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Been a long 6 years

sixcats
sixcats Member Posts: 27
Sixth Anniversary 25 Care Reactions 10 Comments
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in Caring For a Spouse or Partner

My BH, age 65 now, is very close to the end of his journey. If someone has a “to do” list I would love feedback.

IMG_1718.jpeg

Comments

  • CindyBum
    CindyBum Member Posts: 400
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    xoxo

  • SDianeL
    SDianeL Member Posts: 1,401
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    so sorry you are at this point. I’ve been there. Is he under hospice care? If so, they have counselors and Social Workers who can help you. Just ask the hospice nurse. The facility also knows what to do. Keep talking to him. He can hear you. We are here for you. Sending love and hugs. 💜

  • sixcats
    sixcats Member Posts: 27
    Sixth Anniversary 25 Care Reactions 10 Comments
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    yes, Jimmy is in hospice care. However his hospice team at Silverado Beverly Place are totally useless. Sad but true. At least the skilled caregivers there are, and always been, so wonderful. Thanks for bringing this up. I need to talk to the administrator. Also am looking into a “death doula”

  • sixcats
    sixcats Member Posts: 27
    Sixth Anniversary 25 Care Reactions 10 Comments
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  • Karen711
    Karen711 Member Posts: 129
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    ((💜)), wonderful photo of the two of you!

  • ronda b
    ronda b Member Posts: 189
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    https://alzconnected.org/discussion/comment/241206#Comment_241206

    Ask for a different hospice group. You are allowed to.

  • WIGO23
    WIGO23 Member Posts: 167
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    I have no advice to offer. But I do offer caring concern for fellow travelers on this most difficult journey. I hope that as the journey comes to an end, it is as easy and peaceful as it can be.

  • Russinator
    Russinator Member Posts: 182
    100 Comments Second Anniversary 25 Likes 25 Care Reactions
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    ((HUGS))

  • Russinator
    Russinator Member Posts: 182
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    My heart goes out to you.

  • Anna2022
    Anna2022 Member Posts: 213
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    edited 1:20AM

    @sixcats My heart goes out to you as you manage these days. I wish you and your DH a gentle journey.

  • Vitruvius
    Vitruvius Member Posts: 354
    Fourth Anniversary 100 Likes 100 Care Reactions 100 Comments
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    My DW is at a similar late stage. She is 73 and has been Stage 7f for about four months. This week her MCF and hospice both informed me that she has had a noticeable decline and that probably indicates her time is now quite short. She eats very little and is eating less by the day. She accepts food when you tap her lip with a spoonful, otherwise you would think she was comatose.

    As far as a to-do list, I haven’t done much. I have contacted a funeral service. She has a rare dementia (Semantic Dementia) and the University who confirmed her diagnosis indicated they would welcome the opportunity to autopsy her brain (to confirm their ability to properly diagnose this dementia). Semantic Dementia is also not genetically caused (as far as they know) so a confirmation provides my children and grandchildren some relief that they are no more likely to get dementia than any random person.

    Other than that I don’t know what else one can do but wait it out. I visit often and feed her. I talk to her but she is completely nonresponsive. Her hands are too contracted for me to hold them, otherwise I would. I advocate for her and seek frequent updates on her condition. If anyone has any other suggestions I would welcome them.

    I am not doing any planning for my life “after”. I’ll wait for the grief to subside before moving on.

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
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