Hi, my father (82), a PSP sufferer since 2014 diagnosis (Parkinsons prior to that for 3-4 years) was admitted to hospital last Tuesday and has been struggling to breathe with pneumonia. The acute infection has gone, but now his lungs are damaged and apparently, due to PSP he doesn't use them properly anyway. His lungs fill up with mucus regularly since he does not swallow anymore and is PEG fed. This means regularly flushing out his lungs by the hospital. The doctors say we will have to continue with a programme of physio and flushing out of his lungs probably for the rest of his life. He is a high care patient and unable to communicate. He used to squeeze our hands in response to questions but now the squeezing is random and he is less in control of his hands. He doesn't blink much either but I know at times he is there. I don't know if anyone else had had advice at this stage? He is apparently not in any pain. Our doctor is not really giving us a programme of palliative care and we are not sure whether we could handle this high care ourselves outside of the hospital. Should we get another doctor's advice? My mother has her own health issues and all three of us children have different views on his situation, whether he should be released or not to recieve nursing at home for his last days - if they are is his last days which we don't know (we would have to employ fully qualified nurses 24 hours a day). Has anyone else been in this position? He seems very uncomfortable with regular shortness of breath and is on oxygen. Does this sound like final stages or should we persist in flushing out his lungs and hope he settles into a better situation soon?
Hospital indefinitely?: Hi, my father (8... - PSP Association
Hospital indefinitely?
Oh I'm sorry. Your father's condition seems pretty dire. I have never heard of the treatment of flushing lungs. How often is it needed? Is he on oxygen? I'm surprised the doctor hasn't suggested a possible timeline at least, or an opinion on whether moving him might pose dangers or not. Will the hospital continue to care for him or are they suggesting he be discharged? Can you talk to a nurse in charge of his care at the hospital? I have found the nurses sometimes more forthcoming and helpful, if practical advice is needed, than the doctors. If you can take him home, is hospice at home available to you where you are?
Maybe more to your point, what would settling into a better situation, if that were possible, offer as a quality of life for your father?
I'm sorry for what you and your father and the rest of the family are going through. I wish you strength and peace.
It sounds like he should be in hospice care and made as comfortable as possible. His quality of life seems unlikely to improve.
I agree with the others, try getting him into a hospice program. Is anyone in the family his Healthcare Proxy? Do you know what his end of life wishes are?
Ron
Thanks for your comments. He did sign a DNR but it was not a very specific one. We are so unsure and I wish we had pinned him down to a more specific one, now. I think we need to get hold of a hospice, though. That is good advice. Many thanks for your thoughts/time.
It’s unfortunate that you don’t have a complete health care proxy in place especially since the family isn’t of one mind...maybe your mom has some insight...I definitely feel hospice should be called in to assist.....I have planned to have my husband be at home to spend his last days ...we have the necessary equipment here like hospital bed, etc...if you don’t hospice will arrange it.....ask the social worker at the hospital for help getting hospice on board..they are usually very knowledgeable and very helpful....just ask, become your Dads advocate !!!
I wish you and yours a quick and peaceful journey end.....take care, Kathy
Hospital bed
At last, help!
He said, "I'm dying today."
Lost in France 
