There seems to be the incorrect assumption about Hospices by some people. I'm not an authority on them, just a convert! S only started going to our local one, a couple of weeks ago. He goes one day a week. They pick him up and most of the time I collect, but they would bring him home if I want.
I was told about the service by another PSP carer. Personally, I think S should have started six months ago, to get the most out of it. So it's not something that should be thought of later! The one S goes to, knows all about PSP and they are going to talk him about the condition and what it means to him. Fancy that, someone who cares what the patient might be thinking!!! Yes, most have cancer, but it's run for anyone with a terminal illness, which includes PSP, just because it's not a quick, like Cancer, it is still classed as terminal, because you can't be cured!
Its a bit difficult for me to tell about his day, as Christmas as meant, short days, Christmas lunch and carols etc.! I know that they have a doctor that talks to everyone. S had a tumble minutes before the driver collected him on his first visit. I phoned to tell the nurses, so they got the doctor to check him out. Now going to monitor his blood pressure, as they were concerned it was on the low side. Might explain all the recent falls. They have talks about all aspects of people's illnesses and the problems it causes, there is a chance for massage and various other things. Of course, there is painting etc., to join in with if you want. Mostly, S just sits, taking in a different environment and listening to different people talking and he is away from me for a few hours.
For me, they are very helpful to carers. They are going to send me on a course for carers. Teaching how to lift, care, talking about the problems of caring etc.etc. Every time I go in, the nurse who looks after S, comes across to make sure I am OK, with no problems. just having somebody asking me if I'm fine, is a huge help. At long last, there is someone out there who knows I exist and cares!!! Also, I know for the next 12 weeks, I have the day to myself. I can plan a day for myself or not, what ever I choose!!! It's quite liberating, I can tell you!!!!
I don't know if this service is available for people with advanced PSP, which I why I have posted, because there are a lot of you out there, that would benefit from the hospice service NOW!!! I asked our GP to refer S, he whispered to me that they were only for terminally ill cancer patients, so you may have to fight your doctor. Or go direct to the hospice.
When I first heard the word Hospice, my immediate thoughts were dying people and S was not dying!!! Now I know Hospice means caring people who know what they are doing and are there to help me and S! (And we all need that!)
So please don't let the word frighten you, find out about your local one today, before it's too late for your loved one to benefit from them!
Lots of love