PSP Association
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John

I have been hoping to have John home and have over the last nine weeks tried to get a package in place. Two Carers and an OT came last Thursday. They said they were not prepared to walk John because he is unsteady, they would not use the stairlift. The only way they would come is if we had his bed downstairs, had a hoist and a commode and said the most they would be there would be 2 hours daily and I was on my own the other 22 hours. If I needed to go out would have to pay for a sitter as I have no family near. We only have a small downstairs cloakroom. Regrettably it looks as though he has to stay in the care home as I am not strong enough to manage him on my own. The money is just going so quickly as we cannot get CHC. As you can imagine I am gutted. You were right Amanda. Paulinex

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So sorry Pauline

But you have done your best! Sadly we cannot do the impossible!

Don’t give up with chc! Appeal as soon as you can!

Huge hugs x

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Hi Pauline

I feel for you both.

They refused to put a stairlift in for us. We managed to get one anyway and it was a boon for three years.

I get cross with the way they jump to hoists. People loose the ability to stand and walk very quickly with them. That's what happened to Liz when on respite in a home only using hoists. Now two years on the new home makes a point of not using one when it can and Liz has got quite a bit of assisted standing back.

What about turning stands? They work really well.

Yes, the money does go. Frighteningly fast.

I'm probably not helping here... Sorry... Just commiserating.

Kevin

xx

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Kevin we had a stairlift put in two years ago and it has been a bonus. The Carers said they would not be able to use a rotor stand xx

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I completely agree with you on the "jumping to use a hoist" comment. Dad has been in a nursing home since last Sept and they only use a hoist to move him, with 2 aides no less.

I asked the staff why they just didn't have the 2 aides help him up and into his wheelchair, they told me it's in his care plan hoist only moves. I was told to ask the head nurse and she explained that the aides are not physical/occupational therapists so any moves the aides make are solely based on safety AND if they were to not to use a hoist and dad fell or was dropped it comes down to a liability issue.....basically lawsuit and money..

As an example back in Nov 2017 while getting dad into bed one evening an aide decided to forego the hoist and just help dad into bed. He become over balanced and they both went down. Dad stuck his face on the nightstand and received 5 stitches in his face plus multiple bruises. It resulted in a late evening ER trip, I was called immediately so I was there with him.

We didn't sue or anything, just requested that any unpaid medical bills be picked up by the nursing home, which was done. The aide was fired the next shift for NOT following dad's care plan even though I had requested he not be, I figured firing him wouldn't help anyone.

Ron

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Hi Ron

That's awful. First a drought and then a flood.

What I have done here a couple of times is to get the OT in or the physio and they write up a plan which the home then follows. The health and safety thing run in reverse as it were.

H & S is such a problem. In the UK too it has made people very common sense averse.

I agree with you re. firing. Unless the worker is a loose cannot it is a learning curve for everyone. He is unlikely to make the same mistake twice.

Anyway, just to mention, I do get a lot out of your thoughtful posts.

I hope everything is going OK at your end.

Thanks

Kevin

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Mum has the ability to do stands but appears to have given up trying now. Says no all the time when asked. Her apathy and moods are so bad.

The walking though does appear to have gone as she says she can't get her legs to move when trying to.

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Hi Spiralsparkle.

We tap the leg we want Liz to move and use verbal prompts too, for that leg and then the other. I think I read somewhere that patting the leg sends signals back up to the brain which helps it to send nerve signals back.

I might be wrong, but I think that keeping as much muscle function going as possible pushes back the day when the person becomes bed bound with all of the issues that brings.

It does sound so miserable for you both.

All I can do is say I understand and my heart goes out to you both.

Warmly

Kevin

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Yes I always touch & rub what want her to try to move.

We also count 1, 2 as that gets them moving but I think she just can't be bothered anymore. I try to discuss with her but she doesn't want to listen.

Also it depends what carer is on as if she isn't keen she won't co operate.

It is great the home have got Liz to be able to do more stands.

It is so good to keep that weight bearing going. When Mum does agree she does them great.

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Pauline it is obviously the Care Agency who are refusing to assist him to a chair lift or indeed anywhere else? My husband had a chair lift which we bought before he got too bad. The carers 2 per visit, came 4 times a day. When his walking became bad the OT at the Hospice arranged for him to have a stand aid. Not sure what it is called but he had to use a belt (supplied) to keep him erect and safe. Sure someone will know what it's called. He had one downstairs and one upstairs. I found the Hospice Physio very helpful. Although she never gave him physio!! She did act as go between for us though. Have you got any contact with your Hospice? If not it might be good to try them. You can also get counselling there should you need it.

As Amanda said you need to appeal regarding CHC. You shouldn't have to pay for this. You can also get someone to sit with John a couple of times a week without paying. If you get him home contact your local Carers Trust. They will arrange for you to get a few hours off from caring.

Marie x

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I was very aware that " carers " would not have been allowed to treat Chris as I did because of the risk of falls. Chris was very cooperative and I managed but was on my own a lot. I never found anyone to sit with Chris. They couldn't manage his incontinence ! I relied on friends and a paid carer and he went to the hospice twice a week until he became bed bound. Then I was on my own apart from the palliative team who came in 3 times a day and were available 24 hrs if needed.

Chris lost movement completely during a week in hospital.

He had a bed downstairs and a wet room.

Its a nightmare for you, Pauline. Are you having to pay for the care home ?

So sorry. A big hug from Jean xx

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Yes Jean we are paying and the money is going very quicklyxx hope to see you again on the 8 June xx

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I'm so sorry.

Yes I expect to be there.

love, Jean xx

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Pauline you have tried really hard to get John home, but it wasn’t to be, but you have done an amazing job of looking after John, you visit the care Home every day, you are hands on in the nursing home, you have always made sure John is well looked after, you take him out when possible, my heart feels for you, because I know how much you wanted to bring John home. You must look after yourself, when I spoke to you over the weekend, I felt so sad for you, but you do need to look after yourself and get away for some restbite. Sending you a big hug, always here if you need me. Yvonne xxxxxx

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Thanks Yvonne. You always have time for me with all you have on your plate with George . I was told by a couple of the other residents that the carers shout at John when he cannot move his legs etc so need to ask him but he could not get any words out today. Xxx

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Oh that’s not nice to hear, hope you can sort it out xxxx

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Dear Pauline,

I'm so sorry I don't know more about the UK system: I know the CHC challenge seems to be big over there, and I can't for the life of me figure out how some of our members seem to 'get it' and others have to beat their head against a wall..?? It's the same disease and the same (for the most part) disability problems - just maybe a different timeline or emphasis on THIS symptom vs THAT symptom? Gosh it must be so heartbreakingly maddening! You have bl__y enough to deal with, and then this.....

I can only offer a hug and sympathetic ear/eye.

Hang in there.

XXX

Anne G.

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