Refusing to care

Share information, support and advice on all aspects of caring.
Hi Emma

I have direct experience of this. My dad has HD. He refused all care for many years.

The mental capacity test was key in our case. Whilst he was deemed to have capacity it was "fine" for him to refuse all care, despite living at home with my Mum. His human rights were paramount and my Mum had none. It is the saddest part to me about the care system, that someone can unreasonably refuse all care at the direct expense of a carer.

What got him into full time nursing care for us was him going into hospital after my Mum had a breakdown (she has since been diagnosed with dementia) and me saying that him coming home was a "safeguarding issue" and that my Mum was now no longer able to safely cope with him so his health was at risk. And also that she was at risk from his unpredictable behaviour. He was then deemed not to have capacity and a deprivation of liberty order was put in place and he is now in full time nursing care. He was initially awarded CHC funding, but that has been withdrawn and we are appealing, but that is another story. He doesn't want to be in care and is violent when we visit. But need must. It is a horrible illness.

Have you spoken to your local HDA charity adviser? Numbers are all on the website. or call their head office number. Some are better than others, but they have mostly seen it all and give good advice. It was them that told me to keep saying "safeguarding issue" to get the authorities to listen.

Best of luck. Please msg me if I can help further.
Just re-read your posts. If you don't mind me asking, but is your teenager at risk of HD? I am a 40 years old woman at risk and I find my Dad's behaviour extremely anxiety making and it has had a massive impact on my mental health. I think if you say that the safeguarding issue is around their mental state and well-being you might be on firmer ground? It is also a massive safeguarding issue if he is allowed to come home and then is violent towards your teenager. I would go as far as to point out that if he is allowed home you will be holding them fully responsible for any harm coming to you or your teenage child.

Again definitely speak to the HDA advisers as soon as you can. They might be able to step in and explain things to the authorities.

Best of luck with your situation. xx
Sally, Thank you so much for replying with your experience.
Safe guarding everyone is so difficult. It is quite clear that the safest place for him is in the care home, when he's in full time then the problem of safe guarding at home goes away. I will look into deprivation of liberty order and see if anything is being done about this.
All the treads I read say that the only way they have got the 'ill' person into full time care is when the carer becomes to ill themselves to cope!! That is crazy, why should a person become so ill themselves! what sort of system is it that won't step in when 1 person is ill until 2 people are ill. It makes me so cross. When the family are not elderly this makes that less likely and so mental health once again gets affected.
I still don't see a way of doing this without causing lots of stress and anxiety for all involved :(
Oh Emma, I wholeheartedly agree with you, It is wrong and tragic. It has made me so angry with the system. I personally believe that there should be a law in place to protect carers rights that requires the caree to show a degree of reasonableness. in their desire to be cared for at home. I.e "Is it reasonable for them to come home given the needs and safety of others that live there?" If no, then a deprivation of liberty order could be put in place. At the moment unreasonable demands from those on the very boarders of mental capacity override everyone else in the situation creating utter nightmares like this. And as you said earlier what are the other options? Moving out and making yourself homeless? Divorce? All a bit extreme and supremely unfair.

Again, if you haven't already give the Huntington's Disease association a try for some advice, do.

I really do hope you can find a peaceful way to resolve this rather than having to create drama and upset. But if that is the only way, please just do it. You and your teenager are important too. It will be hideous at the time, but worth it in the long run.

Best of luck.
Emma, I have been there and got the T shirt. My husband had a bad stroke about three years ago which damaged his left side and also left some brain damage.
Eighteen minths ago he began hearing voices in his head telling him to kill people and seeing dead people in his bedroom. The Mental Health nurse was involved and also his GP in case it was a urine infection.
Three days later he attacked me in the middle of the night with his stick saying I was having affairs with men (I am 72).
Anyway it ended up with the police being called and me being removed to my daughter's house by them for my own safety until the mental health department could be contacted in the morning. He spent three months in a locked unit while they tried to get him stable. My family tried to get social work to agree to him going into a care home but he was deemed to have capacity and as our home is in both our names, I was forced, against all our wishes to allow him back home.
At his discharge meeting, I informed his Psychiatrist that I would be arranging to have a lock put on his bedroom door and that it was be locked each evening to keep me safe and they actually agreed to this. My son asked at this meeting, if he had assaulted his wife and had been taken away by the police, would she have been forced to allow him back home, but they refused to answer him!
Sorry this was so long but it just shows that the patient is the only one they are interested in, not the families at home. We count for nothing.
It seems to be a toxic mix of money (as in, LOADS cheaper for family to look after someone, than the state having to!), and fear of dear old Yooman Rights.

Have you considered going away on a lengthy 'holiday' of several months to 'force the issue'?

I used to say about my MIL with dementia that 'If she knew how much hard work she was, she wouldn't be such hard work'!!!! They just do have a clue how 'impossible' it is for us to look after them any longer.

Re divorce - I don't know, but others will I expect, whether it's actually possible to divorce someone who has no mental capacity?
You are right Jenny. I think the big thing is the "Yooman Rights". Which is good that the care system is now thinking about this after years of vulnerable people being institutionalised. But as is so often the case the "system" has flipped too far the other way and now you get awful situations like my Mum's, Emma's and Irene's.

What I also really object too is that the family are often painted as the bad guy in the situation. "Trying to deprive poor old X of their liberty" When the case is we are carers, we care about out loved ones. If we didn't we wouldn't be in the situation we would have left years ago. These are not easy decisions being made to slap them in a home for a peaceful life. These are decisions made after long-term souls searching and heartache.
Well, I guess from the SS's point of view family ARE the bad guy as our refusal to care makes things difficult (and expensive!) for SS!!!!

(The very WORST example of Yooman RIghts I ever read about was in Italy, where, I believe, there is a law that says parents CANNOT eject from their OWN house a lazy, feckless, unemployed, non-contributing son, as he had a Yooman Right to go on living in the parental home. NIGHTMARE!!!! )