To all my friends and advisors on this wonderful site , my husband has been granted funding, it was relatively straight forward but I did quite a bit of homework beforehand. Hugh thanks to Kevin also for advice and pointing me in direction of other help and guidelines. Our lives will be very different from now on. Never for one moment was I prepared for this result having read many other posts of struggling. Best Christmas present, to be sure. So, if in doubt, plod on,read lots and heed all advice. Best wishes all xxxx
CHC funding: To all my friends and advisors... - PSP Association
CHC funding
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gypsywoman1947
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27 Replies
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glad to hear your getting some much deserved help just before the holidays. Your right, never take no for an answer..Merry Christmas
Good for you and Congratulations! It's nice to have otheres help us out, isn't it! Well keep working for all that was agreed upon and make sure they do it in a timely manner
((HUGS))
AVB
Great news and what a Christmas bonus. It is amazing how much more difficult funding is from one area to another for a disease which obviously reaches the stage when a carer can no longer manage on her/his own. How can this be? When we apply for CHC for Ben I will be using Kevin's advise, our Parkinson's Nurse said he not quite at that stage yet but that she has always won it for her patients so let's hope she will support and win the funding for us when the time is right.
Love Kate xxx
Well Katie our O T and a hospice worker said we were not at that stage for funding yet, but it was Heady and Kevin on here who said they thought my husband was ready and so I applied. I do believe it has to vary from region to region as I found it relatively easy . No lies told but every occurrence mentally or physically was logged and mentioned by myself I did look at notes Kevin mentioned and purchased a book from the care to be different site and used it for guidance also. The book does say no one health or social worker should judge whether you are ready or not , only a trained CHC assessor. I'd say apply, you can not be refused assessment either. Whole thing has taken 6 weeks. Kind regards , GW
Thanks for the advise GW, what stage was your hubby at when you applied?
K xx
Don't know what sort of stage he is at but I think he scored high risk on behaviour and cognition, problems are .....no mobility at all, very little coordination , occasional choking, thinks he can do things so if I'm out of room he will rise chair until he falls out of it. Tries to get out of bed. Hallucinates. Mild incontinenance , catheter to be fitted shortly cause of frequency. Shovels food in can eat with spoon only, no concept of hot or cold or amount. Irrational laughter constant throughout the day. Short term memory. He was diagnosed 2014 but showed symptoms in 2012 and before that on hindsight. Hope this helps.xx
Hi GW thanks for that, Ben diagnosed 2014 but like your husband showed symptoms way before that. Ben doesn't try to get out of bed or hallucinate but talks in his sleep all the time now. He does try to rise by himself if I'm not in the room and speech and voice are noticeably worse over the last couple of months and he is coughing and choking more frequently. I chop his food and try to keep it as soft as possible. He can walk short distances with a walker if helped up but constantly needs someone with him to prevent falls. I am terrified of another fall as broke his hip last time and has been found to have osteoporosis. Cognitively he seems on the ball but can't express what he is thinking. So sad to witness his demise, how I loathe this disease.
I would go for funding , try for it.x
Fantastic news! Well done for your perseverance!! X
So happy you have got CHC, you will get the help you deserve, lovely Christmas present to you both, sending you a massive hug xxxxx
Yes , the best Christmas present. XXXX
We got good news this week, too, in the form of another 6 hours of an aide paid for by the Department of Veterans Affairs! We have been paying for this privately, so that will slow the evaporation of our savings by a nice amount. We didn't even apply for it; the nurse in charge of the palliative care program here at the VA hospital piped up on our last visit and said she was going to put in the request for us. I LOVE the VA!!
Horray well done.
Well done. Its encouraging for those of us following. Which area do you live in ? I am hoping we will be alright because there are a number of people in my area who have been diagnosed. I hope that is a good sign, assuming that it is better if they are familiar with PSP
love, Jean xx
We live in Worcestershire. The assessor knew about psp. She did tell me that one of her assessed with psp was no longer eligible because as she became worse she was no longer a danger to herself. Depressing.x
Oh dear ! Surely they then need nursing care more ?
Do they stop giving it to you at that stage ?
Jean x
Well apparently she said if they are not likely to be harmed by their actions, eg can't fall , not swallowing so can't choke, then they are not always eligible. She said a person could be paralysed neck down and be less likely to get funding as no harm is likely to come to them. Funny set up , I don't understand it. I'll cross that bridge when we get to it. !!! Xx
Think that needs to go on my new year to do list, along with moving house!! (Guess I'll be taking him with me) really don't know how I'm going to cope
Love Debbie xxx
I understand how you feel, we moved 12 months ago cause of this wretched psp, I found our bungalow on my own, dealt with everything, terrible wrench and all the time psp looming over us. I hate it. Do get funding assessment and I hope you are successful. Xx
Am really scared of biting off more than I can chew, but can't really see an alternative to moving!! Xx
You WILL cope once you convince yourself it is the best option for the circumstances you are in. I was in 4 bedroom ,one lounge /small diner , small kitchen. I didn't have money for garage conversion, could get no help and was advised that a stairlift would not be suitable for psp. I put house up for sale, waited ,sold then looked for bungalows all on my own. Meanwhile I packed and de cluttered. Day we moved was first time my husband saw the bungalow. I've then had to have new kitchen, change bathroom and get used to having a small 2 bedroom bungalow. 12 months on I know it as right move, deterioration in his psp had been steady and determined. I couldn't do it now and the amount of care I have to give. Yes I miss the house I'd been in for 30 years but I could see the writing on the wall. I'm 70 , I wouldn't want to have left it much longer. Only you know what is best but once you know for sure, plan ahead, either way. XxxxxxxxGW
Wow. I admire you for doing what had to be done. I haven't moved house but done lots of things all alone. It takes some getting used to and still distresses me.
We have to dig deep into our inner resources.
love, Jean x
You get my 👍🏼👍🏼👍🏼👍🏼 for dealing with so much at 70, I'm 57and it's hard enough, yes was advised stair lift not a good idea, I can't visualise a way to add a downstairs wet room to our house, although I guess experts would find a way. But we've only lived there 6 years so no happy memories, I'd sooner spend what money we have moving, but all soooo so difficult xx
I know, it took me 12 months to accept there was no alternative, unless you have downstairs room or garage to adapt you are done for. If you are eligible the conversion or adaptions can be paid for . Unfortunately we had little savings and our weekly income meant we had to pay the first £25,000 .i would have to have loaned to have work done and I was quoted £16,000. When house was sold the difference in purchase price of bungalow paid for the move and fees etc, new kitchen,new shower room so I sort of broke even . I never used to feel like 70 but goodness me I feel it now. Social worker asked if my health had been affected, it's a definite yes. I'm snappy on a short string all the time, shoving , pushing and lugging equipment and 12 stone on it has enhanced my arthritis in my knees and some mornings I can't straighten my back. Of course it affects anybody's health, it's relentless, not a job you go away from .Barmy lot they should work in a care environment in their training. You have to weigh it up carefully and go for it, but if you want to stay put see if you are eligible to have work done. The OT should advise where to apply. Best of luck. Xx
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