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
this is a sad but all too common story.
it is the kick in the head after being beaten up for your mum.
is there any help available in the community?
look into respite care, if only so that you and your brothers/uncle can have a break.
present it as a holiday to your mum.
sorry that i can’t offer more help.
Hi Carole, Thanks so much for taking the time to respond. I should have mentioned that Mum does have carers, it’s just a full time job managing her care/health/finances from afar. Me and one of my brothers don’t live in the same country as Mum now, and the others are unable to devote as much time is necessary for this complicated illness. Thank you for the suggestions though. Hopefully we can find some sort of PA to help her. X
I feel your pain on this.
At times it can feel like a nightmare
I am not sure if you have looked into this but I’ll tell you a little bit about my own circumstances and there may be bits that make you think “that may be an idea”
My dad was diagnosed 10 years ago with PPMS and has reached the stage where he is 95% bed bound.
My wife (who I have to say is an absolute inspiration) gave up her business to care for my dad and give my mum a bit of a break.
A few years ago my dads needs were being assessed by Local Council and a care package was agreed.u
Initially it was £9 per hour for a 33 hour package which was funded by the council under “Direct Payment “ scheme.
3 years on and its now 63 hours of funding per week which we split between my wife and an outside care company.
i do manage all the ins and outs of the Direct Payment account but if required, the council will do it all.
Ironically 3 years ago I was diagnosed with RRMS but luckily I am still in reasonable health and had no time off work so far.
I hope things improve for your situation and if you want any info or help just drop me an email.
all the best
Thanks so much for taking the time to respond.
It does feel like a nightmare sometimes, doesn’t it. Which sounds awful, because Mum is the one with the illness, but we are all trying our best to make sure she gets the best care and is safe, but it’s never easy. It feels like a never ending climb.
Your wife does sound inspiring, what an amazing gesture to give up her business to help care for your Dad.
Thanks for explaining how his care package works, it definitely helps to hear how other people manage. I might try to speak to the council about the payment side of things.
Sorry to hear about your RRMS but glad to hear you are in good health.
Thank you again. X
Hi there, I wondered if you were still looking for help for your mum? I am a Personal Assistant and I am looking to support people with MS. Apologies if you don’t require any help at the moment. I can be contacted through Curam or directly on here. I have an e-mail if you’d like to message me. Best wishes, Helen