Rehab

[Jibjh]

Hi Everyone

My husband has PSP , had a heart attack a few days ago. He has recovered well but still in hospital. Cardiac Consultant is happy to discharge him home. However OT is insisting on sending him to a rehab for a few weeks. She thinks this may benefit him as he can’t walk. I am all ok if this move benefit him in anyway..

Does anyone in this group has experience of any benefit from rehab ? I do not know much about this but has been going down hill slowly. As far as I know nothing will help him to improve his physical impairment.

please write your experience on this

Thank you very much in advance

[WifeLilyRose]

Personally I think you should insist on having him home with proper OT assessment in your home AND try to get CHC funding for full support. I think going on now to another setting is just going to confuse your husband and create anxiety while hastening his PSP. Ask what exactly would be done for him there as there is no treatment as such for PSP? Is / has he been having any physio while in hospital?

You will need to be the expert on PSP ( the PSP Association are excellent on helping you here ) as very few staff who deal with your husband will have any knowledge of what PSP is.

You need to ask to speak to someone senior in the discharge team and say that you need a proper discharge care plan and a fast track application for CHC Funding. Have a friend or family member with you for this meeting. I’m assuming you’re in the U.K.?

I speak from experience as my husband died in Aug this year from PSP, living at home with full CHC funding, after an awful 5 week stay in hospital in Summer 2021. My daughter and I had Power of Attorney and had to be my husband’s advocate, fighting constantly in his best interests. It has made us both strong and proud of what we did but was very exhausting. We send you best wishes. S X

[Stephanielayell82]

They don't realize that this disease takes so much from our love ones. My loved had a staph infection and was already wheelchair bound, lost of speech and several other things not working. They convinced us to put her in rehab as she was very weak fighting the infection. She hated it with a passion. Most people don't know how to take care of one with this disease. Please find out what your husband thinks is best or do what you feel best. Good luck!