How can I stop feeling so anxious and relieve caregiver stress?
I have been a caregiver for my parents for the last four years. They live in an assisted living facility and have a 24/7 aide, and I visit them at least once a week and talk to them on the phone quite often as well.
At least three or four times recently, I have felt burnout very badly, enough that it was difficult to function at all during these few days.
When I try to get together documents needed, for instance, for Medicaid planning, I just can't place them, and have to search and search until I finally find most (but not all) of the documents required. I get so anxious and I just can't think properly due to feeling totally overwhelmed at times. When I feel this way, I feel like my brain is not working properly at all. And, the burnout has caused me needless days of depression when I don't leave my house.
Have any caregivers at this site had similar experiences as a caregiver who gets so anxious that their memory fails them?
The symptoms you describe, and the fact that you are responsible for both parents tells me that you are overburdened and need more support. Of course, others in your situation also feel burnout. Many caregivers also suffer from depression. While you can't change your parents' condition, you can do things for yourself. First, I'd recommend a physical exam from your physician. Report your symptoms of feeling burnout, the memory difficulty, feeling overwhelmed, and anxious. Sometimes a physician will recommend medication to help control the things that make it hard for you to function day to day. Medication is, indeed, a kind of support, and is worth a try if your doctor thinks it will help. You may need to ask for it. It can certainly help with the anxiety and having trouble focusing on tasks.
Next, it might make sense for you to have the support of others in your situation. Is there a support group in your area? Can you join an online support group? As an example, the Alzheimer's Association offers such groups, as does the Family Caregiver Alliance and other, similar organizations. Search for caregiver support groups and try one out. It can be a big relief just to share the everyday burdens with other caregivers who may be feeling as you do.
Also, consider respite for yourself. You need and deserve time to "recharge your batteries". No one has to feel guilty about taking time off. We all need it. Is there someone who can take over for you for a few days off? Can you get away, even if it's just to turn off the responsibility for a period to rest and not think about your job of caregiving? Periods of rest are essential to doing a good job of caregiving. Maintaining your own mental health in this way will reduce your anxiety and allow you to recover from the sources of your distress, from time to time.
Finally, I'm a firm believer in walking as therapy. It's purposeful exercise, gentle, stress-relieving and it can be your mini-respite work that you can do daily. If you have any mobility problems yourself, there are substitutes just about anyone can use. The point is that some exercise every day, even for 20 minutes, can do a great deal to reduce the anxiety and alleviate the feeling of being overwhelmed. It changes the stress-induced metabolic response your body goes through when you're feeling uptight. Think about building some form of exercise into your busy schedule. By protecting your own physical and emotional well-being, you will be able to focus better and continue to do your best for your parents.
I can't believe it because when I was reading this I thought I wrote it myself! You have expressed my feelings exactly, only my situation has been going on for about 10 years, starting with both parents. Sometimes I think things are going well, and then all of a sudden something will happen at my mom's house that throws me into a tizzy. The depression and anxiety are of a magnitude that I have never experienced before, even though I have experienced some depression in the past. I also have a precarious job situation, which adds to the stress. My medical insurance recently changed drastically, so I can't afford the antidepressants which may help me. THe only thing for sure is that someday this will all end and I will be a basket case. That is the only certainty.
I agree with everything previously said except I would put the drugs only as a last resort as they can have their own set of problems, preferring trying vitamins and holistic approaches to the strengthening the body and soul first The wisdom of a support group was the thing that kept my sanity as I had two parents to care for also. Talk with good friends, vent! Pearls of wisdom came from many sources and I clung to the pearls that I could relate to ... just the few most important. For me, since I felt that the current situation would never change and my life was doomed forever with stress, just hearing and learning from others that a given in life is change and it could change and would change took the dark cloud off my shoulders. I believe we all have buried hurts, anxieties and even angers concerning our parents...vent...for me, getting it on the outside relieved a lot of the stress leaving room for more love and a better understanding and accepting the natural progression of life.
I too had to search and search for many important things as my Dad at 97 had dementia and hid things and my Mom at 94 couldn't help. The result of the stress was I couldn't find things even in my own home when I had all of their affairs to attend to also. With time and caring for myself, relishing in small victories and things changing over time I think I emerged a better and stronger person.
I would also suggest a grief counselor. You may find them through an Alzheimer;s organization or through a Hospice service. I also feel that you need somone who is good at organizing financial papers. This part is overwhelming to me as well and I know that there are people who do this type of service. Maybe our Experts can give us some advice on Grief Counselors and Financial end of life advocates and where to find them..
Here is a tip for organizing all the documents, paperwork and information for caregiving. It has really helped me with taking care of all my mothers stuff. Get the book "The complete eldercare planner" by Joy Loverde. I picked up a copy at the local library but the book store has it too. It is so helpful and has pages of forms to fill in all your parents information. There is also a web site where you can download the forms without reading the book but the book has such great ideas that you might not think about. I then got a three ring notebook with pockets and everything is now in one place. I take this with me with doing any of my mothers business at the banks, social security, etc. The only thing you have to be really careful not to misplace it or leave it somewhere because it does contain all their vital information such as account numbers, passwords, social security numbers, bank accounts, keys, etc. If it sounds too overwhelming to fill out, just take a look at the book for guidance. I'm now trying to get my father-in-law to fill out his information for when the time comes that we will need it. I'd suggest getting your hands on this book for anyone who has elderly parents. It will save so much time and frustration later.
So good to hear others are dealing with this too. I am responsible for both parents, both living at their home (about an hour away), one with advanced Alzheimer's, the other bedridden with some dementia. I visit them twice a week, do all the grocery shopping and am completely responsible for financial matters. I feel overwhelmed and stressed out, worse some days than others (also trying to make a fulltime living). I too am increasingly forgetful, especially when it comes to their papers, documents, etc. I'm sure there are some important legal or financial matters that I've neglected. Walking is the best therapy for me. Thanks for the suggestion about that eldercare book--that's exactly what I need. Courage, everyone! This too shall pass...
This is hardly an answer from me.
Count your blessings. Some one else is caring for your parents 24/7. Try doing that and keeping track of giving their 14 medications on time and getting refills at the right time and keeping track of doctor appointments and getting them to appointments and being sure that you have their wanted foods on hand and having their bed and laundry clean and laid out and jumping every time they call your name to come pickup their magnifying glass or idnetify the bird that you just identified 10 minutes ago and keep track of paying their bills and filing all the paper work where it can be found again.
If your parents are in a facility, and you see them once or twice a week with phone calls between, you have it made.
I know this sounds like a rampage, and it is.
Whereas I don't want to diminish the feelings expressed by anonymous, I was somewhat taken aback by her feelings of burnout when she has both parents in a facility and she only visits once or twice a week. I'm sure there are burdens she bears, but not having to physcially be there 24/7 is a blessing for her. I think she is dealing with depression, not caregiver burnout. Let her try being the only one there to provide around the clock caregiving and see what kind of burnout she feels then.
Everyone is so right about counting your blessings. Some of us are lucky to have the money necessary to be able to give up 24/7 care. I thank God for that blessing. And thank you Sabelson for your blessing of the book by Joy Lovede. I wish I had known about it sooner and will definately pass along the resource.
Sounds like the CG & parents are in or near the same town, so all the other relatives & friends of the parents must be there too.
Since the CG has all her parents' info, she must have names and addresses. She should write a nice letter inviting them to visit, suggesting what time & days are appropriate, and asking them to check with her first. She can be the social sec. rather than the anxious caregiver.
A COMMENT, NOT AN ANSWER
I SO understand the REALITY of what this caregiver is sharing:
quote from anonymous commenter:
"Count your blessings. Some one else is caring for your parents 24/7. Try doing that and keeping track of giving their 14 medications on time and getting refills at the right time and keeping track of doctor appointments and getting them to appointments and being sure that you have their wanted foods on hand and having their bed and laundry clean and laid out and jumping every time they call your name to come pickup their magnifying glass or idnetify the bird that you just identified 10 minutes ago and keep track of paying their bills and filing all the paper work where it can be found again.
If your parents are in a facility, and you see them once or twice a week with phone calls between, you have it made.
I know this sounds like a rampage, and it is."
Bless you and Bless you and LOL...
I SOOOOoooo identify with your "rampage". Your Ulysses-like stream of consciousness I couldn't possibly improve upon to make people understand 24/7 caregiving REALITY.
I have only one parent, 94-year old stubborn as a mule mother with dementia (unspecified,) which frankly I believe is sometimes "selective" dementia (read: FAKED). She should have been on the stage and screen, she is SO convincing when she does her shtick about "feeling too badto go..." to the adult daycare (that the citizens of our wonderful county subsidize with their taxes).
If it had NOT been for this group of outstanding, caring, loving elder care professionals, I would long ago have put Mom in a nursing home ...or simply gone mad. THEY were the ones who (gently) gave me the headsup that my mother was "faking" it to get me to jump through hoops.I found out that was absolutely TRUE and stopped "hopping to" to meet her demands when I suspect she is just jerking me around.
Mom is so ungratefui, so ornery, so into playing games that I am overwhelmed by the growing feelings of anger and disappointment with her conniving, and I truly feel flashes of HATRED for this behavior, though I am trying to remember the woman she once was. The shell that is left here is a horrid one to deal with.
I've dumped $30k of my money, using it to be able to stay with her and not go completely insane by trying to work fulltime AND take care of her, but now I'm broke. And the idea of simply letting the house go and starting over at 60 is not attractive, but there you are. I don't care, at this point. Foreclosure would be a relief, at this point.
I feel I am NOT alone in having manipulative parents who are taking advantage of the "child" returning to give care. So if I MAY offer a bit of advice: If your parents are demanding, step back and see if you are "enabling" them in their selfishness. Get a professional to assess them (I'm sure Medicare will pay for this..they did for Mom) and get them to evaluate the level of dementia, explaining the WHOLE scenario to the psychologist, how their demands are exhausting you and you simply want a professional opinion of waht you may be doing wrong or if your parents are TRULY unable to comprehend what they are doing to you.
Pull your "guilty child" emotions out of it and look at the job as a professional caregiver yourself.
Give yourself a couple of hours a day at least that you say, "I'm going to be napping/reading/staring at the wall/whatever" now, mom and dad, so please dont call for me unless it is an emergency, DO YOU UNDERSTAND? THANK YOU.
After all, at a regular job, you at LEAST get lunch and a couple of breaks a day, don't you?
If there are siblings who won't help and that makes you furious, start right NOW to Foggeddaboutit. It will just make you NUTS! Letting go of the resentment helped me TREMENDOUSLY! It's just another way to bring yourself down VOLUNTARILY. They won't change, anyway, you know?
And overall, if youv'e been doing it over a year and you know that caregiving is making you depressed, despondent, and miserable, STOP AND THINK.
Start CHOOSING which hoops you want to jump through, or if you want to jump at all.
Periodlically, at the end of the day, sit down, have a glass of wine or cup of coffee and ASK YOURSELF:
"Is it TIME for me to stop doing this?
IS what I feel MISERY?ANGER? DEPRESSION? EXHAUSTION? Is it ALL THE TIME?
And say, " I AM WILLING to let myself know what I REALLY want to do"
Remember, nobody can actually FORCE you to take care of anyone. That's why Medicare and Medicaid were established.
And if there are assets you are trying to preserve,
Think: IS IT WORTH IT TO SACRIFICE THESE HOURS, DAYS, YEARS OF MY LIFE
SIMPLY FOR MONEY?
And listen to your own HONEST ANSWER.
To keep going or walk away.
it's YOUR CALL.
All those people who talk about the "blessings" and "rewards in heaven" you are earning
are full of it. Ignore them. At a certain point, Christ died. It was an agreement with God.
God didn't TELL you you HAD to do this. YOU are not CHRIST.
I don't think God means for us to sacrifice our own health and wellbeing in the caregiving process.
It is psychological, financial, and emotional suicide for many of us.MOST of us.
Listen to you OWN HEART.
This is YOUR life, don't forget. Your parents have lived most of theirs already.
"To thine own self be true."
I know if my mother was actually, totally "here" today, she would tell me to put her in a home and live my own life. this person I care for every day is *not* my mother. Not anymore.
A psychic I met by chance a few years back said my own energy was keeping my mother alive.
That made me think. Six years ago i felt alive and up to this task. Now I feel empty, dont remember what it's like to feel spontaneous and happy, Would simply like to walk out the door and keep walking.
Who knows? Maybe I have enabled my mother to suck the life force right out of me.
After all, she is so afraid of dying.
And I was always a good child.
IS that what is happening to you?
To all you who can feel joy and love and remain giving caring carepersons, I salute you.
To those who are buckling under the weight, i say, save yourself.
The world is made up of all kinds of people .We all have different talents. Use YOUR talents wisely.
Caregiver now, your writing is so clear and on point. Thank you for your ability to say in beautiful words what so many are feeling inside. It is not worth it to sacifice yourself. Never allow 2 people to die from any disease because you are the caregiver. It was very hard to place my husband of 54 years into a memory support unit, but I knew I could no longer handle it without anger toward him, which would not have been fair. We are both happy now and enjoying the time we have left together.
Caregivernow expressed all my feelings. I take care of my mother with stage 3 CHF 24/7 and work full time from home. There are days I just want to walk out of the house and not come back. I resent all the things I have had to give up to have her here. It is my house I pay the mortage and I can't have candles(on O2), she complains about my dog all the time, I can't even pop popcorn because the smell bothers her. I have had to put my things in storage (yet another bill) because she insists on having her things around her.
I'm tired of living on sugar free red bull just to keep going every day. I'd give anything to be able to afford to have ocasional respite care or just help.
God Bless you caregivernow!!!! I share your feelings! It's not a blessing and I don"t buy the "you'll never regret quitting you job to take care of your Mom" . I've regreted it almost from the start!! I've never been close to my mom but after my sister abused her & her finances and my brother made it real clear that he and his wife (who by the way has said to my face several times that she hates mom) would take her if she signed over her monthly check to them, I felt I had to step in. I've worked very hard to repair her finances, get her good medical care, find all the government benefits she is entitled to, get her affordable senior housing (where I find myself every day) take her shopping, to appointments, and out for entertainment. I've only just learned my mom too is a manipulater and even though I no longer run when she calls, (I can't turn my TV on, help me find my door key, I can't get my phone to work...and the list goes on) I still feel guilty & trapped. Just remember-No good deed goes unpunished!!
Hi folks! CN here again :)
I'm so glad I was not burned at the stake for my honesty..lol. Hope it was helpful to hear some blunt reality instead of frothy high minded ideals that didn't seem to fit MY day to day <g>
To the caregiver suffering from burnout whose medical insurance has taken a change for the worse:
I am NOT a medical person giving advice. I am sharing my own personal info and experience:
Target, Wal-Mart and other pharmacies offer generic Prozac, for example, for $4, so that shouldn't break the bank. :)
I believe that Prozac will at last prove to be the drug of choice for Mom's depression. Her orneriness is part natural <grin>, and part depression over being OLD and no longer in control, IMO .
After Mom's doctor putting her through Paxil, Zoloft, and others that most certainly DID NOT work and had many negative side effects, I started the both of us on Prozac recently.
Mom's worst whiny, negative, paranoid vocal habits appear to have diminished after about 10 days .Got my fingers crossed that her quality of life will improve dramatically on Prozac generic.. And of course, I will be able to return to being my old, gracious, saintly self...lol
I myself took Prozac years ago post-divorce and unexpected job loss, and found that it all of sudden "flipped a switch" for me when I wasn't paying attention..lol.
I just. realized I was....UN-depressed one day, and was far more optimistic AND functional.
I didn't even notice when the change happened. Just realized it one day. ( I know it didn't take more than a month befor I noticed)
I eventually quit taking it because at the time it was not available in generic form and was QUITE expensive and I lost my insurance, but it did trigger a reversal of my depression for years...until now (grin).
- Using the logic that at least one other person in the family besides me had found Prozac effective, I thought it worth a shot that Mom's genetic pool might interact well with Prozac, so I started Mom on it after researching ALL the side effects on the elderly, and her condition specifically.
- [ Lots of hype about this and suicide. But that is in YOUNG people only. In SENIORS there is no evidence, clinical or otherwise, of increased incidence BTW.]
- It generally takes from 2 weeks to a month to kick in and begin seeing results. In Mom's case, it has been less than that (or maybe I'm just being screamingly optimistic...lol)
- I was concerned about backing her off the med if it DIDN"T work, so I called my OTHER ace resource, the pharmacist, who assured me that Prozac build up in the blood levels was gradual; IF it became necessary to stop it, i could just stop it. The blood level of the med would simply decrease gradually till it was out of the system. BUT check with YOUR phaarmacist TOO to see if s/he agrees if you decide to try it.
One thing I learned early on: I no longer consider Mom's doctor GOD. He is a good dr, but on the whole I know more about Mom than he does because of extensive research and hands on experience. He finds me a bit irritating when I question things..heh..but I have been proven right on mroe than one occasion, so he grudgingly listens to me now and pays attention to everything I request and what I have to say about Mom's care. So I had no problem getting the script.
Like I said, this is my own personal experience and everyone should ALWAYS ALWAYS ALWAYS Google it, and do her own research on ANY drug suggested, advertised, or prescribed by the DR BEFORE taking it.
To anonymous who works at home...what do you DO? I need a job...lol.
oh wait, I was REALLY going to say, if i might suggest: <g>:
the popcorn smell: Hey, that is just BASIC manipulation.lol. ever thought about turning on the stove fan, shutting your mom's door and/or the kitchen door and/or putting air freshener in her room?
Or just saying, "Mom, get ready, I'm going to pop some popcorn now! Want to go to your room first? I don't want it to bother you."
No popcorn? that's just WRONG.
And about that respite care...II'm doing a research on that and Medicare.
- I think itls HIGH time that there is a bill placed before Congress that make this happen at least twice a year for caregivers for many reasons.
- One of the BIGGEST is economic. IF WE do not take care of the loved one then the GOVERNMENT must do so. At $3500-$4500 per month, that's a huge tax impact if we all started "just saying no."
- And of course, THE OBVIOUS: it helps US keep from going postal...lol
DO keep in mind that NOW, IF your loved one goes to the hospital for ANY Medicare-covered medical reason and REMAINS THERE 3 DAYS, they are eligible for "rehab" in an appropriate nursing facility for up to 100 days, I believe it is.
I'm going to start leaning on my Congresspeople and find out what is being done to help caregivers. . Maybe we ALL SHOULD !! Whaddya think?
NOW...have a beer /glass of wine /cuppa something and RELAX!
You're OFF THE CLOCK for the next 15 minutes!!
Just DO IT ;)
For the first caregiver with burnout:
I feel so sorry for you. I didn't realize that some people had it so much worse than most. When I was my grandfather's caregiver, I had an aunt that drove 8 hours one way to give me a break every weekend.
When my bf suffered a TBI, I found out the hard way what he had and didn't have. I had to scout out resources, (his SW wasn't too terribly helpful) his insurance, union info, SSI, notify creditors, his landlord, getting rental assistance, etc. Since everybody and their cat and dog want the same information, I found it easier to keep everything stored on a flash drive and take it with me to the offices, the hospital, the nursing home, the property management, the local chapter, etc. Since the agency won't provide a night/weekend HHA, (he lives in a studio apt) I have been designated to volunteer. I do his housekeeping, his cooking, his shopping, administer his medications, keep track of his dr appts., take care of his dog, make sure the maintenance in his apt is kept up, laundry, errands, bill paying, you know, daily living. I get to hear daily how resentful he is that he's disabled and dependant 24/7 for the rest of his life (he's in his 50's, I don't blame him). I am lucky to have a full time job to go to everyday so that I can get a break from the needs & necessities of our personal life.
But you, poor thing...
Now there are some blogs I do find interesting. For the woman with a sense of humor, glad to read that it's still there. Can I borrow it sometime? When asked if I will be ok, I tell people that I'll survive, he may not. And for the woman living on Red Bull, I understand your resentment. If you need to vent, I'm here.
Responding to the CG who is at wits end - I see there have been some really good answers, so I'm going to add something that nobody has mentioned. I had the "paperwork problem" for years, and finally made life easier by indexing my six file drawers in this manner: I took a small mini-recorder, voice-activiated, in my hand, knelt down in front of each file cabinet, named the cabinets A,B,C, etc. and read the labels on each folder into the recorder. I did this for all the file drawers --it took only a few minutes. Then I went to the computer, listened to the "tape" and typed the info into a Word .doc., listing the contents of each file drawer. I now can find any folder from the printed list and go right to it. Isn't this what Ms.Desperate needs?
I am just ordering this book. After reading the answers of so many that remind me of myself I feel compelled to do so. Hopefully, I will find a moment to read it.
I am just beginning caring for my father in my home. Already, I am thinking unkind thoughts. He is constantly into things. Reading my mail; moving objects and the staring at my every move are exasperating. The lack of hygiene is driving me up the wall.
I am so resentful. I have other siblings who see no need to help out.
I feel I am being punished for trying to do the right thing.
Some days I want to just grab by purse and check book and drive away ... never to return. I sure hope this book will offer the guidance I so desperately need.
Is there anyone else who feels my pain? I so want to be a dutiful daughter but my level of frustration increases daily.
Regarding the person of the original post of May 14th: My heart goes out to you for bravely posting your distress. I am right there with you in my own situation.
Regarding the people who posted (some with anger) that she should consider herself lucky that she has her mother in a care facilty: It is answers like these that don't help us at all! I realize you are angry with your situation, but why do you feel a need to berate someone else who is coping in the best way that she can??
Because my mother is in a facilty, I didn't think I could call myself a caregiver. I didn't feel I had a right to admit to anyone about the frustration/mental exhaustion/anger/physical pain. I didn't "deserve" to post on caregiving boards because my caregiving was not in the home, even though I've given up my career to take my mother to doctor's appointments and tests 2-3 times a week, take over her finances, and pack up her entire household!
My husband and I have been draining our retirement money to pay for her care even though I have 2 older brothers who won't contribute. (One just bought a new boat; the other has 2 homes in 2 different states!)
Finally someone told me that all of my physical and emotional symptoms of burnout are from being a caregiver, no matter what anyone else says. Finally I started searching the Internet for sites about caregivers, and getting some much needed help and support.
But it is cruel remarks like the ones I've seen here that only cause more hurt and guilt feelings for those of us who are going into debt to pay for our parents' facilities. I just signed a home equity loan to pay for my mom because our retirement is running out!
Why did I put my finances in jeopardy instead of bringing my mother into my home and caring for her myself as some of the posters here are doing? My mother is verbally and physically abusive toward me when no one else is around. I have suffered from her abuse my entire life. One of my brothers and my husband have seen it when my mother thought she was alone with me, so they believe me. The staff at the facility think she is the sweetest little old lady who walked the earth.
I can't bring myself to abandon her despite what kind of hellish life I've endured since childhood. I broke that chain of abuse with my own kids, thank god. But I am truly afraid that I would become physically abusive toward my mother if she were in my home and slapped me or yanked my arm when no one was around. I am certain I would finally snap. And that scares me to death.
So for anyone who feels like bashing those of us who are "blessed" to have the money to put our parents into care facility, you have no idea what the circumstances are. And you are only making it harder for us to find the support that we need.
I just found this site and am so glad. I am an only child caring for both parents. As with alot of caregivers I quit my job the day my mom had a stroke. Did not mean to quit but was never able to go back. I was told to look into the veterans administration. If any of your parents are veterans there is medicine assistance, caregiver assistance (me) I get paid to live in with them. I now get that thrown up to me if I am not here every second. and just because I have a husband and two kids does not mean I need to go home. My christmas decorations are still on the front porch for pete's sake. I have been talking with the doctor all day trying to figure out why my mom is so confused and reverting instead of progressing as she was so well. Now its like having a baby. When I say i've had a "crappy" day today let me tell you I am talking literally(lol) Like so many of you I feel anger, irritation, wanting to disappear or change my name. I am here now because I choose to be. This may be the last times I have with my parents. I don't know if I have 3 weeks, 3 months, or 15 years. but I will keep trying and if it becomes to much I will face that and figure it out when it comes. alot of us are in the same boat and that really helps me to know I am not the lone ranger. Thanks for letting me vent and I hope the veterans info will help someone.
I think the symptoms described above are normal for anyone who is overwhelmed by their caregiving overload or anyone with "too much on their plate".
When we are overwhelmed none of us can think straight, remember things and are short tempered. Those symptoms are signals for us to back off, take a deep breath and relax.
I think it is important especially for caregivers to take time for themselves. One can meditate for 10 minutes and be refreshed, deep breathing will relax you or go for a walk.
I feel that our attitudes are transfered easily to the ones we are caring for and then they act up.
If you have a routine when going to visit your loved ones that will help. Rather than going and not knowing what to talk about. A 1/2 hour of quality time is better than 1 hour of stress.
Many people have said having activities has made their visit easier and less stressful.
For careGivers memory activities and exercises visit: http://memoryjoggingpuzzles.com
These were developed for dementia and Alzheimers patients, caregivers and their families.
Why would you have to use your own money? Once the elders money runs out would you not apply for medicaid? Either they have money or you do not wish to apply or is there some other sources unknown to me??? Any info. would be appreciated.
I love reading all the answers.Some made me laugh . We are have are problems to deal with. I too are helping my parents we have good days and bad days my brothers and sister don't understand the stress cause by taking care of someone health. Or the invisible of my parents. Sometimes the doctors blow them off because of there age.I have to be their voice.Sometimes I get mad when my sister and brothers go on vacation because I can't . But I can't let them control how I feel. Iam glad to be able to reconnect with my parents and i won't be happy to see my parents in a nursing home.
In regard to the statement about being eligible for nursing home rehab that is not the inf. I have obtained. It is only if they need rehab therapy as you say and will return to the home.
In any cases in this area and I have cked many resources and facilities if dementia is involved they cannot return to the home without 24 hour supervision is the reason. I was told they are NOT ELIGIBLE because they cannot return to the home in the sense of nondementia people. Does anyone have any other information on the subject?????
This is a question, not an answer. I just want to know if I am over reacting. As of 4am, I have had one hour of sleep today. I have to be up in 3 hours, but I'm too wound up to sleep.
When I came in after work about 8pm 2 days ago, my bf's tub was clogged. The last time this happened, I dragged mantenance to his apt late at night so that he could bathe the next morning. Again, his HHA did not call maintenance, but left it up to me to fix. I used 2 bottles of drano and the tub was unclogged by the morning. I told him that the next time this happened, to call maintenance during the day. When I came in tonight, the tub is clogged again. I worked until midnight to attempt to fix it. Maintenance will have to take care of it later today.
At 2 am, his dog was wandering around the apt. I have been picking her up and putting her on her bed several times, trying to get her to settle down and sleep. I have given up and put her on the bed. So now the dog is fidgeting on the bed and I am trying to get some sleep on the sofa.
I ranted for probably 30 minutes about not calling maintenance and the dog. I cannot afford to take care of her, but he is emotionally tied to this ancient, decrepit, blind, deaf dust bunny. I cannot get his HHA to do what I want out of her. She has the audacity to inform me that I have to have my own laundry hamper. She launders what she wants, keeps the rest of his in the laundry bag and my stuff on the floor. She tells me that I cannot feed him red meat (not a nutritionist) but will feed him entire boxes of red beans and rice or an entire strombolli. When I fix single serving meals and snacks, she empties them out so he gets enough for 5 or 6 servings. He's becoming a boat. I can't even get her to call maintenance when the tub is clogged. She didn't want to take him to his PT appt. because it was raining. He had to call her agency to get her to take him. And this woman is the best HHA that we've had.
I'm averaging 96 hours a week as a designated, unpaid volunteer caregiver. I would spend more time at work if it were at all possible. The one time I was at his apt late, his HHA was gone and he was on the floor.
Again, I ranted for probably 30 minutes about his HHA doing whatever the hell she wants, not doing as instructed especially regarding laundry, calling maintenenace, his meals and snacks, and the dog, and not getting any rest, etc. And I'm still ranting.
DID I OVER REACt?
This is in response to "did I over react". I felt your distress as I read your letter and in my eyes, you seem to have one foot tied down running in circles. You are definitely reacting to the cauous(sp) around you and unfortunately it is robbing you of what you need the most, your sleep.
A suggestion: if I were you, I would tackle the biggest irritation and solve the problem, then go to the next. You are just putting bandaids on. . .over and over.
The dog, get a crate for him, put him in it at nite or when he is bothering you and forget it.
Make a check list of responsibilities for your HHA, and talk to her. She may be the best you have had, but remember there are many people looking for work. If her responsibilities were discussed when hired, tell her this is what you are being paid for, and if she doesn't do them dock her pay or find someone else.
Volunteering 96 hours a week is two jobs+, most people find 40 hours paid time enough.
Suggestion, maybe you could volunteer 4 day time hours to those your love and not get so stressed out when you arrive late at nite. I would have left the tub clogged til day time.
Who is going to take care of you when you are burnt out and on your back? You must take care of your self first and others come second. Without your health you will have nothing.
Sorry for the blunt comments, consider me your caregiver. takeCare. karen
From the person who is over reacting:
To my caregiver Karen:
Thanks for the suggestions. I'll crate the dog.
I have to unclog the tub, that's one of my oc things.
I am used to having my instructions followed. So I think the HHA doing her own thing is extra annoying. She's from an agency and has specific duties. She's given instructions and I come in at night to find they've been ignored.
I come directly from my paying job to caregiver. There is no time for "me time" because he requires 24/7. I run errands on Saturdays in spurts. If he falls or gets stuck in the bathroom, it takes two people to get him up and settled.
Karen, you're awfully sweet to take the time to answer. I appreciate that. (that and sleeping off a migraine helped my mood)
Does anyone want a dog? She's old, small and quiet.
To Did I OVERREACT:
Question, why does the tub clog up all the time?
Your comments made me realize how much I possibly did let my Mom's toilet overstress me. The local plumber got mad at me after coming out and getting it cked out and I commented back to him we just need a new one. Anyway, I think she FORGETS to flush it sometimes.
One way you could get more sleep if you wanted to consider this your job there is occupational pay for people needing 24/7. It is not as much as a regular job and quite restrictive. They told me I could only be gone 8 hours a month. Well, I can't comply with that at this time as I do my own medical docs. BUT, it may get to the point I need to. Does anyone do this and do you have to wear an ankle bracelet or such?????? Docs have said alot of things my Mom cannot do when in actuallity she can do these things.
It is all overwhelming no matter what the deal is.
A little bit of clarification about medicare and medicaid is in order.
Medicaid is a state run program based on income and need. Each state has rules defining who it assists, what the assistance is, how to apply, etc.
Medicare is the federal program and it is based on age or long-term disability as qualifiers. One reader mentioned that after a 3 day qualifying stay one has up to 100 days paid in a nursing home. There are some rules about this:
1. Even with the 3 day stay, the discharging MD has to verify that skilled services are still needed and can only be given in a nursing home/rehab center
2. Skilled services are very specific. They include speech therapy, physical therapy, and occupational therapy - one or any combination of the three - and must be done at least 5 times a week. Also, the person must be showing a certain level of improvement for the therapies to continue. If they don't, medicare will no longer pay for them
3. Skilled nursing is also a qualifier, but has very strict definitions as to what is skilled. Wound treatment, IV's, enteral or tube feedings, new diabetec training, new medication training, inhalation therapy, etc. are examples of some skilled nursing services.
4. Medicare pays 100% for the first 20 days of care. On day 21 they pay 80% and the other 20% becomes the patient's responsibility. Basically, they continue to pay for skilled services, but not room & board. If a person is on medicaid, it will usually pick up the other 20%, as will some insurances. At around $140 a day, the cost can mount up quickly.
I hope this helps a little. As a past caregiver for both of my parents (they passed away some time ago), I know that it is important not to judge other people's situations. No one knows the situation except the person living in it.
My advice is to set limits and not create false dependency. Often we do things for our parents or spouse because we feel guilty or that we have to, and too often these are things they could do themselves. That creates a condition called 'learned helplessness.'
Many of the elders' behaviors described above are the result of fear, loss/grief and boredom. It helps us as caregivers to cope if we can learn to address the feelings behind the behavior and not the behavior itself. And that does take practice; it is not easy at first, but it is a skill well worth learning and practicing. And it can create two winners out of two victims!
Forgive me for saying this, but you have no idea what caregiver burnout is. You may be resposible for your parents but they do not live with you -- you can have a life of your own even if it is not the life you had or would like. It is not until you take care of someone 24/7 in your own home, who is delusional, can't walk, who needs to be bathed, dressed, taken to the potty and have to work outside of the home...THAT is caregiver burnout. Count your blessings and give your folks a hug for me.
Comparing stress and burnout situations is like comparing apples and oranges - both are fruit, but there the similarity ends! This site allows everyone to express their feelings and needs based on their own experiences, history and abilities to deal with caregiving & stress. People need support, empathy and compassion. Making comparisons and criticizing causes people to quit reaching out, and only add to the feeling of being alone, which increases burnout! I hope that the people who write on this site would show others the support and compassion that they are also looking for.
Comment to Caregivernow
I understand completely. I feel exactly the same way and I am in a very similar situation. I am the only child and mom's extended relatives who love her "so very much" can't be bothered to come around. I do EVERYTHING. I tell my friends that just imagine everything you have to do in life x2. There are two houses to clean (mom insists on living alone) two grocery bills, two laundry days, two meals to cook etc etc. Plus I work almost full time and spend all of free time running back and forth.
My mother is a terror. She always was and now it's just worse. She is financially destitute. When alone, which is usually one day a week, she can't boil water to make a hard boiled egg, but she sure in the hell can manage to go to Nordstoms and ask for her old credit card number and charge it up in a matter of hours. When I tell her she is sick and shouldn't live alone she just fights me like a wild animal. I never got along with my mother because she has always been selfish and self absorbed and having dementia didn't turn her into a sweet old lady, but only made things worse. She has always expected and demanded that everyone else take care of her. First it was her father, later her brothers, then her husband and then me. She has never been responsible for her own life. This is nothing new.
Two years ago when I realized that something was seriously wrong with my mother (more then normal) she was assessed and later diagnosed with Dementia, Alzheimer type. All I could think of was OH CRAP. I knew it was the end of my life. She has always demanded that I stay close to her and when she had problems it was I who solved them. But nonetheless, I managed to keep an emotional distance and have my own full and enjoyable life. After the diagnosis, my life turned upside-down and I understand completely what you are expressing. Sometimes I wish a bus would hit me to take me out of my misery. I wouldn't mind doing this if she was a calm and sweet person but she is not. She is selfish and mean and as you said, manipulative. I keep trying to justify her actions and words with the fact that she has the disease but it's extremely hard to forgive what she is putting me through.
About 14 years ago I BEGGED my mother to think of her future and plan for her old age. I asked her not to do this to me because I knew if she didn't move to a senior living type apartment I wound end up having to take care of her. I remember crying and begging her as if I was a 12 year old and she just kept saying, you can't make me move. Now it's the same thing only she tells me she will take me to court if I try and make her move. I talked to an attorney about getting a conserveratorship and he said that it's a messy business and that basically it becomes you against the parent and they will have the right to have an attorney. He also said that judges are very pro elderly, anyway, the point is I don't have the legal right to "make" her move and so it is that she continues to live on the second story apartment (she's lived there for 35 yrs) with a very dangerous staircase.
It's an accident waiting to happen.
So anyway, I'm just ranting because this is stuff that you can't really share with anyone who hasn't lived it. I really hate what it has done to my life; I hate her for putting me in this situation (because she could have moved to a more appropriate setting years ago to avoid being in such danger) and I just want it to be over. The worse thing is that I'm still relatively young..(40's) and I want my life back. I read all the books, I went to the support groups, I read the websites and even went to counseling and bottom line for me nothing helps because that stuff is all temporary band aides. The reality is you wake up and you still have to do it all over again. And as far as walking, who has time for that? And paying a caregiver, who has money for that? Yes, she is on all kinds of social programs and they do give us a bit of money for me to take care of her but I use most of that money to pay for her groceries, and needs.
I get up at 6 am, go to work then go to moms and then get home at 11 pm and get to bed at 12:30.... I still need to pick up my own house, get my things ready for work or do wash or whatever..sometimes I haven't eaten because I don't want to eat mom's stuff. I used to buy food on my way to moms but that is getting extremely expensive. There is no respite. I can't take a trip as their is no one who is willing to help and I have taken so many days off without pay to handle mom's issues. There is always a doctors, Medicaid, Medicare, social worker, day care, podiatrist, eye doctor, gerontology department, or something else that needs to be dealt with....it just never ends.
In less then two years I look ten years older and I feel that my health has greatly declined. The worse thing of all is that when I say to her, Mom aren't you glad that I spoil you and I clean your house and bring you food and take good care of you she says to me"¦what do you mean, I don't need anyone to take care of me and I cleaned my own house"¦so it's a thankless job on top of everything else.
Yes, she is extremely physically healthy, so it makes her believe that everything is fine"¦ Yes I'm angry and tired and fed up. And yes, I would be so incredibly happy if she lived in an assisted living. Hell, I want to live in assisted living and have someone take care of me.
I know you mean well by scolding people who don't think the first blogger has it so bad, but when she's stressed out over visiting once a week, poor pity her. There is always someone who has it worse. I get so upset sometimes and have vented, but then I read some other blogs and think "wow, I have it rough, but thank god at least that isn't me." This should be a safe place to vent, kick, scream, punch something (figuratively) and then maybe get some ideas and/or sympathy.
Actually, we bring some of this stress and burnout on ourselves. My loved one is in his 50's. Mentally, he's fine, physically he's shot, and emotionally he's bummed. I can't do this for the next 30+ years. I have a full time job, so I only have to be with him 108 hours a week. But I found that I couldn't read an email, a recipe, finish going to the bathroom (see a pattern?) without him calling for me. I got onto him, but I had to tell him, you're gonna hafta wait until I'm finished. I'm at work (on my day off) and he's only called me twice for something so far, so we're getting there. So when you pick up something your loved one dropped, or answer the same questions for the umpteenth time, you might see if it's worth your while to let the dropped item stay until later or pretend you didn't hear the question. That, and I find taking a walk, late at night, after I put him to bed is calming.
I'm glad my symptoms of caregiver burnout are common. I've had anxiety/depression/insomnia since age 9, but, caring for my hubby for 10 yrs. has increased above. I'm sure I have it! It's helpful to know I'm not alone, & yes, a place to vent is great. Like a support group at home. I agree, some folks write things that make one feel worse than they already do! Let's just be here for folks!
You might want to count your blessings.
You should thank God that you have the help of assisted living and a 24/7 personal aide.
You need to say a prayer, express some gratitude for all you do have and try your BEST to give your parent(s) the support and LOVE they need!
If you have physical and/or emotional problems certainly seek medical help.
I, too, am a 24/7 caregiver for my 89 year old mother who, we believe has started the dying process. She has lived with my husband and me for over 8 years due to broken bones caused by osteoporosis and during that 8 year period we have nursed her through broken wrists, breast cancer and radition treatment, CHF, and a stroke. The stroke was the last straw -- she can't walk and she has developed dementia (my husband and I joke each morning wondering if "Syble" is coming out today...) These past few months since the stroke has become increasingly difficult even with the help I have. My mom is on hospice and and I have aide that comes in 4 hours during the day to give my husband time to sleep (he works nights and I work days so my mom is never alone). We are both only children and have no children (and we all know how those "good friends" seem to scatter after this goes on for a while) so all this cargiving falls on us. I have it better than many of you guys, but as a response to the caregiver whose parents are in a home and she only visits once a week, I think I agree with one of the other posters -- she is not suffering from caregiver stress but rather depression. I am sure she is stressed with the responsbility of the legal side of taking care of your parents, but your hip is not out of place from lifting your mom from the bed to the toilet and you are not screaming at your husband for some stupid reason because you had absolutely no sleep the night before. My suggestion to her would be the same as others have suggested -- seek help for depression, but I respectfully say to her that she does not belong in our special "club" of burned-out caregivers.
As I read over these comments full of frustration, anger and bitterness... I can't say I fully understand, but I have empathy for you... and I am not sure if I could do it myself... but I would try.
My parents have both passed, there are many times I wish and prayed that they were here with me... but not.
Some day when your loved one is gone, you will reflect back... yes it was difficult and I am tired, but you can look in the mirror and say... I did the best that I could and be glad that you took the time to "care".
Hope and pray that someday if you are in need, someone will take time to be there for you.
Time is precious... stay in the moment.
For the original post: If she see's her parents once a week, that is an errand, not caregiving.
I can understand that getting their personal paperwork organized can be daunting in the beginning, but file it away.
We all have the right to vent on here, & we all have our limits. Some of us are stronger, & used to handling more. Let's all try & be there for everyone who finds this site.
Being in a similar situation,what I would love is just a hug! To be able to cry on someone's shoulder(literally).That's it.No opinions,no feedback just someone to let you express yourself i.e.vent.Maybe even someone cooking a meal or going to the market for me . Hope that helped!
Puzzles, well said. We need to tell folks we love them often. You never know when 'our' time comes. Appreciate every moment. We all need to know that someone cares....even if it's a total stranger. Positive thoughts, & energy help. Prayer, too. Negativity must stop! Venting is one thing.....helps. Everyone handles their situation in their own way. This site is for support. Let's all provide some! Life is hard.
I am also an only child and have a mother in assisted living. Although she lived with my family for 10 months prior to her going to an assisted living, I feel guilty about her being there. Yet somedays I can barely get there without feeling overwhelmed by working and taking care my own family. It has been over three years, and I am truely running out of energy. I am finding that what helps is to do something for yourself at least once a week. Whether it is a walk, shopping, or simply going to the library. Doing something for you personally will help you get through this difficult time. I also feel resentment towards others that never had to experience this difficult experience. This website has been a huge support. So many times I read it and say "that's me".
It might sound insane but I miss my role as caregiver. I didn’t enjoy the chaos, confusion and being on call 24/7 but it gave me a purpose and something to focus on which was bigger than me. As a non-parent this was a new experience for me. I would wake up, after a less than restful sleep and listen for the TV. My mother was always an early riser and dementia didn’t change that. If I heard the TV, I willed myself to get up to get her breakfast and morning pill. Literally every part of my body ached because I was tired, worn out from the day before and while it wasn’t good, it was much easier to get by on 4 hours of sleep at 20 than as a 50-something. If I didn’t hear the TV, I still had to get up to find out if she was okay and see why she wasn’t up. Eventually I was forced to hide the remote because she kept losing it along with the still missing telephone.
On rare occasions she would sleep in which meant a little more rest for me. If she was up, I dragged my weary body out to the living room and would peek around the corner to see what she was doing. If she was sitting quietly, I’d inspect the house, first the kitchen, dining room, etc. to make sure she didn’t touch, burn or break anything. If everything seemed to be okay, I’d ask if she was hungry. This was a yes or no question but she always had to ponder it and eventually I’d lose my patience and say just say yes or no, to which she would angrily reply oh all right. Each night I defrosted her meals from God's Love We Deliver for the following day, placing them in microwave safe containers. They had to be defrosted in the refrigerator not room temperature. If there were mushrooms I’d pick out each one because she hated mushrooms. I’d heat up the soup, a breakfast roll and give her the morning pill. She would always say not this again and I’d say it’s the first pill of the day what do you mean again. Fortunately although she complained, she didn’t resist.
While she was eating I’d brush my teeth and return to bed while she ate. We had a mobile table from hospice and I’d tell her when you finish leave it there and I’ll take care of it. I’d be dozing off when I’d hear the table being moved. I’d jump up and say didn’t I tell you to leave it alone. I think she wanted to continue doing things for herself. This happened EVERY morning. I’d wash the dishes and try to get some work done. If I was unusually lucky she’d spend the day watching TV and nothing eventful would happen. More likely she’d try to go down the stairs without her cane. This was an ongoing battle. Sometimes she'd be so angry that I reminded her not to go downstairs without the cane she’d slam the door and sit down to pout. Whatever! It was better than falling which she had done once when I left to go pick up her medication.
During the day I’d give her snacks such as salt less potato chips, granola bars and Breyers three flavored ice cream. By the time I gave her dinner she’d claim she was starved and hadn’t eaten all day even though she sat next to an empty potato chip bag, which she said the home aide ate. Back then I was stupid enough to argue until the social worker told me you can never convince someone with dementia that they are wrong. It took ages for me to realize that using logic with someone who was no longer capable of being logical was a losing battle. I tried to keep her calm and out of trouble and prayed she’d be happy relaxing in the living room but she often had the compulsion to remove all the clothes from her closets and drawers which had to be put back. Why? I have no idea but it frustrated me every time she did it because I couldn't stop her from doing it. Five minutes after the home health aide left she’d pull these stunts. However it was better than trying to drink French dressing or eat some outdated can of food which she tried to open with a knife.
At some point in the evening she would say she was going to bed and I prayed she would and stay there but as her dementia progressed, this was not the case. She would go to bed and I would breathe a sigh of relief that I could finally watch a movie and get something to eat but 15 minutes later she was up making her bed. I’d ask why are you getting up when you just went to bed? I tried three different prescriptions NONE worked. The cycle of going to bed then getting up sometimes lasted for hours each night. Last year she began waiting up for some “man” to pick her up at 11 PM. Convincing her there was no man was an exercise in futility. This would drag on for hours when all I wanted to do was rest. My days extended from sun up to sun down. When would I sleep or eat or even shower? Once I was very sick but had to stay up to deal with the “mystery man who was coming by the house.” I had less and less time to myself and it became impossible to plan anything because I never knew what curve ball she would throw me or more accurately the dementia would throw me, although at the time I did blame her. She would get angry that I was watching her and yell why are you always following me and I'd say to keep you from doing something stupid! The stress took hold in the form of headaches, backaches, nervous stomach, high blood pressure and my drug of choice binge eating.
A year ago she was in respite care and while the first week was harder than I imagined for me to adjust, the second week was better and I extended her stay for the maximum period of a month. I finally got some uninterrupted sleep but even that took a while to get used to. I still listened for the TV to see if she was up or not. I railed on many occasions against being a caregiver especially since I had no help. It wasn’t fair to ask me to sacrifice my life, plans and job to stay home tied to my mother 24/7. That didn't even include uncontrolled crying, yelling loudly in her sleep, hostility, threats, verbal abuse, 3 hours prep to go to the doctor and the increasing incontinence which was intolerable. I used to lie awake at night dreaming about what it would be like to be free and have my life back. Just the freedom to take a walk without worrying about some disaster taking place in my absence would've been nice. I never went anywhere without checking my watch. As I approached the house my heart raced not knowing what I might find when I went inside.
My mother has been gone for 2 months now. I have my life back but I don’t feel free. As difficult as it was, it seems like it happened a million years ago. We tend to focus on the negative and I’m the same but I now remember the times when she smiled because I brought her some tasty treat or drooled over the food made on The Chew, or when she noticed a little kid on the news and commented how cute they were or the gleeful squeals after getting a good scrubbing down from the no nonsense aide who once came to bathe her. I understand the exhaustion and frustration many if not all face as caregivers but it is so worthwhile and it's better not to have regrets that you didn't do enough because even when you did everything imaginable you still feel guilty. I miss being needed and for maybe the first time in my life having to be totally selfless for the person who was always willing to sacrifice for me. It seems it was the least I could do.
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