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Wife won't let others know

dmkatz
dmkatz Member Posts: 1 Member
in Caring For a Spouse or Partner
My wife tells me not to tell anyone that she has Alzheimer's. Her mother had it for decades and told everyone. They were very sympathetic. How do I deal with this?
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  • trottingalong
    trottingalong Member Posts: 516
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    My husband doesn’t know I have told his family and our close friends. They all knew that something wasn’t quite right and that it is never mentioned around him. It was very difficult for me to begin telling people, but a relief after. Pretty much everyone said they had suspected something.

  • trottingalong
    trottingalong Member Posts: 516
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    https://alzconnected.org/discussion/comment/232061#Comment_232061

    I finally told my neighbors. My DH takes our dog for a daily walk on our small street. They were wonderful when I mentioned it and all look after him should he get confused. I told them he doesn’t know he has it. Alzheimer’s runs in my DH family, so they were all ok when I told them, although most of them said they hadn’t noticed because they live far away and only talk a few times of year.

  • SDianeL
    SDianeL Member Posts: 1,225
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    She may not believe she has it. No need to honor her wishes. It affects both of you. I told everyone, family and friends, but told them not to mention to my DH. I never used the words dementia or Alzheimer’s with him. I called his Neurologist the brain doctor and if they prescribed new meds I told him they were to help his brain. You need them to know for their understanding and support. Also Make cards to hand out to people if you go somewhere.

  • SDianeL
    SDianeL Member Posts: 1,225
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    Anosognosia Is the term when a person doesn’t know or doesn’t acknowledge they have dementia.

  • fmb
    fmb Member Posts: 537
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    Per DH's request, I did not let people know until he had a stroke and had to move to a facility. While he did not have the ALZ diagnosis until he was already in Stage 6, I knew early on that something other than normal aging was wrong. Not telling other people cost me over 7 years of unsupported caregiving, becoming almost totally isolated with him in our home. It nearly destroyed me. If I had it to do over again, I would have let more people know what was going on and sought support and help for myself much sooner. The person with dementia is not able to think rationally, and therefore cannot make rational requests. You do not have to honor her wish.

  • Stan2
    Stan2 Member Posts: 109
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    edited December 2024

    My wife has shared with our family and close friends and for now I feel like it is her decision to inform anybody else. Her health care team all know of course and I will inform anybody who has reason to spend time with her if I am not present, but I keep it on a "need to know" basis.

  • CindyBum
    CindyBum Member Posts: 345
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    My DW asked me to do the same thing. I told her I couldn’t do that after a month of trying. It was too big of a request to ask me to bear it on my own, which I told her. She let it go after I said that.

    That’s my story anyway.

  • harshedbuzz
    harshedbuzz Member Posts: 4,801
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    @dmkatz

    It is the nature of Alzheimer's that when one partner in a relationship has the diagnosis, that couple/family has Alzheimer's. This is as much your story as hers; it makes sense to share as you need to for understanding and support for you both. She doesn't need to know with whom you shared.

    I treated dad's mixed Alzheimer's/alcohol-related dementia IRL in a similar manner to my DS's autism diagnosis. Information was given on a need-to-know basis. Medical professionals and anyone who might step in to provide care in mom's absence got all the information they needed to understand and help dad. My close friends knew as both conditions were distracting and sometimes made me unreliable for making plans. I was graphic with dad's brother who once judged mom for opting to place dad in MC a couple months before he died. Mom had been very protective of dad's reputation and didn't share how gnarly late stage can be for some PWD. Dad was well known in the local community; I didn't feel the need to get into the details if a former student asked after him.

    HB

Commonly Used Abbreviations


DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
Read more

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