PSP Association
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Advice needed

Hi all.

After a bit of advice.

Barry has rapidly declined. Had to call emergency doctor out on Monday. He said to have him admitted to hospital straight away, then into a nursing home. He had come across CBD before. The reason for admittance was for dehydration.

The problem is, he's declined even more overnight. The adult social care worker said he's not eligible for chc funding because that's for end of life. She doesn't even acknowledge the fact he has dementia.... because it's not written in his notes....anyway to cut a long story short I ended up telling her to F....the notes and do some effing homework on his condition that is written in the notes.

He's become doubly incontinent over night. I'm sorry but that is something I cannot deal with. She thinks I can manage at home with him. Along with four visits a day from carers.

He's not eating or drinking, bed bound and doesn't even know me now.

All this has happened so fast. To think we were on holiday in Spain for a month in April. He was even taking a few steps then.

Hospital has said he's medically fit to be discharged.

Deb....

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Has he got an infection? Went through similar experience with my love. All wanted to rehabilitate, no-one felt like me, that he was at end of life.

Get an OT involved again. See if they can make some sense of it all.

You should insist you won't go home without 24/7 help.

Or iInsist on respite care.

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Still find difficult to edit - or use wrong button!

So sorry you are having such a tough time. Can't really suggest anything else!

Hang in there! Keep fighting and yelling! From my experience, I think you are closer to understanding what is happening than the medics. Find someone who understands CBD!. Get your loved one in a comfortable space, be it hospital, respite, short term or even home with help. He may recover a little, maybe not. CBD seems to be quite unpredictable!

My thoughts and prayers are with you at this frantic time. I hope you have some family support with you.

Big Hug!

Jen xxx

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I have phoned st barnabas.

They are taking on our case.

Hopefully I will have a resolution before the day is out.

Deb

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I hope you get the help you need, Deb. This is very hard.

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Frightening to read this.......... I hope things will get better for you both.

Patrick.

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The adult social care worker is talking rubbish! He has been diagnosed with CBD? He needs help!

Is he in hospital now? If so has he been rehydrated? It seems to be a case of nobody wanting to take charge? You need help too as this is so difficult for you. Have you got any family or good friends nearby? I really hope so.

Someone mentioned an infection. Has he been checked out for a urine infection as that sends people spiraling down very fast? He might well need an antibiotic? If he has only been in hospital since Monday they can't have done much for him, and he certainly doesn't sound fit to be discharged.

Good luck to you both. I have never heard this happen so fast apart from when people have infections.

I will say a prayer for Barry and you too Deb. Don't let those in charge bully you! Tell them your friends are supporting you with advice and this is not normal.

Marie x

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This happened to Chris 3 weeks ago. He had a chest infection. He went rapidly downhill. However he has not regained anything so far. He was in there a week.They fast tracked him before I brought him out. Package and everything arranged before he came home. Then he is re-assessed in twelve weeks. I wanted to nurse him at home if possible. Now I don't have to deal with any incontinence issues.

Good luck. Don't let any one bully you. It is a progressive, terminal disease.

Big hug from Jean xx

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I like your attitude. Keep it up. 💛🙏

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Update.

No infections what so ever. Blood count very good. Bloods all good. B/P spot on.

Had another ding dong with miss efficiency. She said, but you said you wanted him home... Yes I did say that... but I wanted him home back how he was....

I've got him a placement at a nursing home..... right across the road from our house... we will have to pay initially. But I don't care. He will be safe and properly looked after.

St barnabas matron is doing brilliant. She's organising the paperwork for either fast track or chc funding.

He's being transferred tomorrow. So I haven't got the hour drive to hospital tomorrow and an hour drive back.

I will be sat at the front window waiting for the ambulance bringing him.

Deb

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Hi, Debbie, How are things working out now ?

love, Jean x

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Hi there Jean.

Thanks for asking.

Loads has happened.

District nurses, adult social worker, carers and doctor have filled chc forms in. It is being fast tracked. Whatever that means.

I have decided that I want Barry home. He is fading fast. It's heartbreaking.

Been granted two carers four times daily. A sitter for two hours weekly. A night sitter if needed. Plus st barnabas nurses three times weekly and Macmillan nurses are being approached on our behalf.

Barry now needs nursing care. Sadly it's only a care home across the road. But because I'm across the road, they can call me in if needed. District nurse is happy for him to stay there until the end of next week. After which he will be home.

His stay there has been put down as respite. Three weeks in total.

I'm spending all of my time there, so it's going to be better to have him home.

Deb

Xx

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Sounds good in the circumstances.

We're at similar stage and its a great relief knowing the carers see to all nursing.

But its a sad time.

love, Jean x

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Hi deb

Glad they sorted you out

We have a good care package and to give you some rest get the night sits up and running

Mine are a god send and they come get me if needed they sit at side of his bed all the time

And I get abit more sleep too

All the best

Sue x

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