Not sure what to do next…


My mum has progressive ms and it’s becoming very difficult for her. My siblings and I live far away with me in a different country and we cannot get to her often but my dad is there as a full time carer. She is unable to walk most days and when she can it’s a few steps only. I am with them now and she currently has an infection which is mimicking signs of a relapse and making her very confused. In addition, whatever limited mobility that was there is gone for the moment. We know what’s needed in these situations and will continue treating her and monitoring.

But I am riddled with such guilt of not being closer to them or having a more extensive care package in place. It’s so difficult to get care organised. We have spoken to the council and had an assessment with no reply as of date. We are due to have a private assessment next week but know that we will not be able to afford the level of care that is necessary long term. We aren’t sure of where to go next or what to do. If anyone has any advice that would be very helpful.

I’m sorry if the post is not informative enough. My brain is all over the place at the moment.

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Hi, I receive care on Direct Payments.
The charges anyone is expected to make is based on their incoming/outgoing costs…and their DREs ie disability related expenses.

WE appealed our 1st and 2nd charges and it was reduced quite a lot.

I would suggest you have a Social Services care assessment. I doubt they would take notice of any others.

Our 2 daughters live away and feel that if my care is looked after by the authorities, they dont need to feel guilty.


I would chase the council /social services with an emphasis on a “vulnerable adult”

I understand your feelings of guilt but they will not help. Try not to beat yourself up about where you live.

Good luck

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I wanted to reply to offer support - my mum lives alone age 74, with SPMS and my sisters and I all live away. It’s so difficult - she falls a lot in the home, her mobility is poor, she is housebound (through choice) and has to rely on a sister and paramedics when she falls in the night. She receives 4 carers a day (which was a fight to get) but barely lets them do anything.
My advice is to keep pestering social services/adult care and chase up appointments and write down any plans that professionals suggest in ‘action plan’ emails copying other people in. Ask what she is entitled to based on a care assessment from social services and involve district nurses, GP’s surgery and OT if she has one.

Our main problem is my mum refusing care. She hasn’t seen a neurologist in about 10 years and puts any hospital letters in the bin. It’s hard to see the rapid decline and the absolute unwillingness to attend any appointments or consider a move into safer accommodation. We have tried talking to her, I’ve involved social services and adult care teams and they all get to a point where she refuses input so they close the case. Anyone have any advice on this? She fell in the home and broke her neck last Easter and refused to go into hospital I literally had to beg her to go with paramedics. The problem is with limited services available anyway no one is going to chase up her care if she refuses it.

I’m sorry to read of the issues you are experiencing with your Mum refusing care. I know first hand how difficult it is when a loved one refuses to accept help and like you, I had social services tell me that if Mum wouldn’t accept help, there was nothing they could do.

However, if she is at risk (and the fact you mention she had a serious fall suggests she is), then mentioning the words ‘vulnerable adult’ and ‘duty of care’ to social services spring to mind! Especially if it is difficult for you to manage your Mum’s care (even if it isn’t, it doesn’t hurt to let SS think it’s an issue), and insist they get involved.

Finally, I know none of us like to think of our loved ones deteriorating cognitively, but perhaps her GP could arrange for a capacity assessment? She may not have full capacity to make decisions in her own best interest.

I hope some of this may be of help to you… just going on personal experience with stuff I tried.


Hi, thank you so much for taking the time to reply and the advice. It is comforting to hear people having been through the same experiences. I have had a capacity assessment and GP said mum has the capacity to decide how to live - I totally agree of course with this but it’s so hard to watch when I really feel life would be more comfortable if she accepted/allowed the care. She is so stubborn - but I am reminded that this is how she has fought this horrible disease for so long. Thank you so much for reaching out.


I am glad your Mum has already had a capacity assessment from her GP. I’m guessing it has left you with mixed feelings: on the one hand it is good to know that your Mum has capacity and no obvious cognitive deficit; on the other is it worrying because that capacity assessment result means that she is free to make decisions regarding her own health care, even if they are unwise ones and could potentially put her at risk.

People with capacity have the right to make their own decisions even if they are bad ones and not what we would wish for them. All you can do is to be there for your Mum and let her know that you are there. Your Mum’s refusal to accept care and throwing letters in the bin might be her way of dealing with the dx of SPMS (even though technically, she’s not dealing with it!).

If she won’t accept actual in-house support, would she accept having something like Careline installed? It offers unobtrusive support for the vulnerable person and peace of mind for their family.

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Take care,