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Alzheimer's
With Mayo Clinic health education outreach coordinator Angela Lunde
Facing difficult times
From time to time I receive updates from families on their journey with Alzheimer's. What follows is a letter I received from a caregiving wife during a difficult period. This piece may feel uncomfortable to read; however, the writer's open and sincere words remind us all that we are not alone.
I am sending the latest progress report with a very heavy heart. My husband Rob is having catastrophic outbursts every time I try to bathe him. This happens in the morning when I get him dressed, and it happens in the evening but less often. At the present time, I have morning help from a strong gentle male nursing student along with the staff at day care he attends. But even with three of us, it is almost impossible to get him into the shower.
I am learning not to push Rob to do anything he doesn't want to do. I let him sleep in the mornings and I sponge him off rather than using the shower. He sleeps in his clothes at night or spends the day in his pajamas. In every other instance he is his calm, gentle self but when someone tries to change his clothes he can become like a caged animal, wild-eyed and ferocious.
He has dreams or hallucinations at night. It appears like he is talking to someone in the room. Rob does not seem upset by this presence and sometimes he wakes up laughing.
I am way past tired and I'm a little scared. I realize the time has come for Rob to be moved to the Alzheimer's Unit. In a way, it is a relief to come to this realization because I never knew how I could make the decision. But now, even with help, I can no longer care for him at home.
I was shocked today to get a call that there is a space for Rob and he can move to the Alzheimer's Unit on FRIDAY. As you can imagine we are feeling all sorts of mixed emotions! Of course, I am feeling deep sadness and regret. However, I do know that I did the best I could ... and so did Rob!
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My husband's mother has ALZ and is still in her home and a friend looks in on her occasionally during the day.My husband works long hours at his job so he doesn't get to help out much.I WAS helping a lot but someone called the State and reported that she wasn't getting the care she needed but at the time, she was, Anyway,my husbands sis came from Arizona and was very mad that the state was called in. She accused me of doing it and called me a "liar" when I said I didn't do it. She is a very vindictive person. She has POA,etc. over her and we can't do anything about it.Over the past 5 years she has had 2 broken hips,broken pelvis,and a broken arm from falls at home when by herself but my sister in law won't put her in a care facility and she really needs 24/7 care.Someone always has to be there to make sure she eats and takes her meds,etc. She hardly remembers anyone.She has a Lifeline necklace but doesn't know how to use it. According to my sister in law,it is just cause her mom is 89 years old and that is why she can't remember. The Dr's diagnosis was Alz but she can't accept that.She told me that the Dr. told her I had turned the case into the state. Why would I do that when I was caring for her? Now I only take her to her Dr. appointments and that is all. My sister in law can pay someone to care for her. I am afraid if something happened, it would be my fault and I don't want the blame put on me.I love my mother in law.I just don't want to be called a liar anymor
For "Susan of March 27 post" - Has anyone addressed your concern? I don't see a posted comment here. Yes, in my research on Alz. all personality changes you have listed are quite common in the disease. Both of my parents have Alz. and have gone/are going through this. I took them on a vacation to see family members across the country and ended up at my house to "visit" me too, where they now live. I did not tell them they were going to live with me because it was the only way to get them out of their house. Yes it was deceitful, but I do have POA and I am RP for their SS -- which I have done legally and with their permission. So sneaking them to my home to care for them properly doesn't make me feel bad. Invite her to your home for a visit and just don't take her home. You'll fight for a while and she will be ugly...you have to decide how much you are willing to put up with. You can also go to court you know and become her legal guardian, if you live in the same town. Sometimes we have to take legal action against our parents in order to keep them safe against themselves. Do what you know is right for her...not what she says is right just because she is 87.
Both of my parents have Alz. My father is at stage 7, mother is about 5. My DEAR husband care for both of them while I still work. Father is 77, mother is 74. Father doesn't like to bathe but will if mother will wash him but the doc told us this is too dangerous. We know Dad should go to a nursing home but Mother argues this vehemently. the other day at the doc's ofc, Dad misunderstood a conversation and thought we were leaving him there (he thought it was a nursing home) so in protest he started to undress - he was outraged to be left, so he thought. He has a TERRIBLE temper...is the solution to sedate when we put him in a nursing home? That is so unfair to him. Suggestions?
My 87 year old mother who has recently been diagnosed with alzheimer's has become mean and combative and is convinced that my brother & I have some kind of conspiracy against her. We are trying to let her remain in her house of 60 years as long as is safe for her because she lives alone & refuses to allow any type of caregiver assistance other than my brother or myself. She lashes out constantly and goes into little tantrums then like a child & then will sit by the window looking outside for hours, would not join us at the dining table for Easter dinner etc. Is it best to handle these emotions by letting her just do as she pleases while being abusive to others around her? My sister-in-law has recently refused to be surrounded by my Mom's explosive behavior & does not want to be around her when (almost half the time) Mom is acting out. I have not read or heard anything like this behavior from other people,what is the best way to handle a parent who is abusive to her family? We want her to be happy for as long as she can but it is getting impossible to satisfy her on any level. She won't allow anyone into her home to help her, she won't eat healthy meals & eats mostly cakes, pies, sweets and when I take her to the grocery she will not buy much of anything else. She will throw a tantrum in the grocery store if I try to get her to buy something other than a TV dinner or her sweets, saying she is an old lady now & can do whatever she wantsd.This is such a s
I am bringing my husband home again. He is now on hospice and I want to be with him, I do not want a stranger calling me to tell me my husband has died. He has had Alzheimer's since April, 1999 and these past two years have been the most difficult for him and our family. Our oldest daughter is so angry with me because I am bringing him home. What she doesn't understand is that I cannot afford to keep him where he is. But most of all I want to keep a promise we made to each other over 48 years ago--that we would be there for each other which ever one of us went first. I have arranged to have help 3 to 4 days a week. This is the most difficult time for our whole family. My daughter is asking her siblings to take sides and it is putting a lot of pressure on the family. Alzheimer's is indeed a devastating illness. Just want to do what I feel in my heart is right for my husband. Hospice will come to our home and continue their care.
Needing advice-just found this website
Caregiver for my granny for the last 4 years. Also have 24/7 caregivers. My granny is losing her ability to walk-it's like her mind won't allow it, and then 10 minutes later, the ability is back. Swallowing is the same way. She is unable to care for herself in any way now-recently she was dismissed from the hospital after a 5 day stay and I was told she was in stage 5 of 7. She is 83 years old and I just don't know what to do next. We live in a small town and she has been able to live in her own home with caregivers, but her care is beyond us now. When does hospice become a choice? I don't want to do a nursing home because she doesn't function well mentally when she is away from her home. Help!! What do I do now to keep her safe, but also maintain her dignity and wishes?
It has been truly a blessing reading the posts from everyone. My Father who will be 89 this year has Alzheimer's, late stage. It has progressed fairly quickly but then again, I think he hid it well until he no longer could last year. We have two wonderful caregiver's who split their time for 24/7 care. My Father is now bedridden as of 12.26.07. He is incontinent and has those scary or comforting hallucinations and people visiting him for three months now at nite. He recently has become very agitated, combative and angry and he doesn't make any sense anymore in his communication. I don't think he understands us much anymore either. He doesnt'sleep well. He was "here" with us last month sometimes but since that time, he has been leaving us more each day. My husband and I visited him the other day and he had no acknowledgement of either of us. I was just told it is nearly time for hospice to come in. It will help my 87 yr old Mom during the transition coming up...me too. So
I read this story and this what's going on with my dad for the last two years. This is like our nights go. Mom and I can't hand'e this anymore, so this is time for Dementia Unit. It wasn't the way we wanted, but it's not safe anymore. Lewy Bodies type of dementia leaves no choise.
My husband, 88, has been a victim of what they assume is Alz. for 14 years. He was NEVER deranged. Would go months without saying a word and then come out with a very appropriate comment.
He is under Hospice care now but survives every crisis.
I HAVE ONE VERY IMPORTANT COMMENT. I KNOW THE RECOMMENDATION IS TO TELL THE PATIENT WHEN ALZ. IS DIAGNOSED. I AM NOT AT ALL SURE THIS IS THE KIND THING TO DO. I HAVE WATCHED SEVERAL PEOPLE JUST GO ALL TO PIECES WHEN TOLD AS THEY HAD SEEN THE CONDITION OF THOSE WHOSE CASE WAS FURTHER ADVANCED. Anyone who visits an Alz unit in a nursing home and sees the misery and condition of those pitiful victims would rather die. I AM SPEAKING FROM YEARS OF EXPERIENCE AND OBSERVATION. A friend cried for days when told. My mate would say "I don't have that bad thing." And we
would spare him the facts. Ginnie S.
MY DEEPEST SYPATHYES TO YOU IN REGARDS TO YOUR HUSBAND.
I AM TRYING TO EDUCATE MYSELF ABOUT THID DEVASTATING ILLNESS
EVEN THOUGH NO ONE IN MY FAMILY IS AFFLICTED. I FEEL THAT IT IS IMPORTANT THAT PEOPLE LEARN ABOUT IT REGADLESS IF A FAMILY MEMBER OR FRIEND HAS THE ILLNESS OR NOT.I KNOW YOU DID EVRYTHING IN YOUR POWER TO CARE FOR YOUR HUSBAND. IT MUST HAVE BEEN HARD TO SEE HIM GO TO AN ELZTIMER UNIT. BUT REMEMBER IT HAD GOTTEN SO YOU WERE NO LONGER ABLE TO CARE FOR HIM AT HOME.AGIAN I WISH TO EXTEND MY CONDOLENCES TO YOU.CHRISTYH
My husband was diagnosed with alzheimers in 2000, I kept him at home until 2005 , when he fell and broke his hip and the
VA doctor wouldn't recommend that he go home again, the sleep deprivation I had was the worse of the taking care of him at home....He is in a nursing center and at times I question whether he really has alzheimers, he seems so with it and other times I know there is something wrong...How do you ever get to the point where you don't feel guilt for putting your loved one in a nursing center.even though you can no longer take care of them?, I guess we live with whatever decision we make....this is the hardest decision I have ever made in my life, even though I visit him every day.
My father has alz and my mother takes care of his needs most of the time. Recently, my mom got sick and had to be hospitalized. I took time off work and drove to their home several hours away. Dad got very angry with me telling me I was trying to take over the control of his home. He has dillusions and is very difficult to handle. He is violant and angr a lot of the time even with my mother. How do I know when it is the time to get additional help? He is very proud, and is always telling us how smart he is. This is so hard.
My husband has been in a memory care facility for 5 weeks and although I feel guilty for not being able to care for him he is much better off. Once I had made the decision, which was very difficult for me, two of our grown adult children objected. Three of the adult children were okay with my decision because I was really tired from the constant care. My heart was more broken by the kids than by the taking of my husband to the care facility. I go every day that I can and he does not really know who I am but he likes me. He has never been a fighter and he does let them bathe him. So I think we are on the right road and when we have another boulder to jump, hopefully we will be ready. My husband told me early on when first diagnosed that I was not to care for him when the time came to put him in a care facility. I think that made it easier for me. Always the considerate man.
www.alz.org Lots of information, 24 hour help line, local resources and support group information.
Thanks for sharing your stories. You are all helping others!
I think the most difficult times were when I saw that my father had lost, yet, another of his perfectly done skills. Each time it was a kick in my chest and I was feeling down for a few days, then I got accustomed to the revised way of helping him. The first time he cried about his inability to turn on a bathroom faucet broke my heart. Just writing it triggers that very keen moment. I took him into his room, sat him down, and we talked freely about the inevitable...and how lucky he was that G-d was taking him back from where he came from, and so gently...without physical pain, just the pain of his pride. So that is how it was over the four years that I had him with me. It was quite a 5 year ride for me, stressful, inconvenient, limiting, yet I wouldn't trade those years for anything different. I was a good daughter. I kept my promise to him that I wouldn't put him in a nursing home. Our senses of humor got us both through this final passage. He was 94; my daddy is deeply missed.
Wow I totally relate to each and every post. My Mom is 87 and in the late 6 or early 7 stage. She can walk a little but needs assistance in going to/from the bathroom and each day has become a struggle. She is living with me, her baby, and my husband in Mass. I have 2 brothers and a sister who all live in Alabama(siblings are all at least 12 years older). I am now faced with making a decision of taking her to Alabama to a Nursing home or taking a leave of absence from my job and risking her dying here. I know the facility there is wonderful, matter of fact my Mom worked there for 15 years and it is an awesome place however, it is still the Nursing home and I promised her that she'd never have to go. I know that when I take her I will feel such guilt but I don't know what else to do. I am the one she looks for, asks for and I just pray for the strenght to do the right thing. Janet
I can totally sympathize with each one who is a caregiver of someone with any type of dementia. My brother and I were the caregivers for mother until he died suddenly from a massive heart attack almost two years ago. I had mother in my home most of the time, but my brother would relieve me by taking her to his home for a week or more at a time. My brother was truly my best friend. Then he got sick and died. I miss him so much. Mother fell and had a traumatic brain injury about a week after my brother died. She never fully recovered from that injury and has been in nursing center since March 2006. She and I both are blessed by the fact that she is always smiling and giggling about everything. My husband and I go to see her every day, and feed her evening meal as she can no longer feed herself. She eats great and always seems happy. She can't communicate with us and we aren't sure she even knows us now, but she gets so excited when we get there so maybe she does know us.
It has now been three weeks since I have taken my husband of 50 years to a care facility. I think it is a good thing I have done. He seems to be better satisfied in his world and in not having to keep up in the world as we knew it. I miss him so much but I can see that he is better where it is quite and activities are scheduled. He has no trouble with letting them bathe him and help him with whatever he needs done. I am so grateful to have found such a wonderful place.
Nan
I am a friend to a family with a family member with Alzheimers. Since I have much experience in the
field of caregiving, the daughter asked me
to move into the home and
provide 24/7 care for her mother. She is unable to be with her mother because she has a
husband. I have been here for about a year and a half, and things seem to be going alittle differently than I was first
promised. I am relied more and more on for all the care. Her daughter visits once a week for about two
hours. The mother has one son who lives about 1700 miles from here, so he can't help either. I am being paid room and board, and a stipend out of which
I must pay my own taxes, as they said I am
selfemployed. They have long term care insurance for their mother, but have chosen not to use it, because it would require running this home like a business.
I got nothing in writing, and I don't want to let this lady down as she is dear
to me, but I don't know how to get any help. Suggestions?
My Dad passed away from cancer two years ago, and a few months after my Mum was diagnosed with alzheimers. It was like losing both of them at once. My sister and I both have small children and did our best to keep her at home, but eventually put her into a lovely resthome. I must admit, I did feel very guilty about it at first, but now when we go to see her, we have a wonderful time. We take her out to lunch, go shopping to just sit and talk about the old times. When she was at home, most of our time was spent cooking, cleaning, shopping, and running errands. We get to have much more quality time with her which is good for everyone involved.
D. Cooper, I can relate to your situation. It's so hard when family members won't help. My mom has alzheimer's and my Dad does his best with her--she is urinary incontinent and wears diapers but he still takes her out to restaurants and outings. I can see how tired he gets with her moods and hygiene. I help them a couple times a week and I have a husband and son who is 4. My mother's sister lives 5 min. away but will not see her alone as I requested. I thought she could provide a little companionship to my mom, but she only sees her in a group dynamic or with their husbands. This enrages me. My aunt and I are now estranged. I never expected her to do caregiving. I only thought she could sit with Mom and look at pictures or tv. once in a while. What do I do with the rage towards my aunt? My husband has forbade me from talking about her because it is destroying me. I just don't understand this supposadly loving sister not visiting my mom. It sickens me as much as this diseas
My Dad is gone and my Mom has been dianosed with A;zheimer's Disease. My sister who lives in the same town as my mom has moved in with Mom. While my sister was asleep, Mom managed to leave her house and the neighbors found her at 5 AM in her backyard, barefooted, in her PJ's, with an arm load of clothes trying to "GO HOME". Thanks to my sister's husband, we have a device set up to catch Mom leaving her room at night. Mom has good days now that she is on medication but the doctor said that she has had this disease for at least 5 years. How long do you think it will be before we have to put her into a care facility and how long can we expect to keep her on earth? We are concerned about her future and need to know how to provide for her. How much does a care unit cost? Just trying to be prepared. Thanks.
I have been a caregiver for 9 years and just two weeks ago I put the love of my life in a Memory Unit. It is a wonderful place in Bentonville, Arkansas where they have a unit for 10 persons.
I was exhausted with the care and the nightly interuption of sleep and could no longer do the duty it took.
I feel at times,guilty and at other times great relief. I go everyday and now that I am away from him I can see how he is and really do not know how I did it for as long as I did.
I still cry when I see a friend and have to explain why he is not with me. I am sleeping better at night now and hopefully soon will be back as my old self.
God gives us paths to walk and sometimes we have stones to work around. God has walked the walk with me and for that I am grateful.
Nan
A friend directed me to this site to see that I am not alone watching the ravages of this disease. My father has Alzheimers and my mother passed away from cancer 2 years ago. My father is in a care facility and we are experiencing similar bathing issues. The staff have even enlisted my help to try to bathe Dad and he gets so agitated when we try that I walk away in tears. I appreciate the suggestions that Sophia has noted about the distractions and will pass them on to the staff. However they will only work I suspect if they can even get him into the bathing room. Dad regularily sleeps in his clothes and won't sleep in his bed, but spends all day in his recliner beside the bed. He is developing sores on his legs and blisters because he won't elevate his feet and we can't get him walking. What a horrible disease this is to watch, robbing our family of the person that we knew and loved.
Not wanting to bathe is very common. They are scared that someone is suddenly undressing them and they don't know why. They don't know what bathing means. They don't know what to do. How would you feel if someone just started taking off your clothes? Explain what's going to happen before you start the bathing procedures. Make sure they're not cold. If they still object, they will often be cooperative with a home aide that can come in to help with bathing. Sponge bath them while they are dressing or undressing on their own. Give them a book, pictures, or other distractions while you're cleaning them. Play music and make a game of it. I wish my Dad was still in that stage. Now he doesn't know anyone, can't understand much of anything, and verbal communication is almost gone. A good day is getting him to smile. Just remember, even when they can't understand what's being said, they know how it's being said.
We are all in the same boat, wondering if we did the right thing. My husband (72)was diaganosed with AZ 8-7-07 and we had to admit him on 10-5-07. That is how fast he has progresed. (we had noticed some changes the past 3 years) He has sundowners, and for his safety and mine it was the only answer. Our children are all suportive and visit as ofen as they can. He is doing so much better, as he has adjusted and feels he is at home most of the time, although the last few days he has mentioned he that he may not recognize our home, I just say that he will, as he could never forget that, and he is ok. I see him everyday, and he has many peole that visit him. No one can believe how fast this has gone. We wonder if he is living a nighmare or we are!! This truly is the most devasting desease ever. God bless all the caregivers and their families, and especially those at the AZ unit he is in, they are wonderful. Don't be afraid to admit your loved one to a AZ unit, it is the only answer!
Medicare's research site:
http://www.medicare.gov/Nursing/Overview.asp
I feel for you. You never want a loved one to feel "thrown away". Relatives saw what the situation had done to me and worried about both my mother and my physical & mental health. Mom was at a point where I (not having a medical degree) was not equipped to give her the care she needed & deserved. In fact, I could do both of us justice by placing her in a loving, safe,better-equipped facility. My mom no longer understood where she was or how long she had been there. The decision came when mom started to fall, for no apparent reason. We were petrified of her breaking a hip. We moved her in Feb. 07. After several months, she looked/acted better than she had in years. She seems to thrive with the medical attention, social stimulation & structured environment. Since there are others "like her", she seems less frustrated in general. Two tips: do research and choose a facility close to home. Sometimes strength lies in knowing when to get help. Visit http://www.
My Dad has entered an agitated state with this disease. He does not want anyone to change his clothes or his diapers and he is now hallucinating most of the time. He was in a nursing home for about 6 months and received really poor care so we brought him home. He did pretty well at home for about a year, but now he has entered a real difficult stage. My mom has 24 hour help, but is still stressed out and depressed most of the time. I feel so bad for both of my parents. First for my Dad, who was a wonderful person and full of life before this disease and for my mom who is trying to hold things together the best that she can. It has been 3 years since the diagnosis of this disease.
My father is at this stage, but my mom refuses to look elsewhere for help. She is afraid that if she lets someone other than family help that she has failed my dad. She says that she doesn't want to feel guilty for not doing all that she can. My mom has 5 children and I am the only one that helps. I spend every day off that I have from work with her helping as much as I can, but it is taking its toll on me as well. I have 2 small children that I only see shortly each day and a house that is not being tended to, but I know that If I don't help my mom, no one else will. She is so tired and stressed. Sometimes I feel that I am really there more for her than my dad. She believes that if she "puts" my dad somewhere that it means she is giving up on him.
I see myself in this letter. I too expearienced the same frustration with my wife. Moving her to a nursing facility has been a God Send. She now prospers in the love of those attending and I now have peace of mind and know that she loves me and enjoys my daily visits.
Trying to decide when it is time to pass the torch is truly a heart wrenching dilemma for us caregivers. Sometimes we just have to let a higher power determine for us when the time is right.
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