I have a friend with Secondary Progressive MS and things are now getting to the stage where his wife is finding the care very difficult and it is starting to impact the whole family quite severely.
There is not much that can be done that isn’t already being done to keep him at home, so it could be time to start thinking what next. I can’t help but think that the time is coming where some residential care is needed, either respite or full-time. But its a very difficult move for anybody to make and poses so many questions around where, how, financing etc. He is in his 40’s so is quite young so getting the right place where he will have peers of a similar age is important.
Any experience of anybody in a similar position who can help would be much appreciated.
hi mark just seen a post that has not been answered for 2 weeks. can’t think of much to say that could help. however maybe your friend would appreciate having a mate to accompany him when he goes looking at residential homes. i know that his wife will want to do this but maybe if he wants a second visit, then a second opinion from a friend will help. you will be able to offer an opinion based on being a similar age. damn it, it makes me feel so upset and helpless to read of this. be strong for your pal.
i thought this might give you some insight
my husband has advanced MS , we also have a disabled daughter together
Hubby was placed into emergency respite care after I finally lost all patience with the services at home who were supposed to be supporting us and weren’t doing there job very well
it turned into a full time placement after I could not bear to keep going in the same fashion
roll forward 6 months and I want him home , I’ve identified ( I think ) what needs doing to improve matters at home and am in talks with the social worker to see if it’s achievable , it will involve adaptions to the bungalow ( again ) and some co operation from the local authority about providing carers rather than throwing me a sum of money through a budget and then leaving me to it whilst controlling what I do with it
the nursing home he is in , although gold standard in this area , hasn’t alleviated much of the troubles , and indeed now I have to travel to see him to get the necessary co ordination done
oh and the paperwork ! And financial burden ! Nobody mentions that until you place them permanently !
Hi Do you have to pay for care homes then? I thought that they were state funded. B
Hi Anon, care homes aren’t exactly state funded. It depends on individual`s financial circumstances. This is in England…different in Scotland…dunno about Wales and N. Ireland. Boudsx
Sorry only just seen this thread… maybe you don’t come on this forum anymore…but wondering how things are now. Did hubby come home? Boudsxx