I’m posting on here as I’m not sure where else to go…
My Mum has had MS for over 30 years and is now bed bound in her home, losing cognitive function and is depressed. We were advised that she will soon have to move into a home so we found her somewhere fantastic - a brand new facility which would have given her some independence back and ultimately kept her safe.
Months of planning went into the move, which she agreed to, however on the day she flat out refused to go. Her carers would not get her out of bed against her will (understandably) and despite our best efforts, she has continued to refuse so we have now lost the room in the home (and lost a lot of money).
As a family (me, my Uncle and my two brothers) we are falling apart. The strain of trying to manage her illness, hire/rota/pay carers, liaise with Doctors etc. is just too much for us now - it’s a full time job which none of us can do. We all have mental health problems and in particular, I have terrible anxiety. We hoped the home would not only benefit Mum (better care facilities, independence, socialising, safety) but might bring us some relief from the situation, however we are now back to square one.
We have POA for Mum but only if a medical professional deems her incapable of making decisions, which we have been advised is extremely rare. I don’t want to put her into a home but she’s not safe where she is and I’m tearing my hair out trying to get through to her.
We have advised her that if she won’t go into a home, she will need to hire someone to look after her care package. I wondered if anyone had experience of hiring a ‘personal assistant’ for someone with MS - to hopefully take control of the care package, help out with day to day tasks?
Any advice would be greatly appreciated. This awful illness has destroyed much of her life and now it’s destroying mine…
Thanks in advance x