Hi I am looking for some advice my partner has ms 14 years now and recently he has got worse is waiting to get started on new medication but I feel he’s getting no help everything on me and I’m not in such good health at the minute I have spoke to his ms nurse and doesn’t seem interested he can’t walk at all now and doesn’t move off the couch sits there 24 hours a day 7 days a week I really don’t no what to do for the best I am so worried about him just feel so alone and nobody wants to no just wondering if anyone in same situation and if they managed to get help as it can’t continue like this he’s only 45 and stuck in the house feel all we do is argue just cause it is the two of us his family are no help to busy with there own life’s
Sorry to hear all that . Can I ask what types of help you have looked at? Is it worth exploring local authority / social care assistance?
I have been to his ms nurse just showed no interest at all he was in hospital for three weeks when he got out he knew what he was like and could stand up said they would get help in that’s now 10 weeks ago I’m going to doctors Tom so going to find out what help he can get in to help him as it’s hard going and it might make our relationship better if not taking it out on me thanks for your reply
I think that unfortunately it’s often necessary to chase up MS Nurses. There aren’t enough MS Nurses ( nor neurologists!) they can be overworked. Might be worth phoning ?
Thanks I ended up going to doctors got district nurse coming Tom and physio by end of week so hopefully get things moving now and I’m going to get help so I’m not doing it all myself so hopefully things will change now
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Oh well done and I’m pleased for you. I hope they can provide your partner with the motivation to exercise in whatever way he can.
Does he use a mobility scooter/ electric wheelchair or anything like that ? I can walk but not too far and , after initial reluctance, I now enjoy getting out on my scooter
Thanks yes he has a mobility scooter just he can’t get the strength to get onto it so hoping now things can go his way and get outside he never wanted to use it but at end of day his walking got to bad he had no other choice
That sounds incredibly heavy on you, and it’s understandable you’re feeling worn down and alone in this. Caring for someone with advanced MS is a lot for one person, especially when your own health isn’t great right now.
If his MS nurse isn’t being responsive, you might need to push for more support, either through his GP or asking for a referral to social services for a care needs assessment. Even if family isn’t helping, there should be outside resources like respite care, carers, or support groups that can step in. Sometimes it takes being really direct and saying you can’t cope alone anymore.
It also sounds like you need support for yourself too, not just him. Carer support groups or charities like the MS Society can sometimes help lighten that emotional load. You’re not failing by asking for more help, you’re doing what’s needed for both of you.
You’re carrying a lot, and it shouldn’t just be on you.