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    My DH really went down in hospital! He had been feeding himself. Now has to be fed! Also was walking now needs PT to try to get him walking again. Have any of you experienced this? Will hebe able to do these things again? Also I don't think he knows me anymore!
    • CommentAuthorLindylou*
    • CommentTimeJan 4th 2017
    Oh, Ky caregiver. My heart goes out to you. What a tough row this is to hoe. When there is a loss like his, there may be some improvement when he gets back to his familiar environment. But usually they don't return to their original "base level". Rehab will be searching for what his new base will be. Please know I'm sending out love your way best I know how.
    Yes, I put my DH in nursing home for respite. I needed to go see my brother who was in bad shape. When I returned in 10 days they told me he couldn't walk at all. They got him in my car from a wheelchair and I got him into the house with wheelchair and daughter's help. The next day hospice had a hospital bed delivered and he was never out of bed again. He lived another 10 months and for a while could feed himself and talk some but went steadily downhill from there. I did manage to keep him at home until the end but never said I would at all costs. Like Lindylou, I was worried about hurting myself rolling him around in the hospital bed. I did learn a lot about how to do it from the aides who came every morning. I even learned to change the sheets and waterproof pads under him. When it was all over my back said "Thank-you, Thank-you!"
    My DH came home in worse condition after five days in a nursing home that was Respite provided for me by Hospice. He improved some at home with more attention and better care.
    • CommentAuthorxox
    • CommentTimeJan 4th 2017
    This can be progression and coincidence. But they can often do worse while in a hospital. He might get better at home, being in a familiar place. My father would always have delirium in his hospital stays in his last 10 years of life. See if there is any improvement in the next week.
    • CommentAuthormyrtle*
    • CommentTimeJan 4th 2017
    My mother, who walked with a walker, went into the hospital for a week when she was 97 years old. They took the walker away and kept her in bed and by the time she was discharged she could not even stand up. Instead of going back home, she had to go into "rehab" (a nursing home) for two weeks so she could learn to walk again. She was fully competent so there were no issues of confusion or eating but the decline in physical ability was amazing.
    Thanks for your comments! I truly wonder if I should have just his health problems play out! No hospital! No ER! I question whether I should have just did nothing. He has very poor quality of life . I have prayed he not have to go through the horrifying last stage. Not able to eat talk walk . That is not life. I don't want to play God, but I have truly wondered if I did right thing!
    • CommentAuthorLindylou*
    • CommentTimeJan 6th 2017
    Ky caregiver. Don't second guess yourself. You were/are doing the best you could/can. That was the past. Today is now. Different decisions can be made today if you choose. And, God knows, it is hard to say there is any right way to do anything with this disease. Talk with family, doctors, counsellors, hospice, or whatever supports you have about future decisions and what is available to you. My partner and I filled out a Medical Orders for Life Sustaining Treatments a year and a half ago with her then physician. As his health care proxy, you can, if you choose, fill out some similar plan of treatment/non-treatment. My prayers go with you, with all of us, as we muddle through doing the best we can at the moment we are in.
    You just have to do the best you can and be able to live with your decision ! My hat goes off to the ones that never question what they are doing! Whether it be what is best! Hard decisions with this dreaded disease !
    Ky caregiver, I think that you can only make the best judgements that you can, and I would not beat yourself up for it. It's not a perfect world and caregiving is not an exact science. This is your husband and you probably know him better than anyone else, and can probably make better decisions for him...because you have at least some idea of what he would want. And no one is going to advocate for him better than you. So give yourself a break. (Personally, I think you're doing a great job!)
    • CommentAuthorCharlotte
    • CommentTimeJan 7th 2017
    I try to remember: what's done is done, can't change it, need to go on from this day forward. You can't undo the decision you made. You made the decision you thought best at the time. You took a chance - remember he could have come out of the procedure feeling better with no change in his mental state. That is what you were hoping for. Nothing wrong with making that choice. Be kind to yourself.
    I he did say my name. And told me he loves me! Words I want to hear! But he is far worse than he was in alertness, ambulation, feeding. Doesn't smile much anymore! Me either for that matter! Hate this disease!0
    • CommentAuthorMim
    • CommentTimeJan 16th 2017
    The thought occurred to me, not for the first time, that many years ago, maybe as few as 50 or 60, we wouldn't have these decisions to make. Time, God, nature, or whatever you believe would have taken care of the situation for us. I wonder sometimes if modern medicine & medications are more of a cruelty than a help, prolonging life beyond the point of reason.
    Then on the other hand, just that many years ago, I would be dying (or already dead) of ovarian cancer. It used to be pretty much of a death sentence.
    I guess there's good & bad in most advances in anything.