Last reply 3 years ago
Scared of Care

At the start of October, I was full time in work, walking, albeit badly, with two sticks. (I have PPMS). Now, for one reason or another, I am full time in a wheelchair and have had to finish my job. Iā€™m still in my early forties and was very active and sociable.

I certainly notice a drop in self esteem, from being valued and able to contribute, to feeling that my knowledge and experience is going to waste. My dear wife is looking after me full time while she is on sabbatical, but she will need a break some time soon and we don’t know what to. Has anyone used respite care, and what were your experiences?

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3 years ago

@porpoise , being apart will only worry both of you.

Consider an all-inclusive holiday and find somewhere wheelchair friendly, where you can both chill out together…..

3 years ago

Hi @porpoise (a distant cousin perhaps šŸ™‚ ) I have a little experience of a different type of respite care where someone has come to my house to sit with my son who is autistic while I can have a small (few hours) but well earned break to the cinema or pub with a friend. I even had to use their services for a family wedding that my son couldn’t have coped with so he stayed at home with a carer. The company who organised that was called ACCURO but I think they are local and not nationwide. But maybe you could see if there are any services like that available to give your wife a small break so she can either socialise or do something away from the house for a while. And then I agree with @stumbler about a longer absence may be not as relaxing as either of you might hope for.. so a holiday together that is MS friendly and maybe take the carer on holiday too just so that it would take the pressure off your wife while maybe she has a swim or a massage or just reads a book while your needs are being met by the carer. I know that a lot of services to deal with care are being cut and it is now harder to find support.. maybe your wife could get information on what help is out there for carers.. I know several years ago my daughter was considered a young carer for her brother and had access to a youth club just for young carers and they would go to theme parks or the theatre at times.. That was with CROSSROADS and I think they also help Adult carers. Best of luck to you and your wife and if you find anything out there let us know šŸ˜€

3 years ago


Have you had a social service assessment? They will be able to signpost even if you don’t qualify for statutory services. Have a look at direct payments too.

3 years ago

I agree with stumbler. I’m off to marbella soon for a couple of weeks. The apartment isn’t really totally wheelchair friendly but we know the place well brother is there for first two days so can help get supply’s then it’s just chill, hope to get some sun.

3 years ago

Thanks so much to all of you, we have a wheelchair accessible holiday coming up with family. We have looked at Crossroads and similar, which look good.

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