Hand hold needed: finding a care home for my dad with Huntington's disease

[BeautyGoesToBenidorm]

That's it, really. My mum can no longer cope with him, and he refuses to believe otherwise.

The few care homes that accept HD patients are hours away from where they live. My mum can't drive, she gets the bus to places or relies on my sister for longer journeys - I live on the opposite side of the country and I can't drive either.

It's all such a mess. My mum has done her best to care for my dad, but he's past the point of home care now.

I've spoken to the Huntington's Disease Association and they've given me a list of care homes suitable for my dad. I know we're doing the right thing, but he's so angry about it. I just want the best for BOTH of my parents.

[BeautyGoesToBenidorm]

Hopeful bump.

[Yorkshirebornandbread]

I'm sorry I've no experience of this at all. Do any of you have Power of Attorney but I suppose if your father is capable of rational decision making that won't help. Is there anyone else could talk to him, family friend, priest etc who he would listen to? Could someone from one of the homes come and talk to him? It sounds really difficult for you and all your family. Do you think your father is being angry to hide how scared he is?

[Jakadaal]

Hi sorry to read your post, Huntingdon runs in my dm's side of the family and it's a horrible disease. I remember my cousins needing to go into care homes but they ended up having respite or long stays in hospices - could this be an option. Also does your DF have a social worker? My DF has dementia and we recently got him respite through our social worker who was fantastically supportive.

[BeautyGoesToBenidorm]

Yorkshire, thank you for your kind response - it's much appreciated. My parents have a financial advisor who they've known for many years, I believe he recommended that my mum apply for power of attorney, but I'm not sure if this is actually in place.

[BeautyGoesToBenidorm]

Posted too soon!

My mum is quite 'head in the sand' about it all. Jakadaal, thank you also for replying to me - my dad doesn't have a social worker, despite me pushing for one, because neither of my parents want strangers in the house.

I feel so bloody helpless. I'm doing my very best to get help for BOTH of my parents, just to make things as easy as they can be.

[Jakadaal]

It's a tough one but could your dm be persuaded to seek a little help from adult social services. Sadly I have had this with my parents. My DF is 90 with Alzheimer's and is cared for full time by DM 85. I finally persuaded them to accept a little help using the rationale that the cared for is only as healthy as their carer and that any help is for the carer to keep the loved ones at home.

It's a really tough conversation to have and one we have many times. I also found it helpful speaking my DFs GP and he helped me persuade them to get a little help. Is this something you feel you could do?

[Hulder]

How does Huntington's affect your Dad? It's so variable - some people will need a home with specialist experience of Huntington's and some really really won't.

Locally to me, I know of people in psychiatric units who absolutely need that level of care and those who really could be managed in a standard nursing home and have no need to be so many miles from home. Some nursing homes are now specializing in 'neurological care' - while they may not have had someone with Huntington's before, they should have relevant skills to cope with someone with behavioural problems. Saying that, I have quite a few patients with Huntington's scattered about in normal nursing homes managing very well, especially ones that have experience of difficult dementia.

It really depends how your Dad's Huntington's is affecting him. Many nursing homes will accept people with Huntington's depending on what their needs are. Most homes will assess based on needs not diagnosis so it is worth asking.

If he is still able to do a Power of Attorney (for health and finance) and hasn't done one already it is absolutely vital that he does one now. Once he loses capacity it is too late. And if your mum tends to be head in the sand it might be better if you are the Attorney than her.