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

SlowDog · 2023-10-17T15:40:25+00:00

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?

TheShellBeach · 25/10/2023 16:46

How are things going, OP?

Original poster

SlowDog · 20/10/2023 14:17

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.

OP posts:

ImNotAsThinkAsYouDrunkIAm · 18/10/2023 14:24

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.

MereDintofPandiculation · 18/10/2023 10:07

gotomomo · 17/10/2023 17:06

You need to ask for an nhs continuing care assessment, this would then fund the care she needs potentially at a specialist facility for dementia. Many standard care homes cannot cope beyond a certain point of illness.

Note this is not social services funded but nhs, different department, different rules

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.

MrsCarson · 18/10/2023 09:53

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.

Lifeinlists · 18/10/2023 08:58

gotomomo · 17/10/2023 17:06

You need to ask for an nhs continuing care assessment, this would then fund the care she needs potentially at a specialist facility for dementia. Many standard care homes cannot cope beyond a certain point of illness.

Note this is not social services funded but nhs, different department, different rules

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.

GETTINGLIKEMYMOTHER · 18/10/2023 08:31

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.

Shellingbynight · 17/10/2023 22:29

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.

ImNotAsThinkAsYouDrunkIAm · 17/10/2023 20:08

ImNotAsThinkAsYouDrunkIAm · 17/10/2023 20:04

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.

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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.

ImNotAsThinkAsYouDrunkIAm · 17/10/2023 20:04

SlowDog · 17/10/2023 18:15

Thanks for all the helpful comments. She is already in a specialist dementia unit, that's the bit I don't understand! When she went into the home I was happy because they had specialist dementia and nursing units so I thought that however her care needs changed they would be able to look after her. Her care has been fine up to this point, but it's hard for me to believe that she is so out of the ordinary for a dementia patient that they can't look after her. She isn't violent or anything (as far as I've ever seen or been told), they just say that her constant anxiety and asking for help is affecting other residents. I can't see how that would be different in another dementia unit.

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.

AnnaMagnani · 17/10/2023 19:42

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.

Keha · 17/10/2023 19:20

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.

TheShellBeach · 17/10/2023 19:05

Sorry, I pressed "Enter" too quickly.
A small dose of lorazepam often helps dementia patients who are very anxious and calling out.
Having different staff who are willing to try other things to mitigate her behaviour (in a different home) would also probably help.

TheShellBeach · 17/10/2023 19:02

Chowtime · 17/10/2023 18:58

Could she not be prescribed something to help deal with her anxiety? I don't mean a sedative of course, just there might be something that would help.

Don't move her. If a specialist dementia unit can't help her, no-one can.

The only things that help with anxiety are sedatives.

helpfulperson · 17/10/2023 19:01

When my dad became like this the elderly mental health team got involved and he was prescribed fairly heavy duty anti anxiety meds. Yes they did make him quite drowsy but his quality of life was much better living in a slight daze than very anxious and very confused.

Chowtime · 17/10/2023 18:58

Could she not be prescribed something to help deal with her anxiety? I don't mean a sedative of course, just there might be something that would help.

Don't move her. If a specialist dementia unit can't help her, no-one can.

Daffidale · 17/10/2023 18:55

Similar to @lilao and @Helenloveslee4eva - don’t be afraid to move her. My mum had similar - in “posh” home, with dementia unit, increasingly anxious and eventually they wheeled out the “can’t meet her needs” line. I was furious. It was awful stressful trying to find somewhere else at just a few weeks notice.

but…

we moved her.

I talked to the new home about her anxiety. They put in place lots of things to manage it. Small but sensible things like giving her a room near reception so she could see people, staff “popping in” frequently etc etc

She’s now really settled and honestly moving her was the best thing we did. All her anxiety has gone and it’s so easy.

You have the care assessment from the NHS team already which will help with talking to new homes.

I had to take time off work to call care homes, visit them etc. Use the carehome.co.uk to find local places that do both dementia and nursing care, and have decent reviews

hattie43 · 17/10/2023 18:41

What a worrying situation .
It shows the complete lack of care for our elderly. Very worrying future for all .

SiouxsieSiouxStiletto · 17/10/2023 18:23

SlowDog · 17/10/2023 18:15

Thanks for all the helpful comments. She is already in a specialist dementia unit, that's the bit I don't understand! When she went into the home I was happy because they had specialist dementia and nursing units so I thought that however her care needs changed they would be able to look after her. Her care has been fine up to this point, but it's hard for me to believe that she is so out of the ordinary for a dementia patient that they can't look after her. She isn't violent or anything (as far as I've ever seen or been told), they just say that her constant anxiety and asking for help is affecting other residents. I can't see how that would be different in another dementia unit.

What help is she getting for her anxiety?

Original poster

SlowDog · 17/10/2023 18:15

Thanks for all the helpful comments. She is already in a specialist dementia unit, that's the bit I don't understand! When she went into the home I was happy because they had specialist dementia and nursing units so I thought that however her care needs changed they would be able to look after her. Her care has been fine up to this point, but it's hard for me to believe that she is so out of the ordinary for a dementia patient that they can't look after her. She isn't violent or anything (as far as I've ever seen or been told), they just say that her constant anxiety and asking for help is affecting other residents. I can't see how that would be different in another dementia unit.

OP posts:

Shellingbynight · 17/10/2023 17:33

The care home can ask her to leave if they feel they cannot 'meet her needs'.

As the NHS representative said, her behaviour sounds fairly run of the mill for dementia patients, I can't see why it would need 1 to 1. From what you have said, you shouldn't have a problem finding another placement for her.

I don't know if she is in a specialist dementia care home now, but even if she is, they are not all created equal. I visited one where the manager said he had asked a resident to leave because they were 'pacing' which 'upset the other residents' - again pacing is a normal behaviour. Some care homes only want the 'easy' compliant residents.

The current care home are clearly not willing or equipped to care for your mother and she is likely to be more comfortable elsewhere. In your situation I would contact/visit a few other care homes to discuss whether they could deal with her behaviours. I found my mother's care home on

https://www.carehome.co.uk/

Helenloveslee4eva · 17/10/2023 17:22

Move her to a home that can manage her needs.

everyone will be happier.

my dad was in a specialist dementia home , though he “ remained easy to manage “ part of that was luck and most of it that the team just knew how to cope. It wasn’t cloth napkins and wine glasses but he didn’t care. the kept him and even managed his bed bound end of life care - I was so greatful.

another relative is pretty early dementia ( not even diagnosed as he’s been masking a lot ). He’s in a care / nursing home that considers it’s self “ posh “. It’s fine but we are constantly on at them to prompt to wash etc and recently as had new hearing aids they actually need to put the blooming things in - there just ain’t capacity to learn to manage them at all. I’d rather have him in the outwardly more basic place dad was in ! At present he can still notice the fancy bits …. But I’d have no qualms about moving if / when needed.

MrsCarson · 17/10/2023 17:17

Tell the home you want a MDT meeting, it will involve CHC (continuing health care) SW for the county (your mother should have a named SW) and the elderly persons mental health team usually a CPN (Community psychiatric Nurse) will attend. She reports back to the Elderly persons Psychiatrist who can prescribe meds and have your Mum monitored for effectiveness. The nurses or manager who knows your Mum, and they should have lots of evidence of incidences and behaviours over time that show thy can't cope with her as she is. You must also attend to hear everything being said.
Your Mum may well need time in an NHS facility that can assess her needs and try to help her with medication changes and then return to the care home.
If she is only in a Care home she will probably need to move to an EMI nursing home where there is more experienced staff who can look after her.

SunshineAutumnday · 17/10/2023 17:14

Is her GP involved? If so, she may need a MDT discussion: involves lots of teams: GP, social worker, carehome matron etc. To discuss the best way forward.

I would suggest visit demtentia organisation website and posting there.
Your mum may have some NHS funded care depending on her nursing needs.

Her GP maybe able to prescribed medication for anxiety, it maybe pain related.

She may require a more suitable nursing dementia home (EMI home).

DappledOliveGroves · 17/10/2023 17:14

Echoing the above. Is it a specialist dementia nursing/care home? Your mother's behaviour sounds fairly normal for someone with dementia. My mother has advanced dementia and a lot of the residents are anxious/challenging and the staff managing wonderfully, but it is a specialist dementia care home.

Secondly, if you do look at the NHS continuing care assessment and you think there's any chance of getting it, I'd instruct a specialist solicitor to do the application as that will maximise the chance of success.