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Words I never thought I would say

Jazzma
Jazzma Member Posts: 161
Sixth Anniversary 250 Care Reactions 100 Comments 25 Insightfuls Reactions
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We've all said things to our partner with dementia that we wish we could take back — angry, frustrated, sad, words that they can't begin to understand the reason for. Fortunately they forget quickly. Lately I've said something to friends and family that I never expected to.

I'm ready for my husband to die.

DH has been home from memory care for a month and a half. I love having him close, waking up at night and knowing he's there. I love that he greets me with a smile when he wakes up. But I see him slipping steadily, forgetting how (not just where) to pee, forgetting how to use utensils, not recognizing our home, being concerned about nonexistent people around us. I know that it will not get any better than this. It's been a really hard thing to acknowledge.

There's no telling how long this will last, so being ready maybe doesn't mean anything — but it's a huge step for me. I know many of you understand.

Comments

  • CindiEC
    CindiEC Member Posts: 12
    10 Comments 5 Care Reactions
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    I feel guilty all the time for thinking of myself instead of my DH.
    Give yourself grace.
    You are doing the best you can in a very difficult situation

  • Crkddy
    Crkddy Member Posts: 100
    Fourth Anniversary 25 Insightfuls Reactions 25 Likes 25 Care Reactions
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    Yes, I certainly understand, and you are not alone. Do not be hard on yourself.

  • Marla13
    Marla13 Member Posts: 18
    10 Comments Second Anniversary 5 Likes
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    @Jazzma, it’s not selfish to feel that you want your life back. It’s a part of self-preservation. I feel the same way.

  • Kat63
    Kat63 Member Posts: 116
    Fourth Anniversary 100 Comments 100 Care Reactions 25 Insightfuls Reactions
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    @jazzma, I could have wrote your post. My DH is doing exactly what you stated except I don’t get the smile. I don’t really remember the last time I saw a smile. And yes of course I think about what it would be like to have a normal life again, but God only knows when and if that will happen.

  • debriesea
    debriesea Member Posts: 31
    25 Care Reactions 10 Comments 5 Insightfuls Reactions First Anniversary
    Member

    My DH is not as far along as yours, but is still a shell of the man he was. I also pray for an earlier ending rather than the long, ugly road that could be ahead.
    My heart and prayers are with you all on this unwanted journey.

  • trottingalong
    trottingalong Member Posts: 554
    Eighth Anniversary 500 Comments 250 Care Reactions 250 Likes
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    My DH is not as far along, just confused at times and short term memory loss. He also has COPD and has these frightening breathing attacks because of very thick mucus that his weakened lungs attempt to cough up. He often ends up on the floor, losing all bodily functions and desperately trying to breathe. I recently told a friend that I hope the COPD gets him before the Alz. I felt so guilty afterwards. We still laugh often though, so then I think why would I wish an earlier death?

  • annie51
    annie51 Member Posts: 249
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    I think we all have those thoughts at some point, selfish or not. I believe any normal person would, but it doesn’t mean we don’t feel guilt for thinking them. I wish I could really know what my DH is feeling - when he’s in a good mood, when he’s barking and cussing at me, when he’s loving and telling me he loves me, when he’s frustrated because I can’t understand what he’s saying. Are those feelings as fleeting as his memory is? Is he aware of what’s happening to him? If I knew these things, maybe I would think differently about whether an earlier end would be a blessing in his mind.

  • Quilting brings calm
    Quilting brings calm Member Posts: 2,726
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    edited 1:27AM

    None of you are doing anything wrong by thinking that way. First, they are miserable, you are miserable. Second, they are in pain or are struggling to breathe. Third, we are all only human and we struggle to get through the day ourselves. We are exhausted and a good portion of caregivers sacrifice their financial stability, their health and even their lives taking care of their loved ones.

  • cdgbdr
    cdgbdr Member Posts: 127
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    We're all human. No judgment. I think we all feel this

  • midge333
    midge333 Member Posts: 447
    250 Likes 100 Insightfuls Reactions 100 Care Reactions 100 Comments
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    @Whyzit2 : Great job! You had a clear plan and calmly stuck to it! You are a great example for all of us.

    Remember that intervention is the default mode of our medical system. You must have a clear plan to limit care or you will be bulldozed into inappropriate interventions.

    We all should have a clear plan before we are in the midst of a crisis. My opinion (and shared by my DW before her decline) is that I do not want any life prolonging treatments for my wife now that she has severe dementia (stage 6). No antibiotics. No mechanical ventilation. No feeding tube. No IV hydration. No pacemaker. No surgery. No CPR. Your philosophy and "line in the sand" may be different than mine. We all look at this differently and that is ok. But, please think through your plan before there is a crisis. It is ideal to talk to your spouse with dementia before they decline to understand what they want done when they reach end stage dementia. Putting your head in the sand until you are in the midst of a crisis pretty much guarantees undesirable outcomes.

  • SDianeL
    SDianeL Member Posts: 1,338
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    my husband passed in August after a steep rapid decline. He passed from aspiration pneumonia. I miss him so much it hurts but am glad he’s no longer suffering. The facility kept asking me if I wanted to transport him to the hospital. I kept saying no. So I understand exactly how you feel. 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