First time posting here, so just getting used to the idea. My partner was diagnosed 15 years ago with RRMS, updated 6 years ago to SPMS. During those past 6 years, she’s been dependent on her wheelchair for mobility, and hoisting for all transfers. She’s become doubly incontinent, and has now lost almost all use of her left hand, with the right hand also having lots of trouble - severe intention tremor, and very limited movement in the fingers, so it’s now v difficult to feed herself, use a computer, etc. Her speech and swallowing are also increasingly affected. Up to now I’ve been doing everything - no outside carers, because I had no idea how I could pay for them. I’ve just recently found out she might qualify for NHS Continuing Health Care, and also went to view a care home that would suit, specialising in neurological conditions.
Would be glad to share experiences, thoughts, rants, etc. with anyone in a similar situation.
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Hi, thought I was reading about me for a bit!
PPMS since 1998, hoisting, wheelchair full time for 20 years, left hand very problematic, double incontinence.
I have had carers twice a day for 12 years. Hubby did it all by himself for many years. Direct payments and CHC pay 50% each, but I contribute £100 a week.
Why not think about getting carers in? It could work, without the need for a home. How does he feel about it?
Boudsx