Progressing very rapidly: Hi my brother... - PSP Association

PSP Association

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Progressing very rapidly


Hi my brother Larry having PSP for almost 9 years is on a rapid decline, last 4 moths but now the last 3 weeks he has gone from getting him out of bed, to now his legs are so weak can’t do that anymore, he is to weak to stand, hardly opens his mouth to feed him, some days he doesn’t open his mouth and when he does he keeps the food in front takes him a few to swallow which I know is the muscles in his mouth, of course his body is so right no communication, no more thumbs up or down, we have had him up just a few hours a day, but this morning he can’t do anymore, so I guess from now on he will be bedbound, and we will go from there, as long as he is comfortable, clean, and he can still eat, and giving him water. This is a terrible disease as we all know. Just had to talk about it.

7 Replies

Oh no! This is so sad and I don’t know what to say or how to help. Just keep doing what you’re doing and tell him how much you love him. I hope when his time comes that it will be peaceful. I HATE PSP 😢

So sorry. It's so hard .

Supportive hug from Jean x xx

Refusal to eat and drink was the only thing Mary could control in her last days. She had had enough of this dreadful disease. You need to get the palliative care team and/or Hospicecare involved. Please try to keep up with his oral hygiene because Mary caught oral thrush in her final days which caused her and us carers a great deal of ditress. In the end she was peaceful and at rest.

And this is the ideal place to talk about it because so many of us have the badge & the t-shirt. Is he getting sufficient fluids? Dehydration can have a big effect. Mum is definitely declining but has picked up the last couple of days as we have pushed fluids. Thinking of you. xxx

This is the stage that my husband is in too. So sad. I had to finally put him in a skilled nursing facility. I go see him everyday after work. I wish I could spend more time with him but, being not close to retirement age, I have to work or lose our house! Hugs to you and everyone else dealing with PSP.

Unfortunately this is not uncommon. You are correct though that it now comes down to keeping him safe and comfortable for as long as he chooses.

Since his decline was fairly rapid you may want to have his doctor check for anything else, like UTI or other infection.


So sad

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