Mum with MS and I'm no longer sure where to turn

So this may be a long post but I’m not sure where else to turn. My has had RRMS for 17 years now and it seems she has now got secondary progressive. Her cognition has gone down hill slowly over this last year especially and her mobility has decreased making her have frequent falls.
Her last big fall has resulted in her in hospital for nearly 2 months in neuro rehab where she lost short term memory and the use of her legs which has slowly come back but she is nowhere near now where she used to be and the OT and physio feel like she has reached her full potential which is really hard to come to terms with. She’s gone from being quite independant to not at all. She will when she is discharged (which will be soon) she will be going to a step down bed in a care home to then see where she goes next, either home with a package of care (which they don’t think is the best option) or assisted living. My mum is only 54 so it’s so hard to see but I’m just wondering if anyone else has a family member in assisted living and how they find things there and if it has helped them?
She wants to remain as independant as possible but she is so unpredictable and her falls have reduced and mobility has got a little better but not stopped as she still sometimes gets up and tries to walk unaided resulting in a fall so her being alone for long periods of time is really not a good idea.
Any info that anyone could give me or experiences I would really appreciate.
Thank you

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Hi love. Oh what a worry for you and an awful predicament for your dear mum and only 54…how cruel MS is!

It is definitely a good idea not to leave her alone now. Maybe a live in carer system (needing 2/3 carers on shifts) or a care home or assisted living with close supervision.

As for mum’s mobility…falls are just too risky, so a wheelchair part time may help. Falls were a real daily problem for me too and I lost all mobility due to full time wheelchair use. I did also use a walker for a while. Physio could still help your mum.

Why not look at some care homes and assisted living places?

love Boudsx

Hey Beth, just wanted to chime in as my mum is in relatable situation; age, injuries, dilemma over next steps etc. I empathise so much with you when you say that it’s really hard to come to terms with. The changes that happen in a year or a few can feel so startling to summarise, especially when it’s a specialist giving you matter of fact assessments. So my heart goes out to you, and I wish you and your mum health and happiness.

Right now my mum lives in North London in her council flat with a mostly-council funded package of care provided by an agency (four visits a day by two people). The problem is that it still requires a lot of family management/support for the basics (e.g. coordinating, supplies), and the council care package for her home is so… incoherent, bordering on inhumane. We’ve had two care agencies and there’s always a different set of care workers coming in, they’re never really able to focus because of their massively knackering and packed schedules of all the people they need to go and see, there’s always important details that go missing: even things like taking medicine, taking care of healing injuries, being kind and sociable! It feels like a lose-lose for everyone involved; the daily grind hurts a lot to go through.

On top of that, receiving care exclusively at home has become really isolating for her. Like your mum, my mum has had a lot of unpredictable falls. Eventually this meant almost daily emergency visits to her house to pick her up off the floor, something that became incredibly stressful to cope with. Our care agency doesn’t provide something like an emergency service, and — in our stressed heads, at least — it seemed impractical to be calling an ambulance every day to do something that we could do. After an ankle fracture involving a fall in the presence of carers at home, her mobility has decreased to the point of being basically permanent wheelchair bound. Now the headache involved in changing that care schedule / arranging transport / getting someone to accompany her has made keeping in touch with people much harder. Not to mention regular specialist care. Obviously COVID19 has put a lot of social activities on hold but I have no idea how we’ll cope after things start happening again.

It’s been a lot to take in and we’ve been so wrapped up in just getting by until recently when we got a slight increase in the care worker allocation, which has allowed me to step back just enough to take stock of the situation. In that respect, we’ve been grateful for a care package as it has been really helpful as a stepping stone from nothing to something. But it’s important to assess whether it will cover all the bases for you.

So, like you, we’re now really considering a nursing home. In my view, this would be a positive alternative to an at-home care package: the long-term promise of being cared for in a more structured, reliable, adaptive and social environment, where her needs can be met regardless of family availability and where her sociability can express itself in community. Ideally we’re looking for somewhere with an arrangement for ongoing physiotherapy (which the NHS in our area can’t provide) and close enough to older family’s homes so that they can continue to visit regularly.

But it is also a big change! We’re not sure how mum will take it (and to what extent she notices), we’re a mixture of hopeful and anxious about finding somewhere safe and capable and compassionate and attentive. It seems like there’s lots more places for old people than for people with MS-related physical and mental struggles, so we’re worried about whether she’ll fit in to the home’s care regime and the community. The council is being slow about the assessment process too, and we don’t entirely know what they’ll say about financing.

Of course, it is just very sad and a lot to bear for everyone. That needs to be embraced with a lot of compassion. When I look deeply into the situation, I am ultimately certain that we and you can figure out a way for our mums to be healthy and happy in life. I hope this perspective helps you in some way. I can only imagine what you and your mum are going through and I wish you both well.

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Thank you so so much. She’s been having some physio but they feel they’ve gone as far as they can now it terms of her progression. She has been walking with a frame but not fully stable so it’s just really hard to see as she was nowhere like this before she went in hospital, MS is just awful isn’t it!
Each fall seems to set her back but she doesn’t seem to understand risk so will still try to walk unaided resulting in her on the floor and it’s hard to keep telling her.
We have a wheel chair for her which will come in helpful I just sort of reallyt don’t know what will happen next.
She really hates the thought of a care home but I don’t know if assisted living will be fully effective. It’s so hard to tell with the unpredicability of MS.
I hope I make sense as my head is everywhere!

thank you so much again for your words

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Thank you for sharing your story and I can only sympathise with you as I know how tough it is.
It feels like it’s been a slow build up but has come out of nowhere if that makes sense?
Yeah even with care I can imagine there is still such a big strain on you all as care is still limited, it still feels like it rests on you. I know what you mean, that is something that worries me… the type of care she would get. I know that I would care for her and do everything right but I just can’t commit to that and she doesn’t want me to either. Still the guilt is horrible no matter what for me.
I’m so so sorry to hear about her decline, there’s just no way of knowing what’s going to happen with this terrible disease. It’s so unpredictable.
Yes that’s my exact thoughts on the subject of care. I feel like the stigma of care homes is daunting and people see it as just for the elderly but I want her to be properly cared for as anyone deserves and for there to be less anxiety around her care if that makes sense? Knowing that someone would always been around is such a comfort. I really really do feel where you are coming from. My mum agrees with assisted living but we really need the physio to continue and in the community here they come for half an hour once a week so I can’t imagine not having acess to any, it’s hard enough when it’s so limited nevermind having non at all.
This is the thing there really aren’t many places that are specialised for people woth certain disabilities and for younger people that need more support so it’s really hard to know what is best. It can be a really slow process, we are waiting for a bed in a home to be found for them to assess her there and she’s gutted as she has to isolate when she gets there so we won’t be able to see her over Xmas… which feels like another kick to the stomach. Such a long process for families and people in need it’s really hard to wrap your head around.

I know that we will do the best by our mums whatever way that we can… the strain that comes with it is another thing. Your words have really helped me and made me feel like it’s not just me that has all this going on.
I really hope you get some answers from social care and that the ball starts rolling and I hope your mum accepts all the help she deserves as I hope mine does too, I feel like my mums young age brings on a stubborness I can’t blame but it also makes things so much harder.
Keep me updated on how you get on, I keep my fingers crossed for you and your family!

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I am also looking at nursing care as an option for my brother and can relate to you. Good luck.