Valentine's Day, wife has Alzheimer's

WFMartin

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I am lonesome this Valentine's Day, as my wife of 62 years has been diagnosed with Alzheimer's, and is now in a memory care center, not far from my home. Interestingly enough, she still knows who each of our family members are, and in fact, I am her main "trigger" for her bad behavior. She takes it out on me when I try to visit her, because, of course, "I put her there!" This is not the happiest time of my life. I took her a Valentine card, and a heart-shaped box of chocolates yesterday, but did not go in to see her, primarily because I did not want to upset her.

I'd be glad to hear from anyone else on this site who has managed to deal with a loved one with dementia. I have joined a telephone Alzheimer's Support Group that is located in Sun City, AZ.
 
I'm so sorry to hear that Bill. I had to take guardianship of an elderly aunt with Alzheimer's back in '98. She lived until '01. If it is any comfort to you, after the anger stage, many times they become quite docile. My aunt had a very rough childhood because her mother blamed her with health problems, due to a difficult birth. But we were able to give her a happy childhood on this end of her life. She was very happy. She had never had children but adored babies so I bought her a doll that talked, that she could care for and she just had a lovely time until very close to the end. I wish you all the best and remember that her attitude is not your fault, nor is it her fault. It is not really her, it is the disease.
 
Well, you've ALREADY given me a glimmer of hope. I thought that the rage, and anger stage usually come in the later stages of Alzheimer's. The possibility that she may actually become more docile as the years go on offers me some degree of hope. I realize that each case of Alzheimer's is different, though.
 
My partner has experience caring for people with Alzheimer's, not solely, but I shall ask her if she has any insights that might be helpful. I wonder if shared familiar music would help in alleviating the anger.
 
I am an ex-musician, and my wife used to accompany me to many gigs. She helped me with my equipment, but did not truly appreciate much of my music. Country music, and bluegrass were my venue. My wife appreciated the 50's music more than anything I usually played, although she used to enjoy one band with whom I used to "sub".....who played country, as well as some 50's rock.
 
I am lonesome this Valentine's Day, as my wife of 62 years has been diagnosed with Alzheimer's, and is now in a memory care center, not far from my home.

I feel for you William. :cry:

Interestingly enough, she still knows who each of our family members are, and in fact, I am her main "trigger" for her bad behavior. She takes it out on me when I try to visit her, because, of course, "I put her there!"

I have a close family member who suffers from Schizophrenia. When she has one of her episodes she also becomes incredibly hostile to those she is closest with: her husband and her mother. It seems this is quite common with forms of mental illness. I suspect my former studio partner who developed dementia as a result of Parkinson's was most hostile toward me because I was his closest friend for a long time.

This is not the happiest time of my life. I took her a Valentine card, and a heart-shaped box of chocolates yesterday, but did not go in to see her, primarily because I did not want to upset her.

I'd be glad to hear from anyone else on this site who has managed to deal with a loved one with dementia. I have joined a telephone Alzheimer's Support Group that is located in Sun City, AZ.


I cannot speak to Alzheimer's. Schizophrenia and Parkinson's are both different diseases. With proper medication, therapy, and family support my family member with Schizophrenia has not suffered any psychotic episodes for quite some time. My studio mate has periods when he is quite lucid but then without notice, something may trigger his dementia.

I'm glad to hear you have joined a support group. Hearing from others who are dealing with the disease as well as from medical professionals is essential.
 
Bill, I am so sorry you are going through this. I first want to tell you that schizophrenia is not at all the same as any type of dementia, as it has to do with receptors and is not a vascular, or brain shrinkage type of issue with the brain. Any type of aggression, hallucinations, or paranoia is different.

That being said, my mother suffered from extreme bipolar disorder during her lifetime and had some bit of schizophrenia (schizo-effective disorder) that accompanied it, but it was very much more under control as the new meds were invented towards her later years.

Then, at about 71, she got Lewy Body Dementia, which is like Parkinson's and Alzheimer's all-in-one. She did initially go through some fear and anger, but unbelievably became one of the nicest people ever to deal with and it was actually a healing experience to take care of her first hand.

She was mostly angry when she was in a rehab facility at first (because she had a horrible fall), but then we took her to by brother's house and I was there with her every day, along with a nurse's aid, and we did have my sister-in-law's mom for a little while. We had some help, so don't blame yourself for having her in a facility. Most importantly, you have to take good care of yourself before you can take care of her. I learned that the hard way.

She forgot who we all were eventually, and it was most hard on my brother. He became despondent and didn't see the point in talking with her anymore--and I will tell you this, no matter whether she remembers you or not, fondly or not, she will always know basic things like love. This does not go away. She will always respond to your love and caring, even if she seems mad at you for now.

My mom was...no offense to the dead, but not a great mom or person during her life, but a wonderful human underneath it all, and that showed up in the end. She was super appreciative our being cared for. Even in the late stages when she could no longer feed herself, or hardly speak, she always could say, "I love you too," when you told her you loved her. You could always hold her hand and she'd grab it back and show love.

Sometimes I think maybe we are not our memories, but we are just living in the present moment because there is no past or present. Memories are for other's. We get upset when we are forgotten, but we can learn from a person with dementia that love is all that matters.

I recommend looking into Memory Bridge Foundation in Chicago. They might have some literature about spending time with people with Alzheimer's and connecting in new ways through art and music, which you can do both with her. You can make her paintings that might help her connect things she was fond of in general ways that can help her overall happiness. This is just a suggestion.

I bought my mom a Goya painting of dancers for over her bed and it helped her because she was a dancer when she was younger. She'd stare at it and it made her peaceful.

I wish you the very best and patience during this time. I have the utmost compassion for you. You are in my heart and my thoughts, Bill.
 
Arty.....I read your very nice, and helpful comments,...and tears ran down my cheeks. You mentioned some very important concepts, I believe, and I will try my best to accomplish as many of them as possible. Thank you!
 
Dear WF,
I carefully read your post and really feel for you. I just lost an old friend who was 90 and suffered from dementia in the last few years. He was a music man, a western music musician. He didn’t play gigs but had a an antique store most of his life where he played music every day for anyone . Many musicians came by to play for fun. He encouraged everyone to play and sing along. Always said that he had never met a stranger and never let anyone go hungry. We used to have a lot of fun. We travelled to North Carolina and Virginia years ago.
In the last 15 years , he had changed a lot, had become suspicious of everyone and was often angry, had three operations and slowly lost his store and his mobility. Since he lived in the building where I live, I took care of him . His two sons would see him once a year. I knew everything about his life as a child, a rodeo man and a Marlboro cowboy in magazines. He went from being very proud and independent driving big pickup trucks to driving an electric scooter which is still parked in the garage. His family had deserted him for reasons that would take too long to tell.
I did everything for him, cooked, washed, took him to his doctors appointment. He was in and out of hospitals for the last 15 years. Called 20 times a day not remembering what time it was. I know how difficult it is to see someone you loved losing their mind and freedom. He died January 31 st. I was with him all day. What made a difference was that I played music and sang all day. I placed my phone on his chest and played his favorite music. He went from being delirious and agitated to being really calm. He left 5 minutes after I left his room. All I can say is that love is never lost. His very last words were I love all of you or should I say luv y’all
When the panic settles , love remains, the good that was done stays. The ego tries to survive and in the process it becomes a sad interpreter of who is in there, sometimes a cruel one.
The first person you need to help is yourself . Save some time for yourself and then you can help. She will get it or parts of it. Next thing you know you’ll have a song to sing. Don’t be too hard on yourself. I’ll be thinking of you.
 
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TL/DR Every case has a different schedule and different problems. It is a progressive decline. There are no ups or recovery. It is difficult to care for someone close. Hell it is difficult to care for anyone with dementia.

My experience: Long

I don't know if it was Alzheimer or just some other form of degenerative dementia that my wife suffered from. Never did have full medical diagnoses. It was her sister that spotted it and got her tested. I was shocked as I was present while she was assessed. My wife took the Montreal Cognitive Assessment short form. 10 questions with one drawing exercise: a pair of linked pentagons. She could not draw one pentagon.

BTW: this form of dementia is inherited. My wifes mother, aunts, one uncle, and her grandfather all suffered from it. Her sister and my youngest step-son are scared shitless about it. So much so that they refuse to discuss it. Wouldn’t visit my wife during her decline of several years. Only putting in an appearance on the day of her death.

There is/was in England all manner of local support and some government support. I tried several day care facilities, but it always ended in tears. She was afraid that I was trying to put her away. I eventually found out that I had “a right to work” and the state would pay for her care while I was at work.

I got a carer Monday-Friday while at work. This helped a great deal as it gave me a break from my wife. Sad to say but it can become overwhelming. Once a month, I would pick up the carer on Saturday and pay her to look after Enid while I took a break and did some uber nerdy things.

On progressive dementia. It’s all downhill. It never gets better. Some drugs will slow the progression but none will stop it. Thankfully my wife never lost control of her bowels and bladder. I knew it was time to get help when the police brought Enid home from the town centre shopping complex. It’s only a 5 minute walk and early in this disease she was able to walk over to it.

Getting lost 5 minutes walk from home was the first shrinkage of her world. Yes, the world in which they live grows smaller and smaller. Enid’s world eventually ended one house to the left or right of ours. She would walk up and down the pavement but no further.

As their world shrinks, the senses shrink.

Eyesight: It can be difficult for them to perceive the difference between a step down and the edge of a carpet. I’ve seem Enid probe the wood floor beyond the edge of the carpet with her toe, feeling for what may be a step down.

Smell and Taste: I speech therapist, which could help Enid, did give me a helpful tip. Always have a dessert handy. If you loved one will not eat the meal, they may eat dessert.

Cognitive prosecution: Enid one spent ¾ of a hour, standing next to me, talking to the lady in the mirror and explaining in great detail that I was her husband. Shortly thereafter she took an extreme dislike to “the woman in the mirror”. This resulted in having to remove all mirrors from the house.

Progression: It varies from case to case. Enid “discovered” something was wrong. I scared her and it angered her. Thankfully this lasted only about 3 months. About this time the police brought her home from the shopping centre. I got a more formal assessment. Financial help was made available. A carer was paid for M-F for 8 hours a day. Although Enid could dress herself and get ready for bed, her personal hygiene left something to be desired. The carer saw to it that she regularly bathed and had her hair washed. About this time, household things began to disappear. I found the pizza pan in the nextdoor’s hedge. The carer informed me that Enid didn’t have any clothes. Her sister, thankfully, helped out with the clothing.

I miss her now that she is gone, but I also remember how difficult the last 2-3 years of her life was to myself and the family.

Ask if you have any questions.
 
Claude, thank you so much for sharing your experiences, and awareness that you had of your wife's condition. I am so sorry that such a a tragedy has crept into both of our lives. Y'know, I have a good fishin' friend whose wife died very suddenly of a heart condition several years ago. He felt so bad, and we felt bad for him and his daughter as well, having lost his wife, and her mom in such a manner.

But just recently I called both of them, to tell them about Carol, and at that time I remarked about how really fortunate they both were, because of the fact that his wife had died suddenly, and that her passing in such a way should truly be considered a blessing.

Thank you for your comments and concern.
 
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