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Husband refuses respite - Carers UK Forum

Husband refuses respite

For issues specific to caring for someone with dementia.
My husband has early dementia. He agreed to a weeks respite care and it is all arranged. Now he has changed his mind. He sits in his chair and says I don't want to go and you can't make me. The atmosphere between us is poisonous. I know its not his fault but I feel like I'm dealing with a naughty six year old putting his fingers in his ears and singing nahnahnah. Social services are no help at all. They have never been any help because we are self funders. They say if he doesn't want to go, I can't make him. What about me?
My question is has anyone ever called social services bluff? What will happen if I ring them up the day before I leave and say he has a place booked and paid for but he refuses to get in the car and they will have to look after him. Could they prosecute me? I need this break.
I understand your frustration but I don't know the answer. Someone else might. I'm feeling very 'end of my tether-ish' myself today. So sending a sympathetic hug.
When I 'inherited' my 89 y/o MIL with dementia, I tried coping with her on my own, endlessly fetching her from Glasgow (400 miles away!) to have her to stay for weeks at a time, I tried organising care-workers to come in (she sent them away), etc etc. I was on the point of collapse.

Although she did, in the end, agree (well, sort of!) to go into a home near me, had she not then I'm afraid I would have phoned social services, told them they had an 89 y/o woman with dementia living all on her own, and 'handed her over'.

To be honest, I think I would, in your case, call SS and say you will be out of the house for the following period, and then go. Can you leave the housekeys with a neighbour, or the GP maybe?

OR, and maybe this is for 'next time' - do what my friend does. She doesn't put her elderly dad into respite, she hires a care-worker to live in while she is on holiday. She simply phones the nearby agency, sets up the booking, and then the care-worker arrives an hour before my friend leaves, my friend shows her the ropes etc, and then she is off.

It costs no more than putting her dad into respite. Best of all, her dad 'can't object'!

So, not sure if you can cancel your husband's respite now and get the money back, but definitely phone up a local care-agency and see what could be done about having someone in your house while you 'run like hell'!!!

When is your break booked for?

DO NOT GIVE IT UP! Whether it's SS who 'takes over' and gets him into his respite place, or you swap to a live in carer, get that break. And book the next one as well!

Ignore any objections from your husband. I'm afraid your 'What about me?' question is the problem - YOU have ceased to exist for him in any sense other than the person he wants to have look after him. Not fair on you. So you have to 'set the rules' now, and get your breaks. That's the 'deal' for having you look after him.

All the best - Jenny
PS - remember you have no legal duty to look after your husband at all!
We have a keysafe to let carers and nurses in. I thought about getting a live-in carer for a week but how could I be sure he wouldnt send her away or be so unpleasant she wouldnt stay.
Glad about the keysafe. I would ask the agency what the drill is if their care-worker is 'ejected' - I'm sure it's pretty common! If they have the key they can probably just come and go anyway, whatever your husband says. Do you have PoA for him?

It could be, for example, that the care-agency, in such circumstances 'automatically' call SS, to inform them there's a vulnerable adult on their own, refusing care, and then SS would have to 'take over'.

I think the issue really does boil down to whether your husband does or does not still have mental capacity. If he does, then he is free to do what he wants (I think!) - but has to take the consequences (ie, being on his own!). If he doesn't, then what he wants or doesn't want doesn't really matter, providing he's well looked after.

The key thing is that you can't let him 'hold you to ransom' like this.

I had the same thing with my mum. In short, no, you have no legal duty to care and therefore you cannot be prosecuted. Up until the very last minute, my mum was refusing to go and I was holding my breath. I told her it was not up to me, the doctor insisted and said I was in danger of having a nervous breakdown!! The latter was not very far from the truth. I would give your husband a choice - respite care or permanent care if you are unable to take a break.

I would be very tough with Social Services, arrange the respite and say you will be leaving at X time and if he refuses, they will need to put emergency measures in place. It will be a very difficult time for you but who knows, your husband may behave better with strangers than with you. In my mum's case, she went eventually (under protest) and survived. I wont say enjoyed as she was determined that that would not be the case :roll:

Good luck, Anne
Hello Marriane

I am in a similar position to you and sympathise entirely. The legal side is correct as it is down to patient choice, so have you contacted your GP, or Social Worker, if you have one? How about just not talking about it for two days in order that he has time to mull over his thoughts and allow him time to feel he is making his own decision. If he still refuses, you need a mediator to come in and chat with you both. I am feeling much better, purely due to the support from others on this site and hope you continue to chat with us and we can all help each other.

Warmest wishes
A support worker came to see him "for a chat", talked about this and that, and got round to talking about respite care. She was very diplomatic about it and and he perked up about going. I'm still on tenterhooks but it looks more positive. I think Jenny hit the nail on the head. He doesn't see me as a person any longer, and he doesn't see "us" as a couple. Half the time he thinks I'm his Mum and he expects Mum to find everything for him right now and do everything for him right now. It is not his fault, its the illness but I find it so difficult to cope when he thinks I'm Mum. Then he goes back to knowing I'm his wife but still being selfish.
Hmm, well, looks like whether he thinks you're his mum or his wife, he still wants you to be on call for him all the time!!! However, hopefully before the dementia got its grip he was not so selfish....

It's great he's responded well to the SW's 'little chat' (!). Have you visited the care home he'd be going to? If you've time, that might be a good idea, and then you can tell him what it's like (nice, hopefully). In a way, you know, spending a week or so in a care home is actually just like him going to a hotel. They will lay on food, and enterntainment, and being waited on hand and foot - which is, after all, just like in a hotel. So, in a way, maybe you can present this as 'his holiday' while you go somewhere he wouldn't like anyway.....

All the very best - Jenny