Hi all, had a really bad weekend! Crashed again. My wonderful daughter had to come and sort me out. Wasnt capable of doing anything. Yes, I knew it was coming! Yes, of course all my family were expecting it, telling me to contact CHC people to get some proper respite. Would I listen to me or anybody else? Of course not!!!
Monday, I decided I WOULD get on top of things. Phoned CHC, they agreed to fund some respite. Made an appointment to go and look at a place. Recommended to me by a fellow PSP Carer. Thought great, I even managed to get on top of my diary, moved a few regular appointments around, so we now have a day off. Yippee, I have control again!!! I even wrote a blog saying how proud I was of myself. (Got lost!)
I know you are all waiting for the BUT!!!!
Went to said nursing home, it is lovely. The room they have available overlooks the sea! It's a BUPA home, they said they have had several people with PSP. Then came the questioning about S! You guessed it, his needs are way above what they can cope with!!!!
SO NOW WHAT DO I DO???????
If a nursing home can't cope with S, how on earth do they expect me too? If his needs are far greater than they can provide, WHO CAN????
I know it's not over, they are going to talk to CHC, to see if they will fund an extra member of staff needed. So may be everything will be fine, but at the moment, I just don't know what to do. How I am keeping it altogether, I don't know, numbness I think. I have been down lots of times, I have kicked while there, more times than I care to remember, but this feeling, well........
My thoughts go out to all those that are fighting to get this CHC funding. We are reasonably comfortably off, but there is no way we could afford to pay for the care that it's obvious is needed. But if I can't get care for S with the funding, who is going to look after him? I am at the end, without respite, I can't go on. So I ask again, WHAT CAN I DO????
Lots of love