OK! Now what do I do????: Hi all, had a... - PSP Association

PSP Association

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OK! Now what do I do????


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!!!!


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


17 Replies

i have no words that i am writing this id ont know. i feel horrible. like i'm stuffed with cotton, without a cold or flu. Hang in there Heady, hang in there!


Heady in reply to abirke

Hope you feel better soon.

Lots of love


Hi Heady, hang on in there until another place is found. I had the same situation in 2014 and the place that turned him down because they didn't have resources to cope with his needs....the Hospice! I wanted to go to Suffolk to see our son's new house, leaving C in the Hospice as suggested by hospice staff. I arranged to stay at our sons and then had the call from the hospice saying he couldn't stay. I was mystified how a hospice couldn't meet his needs. I was so annoyed/ upset, I went on line and found a care home near our sons house, booked it, prepared to pay myself and then rang CHC to tell them we wouldn't need carers that week. It transpired that the hospice couldn't provide continual care so phoned CHC and asked them to provide night staff for him. For some reason they said no. The CHC lady said I shouldn't have booked anywhere as they were now responsible for Colin's care. I said I was going away and if they wouldn't provide help for the hospice, what was I supposed to do. She got back to me the next day saying they had checked out the home I had booked and it was OK for Colin to stay there and they would pay for the week.

So as I say, hang on in there. There will be places somewhere who can take your husband and I just hope they find one soon.

Sending you a great big hug.


Oh heady hang in there, it is hard to cope with this horrible illness, people don't realise what it is like, glad that you wonderful daughter, is there to try and pick you up and help you, you are only human, you/we need time for ourselves. If the care home could not offer the care S needed, what a job we are doing as careers.

Heady fight to get S into some rest bite for a week and go get yourself some rest to recharge your batteries. We all think we can carry on, but we all get down, we are doing the government a favour, but being careers for our other halves, saving them loads of money.

My heart goes out to go, been there and it is not a good place to be. Sending you a massive hug.💐💐💐💐

Thanks Yvonne. Feel terrible at the moment, if they can't cope with him, with all the staff and training, how do they think I can. My daughter says its politics! Asking for more money. That really sucks!!!

Lots of love


easterncedar in reply to Heady

Hey Heady - hang on! I hate to hear you are suffering so - you are the one who bucks us up when we are down! What can I do other than send hugs? I do feel for you. I tried to find a day program for my guy, and the only one anywhere near was depressing and inappropriate. One place I was referred to by the social worker never did have a day program and didn't know why she might have thought so. They allowed that perhaps I could schedule an overnight there, but it's $300, and I think my sweetheart would keel over if I agreed to pay that to be rid of him for a night. Good luck, my dear. Wishing you some relief, ec

Heady in reply to NannaB

My daughter has told me, that this is normal. As soon as a nursing home hears those magic words CHC, the problem becomes enormous, they can't cope and need a lot more money!!! I feel sick to the stomach, has if we haven't got enough problems, someone is trying to make a fast buck out of us. I actually couldn't care what happens behind the scenes, but involve me, it feels like I have been deliberately upset to make the point. I don't need that, all they had do was say "boo" that would have got me going just as well! I am about to start making my phone calls now. Wish me luck!!!

Lots of love


Heady I wish you all the luck in the world, can't believe that people only see things as money, we care for our partners we are not trained and we can do it all without training. I am finding it a bit easier with the CHC, but it is still hard work, had to change the whole bed yesterdT, even quilt was wet, felt like a washing house here yesterday, then he was up at 5.15 this morning, heady sending you a big hug and good luck with your phone calls 💐💐💐💐💐

Oh Heady that is awful news but keep pressing them to find a bed so you can get that much needed rest. Sending you lots of love 🌹🌼🌻🌸🌺 Nanny857 xx

Oh, Heady, So sorry to hear this. It feels like pushing a bus up a mountain.

I hope its all being sorted by now but why oh why can't it be less complicated. !!!

Let us know what happens.

lots of love and hugs. Jean x

Hi Heady sorry to hear you are having such a bad time, I hope they sort something out for you very soon, you always sound like you are coping far better than I think I will, but ifs nursing home can't cope then who can!!!

My good?? News is we went to the'merory clinic' yesterday, they've never heard of PSP!! Really feel like everyone's passing the buck!

Hope you get things sorted

Lots of love

Debbie xxxx

Heady in reply to Debbieann

That's the problem Debbie. Nobody has heard to PSP, so they are just passing the buck! Hopefully one day, your husband will land up on someone's desk who has heard of this evil disease!

Lots of love


Doglinton in reply to Heady

Here in S E London everyone I see in NHS say they have heard of it, except for our GPs, who then did look it up.

The problem is that it seems there is nothing they can do, apart from react to what they see, and they are increasingly restricted by the governments cuts in funding. It will get worse. People like us who have savings are going to have to pay !!!

I thought getting CHC solved it all !!

love and hugs, Jean xx

Sorry Heady been there and back only thing is just struggle on.

We were told by CHC it was up to us to find a nursing home who could take neurological patients but to avoid Alzimer's specialist homes as not suitable for PSP sufferers (why? no explanation) so last May they gave me list of homes across N Wales and said up to me to find a respite place. After a long search nearly a month visiting over 20 homes we found a Leonard Cheshire home about an hour away which suited M but CHC refused to fund too expensive over £1500 for a week and no option to top up, I then discussed with DN giving all the places we had been to ranked in order with those who had respite beds. Next day got a call from a home (not our first choice but close and nice staff) saying they were expecting M the next day for 5 days respite. CHC then called me to explain they had arranged a respite place. The home was good we got in once more (last July) but they have had no respite beds since July. The local hospice said they cannot look after M so we had to go to a hospice in LLandudno who are nurse led they provided a week respite in late Oct and have booked a week sometime in April/May but they are concerned that they cannot cope with M in their day unit so fingers crossed she will get day out.

CHC have told me that respite beds in Wales are like hen's teeth only choice is to keeping calling each week.

In meantime I like you get tired and more exhausted uckily Marie Curie nurses give me 2 or 3 nights cover a week so I get some sleep or else I do not think I would be sane.

Wishing you all the best of luck with getting some time out. You need it Tim


Oh Heady I do so feel for you. Nothing much to say as it has all been said above. As the days go by and I can feel my bidy and mind slowly returning to normal, I am already wondering how I managed to do the caring and it wasn,t for too long a time compared to many on here. Hang on in there. Love and hugs from me in Turkey.

hi heady

sorry 4 ,m,y tardy reply but you know i think yo will find somewhere suitable for s

I'm sure of it actually

lol mil#


Heady in reply to jillannf6

Hi Jill, yes I have got S into the care home! Starting on the 8th Feb for a week. He needs a break from me! Hopefully, I will be able to get some rest and be able to resume my rightful place, looking after him.

Lots of love


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