Refusing to care

[Emma_18021]

Hi All, advise required please.
Can a spouse refuse to care? It is a very tricky situation with HD sufferer currently in respite care. NHS continuous care plan in place. However staying in care full time is not what the sufferer wants, although they don't understand anymore what this evolves. How do I get help to ensure his needs are best met? He needs to be in care home full time but it is against HIS human rights to force him. Nobody can cope anymore and he's not getting the care he needs at home.
Please advise if you have been in similar situation maybe with Dementia or similar illness.

[bowlingbun]

The carer and caree should, at very least have been given their own advocates. The person with HD should have a mental capacity assessment, but ultimately, no one can be forced to care. I had to tell my mum's hospital that the house would be locked and would not be unlocked, and critically, mum only had the key to one of her front doors, I was the only one with a key to the other one. It was all horrible, but ultimately mum went from hospital into permanent residential care.

[Emma_18021]

We are trying to get a mental capacity test done, hopefully this week.
But as the house is his home can I refuse him entry? If he wants to return do I have to let him in? what will happen?
The problem is this is all very upsetting for everyone involved (inc teenager) we are trying to avoid any more traumatic experiences. All the professionals involved seem to say something different. I can't get a straight answer.
Thanks for replying x

[bowlingbun]

Before any decisions are made, there is supposed to be a Carers Assessment. The teenager should also have a Carers Assessment, if he/she does any caring. I believe Young Carers Assessments are done by the Childrens department of Social Services. Insist that they follow procedures. If you go to Quick Links, top left of this page, and then go to the Main Site, you'' find lots of information. Our Carers UK helpline - email, don't ring - will also be able to advise you. Has he had an NHS Continuing Healthcare Assessment?

[Emma_18021]

Assessment's have been done and NHS continuing care has been done and he qualifies. It seems everything is in place for him to be in full time care. However there has not been a mental capacity carried out so he can refuse to be in care. It seems that unless he agrees to be in the home himself then no one can force him even with everyone in agreement and funding in place. It seems like no one knows what to do next. Thank you for the info, I will check it out.

[hamsterwheel]

I'd say - insist on a capacity assessment.

[jenny lucas]

What a desparately sad situation. HD is a hideously cruel illness....

I can well understand why the thought of having your husband home again is daunting, to say the least.

Remember that, irrespective of what may be in HIS best interests, YOUR interests are also involved. To be frank, even if the doctors said his 'best interests' were to come home, YOU have EVERY right to say you will NOT be looking after him!

And, again, even if he does have capacity, and can insist on coming home, again, sadly, you also have the rigtht to refuse to look after him!

In a way, he's caught in a Catch 22. If he does not have legal capacity any more, then he has no right to choose to come home, rather than stay in nursing care (if that is deemed to be in his best interests now). If he does have legal capacity, and therefore can insist on coming home, there is NO reason for you to look after him, or even be in the same house. In fact, if you want, if he has legal capacity you can simply divorce him, force a house sale, and take half the house value for yourself.

That's a bit 'brutal' but at the same time it remains your choice.

Looking at it slightly differently, again, this is a dreadful thing to say, but how long has he left, do you think? If it is 'not that long' (a year? Two -? Not sure how life-limiting HD is when it gets to this stage of cognitive decline/incapacity?)

Am I right in thinking you have a teenage son/daughter? If so, then, really, THEY are your priority, not your husband, even if he cannot see that. If it is less distressing for them to have their dad (is he?) in nursing care, rather than at home, then I would say that is what should happen, even if, sadly, he cannot see that.

[jenny lucas]

One thought - not sure if this is the slightest possible, but would it be on the cards for your husband to come home 'at weekends'? Sometimes, it's possible to cope with caring for someone with high care needs if you only have to do it for short periods?

Trouble is, of course, that is he has lost the ability to understand the impact of his illness on you and your son/daughter, then he would probably refuse to return to the nursing home after each weekend? (Plus it may not be practical of course).

[Emma_18021]

Thank for all for the advise.
I am trying to avoid the distressing situation of having to refuse care. Nobody here can cope with him being on the doorstep and going mad because he can't get in. The house is no longer in his name but has been his home so I believe some rights do remain. Divorce and refusal of entry can be done however it shouldn't have to come to that. If he gets told this is going to happen it will cause a violent outburst. He cannot be in the same house if he knows this is happening, it's to risky. Hence why we want to have it agreed he's to remain in the home whilst he's there.
Once he's there permanently he will not be able to 'come home' on respite as he will refuse to go back but we will be able to take him out.
We want to refuse care and his future care agreed now without trauma. Do you think that can happen?

[Emma_18021]

He could have years left (its the most horrendous disease) and the nature of the illness results in chance in behaviour. He's not safe to be around, duty of care must remain with teenager however they still saying they can't keep him and if he wants to he can come home. They will put more care into place but that's not 24hrs and they are not going to keep us safe!!