When to move to care home

[needmorecoffee7]

My mother (76) was diagnosed with dementia in 2022. Currently lives in her own home with my sister who has decided that she cannot cope with this situation anymore. I am getting increasing pressure from my sister and the wider family to move mum into a home. I have her to stay with us regularly so I feel that I have a good grasp of her care needs and I do not recognise a lot of the behaviours that they mention. I of course accept that my sister does not need to continue to live with my mother but it seems very extreme to move to care home in my opinion. She does not require any personal care for example which would be the main tipping point in my opinion.
However I am not sure what the alternative is. We cannot have her to live with us and mum has become terrified of being on her own so a situation with carers coming in a few times a day would not work. I've considered live in care but Mums only assert his her home so I'm not sure how we'd pay for this or even if it's the right thing. She has become very fearful of moving to a home which does not help matters.
Does anyone have any advice on how to make a decision about whether it's the right time to move to residential care? My concern is that mum loves going out and about and may feel very confined by a home. She also is reluctant to join in with any kind of dementia specific activity as we have tried to take her to various groups etc. I also worry about her being put on a dementia specific floor and becoming upset by the behaviours of the other residents, shouting out at night etc.
Does anyone have any experience of a relative like this who ended up enjoying a home? Is it best to move her whilst she still has some memory, so that she can get settled? Are there any alternatives for care at home that I haven't thought of? Any advice would be most welcome. Thank you.

The issue with Alzheimer's/Dementia is that sometimes it plateaus for a long time, and sometimes it worsens within a few weeks. Even if you decide not to go down the care home route for now, I would start researching and visiting homes now, so you know what option to go for when you decide it is time.

My husband's grandfather is in a care home (private), and it is absolutely fantastic. They have gardens, a cafe, a hair salon, cinema, dining room, lounge, activities, etc. They put him in there about 6 years ago, expecting him to pass away within a year. He's still going and I think it's due to the level of care he receives, and he is genuinely happy there. We are always happy to leave him, he's normally chuckling away to the activities or clapping away to music.

@NoBinturongsHereMate

That's very odd. You'd need a DoL order if they didn't want to move, but otherwise it's nothing to do with social services if they aren't funding the place.

It happened. I'm in Scotland if that makes a difference. No idea what a DOL is but there is no way someone with zero awareness could possibly decide they didn't want to move

Not disbelieving you - just saying it's peculiar (and anyone on this particular board knows the peculiar happens far more than it should).

DoL is deprivation of liberty - sometimes needed to keep someone in a home against their will if it's in their best interests (a bit like a mental health section).

In England the normal process for self funders doesn't involve social services at all. You can ask them for a care needs assessment if you want, and they might say 'you need to find a care home' or 'we think they could cope with visiting carers' or whatever - but they don't get involved in organising that care, and certainly wouldn't block it. They only get a say over whether someone qualifies for.residential care if they are the ones paying for it.

@WonderingAboutBabies
Very comforting to hear experiences like this. We are looking at some homes which sound similar with all the facilities etc. Can't believe how expensive they are but then actually even the more basic ones cost so much and I would rather she is somewhere nice

My big concern is what happens when the money from the house runs out. I know they could be asked to move to a cheaper home but my understanding is that this is unlikely to happen and we need to find somewhere that will negotiate with the council for her to stay. Any tips on what questions To ask about this?

We put our grandma into a home. The money from the house is kept in her bank account. The payments for the home come out every month. When the money runs out, the council pay the rest. She started off in a council run one, she wasn't happy there so we moved her to a private one. She loved that home alot better, it was more expensive but she was happy. They did lots of trips and booked people to run workshops.

If she does move into a carehome then you put the house up for sale, the money from that pays the bills which would be upwards of £5k a month, does she have savings that would pay until the house is sold. Some carehome offer a deferred payment scheme, you can ask about that. They try not to move residents especially if they have lived there a long time, with homes that offer lots of activities, cafe, bar, gardens, luxury rooms and food, these are only worth it if the resident benefits from them, the staff make the home, ask for staffing levels, assessments, what's included, changing her GP, laundry, meals and drinks, their routine, who has overall responsibility, have a good look around, does the home look and smell clean, do the residents look well cared for.,

For the local authority to agree to pay large sums of money for care and allow your sister to stay in the house I imagine your sister would have to prove she was a dependent and your mother was providing significant amounts of care for her.

In your situation, particularly as you have POA, I'd be inclined to push things forward by saying if she can't look after mum anymore she needs to move out so you can see what support will be available for your mum

I'm not sure that is the case actually. If you're over 60 or on certain disability benefits they disregard the house from what I can gather. Nonetheless l agree that she needs to move out

My big concern is what happens when the money from the house runs out. I know they could be asked to move to a cheaper home but my understanding is that this is unlikely to happen and we need to find somewhere that will negotiate with the council for her to stay. Any tips on what questions To ask about this?

A question to ask the care home is whether they have residents who are council funded. We did that and once money was below the threshold, the council started to contribute .it's never a dead cert I guess but worth asking. You could also try asking social services because the last thing you want with dementia is to have to move them to a different home if at all possible.

Ah, does your sister get PIP?
If she has that level of disability then I can see why she can't care for your mum.

But surely the first port of call would be local social services to get care in for mum at home? That way your sister wouldn't need to do as much. It seems drastic to move straight to a care home because she now has some care needs and the person who would provide the care is disabled without first trying care at home.

I'm not entirely sure what benefits she gets. I think maybe ESA on mental health grounds. She is quite good at playing the system. I would love it if we could try carers at home or day care centre but my sister insists she is going to move out and mum cannot cope with being left alone over night

Does your mother still have capacity to make a decision on where she lives?

Assuming she has capacity to decide where she lives (which is usually the starting point unless told otherwise) where does she want to live when your sister moves out? It seems the choice is at home alone with carer visits during the day or in a care home.

Maybe you could suggest a respite break in your chosen care home? Or maybe she could try living alone with carer visits but knowing if she doesn't like it you'll quickly get her into a care home.

She acknowledges that she doesn't like being alone. She is both resistant to having carers come in and a care home. Essentially I don't think she will like anything we set up.
I've tried many times to discuss with her and she just says I'm going to need to think about this.
So I don't know if she has capacity. Probably not as she can't make a decision but she is able to verbalise some likes and dislikes

I would suggest finding a home that appears to be ok and she can go there for respite. This will give her time to get used to being there with the understanding that it not a permanent move yet .

Find a care home that you like, but do check on their policy for residents whose money runs out. Some will accept council funded residents so that you could 'convert', others don't.

When she moves, can you tell her it's for a holiday/break/chance to try it out. Delay the conversation about making a permanent move for a while. One step at a time.

(You can always give notice and move her out if it all goes pear shaped, but if she settles, just keep visiting and distracting her from thinking about home for a while.)

They would disregard the house if your mother was deemed to need CHC Funding but otherwise it will have to be sold to pay for her care or they would put a lien on the house.

I'd get in touch with Adult Social Care saying it's a carer breakdown situation and ask them to assess your Mum.

Much easier for Social Services to make suggestions.
They can also put in place a 12 week financial disregard until the house is sold.
Also look at a care annuity package to pay care home fees, this will only work if the house is above a certain value. If interested I can give guidance based on my own Mum's situation.

What does your sister do for mum, she doesn't need personal care, can still get out and about. Online shopping, cleaner, gardener, carers, day centres, voluntary services, places of worship, community centres, standing orders for bills all help keep someone at home, what is it your sister is having difficulty with. What disability does your sister have, does she qualify as a dependent, if she's ever been section 3 she can get free aftercare support for herself. Are they claiming attendance and carers allowance. Everyone is entitled to a free care and capacity assessment so I'd ask social services or her GP practice to arrange that.

^ this - try respite both to give your sister a break AND see how your mum responds

That said, MIL is in a care home, self funding, £6k a month - it will eat up all she and her late DH worked for all their lives, & my DP would have liked her to stay in her own home with carers for longer

Moving into a home is stressful, exhausting and tends to cause more rapid deterioration

Your sister needs to be transparent with you about her benefit situation and you need to research your own councils level of discretion

5 years in a care home (which is not unlikely, women with dementia can live a long time) will cost about 350k - if the house is taken neither of you will get much of anything down the line

Look at respite, day centres, carers etc as other options and fill yourself in on the finances, legal picture , your sister’s entitlement to stay in the house AND your mums will

Its a health/social functioning situation but also a big decision with long term implications for your family’s finances

Could you mix a stay at yours and respite while you look into things so your sister has a break?

Agree with PP that adults with dementia try REALLY hard to cover up and can be quite convincing. A stay with you of eg a month could be quite revealing

Also consider implications of travelling to visit. MIL’s care home is 45 min away, so a visit will be 3 hours or so (half a day gone). DH goes every weekend and 1 evening a week, it’s exhausting after a long days work in winter but no option

if she were home with carers nearby it would have been so much easier to go frequently

Sister had a 3 week break a few months ago. It was after this that she decided that she couldn't hack it anymore.
I looked after mum during this period any found it generally ok. It is extremely irritating to be asked the same questions again and again but mainly she just wants constant company and needs prompts to take medicine, wash etc.
DS has suggested that perhaps she feels more relaxed at my house as it's a bit of a holiday, as when she is at home she feels like she needs to be doing things all the time. She is with us now and keeps on commenting on how nice it is to be here. I do go back and forth with whether we can take her full time but I just don't think it would be fair on the kids and I'd have to give up work.
I think we will try respite first but it is going to be difficult to fund. Mum has no savings only the house, state pension and attendance allowance

@stayathomegardener

Thank you, the phrase carer breakdown situation is useful. Mums house is worth about £350k
I did look vaguely into an annuity package but thought that perhaps this wasn't enough to cover the £1700k a week fees. It would be great that I'm wrong.

My feeling is that she could live a long while yet. Her mother was 96. That's why I am so keen to make sure that the care home we choose is prepared to fight the council to get adequate funding so that she can stay once the money runs out

So as an example we paid £135k for Mum's inflation linked care annuity based on her being 89 at the time, dementia, high blood pressure and epileptic.
This in addition to her state and small private pension covers her monthly fee of £4,500.
I recall we break even after 4.5 years, go Mum, the poor insurance company had no idea how strong willed she is four years later!

In addition capital from her house sale is never touched and brings in an additional £25k in interest after tax per annum.
We did use a specialised solicitor to work everything out.

@stayathomegardener
That sounds very interesting. Any chance you'd could possibly send me details of the solicitor you used?

Couldn't recommend him highly enough, my sister used him for other reasons and just happened to mention Mum's ongoing situation.

Thanks so much. I really appreciate this.