1. sqeaker

    sqeaker Registered User

    May 10, 2017
    26
    Hi Everyone
    I feel so alone my husband got worse this February after chest infection, and he is now bed bound and unable to do anything. He cant talk only odd words, and sometimes I get a smile and a hello. We are soul mates and are so close never argued we have just had our 30th Wedding Anniversary and he was not aware I just sat and cried most of the evening,

    its lonely as I spend time doing everything and no conversation as he sleeps a lot., I miss the man I knew so much, I was asked to consider DNR as the nurse said that if he had a heat attack today, we would not resuscitate him as he would not come back the same it would be worse, I could not make that decision as I wanted him back, but it was done by the doctor and I have it handed to me in an envelope to keep in the fridge in case ambulance is ever called.

    They told me he is in end stage Alzheimer's but could not tell me how long that is but said he may start to refuse food and drink. I want him treated home if he is poorly. what a journey and I never thought it would be so hard. sorry to go on Funny how relatives don't offer help. thank you.
     
  2. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    5,020
    N Ireland
    Hello @sqeaker, no need to be sorry about your post.

    I, and everyone else here, will fully understand your feelings of loss and loneliness as well as that difficulty with decisions that tear us apart. Although my wife is not yet at the same stage as your husband I have been dealing with all these aspects of dementia of late.

    Feel free to come on-line to talk about things if you think that will help.
     
  3. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,746
    Kent
    Hello @sqeaker

    The feelings of isolation and being alone are feelings so many of us understand. The loving partnership we had is no longer there and we, as carers, just have to lean on the love, without the partnership and sharing we enjoyed for years.

    Please continue to post here whenever you feel you need somewhere to off load. We all know where you are emotionally and although it won`t improve your situation at least it might give you an outlet.

    Do you get any help to enable you to get out even for an hour or so?
     
  4. Jean1234

    Jean1234 Registered User

    Mar 19, 2015
    254
    Hi there
    Had to answer your post as I can fully understand where you are at this time. The only difference being that my OH is in a care home not at home with me. He also is bedridden , speaks hardly at all and only one or two words when he does, and just lays there looking. It is heartbreaking to see and I cry buckets for the man that we have lost. But very occasionally there is a spark of his old self. He will attempt to smile even wink, speak those very treasured couple of words all of which help to keep me going. He still loves his food although of course can’t feed himself. Something that gives him pleasure is chocolate so I always have some around and feeding him something like a Malteser not only gives him pleasure but also me as I feel as if I am doing something for him that he likes. We (you and I) are in a dreadful place that only people here can relate to but the support that TP gives is so great that I bless the day years ago that I found it. Without it I would have gone under years ago. Take care and keep posting.
     
  5. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,439
    East of England
    This has to be one of the most difficult things to happen and understand. My husband is not as ill as yours is but I feel so much your painful feelings. Family members vary so much in their reaction to this disease and when they reject the person with dementia it’s a hammer blow. I then have to remember the good folks who help and comfort us. I have reached the awful point that when I hear someone has died of heart attack or cancer I think how lucky they were. How awful is that? What I really mean is that anything seems better than this disease.
     
  6. Mojosho

    Mojosho Registered User

    Sep 13, 2019
    31
    It is strange to be sitting in adjacent chairs with someone you've been with half a century and no words. Yes it's the loneliest I've ever been. I know they encourage you to keep talking but with no feedback it's just a meaningless monologue. If someone comes his head is moving left to right with every word spoken but still saying nothing. The problem is we don't know for how long? X
     
  7. kindred

    kindred Registered User

    Apr 8, 2018
    2,260
    Sweetheart, thank you for saying that, I do agree. This disease is surreal. with love, Geraldinexx
     
  8. Lirene

    Lirene Registered User

    Sep 15, 2019
    108
    My heart goes out to you and my thoughts are with you. You are grieving for someone who is still alive, but not living. Love and hugs xx
     
  9. White Rose

    White Rose Registered User

    Nov 4, 2018
    93
     

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