PSP Association
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Quality of life?

My father is totally bedridden. He has had aspirated pneumonia a few times in the last month and a half. He was fitted with a feeding tube last weekend. Since he came home yesterday, he mostly sleeps. He is not talkative with the PSW's who come to care for him 3x a day. He used to talk to them and be fairly happy. I'm not sure if all quality of life for him is gone. He cant get out of bed even to go to the bathroom. When i talk to him, its like he doesnt even know I'm there at first. Has anyone been at this point? Is there anything I can do to make him feel better? I dont know if he's close to the end of his life. I dont know if the feeding tube was a bad idea. Will it just prolong misery?

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Touch him, talk to him, massage his hands and feet, play music, read aloud. Be close as you can. He will know.

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I agree with Easterncedar. He can’t improve his own quality of life so others have to do it for him. Does he have a hoist to get him out of bed? If you can’t get him out of the house, can you get him into a chair. He will probably know everything that’s said to him but it takes time to process information. You said he doesn’t know you are there at first but he will know if you talk to him, hold his hand and ask him to squeeze it. No one knows when the end will come so don’t just wait for it. There will be something that will improve his life, even if only a little bit but he can’t do it on his own.

Best wishes

XxxX

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He won't go into his wheelchair anymore. Says it causes pain. He does know whats going on, its just like he's absent for a minute when starting a conversation with him. Conversation is hard too because its very hard to understand him now. The only place hes semi comfy is in bed. He is hooked up to tubes 24 hrs a day also.

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That’s so sad.

❤️ XxxX

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are you giving him protein powder through the PEG? that helps with muscle movement? also, is he taking carbidopa/levodpoa, that helps with muscles and throat muscles

i am sorry but there isn't really much you can do.. just be around him and do everything you can to make him comfortable - my dad got strictures in his hands, if i washed them over with luke warm water, it relaxed him - maybe if you was his hands and feet with warm water, if that's possible, that would help... but it's palliative care is the best thing - don't worry about sleeping, it keeps the disease in the background and is good for the patient, though too much sleeping can indicate an infection too, check if his forehead is warm - my dad had 3 infections one after the other in less than 2 months so it's entirely possible to be another bout of infection to happen again... sorry for this tough time

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Hello - My husband did not have a PEG fitted. He was bedridden with alternating fever for 2weeks before dying. GP said chest and abdomen was clear 1 week before he died and the thought was he had a heart attack in the end.

We all have been told that each PSP sufferer has different and alternating symptoms through their illness so we cannot say what the rule is. With Don we visited him daily, talked incessantly to him on ‘stuff’ told him we loved him and suggested he knew and understood what was going. He was not able to talk at least 1 week before he died so we communicated via thumb signals for a short while prior to last resort of hand squeezing before he became semi comatose which was a couple of days before he died.

We played his music cooled his brow and put a fan on him to keep him cool. We said our goodbyes throughout the week before he died. The comfort I feel was him knowing that we were there until the bitter end.

You will know what is right when the time comes. I wish you strength and courage. My heart goes out to you xxxx

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My understanding is that the feeding tube dose extend life,your at a point that you have done all you can do and the best way you know,don't second guess yourself.

Take care

Dee

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Kenfa, I agree with EC and Nana B. Find what it is that makes him the most happiest and expand on that. I love music and a big fan of massage even bigger than that... my pet family. We all have a sweet spot... ice cream and chocolate work for me too although I don't know if that could be managed with a peg.

Tim

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