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PSP Association
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Is this the end for my dad?

My dad was taken in to hospital at the weekend, from the respite care home. He had kidney failure, fecal impaction, severe dehydration and urine retention and a chest and urine infection. He's only opened his eyes a couple of times since then, he does eat (pureed and is fed) but can't talk. His breathing is rapid and his chest congested. He seems to have 'gone' so quickly. He's catheterised and completely immobile. Before the first week in respite, he could talk, sit up, eat and drink. Can they come back from this far? I'm terrified. Scared of him 'coming back' to a miserable existence, and scared for him to go. He's so helpless in hospital, no one seems to understand PSP. This is awful.

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Are you the same person your Dad was at the nursing home and your sister called for an ambulance??

I am sorry to hear of your Dad having so many problems, well one good thing he is in the hospital where they know more then the nursing home.

Remember we are not doctors hear but your father is very lucky to have his Son and his family taking care of him make sure you keep up with his care.

Good luck to you and your Dad.


So sorry you have had to go thru this aweful experience! Yes. We expect care at a nursing home to be 'on the ball' for their patients. I think they were not doing their job!

Found similar but less dire circumstances when my husband went into the nursing home environment when he was not able to communicate. I sat with him a lot and no nurse came near us to change or move him while i was there. Their excuse was that I was there so did not need to check on him!

It is no excuse for poor treatment, but I think many of our homes are hopelessly understaffed, and there are few nurse aids who really care about their patients. There was 1 at our place who csme in off duty to see how J was, having realised on her own that he was dying when she last went off duty.

I hope your dad has the strength to improve with good care. Thinking of you all.


Jen xxx

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Hi there. Your poor father. It doesnt sound like he got this way overnight. I hope you kick up a fuss on his behalf as it sounds like neglect to me. God bless the man. I hope the hospital can make him comfortable and pain free. Do keep us informed.



These are all signs that his body is gradually shutting down.Don't try to make him eat he wont want to .hopefully he will go into a deep sleep and gradually slip away peacefully and in no pain .mythoughts are with you.



Thank you all. Yes, he's the same chap who was in respite for just 10 days before this happened, and he seemed fine when he went in. Can't understand how all this can happen so quickly in a nursing home! They insisted he wasn't in pain or dehydrated, when I knew he was. They kept banging on about his temperature being fine, even though I'd told them that may not change. So frustrating, so sad and so undignified for my poor dad. Despite reading all of your posts for months now, I'm only really just realising the full extent of this disease. You're all amazing, strong people.

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Wishing you strength πŸ™πŸ’›


Sarah it might very well be the end. He seems to be a very sick man. I am so sorry. It really is so painful all of this. Some of us have been there as you know. Losing a loved one is never easy. Just think of him and tell him you love him. Make sure your Mum does too. Although she might well be aware this is their last goodbye? I feel so very sorry for all of you.

You unfortunately have to educate doctors and nurses! If they say they don't know what it is refer them to the PSP Association and the information online. Has your Dad got a Neurologist? Looking back I wish I had phoned the one my husband was seeing as nobody else had a clue! If he is based at the same hospital he really should visit your husband. He will have been notified he is an inpatient.

Sarah I am so sorry about all of this. I don't think he has had very good care but even if the care had been better he might well have ended up in hospital anyway?

Not much consolation I know but just love him until he goes. Then you can get angry with people who should have been aware he was dehydrated etc.,

Lots of love to you and your Mum and to your lovely Dad.

Marie xxx

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My husband Barry has been at the stage where I thought I was losing him .... now he is back. Eating and slightly lucid again.

My heart goes out to you and all of us coping with this dreadful disease.



I'm sorry your Dad and your family are going through this. Forget about what the care home did, deal with that later this is not the time. Focus on your Dad and support your mum through this. Just be there for him, unfortunately it doesn't look good. Just be as prepared as you can be in this situation. Say everything that you would want him to know, he's still there despite everything.

Thinking of you.


My dad was similar to that a week or two ago.... and he has come back. Part of the rollercoaster of this disease.


I agree with all. It could go either way really. Although it sounds like a lot of infection going on. Maybe with getting fluids he'll have more strength to fight. But also be prepared for the worst too. My dad had a stroke that I think most people would have recovered from but I think it progressed his PSP even further and he passed away 2 weeks later. Before that he dealt with severe constipation which turned out to be caused by meds. Also had UTIs. If he recovers I would make sure to speak with several people at the care center and watch them closely. Don't be afraid to check on things and ask questions and insist on things. They are getting paid to take care of him and should do it. Prayers for your family.


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