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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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I have my 80yr old mother living with me for the last 6 months. She was diganosed with AZH in 2006. The only way I could get her out of her home was to take her on vacation to Florida where it was warm and she was so excited. She wasn't eating and I got her meals on wheels but after awhile she wouldn't eat their food either. I knew she couldn't live by herself much longer, but she was so independent and wouldn't leave her home! My father died 3 yrs ago of cancer and my brother 5 yrs ago of cancer. I am all she has left. After getting to Florida in November 07, she looked at me and asked "who are you?" She doen't remember me or her grandchildren anymore. The hardest part if she wants to go home but she can't remember where her home is...she talks about her teachers and her paretns all the time. Repeats alot and starting to be mean and hostile. I know I have to start looking for a home for her, the doctor said she needs structure and don't try and correct her. Make her comfortable...it just breaks my heart that she doesn't know me anymore. I took her out for Mother's Day to lunch and while eating she asked me where my mother was(?) I cried inside.
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.
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