I’ve just joined the forum looking for advice and support for my mum, she’s just turned 60 and has suffered from Primary-Progressive MS (PPMS) for the last 6 or 7 years.
She’s sadly reached a point where she’s completely lost the use of both legs and her hands are very poor (she can’t get food from a plate to her mouth for instance), so she currently needs help with everything from washing to eating.
Mentally she’s still doing great and is pretty good at keeping herself entertained, mostly trying to learn a new language. But she’s also a very proud women and hates the though of attending her local MS Society or any groups, largely because she’s upset by seeing other people with MS that aren’t in quite as severe a position.
She’s had an excellent and reliable carer through Equal Lives for the last few years who has made everything much easier. However her carer is due to retire at the end of the month and we’re pretty worried about the move back to agency care.
Because of her fairly rural location just outside of a town called Great Yarmouth in Norfolk most agencies we’ve ever been with have simply failed to turn up, or turn up hours late.
I’m desperate to look into alternative care arrangements and support, and have been looking into the possibility of a live-in carer for her.
Do any of you have live in carers currently? How much care support should social services really be providing? At the moment they seem reluctant to offer anything more than three 30 minutes visits a day, which just isn’t enough?
Any information or advice you might be able to offer would be much appreciated.