluation. These are the real facts that the Doctors, Hopitals, Social Services, etc . . . do not tell you, when a Doctor makes a referral to a Psych Hospital, the psychiatric hopital, knows that once they are accepted that Medicare will pay for seven days, for evaluation and treatment, guaranteed payment. That is the key, now, what they do and how they go about it, is not made readily known, under the guise that they have to spend a specified amount of time 'observing' the patient. Mother was admitted on a Sunday Evening, the following morning I called the hospital, the Doctor had not even seen her yet, I called in the early Afternoon, the Doctor still had not seen her. I went to the hospital, knowing that she was probably scared and confused, this was late afternoon, the Doctor and still not seen her, I spoke with the Administrator, who was a complete and total tool, and he tried to explain the procedure that they went by, that really had nothing to do with the patient. I demanded to know when my Mother was going to be seen by the Doctor for a Psychiatric evaluation, it became extremely tense between me, and the administrator . . . who was more interested in policy verses care. The next morning I received a phone call from one of the Doctors, only because of the fuss that I had made the night before, he explained that they had seven days for evaluation, based on the guaranteed/assurance of payment from Medicare, the reality ~ money is the real factor behind this kind of promise of evaluation. They will keep the person, there, for seven days, regardless of how confused they become, how agitated they are, etc. . . . They will take their time, because they are assured payment for these days. These are the types of situations that occur everyday, and caregivers, are really never truly prepared, for these kind of events, that only comes after "experience" and how the system works, or better put, does not work!! I asked question after question, after question, until the doctor was in need of his own special evaluation. I hung up the phone, got in my car, drove to the hospital, went to Mother's room, packed her few belongings and discharged her from the hospital. I found a Geriatric Psychiatrist, that specializes in Alzheimer's and Dementia and he was a complete and total Godsend ~ It takes time to find the right kind of medications that will work, everyone is different, and depending on your loved ones age, and physical condition, and other types of medications that they may or may not be on, this are all variables in determining what kind of anti-anxiety medications will benefit the patient. Yes it can be time consuming, yet it is worth it in the long run.


about 13 years, said...

The doctors expressed to me, that since he is young and strong, he can hurt me. He is not like an old man with this condition. I understand, but I still feel bad he is in a pysic place in a hospital. I am just waiting for the doctors to get back to me with a decision.


about 13 years, said...

It has been an awful week. Monday, the home attendant called the police on my husband, reason, he was agitated, and cursing at her, he didnt want to get in the bus. The police couldnt do anything because he has Alzheimers. The ambulance came and took him to the Hospital, they put him on a Psyquiatric unit. He was scared and very upset, but they tranquilized him. Next day, they discharged him to me. Now, no Agency would come to the house because they were afraid something might happened. Wed, doctors suggested I take him to ER to get an evaluation so they can send the aid back home. Well, it so happens that he ends up in another Hospital in a Psyc unit again, where he still is. I am waiting for the doctors to let me know when they will discharge him to a Homecare unit. Still waiting, in the meantime, I went to see him and he wants to go home. He want s to be with his wife to take walks. I feel so bad about that. I wonder if I did the right things by taking him to ER. All I wanted was a little help since I am a full time employee. He is young man with Alzheimers at 58. Very difficult at home but I wish he would be put in a place with people with his condition.


about 13 years, said...

tomkat here, I've had a few good days, been able to catch my breath. Took my husband to the Neur. doc. this week, she is prescribing something for his upsets. I sure hope it will help. I can handle everything so far. Have the house for sale here in Florida still, and another house being built in Maine. No stress here. Thank you everyone who participates in the posting, it sure helps to see how much everyone has to go through. I'll keep reading and trying to be patient.


about 13 years, said...

Just knowing that even though I feel alone, (no one calls much to see what I'm doing or if I want to "get out," or maybe they think dementia is contagious--I know the Graminator's church thinks it is, but that's another post!) I can come to this site and read what others like me are going through, and can see that the feelings I experience are pretty much like everyone's else's here. Most of all, I'm not judged, only encouraged and hugged or prayed for. No one who is not in the trenches with this situation has the vaguest idea of what we caregrievers are going through. Bless all of you.


about 13 years, said...

The whole concept of lowering your expectations can be very powerful. You really have to realign your priorities...yes, it's nice to have a clean house, but if the laundry sits for an extra day it's not a big deal. Breathe!


about 13 years, said...

Thank you to everyone who shares their feelings on this, I have found it very comforting. I care for my mother in law who has alzheimers and is not mobile. She has been here for over 4 years and I pray everynight that she will just go to sleep and wake in a better place. I feel very guilty saying that but anyone that has to live w/this disease most likely at some point feels the same way. Some days I get so angry w/everyone (family) that isnt here to help. It seems that the family that is near could help out more or atleast offer. I dont want to be a bitter person in the end and I dont want to have terrible feelings towards anyone. At this point my mother in law sleeps alot, isnt eating as much anymore and doesnt very often speak. What she does say very seldom makes any sense but when it does make sense its at the most unusual moments. Every so often she will tell me thank you or that she loves me or some other sentimental thing that makes everything worth while. I know in my heart that I am doing a great thing for her and because she is such a great person I will never have any regrets for it. I also hope that my children will learn something from all this as well.


about 13 years, said...

I was the caregiver for my late husband and I experienced most of these emotions. When he came home in hospice care, that all changed. He had become babylike and I was able to supress most of those emotions. I am now taking care of my 71 yr old partner who has Parkinsons and COPD. Our relationship can get very volatile when he is too demanding of my time. We neet respite away from caregiving and he doesn't get it.


about 13 years, said...

I guess noone is a caregiver for MSA..welll I am thankful for that...it is such a horrid disease. This site helps me realize I am not alone..what you all write gives me comfort and courage to keep plugging along.. my feelings are normal ones..I felt as a retired Nurse I should not have these feelings and I was feeling guilty.


about 13 years, said...

I have all those feelings and this helps me to deal with the problems. Thanks.


about 13 years, said...

There is not much good I can say about taking care of my mother-in-law for six years in my home. I am no saint and I didn't used to be a patient person. That has changed. I am a saint. Not really, but I have learned patience. I also think it's okay to grouse, complain, be envious, be angry, be upset. Not at yourself and certainly not the person you are taking care of, but at the disease and the lack of help we as caregivers receive. Sure there are support groups and workshops offered. I don't know about you guys but if I get a chance to "get out" I want to spend it doing things fun for me- shopping, lunch, taking in a movie. Things many people do without thinking about it. I want to "take" after all this care "giving." I hate dementia. It has robbed my mother-in-law of her life. It has robbed my husband and I of our lives. I have pretty much given up my career to take care of her. It doesn't get better, it doesn't get easier. But somehow I've gotten this far. Venting this way is good and it does help to know that there are many of us in the same boat. Bless each and every one of you. We should all be canonized.


about 13 years, said...

These points are very sensitive. Living as a caregiver with a loved one who has early to mid-stage dementia sometimes seems like a twilight zone....sometimes the disability is realer than real, other times, it fades. The brain is truly fascinating (if you can remember to think of it this way); it holds on to some thought processes, drops others, sometimes gets them back, sometimes loses them forever. The most important thing, I think, is to stay flexible...just go with it as much as possible. That, of course, is a skill that takes practice, all the time


about 13 years, said...

This will help me to be a better person and help to take care of the person I'm taking care of,including myself.


about 13 years, said...

This is a very good article for me. My father and I take care of my mom who has alzheimers. I am the youngest of 3 daughters. The older two have full time jobs so the job of being mom's caregiver was left up to me. i wanted this job because I was going to fix her--I WOULD MAKE HER MY MOM AGAIN- boy was that a big fairytale. I soon realized i could not fix her. I took mom's place paying bills, taking care of checking account and writing all checks. My dad said he didn't want to know how. He wants me to make all the decisions--WHAT IF I MAKE BAD ONES? Since I dont have a job--haha-- the others dont feel like my father and i work at all. They cant spend the night if sitter is sick--want us to save money by letting the sitter go. She stays 5 nights a week and I stay 2 nights. I relieve the sitter everymorning and here until after supper. Finally had to tell dad that I needed time for me and my son. I am now divorced and my son is 11 years old. Now I stay home on friday, saturday and sunday--usually filled with sports for my son. How can they stand by and say Dad and I dont work????? by the way my mom is 79, my dad 83. Money is running out but how can Dad and I handle it without a sitter???


about 13 years, said...

found article to be very informative and helpful as most of the items hit the nail on the head, I feel better knowing I am not being selfish nor inconsiderate and it also explained a lot of things I did not realize were happening.


about 13 years, said...

Dear TomKat You must find help, please call your local health and human services and or the Alzheimer's Association or through the caring.com website. When and if you feel that your safety is in question, you must take steps to ensure that you are safe. Please make a phone call there must be organizations that will help you, this situation needs critical intervention, for your own safety. Please make the calls or call a family member in Maine. Please and write and continue to keep us updated. I am concerned for you. ~ Boisegem


about 13 years, said...

Don't know where to start. I believe my husband has started the third stage of alz. We have our home for sale in Fl. and we're planning to move back to Maine for help and support from his 4 adult children. He is progressing so fast becoming very paranoid, and threatening to kill me in his rage, then after a night's rest is usually ok for a while the next day. I don't know if we will be able to make the move, can't be done for another 2 months. I know it's very scary has anyone experienced this anger from their loved one. He has not hit me yet, and if he does I will look into getting him into an instution. Help.


about 13 years, said...

I always find it interesting in reading other caregivers experiences, that the family members that have little or nothing to do with the day to day challenges of caring are the ones that have opinions and freely express their critical observations. I always refer to these types as "UPPER MANAGEMENT" they make a clear distinction between the grunt work the daily caregiver goes through, and validate their own opinions with little knowledge or information. In the beginning of this experience of caring for my Mother, with progressive Dementia due to a right brain stroke, three years and counting, we designated one point person, that would be me, in this case, I do the day to day overseeing of Mother's health care and daily caregiving. I do not accept unsolicitated advice from family members that do nothing, but express their opinions. If they want to express anything, it had better be support for the situation at hand, or they can take their opinions and express them to a mirror, hopefully, they will have a clue as to what they are seeing reflecting back to themselves. I have learned in the past three years, that it is a good thing to set clear boundaries with family and friends. Draw the line in the sand, and let them know, straight out, what is acceptable and what is not. I am thankful for knowing that there are caring and loving people in the world, such as the ones that write on this website, it makes each day a bit easier. Thank you to all caregivers that give so from their heart to make the world a better place for loved ones that can no longer care for themselves. As a good friend of mine tells me, there are jewels in heaven waiting for you, and I always laugh and say " I'll take some here" ~


about 13 years, said...

When I got to the section on anticipatory grief......there I am! My husband of 78 has last stage COPD, so we know it's just a matter of time. He has reached the point where he won't go out anywhere, even though I have portable O2 for him and a wheelchair if needed. Therefore he is isolated now, and I am as well, sometimes. Yet, I think of how precious this time with him is, or should be! His breathing is getting so hard now; I can't help but dread the future and losing him.If I allow myself to dwell on this, I usually end up in tears. And I try not to let him know it. This online contact is helping me; I try to "take it one day at a time" but we will be married 57 years in June and it is so hard to face our future. Thank God we have two loving daughters and 4 grandchildren (7 greats as well), but they all live a distance away. Thank you all for sharing; no one else understands.


about 13 years, said...

To exhausted/Devoted ~ thank you for your post and sharing your experience. May I offer you my condolences on the passing of your Mother. I have often thought of what my feelings will be when that day comes to be If I survive my Mother. Your story sounds similar to mine, and to many primary caregivers to their loved ones. For me, one of the hardest aspects of this experience is the Exhaustion that one goes through, it is relentless, and I thought at one time what is felt like to be tired, you know after a long day at work, or something in that sphere, however, that does not even begin to describe what true exhaustion is when caring for your loved one. It truly is one of the most challenging aspects of caring. Pehaps even secondary to the feelings of abandonment that one feels when family and friends go on with their life and have little or no regard to what your going through. I have learned many things during the last three years, about people's character or better stated, their lack of character, in regards to the caregiving experience. It can and it is heartbreaking, a real eye opener, and I have learned that to continue the course, one must learn the true art of perservernce. I am thankful for people like you that are willing to share your thoughts as it gives hope and encouragement to us. May peace be with you and may you be blessed with beautiful tomorrows. Boisegem ~


about 13 years, said...

Oh, this is the hardest road to travel. I have just gone through 15 months of caring for my mom who had cancer, heart failure and dementia. Every aspect of my life was hijacked and out of control. I always had the feeling that I was standing under a waterfall, holding a dixie cup. I just couldn't handle things as they were speeding down the pike. The usual story - it was all on me, my sibling and other family members were not willing to compromise their lives to take on any of the burden. But of course it didn't stop them from hounding me with phone calls, advice and criticism about what I was doing for mom. Her care (in home hospice) was totally inferior, and I was getting more and more private hire help as the months went by, so that I could have some modicum of my life back, as I felt I was becoming more exhausted, angry, stressed and frustrated. What added to the frustration was that my mother's personality was very contrary and resistant to most ideas, help or suggestions. She kept refusing to have friends over who wanted to see her. All she wanted was me. Even when the aides were here, she only wanted me to "wait" on her. And the dementia was so overwhelming to deal with. My God - she was disappearing before my eyes, and she knew that she was failing. That was the hardest part - she had such shame about her illness and the decline she was in. I spoke to her primary care doctor many times about that and said that I needed help, training, guidance with how to deal with the dementia. Her doctor who saw her every few months said repeatedly to me that my mother didn't have dementia - she was just depressed, and put her on anti-depressants. It really is ludicrous when doctors don't listen to the primary caregivers, who are with the loved one constantly, who know every change and nuance of what's going on. They waltz in for 5 minutes every other month and have the audacity to dismiss what we observe! Anyway, this is the hardest job on earth, and to the extent that we can, we need to be gentle with ourselves, and know that these are impossible days with thousands of decisions that will affect our loved one. Sometimes we will make the right choice in that second, sometimes, not, but overall we are DOING THE BEST WE CAN. My mother died 2 weeks ago, and is no longer suffering. I know in her healthier days, she would not have wanted me to lose my life as well. I mourn her loss, in a different way than I've been grieving the loss of her for a year and a half. Now I start the long journey of getting my own health/life back and keeping her memory alive in me and all the people who knew her. I encourage you all to reach out to friends with specific requests as you can. I found that friends (my chosen family) really wanted to help and were grateful when there was a concrete request that they could help out with. Good luck.


about 13 years, said...

WEll, it's been a long time since I've been here. For some reason, it was all I could do to "tolerate" my mommy n law living here, with my sons, gandkids who are here every day to watch, going to bed sometimes at 2 am..just to hear mommmy get up a couple times to use the bathroom because she uses laxatives and eats too much often. Yeah, I do have mixed feelings and aggravation. My husband, who suppose to be tuned in to his mom, doesnt bother to ask ifshe has eaten, until I ask hIM to check on her. Most of the time, I do. or fix her food or SERVE her. I try to have the right attitude, be kind and overlook and realize that some day it will be me needing help...but Just LATELY, MY own speech is getting screwed up., using the wrong words, thought's cant be completed, I feel myself shaking inside more, and NO I don';t have High blood pressure. There is another daughter who could help, but my husband doesnt want her to go, because he can use her soc. sec. $, due to him being retired. She drives me nuts. EAts and goes to room alot, acts like she cleans by constantly picking up tiny pieces of "paper' WHILE there could be all kinds of things on the floor. She drove me nuts for 25 yrs. being a neat freak and passing judgement on me.. now I have to deal with all this. I try to overlook it all, and be the christian woman I suppose to be. I have to beg her to wash her hair.. first bath in 2 yrs last week, my husband goes along with every thing she says and wants and puts a dang guilt trip on me saying.. someday I 'll be in her shape. Sometimes days are just fine, but somehow, I feel my nerves or something inside me is suffering. Often i go in at 3 pm. (if I've been gone), "have you eaten?".. she says not, yet. She could if she wanted to, she doesnt forget to go out to smoke though! I feel like I am dealing with two ppl who don't think right..her and my husband!


about 13 years, said...

To Lucye and all the rest who are struggling with guilt over things we said , did, or didn't say or do. Let me share this; there were times when things got the best of me and I would yell at my mom, I would leave the room, and then just break into tears and think and say to my husband, how could I yell at my mom, she doesn't understand, he understood, there is only so much we as humans can take at times. So....I would march right back into her room and apologize for yelling at her. My mom, being my kind, loving mom, would always say, "you didn't yell at me, and if you did it was because I deserved it." OMG...this made me cry even more....once again, even with vascular dementia, my mom put ME ahead of herself....thinking about ME! Did she truly not remember, or was she just being the selfless mom she always was? I believe it was the latter.....making me cry again, remembering all the sweet things about her. It's going to be a LONG time.... You know now that I have all the "me" time I could possibly want.....I would rather be taking care of my mom again 24/7..........it hurts so much without her............... I know in time I will heal....but this is a HUGE wound, and there are no band-aids big enough to cover this wound.


about 13 years, said...

yes it was helpful and thank you for your articles. A caregiver's life can be such a distant life from the rest of society. I often feel like I am alone with all these emotions. This site helps me remember there are so many people doing what I do and we ARE valuable people but I think we lose old relationships because people do see what our lives are like and they can't handle it because they are afraid they could one day face the same challenges and it scares them. The truth is, as hard as this has been, I have gained more than I have lost, learned more about myself than I ever imagined, and have made new friends that have enriched my life as well as my Mom's. Even at my weakest moments now, I am stronger than I ever was before I started this journey. I think we sometimes only see what we have lost and it is important to recognize what we've gained. I've had a tough week but I am looking forward to tomorrow and the plans I have made. And even tho I am a week behind schedule, I will try my best again to reach the goals we've set and keep mom cared for and as involved as she can be. As I go to sleep tonight, I'll be thinking of all the rest of you out there on your journeys as caregivers. You are some awesome people!


about 13 years, said...

THANK YOU FOR A GREAT ARTICLE I TO VEEL GUILTY SOMETIMES BUT STILL I TELL MY SELF, I AM DOING THE BEST I CAN ALONE AND MOST OF THE TIME IT IS FINE


about 13 years, said...

Barbara 500 You are so kind to respond...I cannot tell you how much your words have comforted me. Be good to yourself. Lucye


about 13 years, said...

I agree that envy is a common emotion felt by care-givers. I really appreciated this article because I felt the author really understands what I'm going through. I often feel like my life has been hijacked by my dear hubby's illnesses and I get envious of friends who are able to take vacations. What I wouldn't give to have two weeks relaxing in some peaceful location far away! My hubby is very good at sending me on guilt trips and is very demanding of my time. He is always "lonely" and says I get to go to work every day where I'm around people. While I love my job, I certainly wouldn't classify it as a social event where I can do as I please! I'm thankful that I have my job to give me time away from care giving, but it is VERY difficult for me to take anactual respite because of my guilt. Hospice offers me 4 nights and 5 days while my hubby stays in the hospice house, but I have not taken advantage of this in 3 years because hubby doesn't feel he should have to leave his home. So I content myself with paying a caregiver one night a month so I can get away for a 24-hour respite. The caregiver comes at 5 p.m., and I leave. I stay at a friend's home and the next day we go somewhere just to relax and have fun. Hospice checks on hubby during the day, so when I get home at 5 p.m., I've gotten my little respite. One day a month helps, but it's not always enough. In April I had an emotional melt-down and hubby was forced to go to the hospital for 9 days. Hospice House was not yet completed at that time. He did just fine, and it helped me somewhat. I go to a support group that helps me believe that it's OK to take a longer respite, so finally, next month I am taking advantage of Hospice's respite and have already spoken to hubby's nurse about it. She said she would make it happen, even if it had to be a "no-option" thing for hubby, as it was in April. I want to report that I feel no guilt about this decision. I recommend support groups to all of you going through the same thing.


about 13 years, said...

WOW the human exsistence is so complicted. My wife and I have been caring for her mother. Middle stages of memory loss. All the emotions discribed her and felt. I am hating myself because I felt let down by my friends when we needed help. I don't know if I am sad or angry that if elt so alone. My poor wife gave up her life to help her mom. The hard part was that family only provided lip service and in some cases condemnation. Granny is in assisted living now. we find it hard to go visit. We don't know if it gulit or fear or just afraid that this nightmare will start all over again. As soon as granny moved into her new home. My wife got sick and I mean sick. she has coughed and been ill for weeks. I feel lonly as I cann't seem to renew my old friend ships. It is like a wall is up I am not going to be hurt again by trusting a friend. Does it ever go away. I really want to move to a new town and forget. One emotin not talk about much is the incredible saddness that goes with the careging and loss. Thankfully things are better but getting over the past is difficult. Thank you all for your strenght.


about 13 years, said...

It gave me information to use when dealing with my elderly mother and my clients.


about 13 years, said...

Reading about what other caregivers are inspired by can put things in perspective. A beautiful book: The Love of Caring - A Collection of 100 Heartfelt Caregiver Stories. The book is compiled from an annual caregiver story contest on "What Makes Caregiving Rewarding?", sponsored by Shield Healthcare. It's on Amazon for $9.95 and all profits are being donated to the National Family Caregivers Association. http://tinyurl.com/26qw9qq


about 13 years, said...

As always, Paula, good piece. But then there's also an "offshoot" of resentment. Simple, plain old envy. I know that other sibs (all brothers) are WAY to busy with their immediate families to be able to do much. I don't resent that. I volunteered for this adventure (two parents--one with Alzheimer's, and the other in his 90s with a walker as his constant companion). I have the time and the resources (squeaky, but ok)--all's well on that front. It would be so great, though, if we could SPONTANEOUSLY go out for an evening. My husband and I get one night off a week together, but it's always a week-night, when my husband has to get home early enough to be up the next morning, and so does the "sitter." We can't even consider going out on a weekend except for the rarest of special events. I'm just envious of other sibs who actually go about their own lives without having to arrange EVERYTHING before they walk out the door. Even on the weeknights we go out, I have to get their supper first, lay out everyone's meds for the evening, do the dishes and set the table for the next morning--not exactly a relaxing prelude to an evening out. And so it goes. Envy. Can't even get a day off to leave town for my daughter's wedding a day early, as the others have to work. Yep. Envy.


about 13 years, said...

Yup, I feel all these emotions and sometimes many all at the same time. I tend to try to "take care of myself" by staying busy with projects. Not always a good idea, but if I don't, I start to feel all these listed emotions and get depressed. So, doing nothing but waiting to meet Mom's needs is hard and being in the middle of a project and having a sudden increase in her needs really throws us all off! I am a plate spinner in a circus act. I usually am so good at what I do that others think caregiving for Mom is a pretty comfy stay at home kind of life! But when things get tough and I start "dropping the spinning plates" then others say "oh you should have called...blahblahblah...I didn't know things were so bad"...and then I have anger towards the rest of these "family" people. Because I have called I have told them I have begged and guilt tripped them and still...its me. I needed help yesterday...we are in the begininng of a kitchen remodel, so cooking is microwave and my mom needs help with blood check and shots and meal prep, my husband left to do an errand and got hit by a car of four 16 year olds. My husband called me; he was only 3 blocks from our house and I went down there. He had to go to the hosp, by ambulance. I ran home to check on mom and get someone to come stay w/ her. I called a neice, who is also a volunteer medic and works at a family owned business and is able to leave whenever she wants. I told her what was going on, asked her to please come stay w/ mom til I could get back from the hosp. She said yes....I waited........20min later I get a call from a neice in law who says I'll be there in two min and she was. I am so angry at the other neice even today that I can feel my blood pressure is up! I called another great-neice from the hosp to see if she could go the 4 blocks from her house to check mom's blood, but she was in a bar and I just told her I'd take care of it myself. So I left husband at hosp. went home to check on and got mom's meal and shot done and then back to hosp to get husband. SO, my emotions that are bad for my health stem more from my feelings towards the rest of my family than towards my Mom. So, I am fixing up what needs to be done in this house and selling it and moving to where I want to live. At least if I am going to be doing this job alone, I should be living WHERE I want to live. Mom agrees. OK I am going to walk this off. If I stop and think about it anymore I am going to throw up!! Take care all.


about 13 years, said...

The remark in this article about being able (allowing ourselves) to feel resenment and still be a good person was extremely helpful. I had generally equated any natural resentments (of lost time; towards critical remarks by others that are not assisting, but stating how I could be doing better or negating that I am giving up anything in my life - to name a few) as something lacking in my character - that I should be stronger, better. Thank you for this well written article.


about 13 years, said...

There is one emotion that needs to be discussed and that is overwhelm, this is extremely important and rarely mentioned. In light of the financial difficulties that many American Citizens have experienced in the last three years, resources can and do become limited. When a caregiver facing additional challenges in the caregiving experience, such as loss of income, health challlenges, etc. all of these can contribute to a sense of overwhelm which is often the path to major depression, it feels like your running on a treadmill and cannot get off.


about 13 years, said...

My husband is the one with Alzheimers, so young. But, I must say he has been a pain the a--, for a long time, an unfaithful husband, with a big mouth. After all this things I found out, many other things about him. I am angry, very angry, because he cant even remember those affairs or what he did. Is he lying to me again, maybe he is, I just dont believe a word he says anymore. He does apologizes for hurting me, I am so angry and I tell him you may not remember what you did, but I do and I will never forget. Once I said; at your funeral I will really tell everyone what kind of person you really were. Or maybe they know.


about 13 years, said...

I am caregiver for my husband with MSA I would like to be able to talk with a person who cares for a loved one with this disease..anyone out there??


about 13 years, said...

For "lucye"--please don't beat yourself up about this. You have been visiting her faithfully and lovingly two to three times a week. Sometimes we get lulled into a sense of security because a loved-one's health stays bad for so long, we are desensitized to potentially significant changes. Believe me, she knew how much you loved her, and if she could speak to you now, she would say "there is nothing to forgive". I hope that you find peace knowing that you did all you could to help and love her until the very end!


about 13 years, said...

Dorothy's Daughter, I too feel terrible guilt....I had been visiting mom 2-3 times a week at her home that she shared with my wonderful stepfather. However, I spoke to her two weeks ago on the phone..and she couldn't not speak...I knew she might die at any moment however, i still chose to go to her house "as planned" the next day for the entire week. I chose to groom myself and my apartment before I went. I took too long in doing it all..and she died Friday morning..this past Christmas eve while I was Tending to myself and apartment. This keeps playing on my ability to grieve..the guilt is in the way....


about 13 years, said...

In memory of my mom.... My mom deserves a eulogy, the length of the circumference of the earth. However, I am so heartbroken, that I can only maintain my composure for a short time. To me, and also to many other people, my mom, was the closest thing on earth to a saint. I don't think she ever knew how many people looked up to her, and admired her unwavering faith, and the kindness and love she had for everyone she met. In her lifetime, she touched a lot of hearts; she also made a big difference in so many lives. Throughout this journey with my mom, I learned a lot about myself, other people, and how very stoic my mom was. I also learned more about my husband, how so very kind, compassionate, and patient he was throughout this journey. He was there, EVERY single step of the way for my mom, and she appreciated it so very much, as do I. Thank you honey. Even as the disease took over, my mom was as kind and sweet as ever, even the Hospice nurses and doctor took note of that fact. At the end, we were blessed, and I know this was a gift from our Lord, of some very incredible lucid moments when she said and I quote, "thank you for helping me through this" she also said, "I know how hard this was on you" "thank you for not throwing me away like trash" and finally, "I am going to miss you so very much." With ALL that she was going through, she was thinking about ME, and others, not herself. There is no other love like a mothers love. My mom was still in there; she was stronger than that horrible disease. In those final weeks, she reminded me of a candle, sometimes flickering, sometimes VERY bright. When her flame went out, it was from the breath of Jesus as He whispered to her that He was there to take her home. Jesus is the light"¦ the candle. I love her and miss her SO very much. I would do ANYTHING to have my mom back.


about 13 years, said...

I experienced every single one. My mom just died 12/21/10 and I can tell you besides the grief, I am also STILL feeling GUILT....somehow in my mind I feel if I had done something different my mom would still be alive. Logically I know that is not true, but that is how I feel. God I miss my mom SO MUCH.


about 13 years, said...

We can all get down about something but there is so much to live for. I just finished reading "Making Rounds with Oscar", a wonderful book not only for dementia families but anyone who is a caregiver.


about 13 years, said...

This article was extrememly helpful. I have been through all 7 emotions. What I am just now dicovering is that all I have done is cause more stress for my husband.


about 13 years, said...

There has never been a more dedicated, yet guilt-laden group than dementia caregivers. Thanks so much for this great article! I will tweet and post to Facebook!


about 13 years, said...

I think every caregiver goes through this sometimes while they are caring for someone. All seven of them, but if you stop and think, you can get through it.