"Patient Driven" respite

Really need help here - hubby is now doubly incontinent, cannot move legs at all, needs help with eating (can’t do cutlery), is moved by hoist, has carers 4 times a day … his cognitive issues are getting worse (he shouts A LOT) at me and the kids who are 4 and 8. When I had my carer’s assessment they agreed I was entitled to regular respite - BUT this is “patient driven” - ie what hubby says goes.

He doesn’t want to go, so we don’t get any respite. Their solution? I could just go away - he could be looked after at home by the carers. I said actually would be more beneficial if me and the kids could have a break in our own home (where do they think I can just keep shipping me and the kids to anyway?)… they said “it’s patient driven”, and as he’s refused there’s nothing we can do.

Please can someone tell me if I can get this over-ruled? I don’t see how/why hubby’s wants are ALWAYS put before me and the children. My 8 year old is suffering emotionally quite badly, and it would do us all the world of good knowing we could have regular breaks - where they can be kids, and I can have time to spend with them.

hi, mmm, I can see this is very difficult for you. I think you need to go back to whoever did your assessment, tell them exactly what you`ve told us. YOU and the kids need a break.

I am cared for by my hubby and 3 other carers. I am taken out twice a week and have 1 sleepover, so hubby gets a bit of time to himself. I am waiting to be assessed for respite, as my former respite breaks were free and I can`t go there anymore. They have changed their criteria for who they accept…terminally ill only…fair dos, I guess!

I know how important it is to let go of the reins sometimes and let others take the wheel.

I can`t give you the answer you need, but I do hope someone else can. As I said in the beginning of my reply, best to speak to Social Services again.

Good luck.

luv Pollx

Me again, just want to add one thing;

carers are just as important as the cared for. In fact, perhaps more so, as without a healthy carer, where would we poorly ones be?

luv Pollx

Hi there.

I can see that there is a lot of frustration within you over the issue of respite. However your hubby has said ‘No’ and surely you have to respect that? Is it because he feels rather helpless in himself and you are asking him to venture into the unknown?

Also were you aware of the overall costs of respite for someone with high dependency needs? Todays requirements can make it vastly more costly than paying for 24 hour care in the home, given the current climate of cut-backs it is understandable to prefer that option.

Of course there lots of different ways of delivering respite - what about if you had hubby cared for at home, so you and the children could day-trip, with maybe an odd night away?


This is an awful situation. The whole thing, I mean, not just the respite aspect. Social services seem to act like that they load it on family until they break. Then there’s a crisis, and then they act, because they have to, if the unpaid carer has had enough, and either had a breakdown or walked. Has it occurred to your other half that either of these outcomes is a possibility? Invalids can be terribly wrapped up in themselves and their troubles and sometimes need help to see that other people have valid needs too.