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.

Actually a financial advisor I now see... it was a very stressful time.

I have been close to a similar experience very recently. Absolutely no judgment from me, but I would very gently suggest that yabu (I was told this myself on MN at an earlier stage, and came to realise it was true). The, reality is not only that looking after someone with dementia full time is incredibly draining, but also that not everyone feels equally suited to doing it. It sounds like there are many things you could quite legitimately criticise your DS for, but I don't think this is one of them. She may feel unable to care for your mum properly - or she simply may not want to - and either of those should be fine. Even allowing for the fact that a child may have 'received' a lot from their parent (in terms of money, support etc), it still shouldn't be an expectation that they provide full time dementia care in return, unless they genuinely want to do it.

The reality (as I was told myself on these pages), is that however much you feel that your mum isn't ready to go into a home, you can't push for that decision unless you're prepared to take on her care yourself full time. You may well feel very sad about that - it's natural - but you can only make decisions in as far as they affect you - not others. You may feel that being at home is the best thing for your mum - and you may be right - but even if you decide that your mum's needs trump your own, you can't make that decision on behalf of others in your family. So, even your 50% idea is unreasonable, because it still compels your DS to take on 50% of the care, which it sounds like she doesn't want to do. The question is not 'is mum ready to go into a home', but 'is there a way of having mum living at home which doesn't impinge on the freedoms and wishes of others' - and it sounds like the answer is no.

The other thing I would say (again, based on experience), is that even if staying in her own home is in theory the best thing for your mum, living in her own home under the care of someone who doesn't want to provide that care, and is doing so for reasons of guilt or obligation or self interest (as it sounds like your DS may already be doing) is very unlikely to in fact be the best thing for her - and may lead to a very poor standard of care.

Having said all that, is staying at home with live in carers an option? Private live in carers would be able to take her out as much as she feels able. But you say she's resistant to carers..?

When DMIL went to line in a care home there were three separate wings for Dementia and she moved through them according to his her disease had progressed.

At first she was playing the piano, which she hadn't done girls over 40 years and going on outings. It was only much later that she wasn't capable of doing these things.

Have you looked at the option of private live in carers?
I have known of a friend's mother who stayed at home throughout advancing vascular dementia.

@tobyj
Thanks you for your comment. I know you are right. I cannot force anyone to do any care they don't want to provide.Looking after Mum is clearly having a negative impact on DS health. Admittedly I think this is because she has never had to think of anyone else other than herself before but that is irrelevant really. It is extremely frustrating having to deal with someone who refuses to commit to any kind of plan for the future. Even when we are discussing the location of the home mum should be moved to, she won't commit to staying in a certain area or visiting mum a decent amount. She thinks that once she is in a home that will be it and we don't need to provide any care any more.
As you say I can only think about myself and what I can do. It is not fair on my two kids to have mum here full time and she is too far away from us geographically for me to support her enough at home. What I know I can do well, is support her in a care home. If she moves near us I will visit regularly and make sure she gets taken out. I know I can do my best with this situation without compromising my DC childhood.
I am definitely open to exploring the idea of live in carers as an alternative but I don't know how we'd fund it. As I understand it, it's as expensive as a care home and other than her house mum only receives her state pension and attendance allowance. If anyone knows a way to pay for live in care outside of this, that would be most useful

DF did this for her DM recently. I think it was £4k a week.

Live in carers as just as much as nursing home fees. We looked into this for our grandma. She was a wealthy woman and could afford it. But in the end we decided on a home, as it would always be monitored and staffed. Whereas no-one would be keeping an eye on the live in carers. Live in carers aren't funded by the council at all. They can send some people round at various points of the day/evening.

It's a tough one. We've just started looking into care homes for my DstepF and the advice I'm consistently getting is that you don't really get a choice if you wait until it is absolutely necessary. You end up at literal crisis point and then have to move them to the most suitable home that has a space.

Coming back to this thread to ask for further advice. We are now considering live in carers as the best option. Mum has no money other than equity in her house.
DH and I are considering buying either part or all of her home to release the monies to pay for a live in carer.
Can anyone offer any advice on this? I suspect it is more complicated than it seems.

I have no idea on the legalities of it. You'll need someone who is very familiar with care and inheritance.

Just wondering if you've voted out the price of live in Carers? My DF had them for her DM. For 24 hour care or was an absolute fortune. I mean really bloody expensive. She could afford it but my DF still had constant phone calls, day and night from her DM and the Carers.

I'd think very carefully about doing this. It's not an option I'd go for after my DF's experience

That is a good point about us still needing to be very involved. It will definitely be far more hassle than a care home but she says she'd rather die than go in one, so I feel that we must try something else first. Cost wise I think it will be similar.It all just feels so difficult at the moment