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.