How does sharing diagnosis of Alzheimer's affect patient?

Posted by srakoczy1 @srakoczy1, Dec 9, 2023

My Mom has progressed from MCI to Alzheimer. I am scared to share this with her but my brothers and I have decided to let dr. tell her if she wants to know. I am still uneasy with this. Wondering if others could share their experience.

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@brenday43

Mary, I see that your post above was in 2023.. You are correct that this memory issue must be different for everyone.. Hope you are able to cope with the huge issue of caring for your husband. You mentioned that you have been thinking of a long term care placement for your him, and maybe he is placed by this time. It's tough to be a full time caregiver, something I know well, too.. My husband is my caregiver now and this has really changed who he is.. Thank goodness, he entertains himself by playing Pickleball 2 or 3 times/week and he enjoys getting out for a couple of hours, talking with others, etc. altho he is the oldest Pickleball player in his group. We are both in our earliest 80's.. He was always playing tennis in the past, so that has been helpful at keeping him active..
This is my first day on this site, and I did write a few comments on another location.. If you are willing, I would love to communicate with you here.. It's perfect for me! I'm afraid to talk to folks in person.. it seems that I'm misunderstood far too often.. Hope I'm a good girl...

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Hi Brenda,

My husband is still here with me. We have put our deposit down on two places, hoping to be in Independent Living together before having to think about Memory Care but it is in the back of my mind.
Are you the caregiver for your husband or is he your caregiver? Either way it is hard for both of you, I am sure.
I totally lost it at the end of the day and definitely didn't feel like a good girl. I am so glad there is such a thing as forgiveness and healing because without it we are doomed.
I am glad my words helped in some way. I am sure you are very good. Bless you.

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My wife finally got the Alzheimer's diagnosis about 7 years ago, and the family quickly learned to never say the "A" word within earshot. She would go into a litany of dire predictions that she would soon be peeing herself and vegetating on the couch, mumbling and drooling until she expires. Her memory and cognitive abilities have declined significantly since then but she still goes into panic mode if she hears the word. Be careful.

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I am in the exact same boat, my mom is in complete denial so I want the doctor to tell her, did you let the doctor tell your mom and how did she take it?

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@esav33

I am in the exact same boat, my mom is in complete denial so I want the doctor to tell her, did you let the doctor tell your mom and how did she take it?

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in reply to @esav33 Hi. My sister made a decision to place her husband in "assisted living" last spring because he was falling so much, and always forgetting to use his walker. She had tried her best to keep him home, but realized that eventually "her had would be forced, " and it was. He has now been moved to the "memory care" unit. I don't know what she would have done if she and husband had not had the foresight to buy long term care insurance, even tho it is only good for 5 years. $8000 a month, and every time my brother in law needs something "extra," that means more money out of my sister's pocket. Sigh. At the very least, she was able to make a very difficult decision, just as I did when I decided to stop being a caregiver for my best friend who has dementia. I could not do it alone, even though I care about her very much and was not being paid. Best of luck!

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yes, it is very hard to realize that you can't be a caregiver to everyone who needs care. I've also learned after being a caregiver to many, I now need to concentrate on caregiving to myself, who I've forgotten many, many times over the years. Just as advised in an airplane emergency, put the oxygen mask on yourself, before you help someone else.

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@maggy9

The sad part of all of these comments is that it seems that so many people treat this disease like something we should not talk about when it is not talked about enough. So many people have a form of dementia or will get it, we should be talking about it more. How to treat it, cope with it, understand it. Not ostracize those who have it. My husband has multifactorial dementia and Alzheimer's, as a retired career nurse nothing prepared me for this, he denies there is anything "wrong" with him every day. He ran multi-billion dollar projects for a major utility company 8 years ago and now can't operate the TV remote or find the cheese in the fridge. We need to educate, support caregivers, reduce stress, find the cause and improve care and treatments!

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@maggy9
I agree that we need to be open to conversation about this disease and not feel we need to hide a diagnosis. But I think the issue here is about what is best for the person who is ill. When and how to tell them.

My husband as been impaired for many years but I only truly recognized it about 2 years ago. Hindsight shows me that it's been much longer. I now tell people so they know what we are going through, though family and friends are aware after a few minutes of conversation.

My concern is about telling him. I know my hubby will not handle it well since he has never handled medical diagnoses well. I would like to have more assistance from the medical community but he is resistant to any sort of testing that would help with that. I'm the one who is alone with the resulting anger and suspicion. Right now, it seems best to not rock the boat and maintain the status quo as long as I can.

It's different for everyone but this is my situation.

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Our MD told my husband he has Alzheimers. He doesn't know what it is or remember. I told him again and he doesn't understand it. I could tell him everyday and it wouldn't register.

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@janet7

I think it depends on who is asking me about my husband’s Dementia. His older son, whom we rarely see, questioned whether his Dad even had Dementia, so I sent him the results of the 2 hour test results.
My husband has always been quiet but it is his speech that is noticeable now. Sometimes he can’t complete a sentence and slurs his words. This happened just the other day and his sister, who we rarely see, kept giving me looks as if she was aware that he wasn’t himself. But she hasn’t asked any questions about why, so I am assuming she knows.
It is obvious to most who know him that he isn’t the same, but unless they ask me outright what the problem is, I assume they know why. Some people are aware that something isn’t right while others just go along their merry way or just aren’t interested.
The only objection my husband has about telling anyone about his Dementia is a shirt I bought that says “My loved one has Dementia” and he asked if those words were about him. I felt very bad that he felt so exposed by my wearing this shirt that I will not wear it again. It never even occurred to me that he would be bothered by the words. Another lesson learned.

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I don't think advertising helps. I told family right away. Then I started telling friends. Some ppl think to ask how he's doing. I think siblings should know. Because it can be genetic.

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@esav33

I am in the exact same boat, my mom is in complete denial so I want the doctor to tell her, did you let the doctor tell your mom and how did she take it?

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@esav33, denial is common. Have you been able to discuss with your mom's doctor?

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' litmus test is to ask yourself, would you want to know. It is basically the golden rule of doing to others as you would like done for yourself. I would want to know. I am pragmatic. Name it and I will deal with it. Once my husband had the actual diagnosis of ALZ, it was a relief. All my worries, suspicions, observations came to fruition and I could move forward. My husband knows his diagnosis, but what he truly understands about it, I'm not sure. When he has been aggressive to me...so out of character..I later explained that I was upset with ALZ, not him. If you and your loved one have always been open and honest, why would this be any different?

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