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Lonliness when caring for a spouse with ALZ/dementia

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Maru
Maru Member Posts: 147
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My DH is not quite in the middle stage of ALZ, and most days he is "normal", but he isn't really. His critical thinking has diminished in most everything except math. We used to have spirited discussions about matters of faith, politics and so on. Now, half the time he can't hold a discussion about a movie that we watching because he either didn't understand it or he can't remember what just happened. Even when he sounds as if he knows what he is talking about I'm not sure if he is making stuff up or not. Long story short…I'm living with this man, still a wonderful, kind, loving man but I feel like I am just a caretaker, not like someone who is in a very long comfortable relationship. I can't share this with our grown children. It would just make them feel bad and what can they do about it? I miss my husband, my life companion.

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  • Maru
    Maru Member Posts: 147
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    i hadn't made the connection, but i am now talking to anyone and everyone, just to have a conversation, however brief. DH and I do talk, but I am always guarding what I say and how I say it to protect him from anxiety. I don't want to make him question himself any more than he may still be doing. My heart aches for you.

  • Maru
    Maru Member Posts: 147
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    I think it would be comforting to my DH to watch some of the old films or programs. Thanks for the idea. Maybe I can get away with listening to a book via ear buds. He wants us to watch TV together and I don't know that I can bear watching some of that stuff.

  • Chammer
    Chammer Member Posts: 184
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    @Maru I sometimes use ear buds to sit w DH while he is watching TV so I can either watch something else on my phone or iPad or listen to podcast or audio book. He does get irritated when he realizes I'm not invested in what he is watching. I let him know I am sitting w him and that counts.

  • BPS
    BPS Member Posts: 284
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    There are many things that I feel like I can't share with my adult kids too. That makes me feel like I am not being completely honest with them but I also feel like as a parent my responsibility is to protect them even though they are adults with their own kids. That makes me feel more distant from them, but telling them everything would do no good. This disease has made not only the relationship with my spouses hard it affects every relationship I have.

  • JulietteBee
    JulietteBee Member Posts: 145
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    It is called "anticipatory grief" and it is very much real.💔

  • Cathy coconis
    Cathy coconis Member Posts: 23
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    MARU:Where has my husband gone? Loss…

    I posted the below…”I find myself asking…”in the caregiver section before realizing there was a caring for a spouse section. Then I found your post, and the many responses. I guess we are all feeling lonely, alone.

    However, I did share this info and all that’s going on with my 32 year old daughter. At first it was hard for her to accept, not to mention that my husband behaves “better” in front of her. But now it seems that she is making an effort to spend more time with him, and takes him for me for a half day or so to give me a break. That’s not what we tell him of course. She just comes up with little things they can do. She is a daddy’s girl. This also gives her time to prepare for the future, which she knows from experience what it will look like. Maybe you should give your children some info. It may make you feel better.

    Hugs

    Cathy coconis

    Cathy coconis  Member Posts: 21

    Fourth Anniversary 10 Comments 5 Care Reactions

    MemberJuly 13


    Where has my husband gone? Loss…

    I find myself asking that question often. He’s here physically, but he is not the man that he was when I married him. I feel so sad today. Yet it doesn’t bother him as much since he doesn’t even realize how much he’s changed.

    he’s inside the grocery store while I’m waiting in the car because I just don’t have the patience to shop with him. He’s soo slow, wandering aimlessly, but really wants to still do some things. He’s safe because I’m watching the door where he comes out. 

    I’ve taken over all else, it feels strange to remove him from most of his previous responsibilities, esp finances. He acts ok with it but sometimes just looks so lost. Sometimes we can joke about the situation but as our communication continues to break down, I have to just nod my head when I have no idea what he’s talking about.

    I just want to hear from other caregivers about this feeling of loss and sadness

  • jmiketully
    jmiketully Member Posts: 1
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    I appreciate your putting this out there. Many of us are in a similar situation. My DW has recently become more withdrawn, less verbal. She has rediscovered books and is obsessive about them. It's good, really. She seems to find comfort with her books, although I'm certain that she does not "read" in the sense the rest of us understand reading. But it seems to give her comfort — although she is also much more withdrawn. This seems to be a new stage. I estimate she's in stage 4 or 5. It's difficult to witness the erosion of a loved one, is it not?

  • Goodlife2025
    Goodlife2025 Member Posts: 76
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    My DW, age 49 and in stage 5, moving into stage 6. I cannot look at who she "used to be"; it is just so painful. Not just that she is withdrawn (so I am if being honest) but that erosion; occurring one day at a time is stealing her essence. We too try to find the humorous moments, and enjoy the simpler things of life. But you all know, some days are better/easier than others.

  • FredW
    FredW Member Posts: 27
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    This is a lonely road. And this disease is horrible. That we all agree on.

    I feel for all of who have taken on the primary caregiving role for a loved one. It takes strength and love.

    Hugs to you all.

  • Biggles
    Biggles Member Posts: 432
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    That is so sad, perhaps, as we often do, think to yourself the phone and all his information contacts friends and messages have done their job and served him well and now his granddaughter can continue her journey with the help of his phone. Hugs.

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