Caregivers' 8 Least Favorite "Helpful" Comments
By Paula Spencer Scott, Caring.com senior editor
When a group of eldercare workers I met last week learned that I write about self care for caregivers, the subject turned to ways that friends and family unwittingly stress caregivers out. Said a social worker, "One of my clients complains that her sister says, every single time they talk on the phone, 'You should get out more, Hon!' But she's totally oblivious to the fact that it's really hard for her sister to do that and she never offers to help!"
Knowing nods and gently shaking heads encircled the group. Then the others began to share stories. The lesson for me: What people say can be just as stressful as what they do (or fail to do).
Here, my informal collection of "Helpful" Comments That Caregivers Hate to Hear:
- "Wow, you look worn out!""
Uh, this is what sleep deprivation plus worry plus fear look like, thanks. You're gorgeous, too!
- "You know my number."
Does that mean I can call you for help, and you're willing to really come through and help me with something, is that what you're saying? So could you drive Mom to the podiatrist on Thursday at 3? Or pick up a list of groceries for me every week when you do your shopping? Or come play cards with my dad this afternoon while I run to my yoga class?
- "Oh my mom/sister/brother/grandfather had that, and it was awful!"
Hard to say which inspires more gorey stories, caregiving or childbirth. Which is ironic, considering that they both have sweet sides. I don't need to be scared; I need to be empowered.
- "I don't think that's the way you're supposed to do it…"
But I'm doing it. See?
- "I can tell you're stressed...you've put on a little weight."
Don't. Tell. This. To. Anybody!
- "How long does he have left?"
Show me your magic wand and I'll show you my crystal ball. Let's change the subject to something less depressing.
- "You should get out more!"
Why, truer words were never spoken. What are we going to do about them?
- "Do you worry that you'll get it too?"
Alzheimer's/cancer/Parkinson's/COPD/pneumonia/most diseases of old age aren't contagious, like the flu. Let's cope with one case at a time, please.
Heard any doozies yourself? Add to our list -- or share how you respond to unhelpful comments.
Try to remember to laugh, hold on tight to your sense of humor( as askew as it can become) laughter is the sunshine of the soul. My Father in law is 65, my Mother in law is 63. She was diagnosed with early onset/rapid decline alzheimers about 3 years ago. She is declining much more rapidly than my 89 year old Grandmother who was diagnosed with alzheimers 12 years ago. My Mother, Dad and myself have taken care of her for 11 years. We took care of my Grandpa for 8 years before he passed,he had parkinson and black lung disease. My husband and I are raising our 19 month old Granddaughter from birth.We are having a multi generational home built for my in laws and us.My husband only has his Dad and brother now. Unfortunately the brother is "shell shocked", and couldn't be of help if he tried. My Father in law told me the other day that my Mother in law thought something was wrong with the medicine cabinet, she said it looked "funny", he told me it was the same as always. So he said to her " if it looks funny we should laugh", so he hugged her and they laughed.....(and then he cried).We must allow ourselves to cry as well. We ARE allowed to feel lost,alone,scared,depressed,angry,unfair,sad,and all the other negative emotions that go hand in hand with care giving. We are only human and have weakness'. I really don't appreciate when people ask me "Why are you doing this to yourself, why not just put them in a home?" Well, I am not alone.We do these things because we are suppossed to,because we have to,because to us there is NO OTHER WAY. Thank you for asking.Got any helpful ideas? A prayer for all, forever....May our souls be soothed by the Lords' mighty hand that we may continue our journey until we are no longer needed.Amen.
Hugs DebCHR
Wow! I have been away so was unable to send hugs and comments back to you all on this feedback, but wanted to thank everyone for sharing their pet peeve comments -- this thread of excellent group-think should be required reading for all adults! You're all amazing.
All of you on this thread, are so helpful. It really is a great place to vent our frustration, especially about things that are basically beyond our control. My father told me yesterday, that he had talked(again) with adult protective services. He says the investigator asked him if he could take care of mama, if she was allowed to go back home??? Oh my goodness. I don't know whether they really asked, or he is just confused about what he heard. But I just told him(for the hundredth time) That He can't take care of himself, He has a caregiver, much less mom. I just want to holler out loud sometimes. My brothers don't even communicate with me most of the time anymore. They call Dad occasionally, But they are so burned out with his complaining about my sister and me. I know that, he is lonely, I know that he is depressed. I still wish there was more that I could do. I want to be there for both my parents. I want to do more for my sister, Who really takes most of the brunt of my fathers complaints. We, all I think, Are just doing the best we can. The bible says " Worry for nothing, but rely on the Lord for everything." Thats where I am right now. Just trying to rely. But I also read what all of you say, And It really, really helps, just to know I am not alone in this struggle. Hugs to each and every one of you.
Reading all these comments make me realize that we're all on a damn boat in the middle of the Sea of Confusion. I don't mean we don't know what we're talking about --I mean the confusion surrounding those near and (who should be) dear to us ways of talking, taking action or not taking action in matters regarding the person we are taking care of. I get confused with dumb comments, actions and reactions from those offering suggestions to us. I get confused as to why people think this is a contagious disease and stay clear of us. I get confused hearing, "I know just what you're going through," when the person speaking this hasn't a clue. I guess my point is, we (here at this site) have each other to visit, air, vent, preach (yes, we're all kind of guilty on this one) but most of all, to offer that extra lifejacket or compass to get us all to a safe harbor.
Azalea, I don't care what anybody, including you, says, but you are your mom's angel! Folks who have never taken care of an elderly family member really doesn't get it. I do get it, as I have been down that road---twice. altho we didn't have mom or aunty live with us, I still was on the go with mom, especially, to appointments, church, shopping. After she left the farm at age 92 and went to assisted living after she fell and got stuck between the back of her chair and a wall. we had an auction and sold her car along with a lot of other stuff. she stayed in asst. liv. for 5 yrs. fell twice, broke hip and femur, rehabbed like gang busters. I got very tired of driving her to her eye doc, GP, 40 miles one way, and talked her into moving into my city, a wonderful nursing home. I still took her out almost daily, also to church and shopping. we got very good at transferring her into the car, and I got a transport chair so I could get it in my car trunk easier than the one she used in the home. I took her for walks, with her walker. she was at the home for 3 yrs before passing away 4 months before her 101st birthday. she became my best friend, and I don't regret any of that time with her. Now my 98 yr old aunty(mom's sis) is really a piece of work. I'm her POA for health care. She's in a nursing home 30 miles away, and now with my other health care "charges", I don't get to see her as often. she has been ready to die for about 6 years, and that's what she talks about when I call her. Either that or she rants at me about keeping all her pretty things and not giving her the money from her auction. Which of course is not true, but she has dementia, so I just go along with whatever she says. I know that she will forget about it by the next time we talk anyway. she never had kids and I'm the oldest niece. My daughter has fibromyalgia, I think I told you all about her. Age 42, married to another saint, no kids.Her chronic pain started in the xiphoid process(part of the sternum), spread throughout her whole body, nowhas been diagnosed with fibro. Hasn't worked in 18 months. Is on 200 mg of lyrica, plus a couple of other drugs with long names I never can remember. I also take her to all her appts, etc., etc.,etc..... Now my DH has alzheimer's, mild stage, but I can see the writing on the wall. Haven't seen a neurologist yet, appt in July. I have to fatten him up too. I nag him to drink 3 bottles of Boost(he calls it Burst.<BG>) everyday. We look like Jack and Mrs. Spratt--he's skinny and I'm "fluffy". It's not always easy for caregivers to stay upbeat, but I try to find something to laugh outloud about everyday. thank goodness for friends and internet jokes!!! And how about this weather? Are you cooped up in an air conditioned house, too, like we here in WI are? I have to water my garden everyday, the poor dear plants are so droopy. And we have our lawn mowed twice a week! Happy Trails to yooooouuuuuuu...............
Well, I certainly don't feel angelic or saint-like. Far from it. Only doing what has to be done. Just sayin'.
Hugs Marisa333
Howard this is mrjess5 in RI here in RI we have to abide by the Hippa Laws about the privacy act to protect our family members. When ever I need to know anything about my moms condition I have to go through leagle channels to find out anything on her condition and I'm my moms soul caregiver and I have to show my Power of Attourny to get any information about mom. My Brother and sister live down south and the only time they come around is when they think its right for themto try and change things that have been in her will etc.etc.
Howard - Is there any way that you can inform the facility where youe Mother is that you do not want them accepting calls from these relatives and/or giving them any information. Both you and the professionals could explain that in the United States we have HEPA laws that do not allow staff to communicate any private information. That might be step one. Step two might be to tell relatives that you will email them each week with any supposed problems your Mom has made and explain how you and your sister addressed them. In other words, thank them for called and promise to keep them informed weekly. Step 3 tell them how much their calls mean to youe Mother because it allows her to vent her frustrations which really helps her to feel understood. Hope this helps.
I think the most annoying for me has been out-of-town relatives (they are in Europe) who call my mother 2x a day and while on the one hand it is nice that they take the time to do that, the problem is that if my mother has any minor complaint (about how she feels, how the room is, how the staff is treating her), they immediately call the nurses to complain and then call me to see why I am not fixing it. 99.9% of the time it has already been handled or it is an exaggeration by my mom. "all of the physical therapists are like used car salesman, swarming all around her to make her work out." Yesterday it was the hospital technician who "got her out of bed a 11:00 p.m. and made her walk all around the ward." My sister was there and it was really 5:30 p.m. and my mom had to walk about 60 feet. I understand that my relatives in Europe are trying to be helpful, but they also know that between my sister and me, we are in my mom's room every day for a total of 8 to 9 hours, and having them second guessing everything is a real pain.
Azalea, You are a saint and an angel on earth, as your name implies - a beautiful flower. Thank God for people like you. Depression is a form of supressed (spelling???) frustration. I really don't think I would have that kind of fortitude to care for my mother as you have done. A thousand hugs for you.
Thanks, Dolores. I do get very frustrated sometimes. And depressed. And I often feel helpless. I've been told by many people that those feelings are normal. Since the question has come up, I'll answer it. My mother is 93. She suffers from severe osteoarthritis and osteoporosis. She has severe kyphosis and is very bent over. She used a cane for years, and for more years I pushed her around in a chair. We did a lot of traveling during those years. I'm a retired high school teacher, and I was determined to keep her active. In 2007, she broke her hip. For a while after that, she could walk a bit with her walker. She could, with my help, get up from the bed and get in her wheelchair or the car. We had a really elaborate method of getting her in and out of the car, but it worked for us. As her arthritis pain got worse, I began transferring her from bed to wheelchair to car, etc. We were still able to travel. I felt like the more she got out and mixed with people, the better her mental state would be. We regularly attended church and other activities. In June of 2010, she was diagnosed with pneumonia and spent quite a while in the hospital and recuperating in skilled nursing. We still aren't sure what caused it, but the doctors think it may have been aspiration. So that meant she needed a pureed diet, which I have been preparing for her ever since. But we still went to church and other places. We got her a more comfortable chair and a used van with a lift to transport her around. Although she began to spend more and more time in bed sleeping, I could still manage to get her into her chair and into the van so we could go to church or doctor's appointments. I am a small woman, and I have some scoliosis and must pay regular visits to the chiropractor, so moving her around isn't easy. But it was important to me to do so. In April of 2011, my mother just couldn't get up anymore. She said she hurt too much. So she's been bedbound ever since. She also has some age-related dementia, which the doctor says is natural. It is almost always worse at night and can on occasion be very challenging. My mother doesn't eat much. Because of her kyphosis, she fills up quickly. Consequently, she doesn't weigh very much. She still often has pain, even lying on a gel mattress. We have a home health nurse who visits once a week. Her vital signs are good. I could possibly get some help if I applied for Medicaid. We have been spending down her money for several years now, and I feel sure she would qualify, but I just haven't done it yet. She also qualifies for home hospice because her situation has declined in recent months. She doesn't appear to be at death's door to me, so I decided that we were doing ok right now and would not use their services at this time. We like our nurse and would have to give up home health if we went to hospice care. Plus, the services they said they offered didn't seem to be what we needed. I can leave my mother alone for a few hours to shop and go to appointments and church. But I don't leave her alone for more than two hours. If something comes up, I do have a few church friends and an aunt who will stay with her. I don't ask them often so as not to wear out my welcome. At first, I was upset about not getting to go and do like we used to, but as time has passed, I have come to embrace my role. May as well, right? My mother won't be with me forever, and I feel strongly that this is what I'm supposed to be doing. I only responded in this thread because I wanted to contribute to the conversation about comments that people make. As I said before, this isn't an admirable job. All too often, I feel frustrated and inadequate. But I am beginning to realize, especially as I talk to others about it, that no one has all the answers and that I am doing as good a job as anyone can. I don't always feel successful, but so far we're still hanging in there. By the way, I have received some other private responses, and they all seem to agree that too many people say they know what it's like when they really don't. No, I'm not angry or resentful, and I only get defensive when people argue with me about things they know nothing about. It isn't an easy job, but there's a lesson in here somewhere, and I hope I'm a better person for learning it.
GOSH, Azalea. You say you are NOT angry. I sure would be in your situation. You have every right to be angry as you have a lot to deal with. AND you know what, there is nothing to be ashamed of in being angry. It is a very natural and necessary, yet strong emotion. I have several severe situations that I am trying to deal with, but at least people around me are as supportive as they are capable of and THINK that they are helping with their kind words. I admire you so much for caring for your mom. LOTS OF BIG HUGS GO OUT TO YOU.
To Azelea: The church I found was resourseful where they have support groups, they also have volunteers that help with providing care for appointments and errands for families. As a member you become family. That is what I meant by the church helping out. You didn't express how your mom was, what type of illness or what stage your mom's illness was, so I just don't know.
Dear Anonymous, You have read my comment incorrectly. I am neither defensiver nor angry. I'm not sure where you're getting that. I have a church. In fact, I just got home from the church my mother and I have attended regularly all our lives. How would my church be a resource? I thought this thread was to discuss comments. All of the comments I get are from church members.They're the only people I see. ;-)
Dear Azalea, My heart goes out to you. However, your message sounds defensive and angry. I have made comments to my situation where my brother lives with mom. Has lived free/clear. Mom has given her heart-soul to cover his butt and accommodate him. Been divorced twice and moved back home. That's another story. Both my brother and I have Durable Power of Attorney, Whatever I have tried to do, to care for mom, take her shopping, bought her shoes, t-shirts, do house cleaning, (thou with him living there, he could do some of this) whatever, my brother found fault with it. Nothing I said, or did was good enough, to the point he would remove her from the house when he knew I was coming over. So I stopped arranging visits. I went over to the house unannounced. He then called the police saying I was not welcome. Thou, mom invited me in. This is her home, not his, Long story short, the police told him, he and I better come to an understanding. Later that year, mom had a procedur done at the hospital, only for him to tell the staff and doctors not to discuss mom's health with me. What is his problem? We both share Patient Advocate as well.. Now to be the only child you have no one to argue with. Your sense of direction comes from within your relationship with your parent. I would follow up with doctor and caregiving resources. Perhaps the local senior center or if familiar with a local church. There are plenty of agencies, just keep searching. I found a support group where the counselor made comment that I was angry. You bet, I have consulted lawyers which my course of action would be to drag my brother into court. For conservator/ guardianship, this would be a nasty case and mom would no doubt then become a Ward -3rd party. My brother has made this all about him, not in what is mom's best interest. He has always hid behind mom, and mommy has always supported him. The lawyers and counselors ask me "what exactly do I want to happen"? What exactly do I want to accomplish? I ask you the same question, As you say, it is what it is,... My brother, too is angry, I too have a family, a husband, who I take care of, who is a stroke survivor, married almost 30 years. My brother cannot or will not understand the level of committment. but I will not apoligize for that....... Only time will ease the soul,....Blessings to you
People say the darnest things. In addition to "I don't know how you do it," I often get "You're doing a great job" and "I admire you." I don't think I'm doing a great job. But I AM doing the best I can. And, quite frankly, I'm not sure anyone could do any better. That doesn't make it a great job. They don't know. They're not here. Admire? C'mon. I tell them there's nothing admirable going on here. Everything I do, I do out of fear and desperation. After taking care of my mother for many years, including round the clock care for 4 years, I'm beginning to finally get in the groove. It's what I need to do both for her and for myself. I don't think it's admirable. It is what it is. One woman told me how much "joy" it gave her to see me taking care of my mother. I smiled and told her she was more than welcome to come over and share the joy. Went right over her head. The worst comment of all came from a young woman to told me she knew how difficult it is because he took care of her grandmother two days a week years ago. This woman has a husband, two children, four sisters, and two parents. I am an only child with no husband or children. She has not clue what is involved, so she shouldn't say such things. I actually enjoy taking care of my mother, but it is extremely challenging. We live one day at a time and never know from one hour to the next what issues may arise. But we're still here.
mrjess5 and others. Isn't it wonderful when they still enjoy music? My husband and I would get up and dance in the living room to the music on TV. When he could no longer move about, I would hold his hands and say "Want to dance?" and we would keep the beat with our hands as his eyes sparkled.
To Anonymous: I suppose a good way is to start on the local level with your state representative. Every chance I get I drop our a little note or hint that we need to address these issues...on a larger level there is a group writing Congress and apparently some sort of measure has passed, however, I am certain it will be a while before we see any changes made...
To Rdee, Thank you for bringing up a very valid point. IAre there any contacts or agencies that we can contact. It's just awful how much these assistant living/ memory care facilities cost. And it certainly isn't going to the salaries of the staff and care givers that provide hands-on care for our loved ones.
We need a cure. We need Congress to quit pussy-footing around and get to the heart of the matter. We also need a cap on the outrageous prices these "care centers" charge. Who in the heck can afford $5000-$7000 a month!?! Seriously, it's a racket and these places know exactly what they're doing. Furthermore, what baffles me is scientists have figured out a way to GIVE mice Alzheimer's...can't they figure out how to take it back? And what the HELL is the AA doing with all the funds they raise?! Come on...we're not getting any younger here.... phew, venting is nice....
As commented in an earlier blog, my mom also has dementia. Thou, I don't live with her, last summer while visiting, I witness her "salad talk". She talked about wanting to go home, thou she is living in her own home. She was referring to her home as a young girl. She talked of my dad, past away in 1996, she talked of visiting her sisters, both have been gone since 1993. Home is a safe haven/ My mom now as a collection of dolls and stuffed animals that bring her comfort. My support group calls it "theraputic lying" to help with diversions. Yes, it is painful to watch your loved ones handle this disease. What is more painful is to not be allowed to visit mom. Now is here's the real problem, both my brother and I have Durable POA, both the same document, signed same day. My brother lives with mom, waives the flag of "established residency". He is upset that mom and I have had established joint banking, With his DPOA I caught him swiddling money out of the account and I not only confronted him, but the bank as well. Long story short, the bank has now frozen mom's account. Fortunately, mom and I have another joint account with a Credit Union. Credit Unions play by a different set of rules. My brother has done nothing but manipulate and jerk me around. He finds fault with everything. He hires out caregiver services for mom, as he benefits from their meal prep, laundry services, housekeping, errand shopping, that is supposed to be handled for mom's care. He lives with mom free/clear. Does not work. My last visit with mom resulted with my brother calling the police, becaues I didn't call first. In past visits I had called only to find no one home upon my arrival. I have contacted many lawyers for advice, (to go to court for conservator/guardianship) thou DPOA's are a helpful tool, please don't ever have two set up unless the responsiblilites are different. My brother has certainly shown his true colors. He has made mom's illness all about him and his needs, Mom is his "gravy train". The counselor refers to as a Parascitic child syndrom. Thank you for letting me vent..... To all you families that are able to "get along" and "support" one another Blessings to all of you...
Thank You all for your kind comments. I'm willing to try anything that works Mom loves my chiken cesar slads so I made one for her and all she did was look at it. I did purchase a cup with a straw in it and she won't even attempt to try anything new. Early tonight she told me she was going on to the front porch which is all closed in and she was going to see where her husband was he's late and hes never been late coming home . I sat her down and showed her a photo of the two of them together and she said I don't know that man. They were married in 1973 and my stepdad passed away 8 years later. He was a very intellagent man and he was an oldfashioned English man he came over here from Liverpool Engaland in 1941 and when they were married he took her on several trips around the world. They went to Amsssssterdam, they would watch the people on the dancefloor and over there the spectators weren't alowed on the dancefloor but that didn't stop mom and dad they got up and started dancing and the dancefloor cleared the way. to this day mom still loves to dance,it's funny how she remembers that but her speech is getting worse and she doesn't make sence when she is speeking. Dementure and Alzhimers is like having DIABETES and it has hit the brain and all the nerve endings. I have type 2 Diabetes and I know how it feels when it hits your nerve endings because it hits my feet hands and all the nevers in my boby. Well my friends it's 9pm and I have to get mom ready for bed HUGS TO ALL OF YOU AGAIN HAVE A GOOD NIGHT>
Dear mrjess5 My mom, too, has dementia. I attended an educational seminar and one of the topics was on dementia and eating. The caregivers mentioned that eating can be a difficult time for them. Some suggestions, if they are able to feed themselves. Have foods placed around the house, that they like to nibble on. Finger type foods. What is not eaten at the table, may be snacked on later. Some foods they may not like the texture, grapes is one, peas, is another Too hard to swallow. Keep the nurtrional milkshakes handy. Ensure is good. Try not to make it a power struggle, remember how children wouldn't eat their vegtables, this will only upset you. However, sometimes she needs to be prompted to eat. Hand over hand, then she seems okay for a bit, I found a sippy cup that is unbreakable, (she was dropping and breaking her beverage glasses) diswasher safe, from a hardware store that sells picnic supplies. I doesn't look like a baby cup, but has a lid and a place for a straw. Easy to hold. Does not sweat, so you can put ice in it to keep drinks chilled. My mom eventually eats her meals as she grazes all day. Of course, it leads to clean up, but at least she eats. Blessings to everyone...
Hi mrjess5, Thank you very much for your comment. I'm sorry to hear about the trouble you've been having with your mother lately. That must be very difficult for you. Here is an article about Alzheimer's disease and eating problems: ( http://www.caring.com/articles/alzheimers-eating-problems ). I hope this helps. Take care. -- Emily | Community Manager
Mom has been misreable for the last couple of days not wanting to eat what ever I would make her to eat I don't want any of that stuff and she is the one that asked me to make it for her. I myself have been having a lot of trouble walking around and I had to go to the doctors today to find out whats going on he checked it all over and he ended up giving me cortazone shots in my left knee to releve the pain. Lately mom is very demanding and I really don't know why I know its the Alzhimers the doctor tried to carry on a conversation with mom, she didn't know who is was it's getting sad to see her like this she has always been a strong lady. All I can say is PEASE COD HELP ME TO UNDERSTAND WHY THIS HAS HAPPENED TO MOM> Well my friends take care and keep your chins held high because we are all doing our best to care for our lovedones. A HUGE HUG TO ALL CAREGIVERS> HAPPY MEMORIAL DAY TO YOU ALL!!!!!
Hugs Joy
It feels so good knowing that we are all in the same boat, even though we feel so alone in our job and responsibilities of caregiving. It is a thankless job, but at least we can sleep at night knowing that we're doing the right thing for our parents or loved ones. We didn't ask for it, but that is how the cards were delt. It's a good thing we are tough cookies. Those people with all those crude comments have to live with themselves. They know perfectly well that if they "offer" to help and don't come through with helping in some way, then they are off the hook, because after all, they "offered". Like they did the right thing. Ha,ha . They should be ashamed of themselves. We on the other hand can be proud for what we do, even though it drains the P out of us. Someday we will be able to enjoy life, (if we have any life left in us), and be thankful that we did what we did. Say your prayers for added strength to get through each day of your caregiving. May God bless you all. (and me too)!
Hugs perspective
There's another one that I hear a lot...."I don't know how you do it...." I don't know how I do it either, I just do...
Hugs DebCHR
It would be nice if there were chapters which we could belong to and all get together for support...in person....i'm from MA ...anyone else?
Joy, thank you so much for the welcome....You gave me hope today that it is never too late to have a good life!! God bless you and everyone here...It's a journey few wish to encounter except for the very brave...: )
Hugs Joy
The one I hate most is: WELL, YOU'RE THE STRONG ONE!!! HELLLLLLOOOO, NOT ANYMORE!
All I can say is Lord, help us all!!!!
I'm beginning to get burnt out .I'm with my mom 24/7 and seems like every time iI try to get a little rest for myself even if it's getting on the computer for 1?2 hour I have to stop what I'm doing and go and find out what my mom wants, Don't get me wrong but I do LOVE mom dearly but lately shes gettin g very needy and I just want a few minutes to my self am I sounding selfish, I don't mean to but I think you will all understand what II'm trying to say I just put mom to bed so I thought II would relax and look on the computer and see just what messages I had so I'm done venting for now and tak her little dog Samantha that we just adopted to keep her company which II found was the best thing that I've done for her IT"S like Therapy which the nurses said I should try and it's working, We got Samantha from FRIENDS OF HOMELESS ANIMALS and she came in on a Trasport from Mo. Well to all the garegivers Than ks for letting me Vent. I tried to email my sister down in Florida and she hasn't had the comman curisty to email me back or even call me to see how mom was doing, my brother in Virgina is the same way. Well my friends I say good night and try and get a little sleep because 5:30 am comes around very quick and I start the whole thing over again. GOD BLESS ALL THE CAREGIVERS AND FOR ALL YOUR SUPPORT.....
Hugs Joy, RDee
Wow! Lots of venting going on! Kinda nice to know that I'm not the only one struggling with life as a caregiver. Makes me want to join a support group now knowing that my mind isn't exagerating the frustrations I'm having.
Hugs RDee
To anonymous - Thank you for sharing. What I want you to know is there is light at the end of the tunnel. You can move on and have the wonderful life you have been hoping for. It is never too late to be what you've always wanted to be and to even find love again. I know, because I am doing just that. At the age of 76 I opened a business and I am following a vision I have had for years. Don't need a partner right now I'm too busy having fun, but maybe someday. In caring, Joy
Hugs danielle fine
Hi, what a great article and website! Wish I had known about it for the last 10 yrs up til a month ago, when my last parent, my dad, died.... I was sole care taker for both..... My sister was non existent throughout the whole ordeal, but would come down for money every chance she could get....Believe me, it was a mad house! Looking back, I should have placed both parents in a home, but my mom wanted to die at home and I respected her wishes, but at great cost to me...Not complaining, becaue I was happy to do it and I do not regret any of it........Maybe the part where I lost a good chunk of my life and health but other than that, I'm ok.... I was a good daughter and when my dad died April 21st, I had no regrets.... My sister on the other hand, came in and put on the crying routine...I could count on one hand how many times she came to visit EITHER parents when they were ill or dying...She also did not lift a finger in making funeral arrangements....So, here I am, wondering what to do with the rest of my life and how on earth do I heal....from the stress, the lack of sleep, the worry, etc etc......................................I started care taking on the heels of my husbands death 10 yrs ago and I most likely got involved, first, because there was no one else going to do it, and secondly, it took my mind off my grief from losing my husband... I'll tell you, I was a lot younger then, prettier, job worthy and marriable, if that's even a word........................Anyway, I digress; I hated when friends would say to me, even after seeing the hell I was going through, why don't you get a job or take an art class to keep busy! Keep busy??? What the hell do you think I do 24/7....OR, well, you ALWAYS seem so tired and burnt out, maybe you should...fill in the blanks because I've heard them all!!!....Instead of saying, how can I help, they think they should offer their God awful two cents..............THen the cherry on the cake one, is a day before my father's death, my sister just glides into the room and says, why did you take daddy off of aricept!(he's in hospice mind you) he was so much more alert!!! DUH, dad's dying, sis! to which she says, NO HE's NOT!! ....UHHHHH, HELLLLLO is ANYBODY HOME!!..........So, yes, we've all been there and done that and heard it all, so for other people to come along and say the most insensitive callous things not only shows their ignorance but total lack of support............I could share a few others too but I realize I've just been going on and on here....Please forgive me...guess it's all the years I had no one to share with.....
I love it when my brothers (all whom live out of state) say, Hey Jan, you know what Mom should do ____________ (fill in the blank) because what it does is puts something else on MY to do list!
Hugs RDee
I am my an only daughter taking care of my mom who is 89 and actually doing pretty well. However, I have noticed that year by year things are slowing down. I also work 45 min away full time. She is german and stubborn. And I believe that she is in early stages of dementia. Relating to other caregivers -- I have to admit... i too have said you need to take care of you.... Let me apologize for that if I offended. But as a caregiver too -- I actually understand that one. It means remember who you are... even if it is for an hour... here or there. Take the bubble bath or read a book or play that game on the computer... or watch that movie. The other shoe will drop weather or not you are sitting there holding your breath. It is hard to admit that I count too. Another thing I have learned (that took me 4 years) is to stop fighting it. I cried for years about how my life had changed. I fought and fought and fought. Then I stopped. Life is much better. I adopted the saying... (which I borrowed from a country song) someday -- just not today. This gets me thru more than I realize. Now things that I don't like to hear is -- need to appreciate every moment. with your mom. She wont be here forever. She is soooo cute. Ya well -- she comes with a six pack if you want her for an afternoon! Laughs... that is about all I get. Then there is the "why don't you just.... " really? you think it is so simple? Then I relish the moment when they express frustration about what they are going thru. And all I can say is -- not so easy is it??? Then yes they all dissappear. Mom has a sharp tough on here.... that I have learned to blow most things off most of the time. However, there are those times, that I would rather poke my eye out. Last year -- I just bit the bullet and offered to pay for airline tickets for people to come in. Fortunately -- they did come but didn't take me up on the money offer. Ya know what I found? People were SCARED ... SCARED to be in my shoes. They didn't know what to do!!!! Oh none of them would ever admit it, but you can tell when you go thru the list of things to know before you leave for the day. Then there is the classic call from mom saying so and so is sick and we are at the clinic at the store can you come home and take them to the doctor?! It is hard to drop the pride and ask for help. Or even admit that you need it. But people don't get it. I am no longer above begging. Begging for my friends to come over... Bribing with alcohol works well. Offering to pay for airline tickets. What ever it takes. Can I afford it? Hell no... but I can not afford to loose my sanity either. I need a break occasionally -- even if it is just a dream of one. Really??? lIke 1 person over 60 isn't enough. Now I have to be strong enough for 2? My escape is the shower or walking the dog.... I know my life will change one day where those moments will be far and few between. I am done fighting it... just bring it on.... bring me the knowledge and the strength to get thru it. Give me the strength to not complain about it. I know others have it way way worse than me. It is you all that I applaud. Strength to all ....
Hugs to all you who left comments..... I have heard all these unthinking things too. Plus friends and family members who disappear, never call, never offer to help.
What truly galls me are those persons who are anxious to visit who had no interest in visiting when my Mom was more lucid and was told the day would come that she would lose cognition. Then only "visiting" to gawk and be able to gossip on how so unlike herself she now is. Also, my never present sister who comes in holidays only and briefly and questions why a sock is in the chair or band aids used to tape things to wall or why any other item is displaced. She can also show up at MD appts taking up needed space in exam room only so her co-workers get the impression she is hands on --- thats right she is a NURSE and has not spent more than 1 hr with her Mother (the one day of week she is forced to bring her home from the Adult Day Care - won't even stay to giver her dinner!). Ok thanks for the opportunity to vent. Comments from anyone who has the ability to come in and help out but only offers "comments" is frustrating & infuriating at best.
Hugs Teebabe
Hi anonymous, Thank you for sharing your story with the community. I'm sorry to hear about your difficult situation. If you have any questions you'd like answered, you can post them in our Ask & Answer section, here: ( http://www.caring.com/ask ). Take care -- Emily | Community Manager
Okay, I understand being a caregiver is extremely stressful, time consuming and times a thankless job. My husband is a stroke survivor. Although we count our blessings for what we have, the wedding vow "in sickness and in health" wow, it holds true. However, my mom has dementia still lives in her own home. Still owns her home. Both my brother and I have Durable POA. My brother lives w/ mom free/ and clear has been for well over 30 years. I have tried to divide my time between mom and my husband, only for my brother to find fault for everything I say and do. What he wants is sole management of mom's finances. Mom's accounts have always been joint with mom and myself. Mom knew who is the responsible one. My brother has done nothing but manipulate and badger the banks, doctors, everyone he comes in contact with, to not discuss any matter with me. My brother does not take care of mom. He provides care giving services which he benefits from their grocery shopping, meal preparation, laundry services. He even has the caregivers take mom to the doctors. I have tried courtesy calls, only to be told by the caregivers that they cannot discuss mom with me, I have attempted visits, only to arrive and my brother has removed her from the house, no one was home. Once visit he called the police saying I did not call first. My brother arranged for a credit card in both mom's name and his, which payment comes out of her pension and SS, for his entertainment. Why does mom have to pay for this? Now I ask all you caregivers, what exactly I am supposed to do? I have rights as DPOA, thou, I may not live with mom. My brother waves the flag of "established residency". He has changed the locks At this point I have backed away, as he continues to badger me for money. I am fearful of his badgering and fear for mom however, her doctor as reassured me, he would contact me if he felt there was physcial abuse. Mom has always expressed wishes to remain in her home. The lawyers advised me of conservator/ guardianship would be the next step. However, it would become nasty and 3rd party Ward would most likely be appointed. Thank you for letting me vent
I just posted this on my facebook page. It is very true. I am the youngest of 3 daughters and the one resonsible for my mom, i am her primary caregiver, and helping dad who is 83yo. My mom has alzheimers. People are always saying the same thing in this articial. I have tried to ask for help staying with them. they sometimes willstay during the day but never overnight if the sitter cant come in. I try to stay at home on fri, sat and suns because my 11 yo plays baseball and football-- i really enjoy this time!! It might be ugly to say but I like to be around normal people sometimes. I dont have to be their mom and housekeeper. Being my own son's mom is different--i love him and he is my son!! but now i am mothers mother. Others dont understand how it makes me feel. They still want me to do things on my wknds off and i refuse!! If i was really needed--I would be there for mom but not so other familymembers wouldnt have too. Sorry but this is a big problem with me. Didnt mean to be ugly
I can add several 1. "You should just fire her" regarding a person we feel is using undue influence to manipulate the elder (started as a housekeeper, has moved in full time and has free room and board plus $32/hr and magicly can afford a 2 week trip to Europe). 2. "give him a break, he's 70, 80, 90." So he can be as rude, insulting/obnoxious as he wants cause he's old. 3. "I want to be like him when I get that age" What you want to be a 90 year old jerk? Come spend some quality time with him, not just hi, how are you once a month.
The lines I hate: "If I were you, I would..." Yeah, you're not. And until you spend more than 5 minutes with her you have no idea. "She's mean/naggy/a pain." Yeah, we deal with that every day. All day. YOU get to go home. She's IN our home. Complaining about her isn't going to fix that. "If you had told us..." Yeah, we try that. We get blown off and ignored. "Well, HER mom..." MIL is not her mom. Yes, MIL's mom had dementia, but everyone's disease process is different. What worked for GMIL doesn't work for her. DH has tried, but oh, none of them listen long enough to notice.
My situation is a bit complicated. My husband is 83 and has been blind for 9 years. Prior to that he was an executive with a large company and very athletic. We traveled extensively. Losing his eyesight was quite an adjustment, one he never completely mastered. Then his hearing went. He has hearing aids but they are only minimally beneficial. About a year ago his memory became weaker and he became confused and began having difficulty following conversations. The Neurologist prescribed Aricept to try to stave off further decline. In January of this year I was diagnosed with colorectal cancer and had major surgery. While I was hospitalized and recovering at home he spent a month in an Assisted Living Facility. He was somewhat satisfied being there but the family noticed that his mobility and thinking skills were declining. Two days after we moved him home he had a TIA (mini stroke). I called 911 and he was taken to the hospital where many tests were given and he was kept overnight. Back home his anger became intolerable so two of our children and I made an appointment with his primary care doctor and now he is on 10 mg of Lexapro and 100 mg of Seroquel daily to stabilize his moods. He objected but the doctor told him the anger had to be controlled or he may end up in an assisted living facility permanently. For the most part his anger has subsided but he can easily flare up but his perseveration and cognitive skills are quite a problem. I now am dealing with blindness, extremely poor hearing, worried about his anger and agitation as well as the confusion and constant talking. This week I begin chemo treatment for my cancer. Two of our children live fairly near, one travels 5 days a week most weeks and the other is about an hour away with lots of her own obligations. They have been very good about helping me the past few months but I hate to impose any more than I have to. With my chemo treatment I may have to have someone come in to help but I’ll just have to see how bad the side effects are and how I feel and I’m not sure what I would have them do. Thank heavens for the medications but he has to have me with him 24/7 and I am tired. I just want time to myself! I can certainly sympathize with all of you. Caregiving is a tought, demanding job!!
Hugs Sopher's Mom, madmom, Janice Bird
I hear you on that one
Everyone here--BLESS YOU for all you do and for the inspiration and help you give to me. I agree with others--it is so aggravating when people say they don't have time, or we live too far (30 miles!) and then fill us in on their trips to Europe. We need to remember how valuable we are despite the insensitivity and selfishness of others. Peace.
I also hate that stupid comment, "You must take care of you," which is never accompanied by an offer of help or a practical suggestion as to how. I should do this impossible thing. It just seems like an insincere expression of concern. I do find it helpful when someone, usually a complete stranger learning of our situation, comments on how hard this is for me. Yes it is and it is nice to have that validated.
I've been the sole caregiver for my husband who's been chronically ill (cancer, renal failure, heart problems, back problems, etc., etc.) for the past 11 years. The comment I hear all the time (and that drives me nuts) is: "Oh, you need to take care of YOU!" What does that really mean? What I've learned is that it means something different for all of us. My well-intentioned friends mean it as "you need to get out with the girls" or "you need to enroll in a course of some kind to get out at night." I've learned that taking care of ME means having an hour or two alone listening to music or doing crossword puzzles so that I can have some quiet time ALONE.
Hugs RDee, kpat, #
From our son-in-law after my husband came home from 130 days in hospital and rehab. "You can rest when you're dead!"
Hugs Kathleen.j., Janice Bird
Well apart from my brother who justifies his complete lack of help with "my family comes first" (his children are in their twenties), the worst comment I've ever heard about my mother's Alzheimer's was "It's a blessing. They become just like children." Sure -- a child who's constantly lost, scared, and angry.
Yes careing.com is very helpful some of the information that I've received in the last few months has helped me emensley with careing for my mom. At times I feel like an only child I do have 1 brother who is 4 years younger than I am and I have one sister is is 11 months older than I am. Neither of them have seen mom in about 8 years and I 've asked my brother to come and see mom a couple of days and all he says is I don't have the time or I don't have the money. They'll probly won't even come home if anything happens to mom and I think it's a crying shame how two people can be so selfish. I've been with mom the last nineteen years and the last two have been really bad for her, who knows she could pass away tomarrow if you know what I'm trying to say. I had to leave my job 2 hours into my shift at the school and take mom to the hospital and sit there for 4 hours until the phyican forund out just what was wrong with her but those two wouldn't even do that if they were up here from the south. I'm doing the best I can for mom. Good luck to all the caregivers. Ithank you all for your kind words and support, if it wasn't for people like you all I don't know what I would do. God Bless You all and you all deserve a big HUG from me agin THANK YOU.....
Hugs DELORES8, Paula Spencer Scott, DebCHR
Caring.com is a great help. I am an only child (61) doing his best to help mom (89 years young). Decided years ago that mom would not be living with us and we value our precious relationship and need space. My wife is my rock. Mom has outlived most friends and she doesn't want to show weakness to those still alive. With mom, the filters are on most of the time and all I can do is say yes and try to do the next right thing. It's times like this that you get to know who your real friends are. You also realize that some people may mean well but are cluless and for others that strangling may be the emotion of the moment but is not an option.
Hugs Paula Spencer Scott
Am having a birthday celebration for hubby & invited his children directly. Haven't heard from son but daughter has already replied she is unavailable. 26 years of this so I am now officially done with her. Whatever their relationship I now realize I had nothing to do with it so I can now have a clear conscience with regards to her. Whatever my Dad might have or have not done I don't think I could have ever treated him the way she has treated my husband over the years & to think he was generous enough to adopt her. I am glad I will not be dealing with her again. What an ungrateful human.
Hugs RDee, Joy, donoharm
caring.com is a safe harbor when your life is tossed about and you feel helpless. Everyone here has the same concerns, fears, worries. Here you are not alone, you are not left high and dry to figure things out for yourself. Most importantly, people here understand what you're going through and never, ever judge you. This journey has no map, no compass. It is navigated by necessity, concern, and love. Bless each and every one of you. Caring.com is truly our "bridge over troubled waters..."
Hugs Paula Spencer Scott, donoharm
Texlas & Joy, Thank you for your concern. Several months ago, we actually did hire a sitter service to start, one day per week, until my parents could get used to them, so we would have a backup for emergencies. This was quite a big (not so pleasant) deal to my parents, but we had it all arranged. Then, the day the service started, the sitter came by only to quit. She claimed that the service did not understand that we needed someone just one day per week to start, but that was wrong, because the owner of the agency sat up the service. Well, that placed our tiny bit of progress back into the dark ages. However, I did find someone who could help us out, occasionally, the sister of an old friend is a retired nurse, and she offered to sit for us when needed. She could actually spend nights, several days at a time, if necessary. And my parents could afford to pay for occasional help. At first, my Dad thought it was a good idea, because he was having some unusual sensations the doctor believed were due to Dad's blood pressure being too low. However this was not the case, as Dad's blood pressure was in an average normal range, but the werid sensations went away, then Dad changed his mind and balked at having a sitter coming in occasionally. However, on my last caretaking trip, Mom felt really bad one day when Dad had a doctor's appointment, and I told Dad then, that I would start calling the sitter to come in on Mom's hair appointment days and days when one of them has an appointment, to give the other parent a break, and also to get them used to someone else, so we do have a backup when we need one. I didn't mention this in the letter because the topic was about things caretakers hate! lol Again, thanks for your concern! Caring.com is a wonderful, helpful place in this cold world.
My mom was at the adult day care non Thusday this week and I got a call at work that she wasn't feeling well so I had to sign outand go and pick her up. I called our doctor to see if I could get her in ASAP and they didn't have anything for about 3 hors later. I ended up taken her to the hospital and they did a battery of tests to find out what was going on. Well I finally asked the doctor to do a urian test and low and behold I was right on the make, she had a uriany tract infection. The symtons of the infection causes you to not eat,drink and be very nasty to the ones who love her. I got her to the hospital at 1pm and didn't leave until almost 5:30 pm. Just watch out for your loveones if they start acting mean and refusing to respond to anything you ask them PLEASE get them checked out for any courses that might be causing their behavior. It will save your sanity.
Hugs jessiejo
Debbie, Joy is right, You need to try and get your parents used to some outside help soon. It becomes more difficult as the disease progresses. I know that caregivers are terribly expensive. However, There are programs that can help with that. Also there are different organizations that offer these services, and you can have the opportunity in most cases to interview and screen helpers. Even with you able to be with your parents 24/7 at this time, that may not always be possible. If you can get them used to someone else, even for a few hours a week, It will help when you have emergency situations that may call for more than that, and you won't have to worry about depending on someone you know is not dependable. I know it is difficult to accept less than perfect care for our loved ones. If you start to address the problem as early as possible though, You should be able to find someone you trust and can depend on.
Debbie R: You have expressed yourself so well. Congratulations. Now, what I want for you is to know now that you can't continue to do it totally on your own. Bring a home care service into you home now for just four hours a week. This will get your parents used to someone and give you an opportunity to evaluate their love and care. Then when you do need extra hands, you already have someone to call on. Preplanning is key to relieving future stress when dealing with Alzheimer's. I know from hands on experience..
Yes, I'm slowly learning, after two years of caregiving, which I split with one of my sisters (we each live in other states and alternate months with our parents), that people make uneducated and, oftentimes, flip remarks. No one has made any false promises about helping us, so I can't complain about that. No one even pretends they'll help my sister and me! But that's actually okay, most of the time, because I have high expectations for my parents' care that no one (other than my caretaking sister or I) would/could achieve. My co-caretaking sister and I recently conversed about how we can't rely on help from anyone else, not even our other sister, who works out-of-town and stops by for a short visit on her way to fun weekend trips, etc. The ONE time I have EVER (very recently) asked her (the non-caretaking sister) to stay with my parents for only ONE day - so I could attend to a VERY serious problem with my stepson two states away that I was VERY UPSET about, she couldn't help me out because of a very important meeting she couldn't miss, although she had taken off the previous day to be with her dog who was ill... It's the most serious problem of my life, other than my parents' decline, and I was absolutely powerless to help someone I love dearly, who desperately needed my help. I do, now, harbor resentment toward her for being callous in my very great time of need... The stress of caring for my parents, keeping up two homes, in different states while working (I'm self-employed) - and my work has to be done when my parents are asleep, so there's is a serious sleep deficit - then another VERY SERIOUS problem stressing me out, put me over the edge during the past month. During that very stressful time - one week, in particular - I was literally either crying (silently )or on the verge of tears, 24/7. This is the second time during my caretaking that the stress has gotten almost beyond the point of coping with. That week I needed help which I did not receive. But I plodded-on and made it through that horrible week. but my attitude toward my sister is not the same as it was... Another thing that's been a problem with us - the supposed concern of people who don't actually demonstrate their concern. It upsets my Mom, the parent with AD, that certain people call and talk with us daughters, rather than with her - as though she's dead or unable to talk. At first, I didn't realize that this was upsetting Mom, because she always gets upset when I hand her the phone (I think because it's so difficult for her, mentally, to carry on a phone conversation). Now, when someone asks me how Mom is doing, I briefly update them, then say, "Here's Mom. She can tell you how she's doing better than I," then give the phone to Mom - or Dad - or both, depending on the call and/or who is nearest the phone. Although she doesn't remember talking with them and complains about people calling her on the phone, I believe it resonates, somewhere, because she doesn't seem as angry with that person, later, for not contacting her. The other thing I hate is when people ask, "Is your Mom better?" I always respond (in a tactful way) that Mom will never get better, that she will get worse, and IS getting much worse, very quickly. When I return, after being away for a month, Mom is always noticeably worse than when I was last there. Our big challenge used to be keeping Mom (who's always been hyperactive due to being bipolar and obsessive-compulsive) busy, but now we keep busy trying to explain very simple actions to her - like placing a pill in her hand, telling her to place it in her mouth and swallow it , along with water. These simple actions are very difficult for her to understand. She sometimes doesn't understand what to do with a toothbrush, and is unable to shower without help, etc. We're getting to the essentials, now, although she is still continent and able to carry on with toileting. Much of her conversation is now babble, so people need to enjoy her while they can, because Mom is quickly leaving us. I'm okay guys. It's nice just to vent frustrations here! I'm actually doing much better, now, and am taking steps to help me better cope with the stresses. It's unfortunate that so many major, very real, stresses are happening concurrently, but they are. I'm dealing with them on a first-come, first-served basis lol. Since my recent really, really, really bad week, I've been a much more blunt and assertive when it comes to my parents' needs and mine. Thanks, guys, for being my therapy! lol
Hugs Joy
I'm new to this Alzheimer's care business, although I cared for my mom for several years(just old age, no illness) and have been caring for an adult daughter with chronic pain and fibromyalgia for about 18 months. It's my 77 yr old husband just diagnosed with mild to moderate Alz.. My answer to those stupid questions people ask is a hard stare, no comment, just a stare that makes the person incomfortable. Some are still so stupid they don't get it and will just ask it again, so I walk away.
I send a huuuuuuuuuuuuuge hug to myself
Hugs The Caregiver's Voice, Joy
I like all the comments. The only one in my family that is helping mewith my mom who has had ALZ for the past two years is my neice she gives me respit time to go to my Diabetic classes on Wednesday nights. My brother and sister realy don't know what I going through they only call when they want something. As a matter of fact my brother is the only one that calls on moms b/d, christmas or Mothers day my sister on the other hand moved to Florida but has never called mom once. I'm with mom 24/7 really with only a 3 hour break so that I can go to work, shes in an adult daysite while i worfk the 3 hours. Good Luck to all the caregivers God will reward you in the end.
Oh emnbill, did you just want to smack him upside the head?!!! No one gets this who isn't in this situation...I often have people invite me to events and when I say I need a babysitter or let me see if I can find someone to watch Graminator while I step out, I get the response, "Oh, yeah, I forgot about that." FORGOT ABOUT THAT?! I've been doing this for SEVEN years!
Hugs DELORES8
My other disliked comment is "YOU ARE SO GOOD TO YOUR MOM. GOD HAS MANY WONDERFUL BLESSINGS FOR YOU IN HEAVEN." Wait a minute, are you telling me that I have to be dead before I get any blessings. And again I hold my words because I really want to say is, could you just bless me now with a folded load of laundry while Im still breathing.
Hugs RDee, supermom_53589
Prayers bosco2blessed
I know how hard it is to endure the unkind things our loved ones say. My mother cannot help it I know, but it hurts just the same. My Dad on the other hand, does know what he is doing. He blames my sister and I for the fact that Mom isn't home with him, and says things like "well I can't just forget about your mother like you have. This comment is so hard, I call mom almost daily, and Dad every single day. I try so hard to take care of whatever I can from this far away. Prescrip changes etc. calls to the doctor for info or so I can translate things so Dad understands. My pastor says, I need to do what I can and leave the rest to God, I tell myself this EVERY DAY. It doesn't always help, but most times it does.
Hugs Joy
Two of my 'favorite' comments people make are "Oh, I just can't believe she would ever say anything like that. She is so sweet and kind" and "You and your husband REALLY need to take a vacation you know". Seriously? After 2 1/2 years I hadn't figured that one out. Perhaps I should invite some of those people to stay with her for our vacation and then they could understand how she does in fact 'say things like that'!!! I'm really not as nasty as this sounds, just not a real good day.
Hugs Paula Spencer Scott
My wife, 65, is legally blind from a stroke and has late moderate/serious ALZ. She looks normal with no physical abnormalities from the stroke. Unless somebody talks with her it is hard to tell that there is anything wrong with her... at first anyway. She can't, however, read, write, sign her name, tell time, dress herself or feed herself, pour water or bathe by herself She needs someone with her 24/7 and I am it. She does OK when she talks on the phone with her family 600 miles away. They talk about things that happened 30 years ago. She remembers some things from that time in her life. Almost every time, they say "she seems fine to me" or "well, we are all getting older and I have a hard time remembering things too." My favorite is "if you all were closer to us up here we could watch her once in a while." Yep, all we need to do is sell the house, go through the hell of a long distance move of 600 miles and they could watch her 'once in a while'. God, my Alzheimer's support group and my "Angel" secretary are all that keep me from loosing it completely! And, on top of all of that, I am lonely. Like many of you, I have lost my best friend of 30 years. It SUCKS!
Hugs Paula Spencer Scott, JO C
I realized I couldn't expect support from my sister when I relayed to her how much more care Mom was requiring and how much time it takes. Her response: "It makes me really sad to hear you complaining about taking care of our mother." She is 1400 miles away and really cannot do much, but for some reason I thought I could talk to her and receive some encouragement.
Jo C Wow can I ever relate to this. Our relatives tell me I'm doing a great job and what would he do without me. Hire someone? we live in a small town 30 miles out. And in this small town where did all the people go? You would think ALs was contagious. It is a long and lonely journey that we didn't ask for but accepted with a contrite heart and hope and pray we can get it right. As for my life well someday??????? Bless you all. home-care
Hugs JO C
The comment I dislike the most is when someone says "I'LL PRAY FOR YOU" and then they walk off feeling all warm and fuzzy and Jesus is smiling on them thinking they have really showen up and I must feel so releaved when I really feel slapped in th e face . Knowing full well that by the time the knee is bent most like'ly the've forgotten. I hold my words because I so much want to say "Could you instead just grab a broom or a dust cloth and show a little of what Jesus really was trying to say."
Hugs Paula Spencer Scott, home-care, texlas, RDee, jessiejo
What I hate the most is my husband's relatives think he doesn't have Alzheimer's. Any symptom he has is something "other" than Alzheimer's. One is a nurse/physician's assistance, another is a doctor, and the last one is an engineer. All very educated with their mother and her two brothers all had Alzheimer's .... Most of the problem is that they see him maybe once in every five or ten years and barely call on his birthday or Christmas. They are also in control of a trust fund for him that they refuse to allow him have any access to until we are broke!
Hugs Paula Spencer Scott
My sister is indeed a saint. My three brothers and I all live out of the State our parents are in. My little sister bears the brunt of care for them both. My mother is in asst. liv. with alz late moderate. My dad is at home and trying his best to undermine the care we have set up for mom. He understandably wants her home. Unfortunately, My mother hits HARD and he is frail and unable to get out of her way. Still he wants her home. My sister has told my brothers all of this, and they all say Well Do The Best You Can, You Have our Support. And then they call me and try to second guess everything she does! I am not there, I have however spent long periods of time with my parents through this(to try and give sis a break) and I know that she is doing her level best every day. People, You need to give the primary caregiver your full support!
Hugs Paula Spencer Scott
Each caregiver is unique. I preferred being asked, "How are YOU doing?" After I vented a while, then I'd like a question or two about my father. Again, given the unique needs of each caregiver, when I called my friend (who took in a fellow caregiver after her husband died) A SAINT, she didn't much care for it because she explained it put pressure on her to live up to some very high standards. I can understand this...now. Still, between you and me--She is a SAINT!
Hugs DELORES8
How comforting that others share my problems. I have an 88 year old legally blind mother who is also almost completely deaf, but will not admit it. She lives with us, but another problem is that my husband has mild dementia AND I am trying to run a home-based business and look after the household as well. I receive lots of advice to get out more and to hire home help, but that takes money which I can't make without giving attention to my home-based business. A vicious circle that I can't seem to avoid.
I love it when my sister says "oh I have a lead on some help". In the beginning it really seemed that she was being proactive and was going to help me with some big decisions. I quickly realized that actions speak louder than words! There have yet to be many actions so what I have been doing is instead of expecting an equal in this journey - I ask for specific jobs - I am very specific. Can you take Mom to the store? is much easier than Can you handle this problem?
Hugs Paula Spencer Scott
To Grannylove. That happens in my facility as well. We pay over 6000 and they are asking for people to hire additional help. What's with this?????? Many are moving out. For obvious reasons, like retaliation, I will remain annymous.
Great article. One I always disliked was "How is Bob doing?" I needed at least one person to ask "How are you doing Joy?" When I mentioned that in a talk I gave where I live, everyone started coming up and asking! Do you know it surprised me so much I could hardly respond.. I had even forgotten that I had asked them! My surprise proves that no one every asks about us.
Hugs Paula Spencer Scott
My brother told me he was 'at capacity' and couldn't deal with my mother's problems right now. Aren't we all at capacity everyday?
I love the people who "really love" my mother-in-law. They rave on and on about her and how much they enjoy her, etc. YET, every time I have asked if they could watch her or sit for me, guess what the answer is? Aaargh! Don't offer, please, if you cannot follow through.
Hugs Paula Spencer Scott
Hey, Jo C! I know what you mean. Mom was in a nursing home (we were paying $6500 a month for it) and the social worker had the nerve to tell me he thought we needed to hire a sitter for her overnight as she had the tendency to try and get up (she was non-weight-bearing due to shattered heel and both bones in right arm broken). I told him that no, that was what we were paying them the big bucks for. The system is ridiculous. We brought her home as soon as we could and kept her home for almost 2 years before the AD got so bad. Found her a much better place for her to live now that she HAS to be in a home. Only 16 residents and 3-4 staff at all times. God is good!
Hugs Joy, JO C
i agred whith all the the coment that evribody whant to help but they dont know what you going tru .loking at my hisband that he whas such smart person ,work so hard in his life en now i have do everityng for him .my kid they try to help ,butthey have to whorki send albert 2 days to a day care for 5 haurs an dat help me to organice my self
Hugs joyceann65
A friend who recently offered to help with care arrived the morning of the day before to learn tasks. She then got Very! overwhelmed just by the first few hours of work, and subsequently said, 'Oh! I didn't know I had to come in the afternoon as well; I don't have time then! And, I thought you'd be back by then." (immediately after my commitment all day two hours away, with no break in between) She has, of course!! not offered to help at all since. I've been exhausted.
My sister tells me that she is there for me (only on the phone, no-less) and always comes back with the reply "Well, if you had told me...". She never offers her services to help me out with our mother, but in hindsight she tells me that she could have if I had asked on that particular day and time. Thanks alot!
Hugs jessiejo, joyceann65
One of my recent favorites "Call me if you need help!" Especially coming from a "close" relative knowing I care for 2 parents and going in for surgery myself in a few days! Um... of course I'm going to need help if I'm going to be out of commission for 10-14 days! Go figure.
Hugs teri in FL/NJ
Prayers Joy
Another saying that drives me nuts is "how is your mother?" Well she is worse than the day before but better than two days ago!!! Doesn't anyone recognize this is a terminal disease YOU DO NOT GET BETTER and the sooner the "others" recognize this fact the easier my days will be taking care of mom and my dad who really is the 24/7 caregiver.
Hugs Paula Spencer Scott, Norbel
They: "Hire someone to sit with your mom." Me: "Sitter's fee is $20/hr." They: "omg!" Dead Silence Be prepared to go it alone from start to end. I was and got thru 8 yrs with God's help. He will be there-when no one is.
Hugs /people/pamelalyn, Paula Spencer Scott, Val59, Cel
My brother-in-law quite innocently asked me recently "so, what do you do with yourself all day". I was so surprised as I have cared for my Mom with alzheimers and my brother with bi-polar for six years now. I thought that he knew better - frustrating
Hugs Paula Spencer Scott, Norbel