I am 62. My husband is 68. He was diagnosed with Alzheimer’s when he was 64. It doesn’t seem like a long time but with this disease progression can be fast. He is still capable of self care, etc. Just starting to need help with reminders about shampoo, toothpaste, deodorant....how to use that stuff. Still walks the dog. Has himself, decided to give up his motorcycle.
I’m interested in knowing if anyone actually tries to talk about memory loss with their loved ones. I tried today. Not sure it’s worth it. I would never want my husband to be afraid or to fear anything. He got quiet and just a tad defensive, saying he’s still here and in good shape, which I agreed with and told him I would be there for him.
Why is Alzheimer’s such a taboo subject to talk about? It’s like this big secret. I don’t get it the stigma around it. Any opinions?
Thanks -Cat
Be the first one to openly talk about it. For me it was hard at first, but it got easier.
When I was Mom's live-in caregiver until she passed away, she had dementia. There were a couple times she became distraught because she knew something was wrong. Once she even pleaded with me to help her. Tore my heart out.
Each time, I gently told her about dementia, that there was no cure for it, but I was there to ensure she would be well cared for. Each time, she mulled it over, nodded, and seemed to feel better. Of course, she would forget the conversation, but at least for a short time she seemed to understand and feel better.
Side note: of a dear couple, the husband had Parkinson's. Even before he went into a hospice home a year ago, I was surprised and pleased how the wife and family and friends were so open about dying and death and talking with him about it. Everyone was relaxed about it. At his memorial service, the owner of the hospice and her husband, spoke about how being around my friends changed their lives!
Side, side note: A hospice dietician came with a hospice nurse to check on Mom. There wasn't much to discuss about Mom's diet, but the dietician, a young woman, sat beside Mom, held her hand, and just talked. Smooth as glass the conversation shifted to where she had Mom talking about fear of death (no) and dying. It was so beautifully done and such a beautiful conversation, I wept.
Hug and best wishes to you and your husband, Cat.
Reading on this forum, however, you will find each person is unique and what works for one - won't work for another. What works now - won't work later.
I don't discuss what the disease will do in the days to come - should it run a full course. I assure him in the moment. Stay safe and God Bless.
We learned pretty quickly that there was nothing to be gained by trying to convince dad that he had a disease, that his brain was failing. Even if we were to convince him of this at 4:00 it would be gone by 4:05.
So I used to gently remind him once in a while that his memory was not that good anymore and that he was getting up in years. He was good with that. You do what ever works to keep dementia folks calm.
But he NEVER liked talking about things like that. I used to tell him that when I died I wanted to be cremated, he would get upset and refused to talk about it.
I would tell him that I made him beneficiary on a policy and he refused to talk about it. So it was not unusual that he did not want to talk about his diagnosis.
But I wonder even early on maybe he did not fully understand what it meant.
As far as stigma you are right. But "we" have never liked talking about Mental Health issues. Just as in the 50's and 60's cancer was a taboo subject. Then comes the 80's with HIV and that was taboo.
As a caregiver and wife of a person that had dementia I used outings we had as a chance to be informative. If anyone made a comment about my Husband I would use it as a starting point. (he made noises and people thought he was crying and would ask if he was OK) Kids were great, they would ask and I would ask them if they had classmates with Autism. Most would say yes and I would just tell them that my Husband was like their classmates, that his brain did not work right. They get it!
For the person with dementia they spend so much time trying to cover up the confusion, mistakes. Doing that is exhausting and can lead to frustration and sometimes outbursts.
You will become his "safe person" and may become a shadow to you.
Just keep telling him that you love him and will be there for him.
Give him a hug. If he hugs back treasure it.
My brother and I discussed his Lewy's Dementia constantly from the moment he was diagnosed with Probably Early Lewy's Dementia. He said that while he was not happy knowing what the future held, he was happy to know why he had nighttime dreamlike hallucinations, why he saw the world differently, why he had sudden difficulty with his swallow, why some patterns caused blank state and just going out (marble, hotel carpet, what have you). He became fascinated with what he had, and would tell others. He asked me to take over all finances, to send monthly statements to him, to give him an allowance account. He was a brilliant, loving, gentle man, and remained so until his death about a year and one half after his diagnosis. He was SO RELIEVED to know there was a reason he saw the world as he did. He would have been a marvelous research subject. Only you know the personality here. If you think about it, the big C. is a taboo also, until you GET it. Then we survivors delight in talking talking talking about it to others who understand. The taboo grows out of fear. Fear of ourselves, for ourselves and by ourselves. I sure wish you luck.
The person with the disease knows what Alzheimer's/dementia will do to them. They've heard all the stories and probably know people in a nursing home who are completely debilitated from it.
It's terrifying to know that you're losing your mind and unless you die, you will regress back into into infancy totally dependent on others for your most basic needs and won't even remember what day it is or recognize your own family. Even if someone is willing to talk about it, they know it will not change the outcome.
Your husband is coping with it in the best way for him and getting by one day at a time.
Join a support group instead. You need to be your husband's advocate and supporter, not his doctor, but you also need to be able to ask questions and vent -- just not to him.
The Alzheimer's Association website is an excellent resource for everything related to Alzheimer's and living with it. I suggest you check it out -- Alz.org
Alzheimer's is not 'taboo' or a big secret. It's a scary topic. Nobody wants it, we're all afraid of it, and men in particular don't want to be reminded by their wives what they're losing and no longer capable of doing, let's face it. Thank God your DH had it in him to give up his motorcycle on his own, bless him for that. Most of them go down kicking and screaming about how they're 'perfectly capable of driving' and yada yada. Be glad for that, right?
Wishing you the best of luck learning all you can about how to be the best support to your DH through this dreadful experience you're both going through. And GETTING all the support YOU need as well. AD affects BOTH of you, not just your husband.
It isn't stigma, it's fear, and I don't blame him. Of all the diseases of old age, this is the one I fear the most. Talk about what he wants to talk about and try not to dwell on his future. Let him enjoy his life as much as he can now.
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