PSP Association

Would you consider?

After helping my mother complete her journey with PSP I find myself thinking of what can be done for those who continue on their journeys. Would people consider placing their family member with people who have experience caring for individuals with PSP? Would a family be willing to move their family member so they could be cared for in a safe, nurturing, knowledgeable and caring environment? Would it be possible to open a door to those with PSP and to give them the care that they deserve? Rather than trying to get permission to provide the level of care for your family member through the paper shuffle could the paper shuffle be used to provide care specifically to PSP'ers under one roof. Please let me know what your thoughts are.

5 Replies

Dorothy Thompson

Hi Sugardart

Interesting proposition, it would take a lot of commitment and a lot of finance though. How do you envision it would work in practise? I agree entirely with paper shuffling and especially the shufflers, most of whom seem to me to get a job title and stand behind it and the system rather than actually doing the job. I have lost count at the number of therapists who have phoned me to ask what sort of care we need and to be told that we are on the waiting list.


I would agree with Dorothy, what we need from all professionals are deeds not words!


Although it may be a good idea, I would not have used the service. Since PSP is such a debilitating illness, with no where to go but down, I would keep my loved one in his home with family that love him, where he would feel safe a cared for 24/7. I had made husband at home for the 5 years that he suffered with PSP. The last 4 days of his life he spent in a beautiful suite in a hospice setting, and I never left his side. The worst part for me was when he tried to speak and tell me something, I could not understand him. I just miss him so much.


Hi Sugardart

For what my opinion is worth, here it is. Living in Spain, we have no backup or help or teams at all. I am the sole carer (with the help of my husband who is an absolute godsend) for my father who has PSP. There is no one to help or advise at all. The onus here is very much on the family and palliative care is practically non existent. My only form of information is from websites and forums like these, which are invaluable. Although I think most carers would chose to keep their loved one at home, close to them, spending as much time as possible with them, I think we would all like a little more support, understanding and knowledge. I, for one, would be delighted if there were trained nurses who would come to the home now and again to assess and advise. Ruling that out as an option, perhaps I would consider your proposal come time if it was available. If it was a specialist place where every member of staff had detailed knowledge of PSP and it's symptoms, and had experience of the individuality of each case, then just maybe, closer to the end I would make the decision that they could do a better job than I can. But this is purely because it is so frightening here on your own, not knowing at what point to make changes which might be better, or to stop doing things which may be harmful, in terms of movement, feeding, bathroom considerations etc. I always feel I am floundering around in the dark with this, despite hours and hours of reading, webinars, forums etc. So coming down to closer to the end when things get much harder in terms of hygiene and feeding, then yes, I might well consider this. Of course, this may also be because it is my father and not a beloved spouse, whom I would never let out of my sight and I think I would also feel I could do a better job with, no matter what. Not that I don't love my Dad, but I think it would be an easier decision to make for him.


Hello Sugardart

Like you, I am now post-journey. I cared for Tony at home as long as possible but it came to the point where a care home was better for us all.

Regarding all under one roof - a local care home or hospice is easier for the family for visiting than a specialist unit further away. A hospice is quite likely to have nursing staff with the necessary specialist knowledge (locally we do not yet have a residential unit) and my experience with the care home was that we built up a good relationship - I respected the staff's expertise and they equally were willing to use my experience. As you know, it's a daily learning curve.

I did manage to visit most days and even considered renting in the town to save the journey but decided (a) 15 miles each way was do-able even in bad weather and (b) possibly was not going to last long - in the event it was best part of a year.

I passionately believe there should be more specialist nurses for PSP - locally I believe the neuro specialist nurses are/were funded by Parkinson's UK and were restricted at the time on who they could fully support. Because of the initial "looks like it's probably Parkinson's" diagnosis I had got to know them (two covering a huge area) and I felt they would have been there on the end of the telephone had I been really stuck.

We were fortunate to be accepted for CHC (Continuing Health Care) which made the paper shuffle easier as it meant one point of contact who would liaise with various professionals and then say yea or nay. Took away some of the wading through treacle feeling. How do people cope with the new system of self-funding, or whatever it's called?

For the moment, I'm selfishly enjoying the freedom from worry but go along to support the PSPA "local" group (best part of 50 miles away) when I can - mix of carers, ex-carers and those still on the journey.

Look forward to seeing what comes from your asking the question.



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