1. < Caregivers: Dementia

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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tgeno | @tgeno | Dec 16, 2023
In reply to @janet7 "I think it depends on who is asking me about my husband’s Dementia. His older son,..." + (show)
@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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A better alternative to the shirt are the little cards the Alzheimer's Association produces that say "Thank you for your patience. The person I am with is memory impaired and may require a few extra moments. Your understanding is appreciated." These cards are no bigger than a business card. The are in English on one side and Spanish on the other. You can carry them in a purse or pocket and use them discreetly. I believe that Alzheimer's Association makes them available for free. You can call them on their 24-hour hotline at 1-800-272-3900.

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1 reply
janet7 | @janet7 | Dec 16, 2023
In reply to @tgeno "A better alternative to the shirt are the little cards the Alzheimer's Association produces that say..." + (show)
@tgeno

A better alternative to the shirt are the little cards the Alzheimer's Association produces that say "Thank you for your patience. The person I am with is memory impaired and may require a few extra moments. Your understanding is appreciated." These cards are no bigger than a business card. The are in English on one side and Spanish on the other. You can carry them in a purse or pocket and use them discreetly. I believe that Alzheimer's Association makes them available for free. You can call them on their 24-hour hotline at 1-800-272-3900.

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Thank you for your suggestion about using the cards. Of course these cards would be used for strangers only. If my husband would notice my using the cards and questions what they are about, I would have to stop.
When he is on the phone he has people on hold, waiting long periods of time for his reply, and so far they have all been very patient with him, God bless them.
Thank you again for your suggestion.

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frances007 | @frances007 | Mar 14 12:31pm

I did share with my friend that she had cognitive issues and used an example so she would understand, even though most people with dementia, in my experience, do not think they have a problem.
One day I came home from doing some grocery shopping for my friend Carolyn, and she said, "let me pay you for that." I said, "you already did." I think this helped her understand that she did in fact, have some memory issues. However, she has no clue that she has memory issues, which makes it even more difficult to explain the diagnosis.
Best to you.

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1 reply
chris20 | @chris20 | Mar 14 3:13pm

My wife was diagnosed with Alzheimer's and accompanying paranoid ideation several years ago. It took quite a few visits to a gerontologist to get the diagnosis and I have been a 24/7 caregiver ever since then. No one can say the word Alzheimer's to her without her becoming angry and hostile to everyone, mostly me and the Dr. On occasions when children or grandchildren visit us, none of us mentions the A word or the condition, nor does anyone point out that she has asked them the same question numerous times, we all just keep repeating the same answers. We go to our family doctor and I answer all the questions for her as is the case most places we go. I would say try mentioning it and see what the response is, then take it from there.

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nathandavid | @nathandavid | Mar 15 8:55am

Please make sure her Doctor speaks with her in simple terms not medical terms and that he expresses some degree of hope and has a kind and gentle bedside manner. My mother’s so called Nurse Practitioner was all the opposite of this. I took Mom home and fired this idiot Nurse Practitioner and found Mom a wonderful geriatrician. Remember, your Mom comes first.

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maggy9 | @maggy9 | May 8 9:17pm
In reply to @colleenyoung "@ret2tus, I wanted to address your question about how and when to tell others, when your..." + (show)
@colleenyoung

@ret2tus, I wanted to address your question about how and when to tell others, when your husband can't or doesn't.

You might find the tips shared by Mayo Clinic experts helpful:
- Maintaining Friendships https://connect.mayoclinic.org/blog/living-with-mild-cognitive-impairment-mci/newsfeed-post/maintaining-friendships/

- Should I Tell My Family About My MCI? https://connect.mayoclinic.org/blog/living-with-mild-cognitive-impairment-mci/newsfeed-post/should-i-tell-my-family-about-my-mci/

- Who Else Besides Family Should I Tell About My MCI? https://connect.mayoclinic.org/blog/living-with-mild-cognitive-impairment-mci/newsfeed-post/who-else-besides-family-should-i-tell-about-my-mci/

- Discussing MCI with children https://connect.mayoclinic.org/blog/living-with-mild-cognitive-impairment-mci/newsfeed-post/discussing-mci-with-children/

Obviously, you have good communication and shared understanding of who you agreed to tell, but what about the people who haven't been told and symptoms are becoming apparent. That gets stickier, right. You want to respect his control to share when he wants and is ready, but I'm sure you also see that some situations may be eased if the other person had some insight. Am I getting that right?

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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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2 replies
Mentor
Sue, Volunteer Mentor | @sueinmn | May 8 10:50pm
In reply to @maggy9 "The sad part of all of these comments is that it seems that so many people..." + (show)
@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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Maggy - We are dealing with this now with my "best cousin" - she knows something is wrong, but every suggestion meets with the response "I'm NOT stupid!" Her partner, sisters, BFF and I are working really hard to figure out how to approach each new issue as it arises. Her (adult) kids are in denial. My friend and I are the only ones who have ever dealt with dementia and live 900 miles away.
I wish we could snap our fingers and help people understand how brain changes affect people...
Sue

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1995victoria | @1995victoria | May 9 8:53am

My cousin took marijuana, and I think it contributed to her confusion. She would take a month's rx in a week, so then Dr learned to rx a week at a time. She would eat a week's groceries in a day and then be sick. She would ask me same question over and over. I learned not to answer but change the subject. A very sad situation. She is now in nursing home and safe. She thinks she is in Florida, and I told her to stay another few weeks. I learned not to correct her, just go with whatever she wants and enjoy her "hotel"

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BrendaY | @brenday43 | May 14 4:41pm
In reply to @maryvc "In our case, my 75 yo husband, S was dx w MCI and at first we..." + (show)
@maryvc

In our case, my 75 yo husband, S was dx w MCI and at first we didn’t know what to say to others. But for years I had people ask if he was ok? Do I notice anything? And we would just say “ getting older.” “Slipping” “ Oh that short term memory is going!”
This year We decided to start the journey with evaluations of geriatricians and neuropsychologists leading to sleep studies and driving test.
For us, telling others, at first a few at a time, felt better.
It is a disease after all, and if it was cancer we would be telling people.
S has not been diagnosed as dementia yet. Somehow that feels better. He tells everyone that he has been dx w cognitive impairment. A frequent response is “I would never know. You seem fine. “ or they say to me “ He seems fine.”
It’s hard because what they don’t see is the whiteboard, the daily, hourly reminding, the fact that I now take care of everything. He drives to a few familiar places and I do the rest.
We went on a cruise this Fall. He did great but we told people, and met many “in the same boat.” Everyone was helpful and understanding when S would get a little lost.
He knows this will progress and that we are thinking short term about long term care.
We are enjoying each other as much as possible, although there are days like this morning, where we got in an argument that will go nowhere and just leave us both sad. He will forget and I’ll beat myself up for even going there.
In a nutshell, I am learning this is so different for everyone.
In our case it’s an open book and no secret and would be hard to disguise or conceal.
We kiss each other good night. He loves that. A kiss or hug is very healing.
My heart goes out to all of you. And thank you for all of your sharing.

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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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1 reply
BrendaY | @brenday43 | May 14 4:57pm
In reply to @frances007 "I did share with my friend that she had cognitive issues and used an example so..." + (show)
@frances007

I did share with my friend that she had cognitive issues and used an example so she would understand, even though most people with dementia, in my experience, do not think they have a problem.
One day I came home from doing some grocery shopping for my friend Carolyn, and she said, "let me pay you for that." I said, "you already did." I think this helped her understand that she did in fact, have some memory issues. However, she has no clue that she has memory issues, which makes it even more difficult to explain the diagnosis.
Best to you.

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One of my memory losses occurred a few years back when I had a miniature club meeting at my home.. We all sat around the table and made tiny hydrangea flower arrangements for our dollhouses.. Fun! I had purchased a large amount of miniature crocks and pots, some even with lids.. I mentioned to one of the ladies that I had decided to give half of them to her after she asked if she could buy some from me..
Days later a small package arrived in the mail, from her... I was surprised, of course.. Well, when I opened the package I discovered that it was a bunch of the miniature crocks that I had offered to her as a gift but thought I still needed to do it.. Also enclosed was a brief letter
telling me that she was shocked that I wanted to take them back, especially after we had done so many crafts together!
I was mortified... since I had already given them to her and then totally forgotten ...
She told me in the letter that she had already created her little French kitchen and used them, but had ripped them all out to return them to me!
Both she and her husband were very angry at me and never forgave me, of course..
sigh.... a memory is a sad thing to lose....

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