PSP Association
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Respite but not respite

Hi

After all the problems over the last couple of weeks, with me not being able to get Colin out of bed to the commode, his continuous leg shaking, and pain in his shoulder, then the hoist issue, shall we have one or not, he decided that if he did not eat, he would not have to poo, and he would die quicker. Well the hospice OTs came round to see the problem with him getting out of bed, and finally could see how bad things had got, so they ordered a hoist, which was meant to come the next day, but the consultant at the hospice decided that they wanted Colin in the hospice to try him on baclofen and to see if he could cope with being hoisted, so he has been in there since Wednesday.

They are giving him baclofen, but I can’t see any difference, Colin has decided he definitely does not want to go in a hoist. So now going to use disposable bed pans as the plastic one sticks to his skin, and also use pants with pads.

I hoping he can come home later this week, I miss him so much. I go to the hospice every day and feed him his lunch, but leaving him is very hard, but least he’s eating well.

Thanks for listening and for all advise and ideas.

Love and hugs

Helen xxxx

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Oh Helen so sad, my heart breaks with this horrible illness, takes away so much, hoping Colin is home soon, hopefully he will accept he needs the hoist? George’s legs are getting weaker, asked the OT for a different rota stand, hoping we will get it soon. Big hugs to you Helen I think you need it. Yvonne xxxxx

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Thanks Yvonne we have had 3 different rota stands, it now that Colin cannot sit up and then get up that is the problem, so Rita stands now pointless.

Thank you for my hugs and back to you

Xxx

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Oh dear ❤️❤️❤️❤️❤️

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Helen they surely don't expect you to lift him onto the bed pan? You should be having carers there with you. Maybe before he comes home you can ask the Hospice can you have some additional help? You are not superwoman?!

I know what you mean about missing him Helen. I hope you have some time left but he sounds very ill now.

Hugs to you as I think you need lots of them just now.

Marie x x

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No they won’t expect me to lift him, if I can’t get a bed pan under him then he will just do it and I will clean him up after, can’t see any other way.

Thank you

Xxxx

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Helen have you got CHC funding? I am sorry but I can't recall.

Marie x

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No not yet, but am about to get the ball rolling, going to ring social services this weekxxxx

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Helen you need the support of the social worker to fill out the forms but the funding comes from the NHS so you also need the support of the Community Matron. You need them both to see your husband. This is if he is at home.

Having said that as your husband is in hospital they can fast track it from there and should be doing so! Kevin has posted reams of stuff about this so read his posts. They will really help you. He has even given the words you need to use when speaking to them at the hospital. It has worked for a lot of people.

Love to you.

Marie x x

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Thank you he is in a hospice not a hospital, and hopefully be home later in the week, I can contact the community nurse aswell. And I will read Kevin’s posts again on it.

Thank you xxxx

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Helen ask them to help you at the Hospice. They should do it for you.

Hugs to you.

Marie x

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Ok thank you xxxx

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You are right about the hospice being the best place. Our local hospice have helped me enormously and filled in all the gaps left by the NHS. My wife also hates the hoist. When in hospital she saw a hoist in the ward she would get very agitated. An occupational Therapist diagnosed a comfort recline sling which made hoisting less of an ordeal. I thoroughly agree with Marie about getting help from the hospice in applying for CHC funding.

I couldn't manage what you have been doing.

God bless, may it all get sorted. Ken

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Hi Helen

I'm writing a separate post in this thread, but for now, telephone the GP and ask them to make a referral for CHC.

Telephoning the Soc. Serv. is the long way around and they will kick off on an assessment under their means tested care route in the first instance. Which will at best give you double wait times.

If you've already telephoned the Soc. Serv. no harm, do telephone the GP too(as above).

Warmly

Kevin

xx

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Ok will do this as soon as my head is a bit straighter it feels like the massive lightening and thunderstorm in my head at the moment, can’t think straight xxxx

Thank you xxxx

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Yes, it was weird. I had a touch of vertigo at one point just before the lightning started.

I think it would take a direct lightning strike to my head to sort my brain out sometimes!

Goodluck.

xx

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I just feel so muddled, I think my routine has taken a big hit with Colin suddenly taken into the hospice, not sure yet when he’s coming home, but travelling there every day, doesn’t give me much time to do things at home.

Xxxx

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I understand.

I do hope things get better for you both soon.

xxx

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Dear Helen, it must be really difficult when the refuse to use hoist, Ben was using rota stand until a month before he died but then the hoist was vital. He had a sit in hoist that you didn't have to remove as he sat in his chair, no lumpy bits and seams to cause sores, howerever pad changing became a massive issue as his legs were clamped together like a vice, impossible to seperate. Eventually he had to stay in bed, naked to the waist laying on bed pads and flat pads that could be changed fairly easily to keep him clean and comfortable.he was so rigid that turning him must have been very uncomfortable for him but he never complained or winced to indicate pain. Hard to believe you don't get CHC funding or that they didn't immediately put him onto fast track funding, you really shouldn't be the one pushing that they should be helping and supporting you so that you can get him home with full care in place. Wishing you lots of love.

Kate xxx

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Sorry to hear this news but I hope the hospice are able to assist you further. Baclofen did nothing for Mum either but that was a while ago now she tried it.

If possible try to get some good sleeps whilst you can before he comes back home.

Mum wouldn't use the stand aids and hates the hoist but currently still uses it. She can do weight bearing at times but chooses not to anymore.

Hope you manage to sort the CHC funding.

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Sorry to hear about the problems you're experiencing... hang in there.

Tim xx

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Hi Helen

I'm sorry to hear how difficult it has been for you both.

You write so calmly about what must be a massive struggle. It must be heart wrenching. You must have great fortitude.

As another poster said, "Hang in there."

You are doing an amazing job.

Warmly

Kevin

xx

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Thanks Kevin xx

Love and hugs xxx

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Dear Helen,

How much effort to get a PSP patient to say goodbye with dignity, love and peace!

Helen I send you my admiration and solidarity.

I hope you find sensitive professionals to help you.

A big hug.

Luis

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Thank you luis xx

Love and hugs xxx

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