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My husband has been in a nursing home for 10 months. He now can no longer walk, talk legibly or feed himself. His room is equipped with a ceiling lift and he sits in a lift chair all day. I take over his evening feeding and bedtime care every day to make sure he has the most gentle care and the best chance for long-term survival. However, he now deliberately spits out his evening medicine, refuses to eat and is generally rejecting but enduring my and the care aid's care giving. It looks as if he is aware of his helpless condition and has decided he no longer wants to live. Aside from the gut wrenching distress of seeing my loved one in this despair, I pity him also so much for having to endure this indignity for the rest of his life. Should he be allowed to eat or receive care only if he wants it? How can I make him feel better, how can I help him smile again?

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Alpha, I wish I could be more comforting. The only thing I would suggest is to let him go down the path he chooses, even though it may not be the one you choose for him. In the last months of my father's life, he didn't want to eat or keep going. But my mother felt that if he would only eat, then he would be okay. He would eat a bit for her.

My father's last two years were very stressful. One morning I decided I was just going to put it in God's hands. I found a lot of comfort in letting go and letting Nature take its course. My mother did have a harder time letting go, because they had been married for over 60 years. I know she didn't know what she would do without him. It is usually harder to let go of a spouse than a parent. Still, I would say to let him choose the path he wants to take and help him in whatever way you can.
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alpha3, just smile for him, hold his hand, kiss his cheek. Sing if you are able to.
I don't know if he is refusing or if he just can't swallow or if food upsets his stomach. Try not to challenge him on this, just tell him it's OK.
I would go outside and cry because you need to do that. Really you do.
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Yes, he should only eat if he wants to. Present him with his meal but if he doesn't want to eat don't try to force him or guilt him into eating it. If he wants to eat he'll eat.

Your husband also has the right to refuse medications as long as he doesn't have dementia and can make that decision for himself.

There's very little dignity when someone is unable to walk, talk, or feed themselves. Give him back some of that dignity by allowing him to make these choices for himself regardless of how it may affect his health in the long run. Continue to put his food before him, continue to let him know that it's time for his meds but allow him to refuse these things if he wishes.

It must be terribly heartbreaking to see your husband in this condition but you're also in a unique position. Allow him to be in control of his life. That might be something you can do to make him feel better. He suffers indignities everyday by needing 100% care. In those few areas of his life where he has a choice give him that choice and respect it. It won't be easy. As women, as wives, and as mothers we want to caregive. It's in our nature so you'll have to work hard at letting some of this stuff go but if anything will put a smile on your dear husband's face it'll be being treated like the man he is and respecting his decisions.
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alpha, a whole community here is so sorry for what you and he are going through. May you continue to draw this strength you've shown. He's so fortunate to have you. To follow up on something pamstegma said - has he been checked over by his doctor for discomfort issues like swollen/sore throat, stomach upset, etc., that maybe can be alleviated? This may not all be his 'decision'... God bless.
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Want to make him smile? Recall memories that are dear. Relive old stories from when your love was new. Tell the funny ones, the tearful ones and the sweet ones. Let it be his call if he eats or takes meds. Give him this one final decision. Love him enough to walk this walk with him. You can do this.
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Dysphagia,inability to swallow, IS a symptom of endstage Alzheimers---they "forget" how and food ends up stuck in their mouths,risking choking and aspiration pneumonia (food winds up in their lungs,instead of their stomachs).We decided not to put in a feeding tube,prolonging his agony, as it doesn't really improve the prognosis. Some people feel they are "starving" their loved one,but food is not a cure and terminal pts don't seem to feel hunger as we experience it:the body is shutting down functions and digestion is one of the first to go.My Dad went very peacefully,in his sleep.Hospice care made sure he suffered no pain,but he didn't require much morphine.We watched his favorite show,NCIS(the stupidest show on television: true love)24 hrs a day---neither one of us really paid attention,but it was calming.We listened to Ella Fitzgerald.He went in his sleep,while I was in his recliner next to him,in his apartment with sitters,not a nursing home or hospital.We were lucky to be able to do that for him.God bless all.
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This sounds like the end stage of dementia, and I am sorry to say, there is not much you can do about it. Make sure you have directives in place for last instructions when you are not present. You will not prevent his eventual death, so prepare yourself for the worse. Dementia is unforgiving and spiteful. Once it takes hold, there is nothing you can do about it. My best wishes for you both.
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The only point I would like to add to this discussion is to encourage you to get hospice involved ASAP if not already arranged. The hospice staff would be able to assess the situation directly, and therefore, be in the best position to advise your direction. I'm glad that you are asking the right questions. May God bless.
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I agree with the Rocknrobin, tell him of how wonderful he made your life in the 'good old days' let him know you love him and he can make this decision. See if he wants to know about hospice care choices. Share the best stories, bring in photos and enjoy every minute. If you can, let him know it is okay to go to the next phase. You will be okay and you want what he wants. God bless
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Diane Reim a famous talk show host on public radio was recently interviewed about the passing of her husband. He had parkensons and at the end he chose not to eat or drink and to stop all his meds. I think listening to her interview may help you. My heart goes out to you and I hope you find comfort in knowing that others care. Whatever path he choses let him know you will travel it with him as far as you can go and that you will be ok. They need to hear that!
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