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?

They sound crap, they can't just throw her out. They have a duty of care. Tell them you've looked around and nothing is suitable, they can't do anything.

On the other hand, I might worry that they would treat your mum differently if you did this .... so maybe have a look at others as this one doesn't sound great. But they certainly can't make her leave without your permission/help.

Sorry you are going through this.

Yes, one care home wasn’t able to meet mum’s needs (unless I paid 1:1 care!) I was in touch with a lovely OT and physiatrist who recommended a care home which was much better suited. Was all very stressful.

However I moved mum to another care home as it’s closer to where I live.

Which area are you? Others might have some recommendations

Is she in a specialist dementia home as that may be what you need to look for . It’s unfortunate having to move elderly people but if the home is not equipped to cope with her needs there is not much you can do .

I was just going to ask the same thing Floral

Sadly they can ask her to leave.

I would ask the LA for their list of specialist dementia care homes and start visiting.

Contact your local Dementia UK or Alzheimer Society group for recommendations and general support as well

My mother's care levels were considered so severe she was homed in a secure dementia facility which was paid for by the NHS.

The staff were wonderful but it was a pretty horrible place, with lots of high care individuals, but she couldn't be looked after anywhere else, she was starting to lash out, get very agitated, trying to escape etc.

This has just happened to my grandparent. He is also very anxious and the posh private homes clearly only want the easy residents!

He is now in a nursing dementia home (rather than only care) an has gone from being one of the "worst" to one of the "best", but has accepted the change better than expected.

We've come across several other residents in the new home that we recognise from the old home who were also asked to leave!

Social services are wrong to say they don't have to do anything if you're a self funder. They still have to help. They might charge a fee. What if your mum had no children/relatives? This makes me so cross, (and I work for them).

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

My MIL is in a home that states from the outset that they can't accept residents with challenging behaviour.
With dementia you sometimes need to find a specialist home that understands the needs of people with dementia better.
Fortunately she seems to be ok where she is.

I've worked in nursing homes and most aren't equipped to deal with patients with advancing dementia. They can be very disruptive to other residents and need much higher care staff levels. The stark reality is that she's probably not safe where she is.

Start looking round for specialist dementia units and ask for some referrals. It may help if you get a social worker assigned to her, they're very helpful in terms of what you can claim etc.

Social services still have to help. Under the Care Act everyone who may have needs is entitled to an assessment. The home can, sadly evict her if they can no longer meet her needs. There will be somewhere out there for her. Ask for an assessment of her needs and then ring round as many suitable homes as you can and ask if they have vacancies. Then read the CQC reports and go and have a look round. Remember… just cos a home looks “posh” doesn’t mean it is the best!!

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.

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).

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.

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.

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/

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?

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

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

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.

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.

The only things that help with anxiety are sedatives.

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.