Mum, aged 90 with dementia, may be asked to leave care home - what can I do?

[SlowDog]

My mother is 90 and has dementia. She is self-funding in a care home.

A while ago the care home asked us to fund 6 hours of one to one care per day for my mother because they said she was very anxious and it would benefit her to have this one to one time. It was pretty expensive (the care home is already of course not cheap!) but I wanted my mother to be OK, and she has a reasonable amount of savings so I agreed to it (I have power of attorney over financial affairs, but not health & social care).

More recently the care home says my mum's behaviour has become more difficult for them to deal with because she is so often calling out and asking for help so they applied for funding for full time one to one care. The care home told me that if the funding was not approved, my mum might have to leave the care home as her position there might become "unsustainable".

The one to one funding was refused, the NHS person at the assessment said to me "Nobody will fund one to one care for this, this should come within normal specialist nursing care".

Now the care home has requested a meeting with me, I expect they plan to give my mum notice to leave. I asked social care what would happen if I couldn't find another care home to take her and they said they wouldn't be able to help/intervene because she is a self-funder. I asked if she could be thrown out of the care home without anywhere else to go and they said it was up to the ethics of the care home.

My mum has dementia, she doesn't understand what is going on, and she has a lot of other care needs (she has funded nursing care) and is incontinent.

I don't believe it's good for her to move at her age and in her condition but I guess there is nothing I can do about it. I will start looking for another care home to take her but I worried what will happen if I can't find one.

Has anyone got any advice / been in a similar position?

This may have been said but she is absolutely entitled to an assessment by the council and support to ensure her care needs are met even if self funded.

As a first step she needs seeing by her GP to see if the calling out could be due to pain - it often is due to physical symptoms.

And if not that then a review by Older People's Mental Health.

This is a health problem until shown otherwise and needs treating.

Not all dementia units are equal. When we were looking for my dad we specifically went for one that catered for ‘the whole dementia journey’. I now have experience of the other via another relative and there is no way they would have coped with his behaviours. Even the one he is in now applied for 1:1 via CHC (and it was granted) - but it sounds like this has been refused in your case.

I echo what others have said about social services. They like to claim that they don’t have any responsibility if you are self funding but that is incorrect. Everybody is entitled to an assessment under the care act, and you should ask them to broker a placement on your behalf, especially if there is a prospect of your own funding running out- and especially in your position I would say that a social worker should be involved to ensure that the placement is appropriate.

Oh, and find out if the home has referred to the community mental health team. In my experience they are about as much use as a chocolate teapot (my dad has vascular dementia, not really something medication helps with) but it sounds like they might actually be able to help in your case, and the home should definitely have done a referral as a matter of course in these circumstances.

I can't see how that would be different in another dementia unit.

Because as a few of us have said, not all dementia units are the same. And as the NHS rep pointed out, it is not unusual behaviour so it is likely that other dementia care homes who would be willing and able to deal with your mother's behaviour.

I personally wouldn't try to involve Social Services unless you are in the last chance saloon and your own efforts don't find another placement.

We had to move an aunt from her former (ordinary residential) care home when her dementia became more advanced and she was bothering the other residents.

The move (to a care home with a dementia wing) actually went far better than we’d feared. TBH she barely seemed to notice, and was there (it was a lovely care home) until she died.

This.

No one will tell you about NHS Continuing Care but if the needs are high enough to qualify then it should be awarded.
We did our own research on it and also had a specialist solicitor who was both very helpful and also au fait with different nursing homes etc in the area.

My mother was very difficult to place due to complex needs and behaviour but we did eventually find an excellent home that was prepared to care for her. Once she was settled she became easier (not easy though) to manage as the staff were more used to such high needs.
It took a lot of leg work and rejections to find a suitable place but they do exist.

I work in a specialist EMI home. We have had residents come to us from other EMI homes as they "couldn't meet their needs" One turned out to be because she used to get up and wander out of her room at night. One because she used to sing in the night.
Go and talk to other homes. The one your mother is at sounds like some near us, they only want bed bound people or ones who are very easy to manage and comply by sitting and being quiet.

it’s not a forgone conclusion you would get it. It’s given where the “priority need” is nursing rather than care. In practice, does she need a nurse making decisions on a daily basis because of the severity and unpredictability of her condition? Or can a carer be trained to look after her day to day?

So ask for the assessment but don’t pin your hopes on it.

I think a CHC application will have already been done, and refused. The OP states that 1:1 funding via the NHS was rejected - this is now included in the CHC application, as far as I know. My df was awarded CHC last year after they requested 1:1 care. So they’ll have had to apply for CHC to apply for 1:1- I think.

Thanks again for all the helpful comments. My mum was given funded nursing care (a relatively smallish amount of money) but not the 1-1 care (a much larger amount of money). We've been called in to the care home on Tuesday for a chat, I guess they are going to say she has to leave but we will see.

Also I'd just like to mention Care Rights UK (carerightsuk.org) at this point, someone recommended them to me and I had a very good 1 hour phone call with them this morning, they had lots of useful advice.

How are things going, OP?