When to force the issue re residential care?

[MrsBennetsPoorNerves]

I have responsibilities for an elderly relative and LPoA for finance/health issues. She has no family living nearby but we have been able to manage some things remotely with assistance from paid carers visiting regularly. She has a dementia diagnosis.

She does not recognise herself how vulnerable she is and insists that she doesn't need help. She does need help though, and we're getting to the point where it may no longer be safe for her to live alone. She will not acknowledge this and gets enraged if it is even suggested. She finds the carers irksome as it is, even though she relies heavily on their help.

She is adamant that she wants to stay in her own home but this is increasingly becoming unviable. At what point do we have to force the issue? And when that time comes, how do we actually go about that if she refuses?

I am finding the whole thing very distressi g because I want to respect her views and wishes but she is getting to the point where she is a danger to herself, and it seems that we might have to overrule her preferences because it isn't in her best interests to follow them. Any advice would be welcomed please.

A nice care home for dementia is 50-90k per year - average 70k.

My aunt didn’t want to move but once the whole family felt she was too vulnerable with carers with her during the day but no-one with her at night, we all took it in turns to tell her that she would be safer and better off in a good quality home. She acquiesced in the end. She knew we here she was going as she had spent a week’s respite care there and it was a lovely home. Immaculately clean, lovely staff and she had a sunny south facing room with French windows onto the garden.

She loved it there, and despite having clung onto her home for a couple of years quickly forgot about it. She seemed very relieved not to have the responsibility of it any more. If she had moved earlier and then she could have enjoyed the facilities more and had a chance to make friends before she was too far gone to be able to. She could also have benefited from the dementia therapies too.

We sold house to fund her stay. If your relative runs out of money she can simply move to a state care home - but they quite likely won’t move her - the costs will be roughly the same wherever she is.

Once dementia patients get to a certain point it’s dangerous to leave them in the house alone - my aunt started getting up and turning all the gas rings on. And she had falls too. So at that point I feel there’s a moral imperative to safeguard the person even if they resist. Dementia makes people very argumentative and resistant regardless of what is in their best interest or even safe.

Although some resistance at least is fear of the unknown and fear of being mistreated. If your relative can stay somewhere for a week and realise it’s actually rather nice - that’s a big step.

Similar with elderly aunt (96).
Does not leave house,at all. We ve upped care visits to 2x day.
We waiting for a fall or other crisis. As suggested above.... Short term memory is zero.

Have visited high end home from 1850 a week london hotel standard for rooms rather nice !! and another less high end from 1350 a week for smallest room .
Cannot use lunch as excuse to get her even visiting as have not gotten her out of house for months. So would be in a crisis....

You can't force anyone out of their home, if they are deemed not to have mental capacity then a decision can be made in their best interest but this isn't a straightforward process.

What usually happens in these sort of situations is that the older person has to fail and ends up in hospital. Once in hospital assessments happen to see if they will cope at home.

In the North (but expensive area)

£7k for end of life dementia care in a home- about the same for home care.
Before that it was about £4k for care at home which was multiple daily visits, managed food deliveries, took to doctors/hospital, washing etc, walked dog for many years (dog went 1st), feed cat.

per month

Thanks all for your responses.

It seems that we either need to persuade her to go of her own volition (highly unlikely) or else wait for something to go horribly wrong so that she can be formally assessed as not having capacity.

So I guess we will have to keep hobbling on for now. We are increasing the number of carer visits so that might help for now. I will also check out some of the other options that have been suggested, such as day care, a companion etc.

I'm so sorry for all of you who have had to go through this... it's brutal. I can only hope I die before I get to that stage.

I've lived with my mother-in-law who had Alzheimer's. When we started caring for her she could walk around and go into the garden, one day she shut me in the shed 😃. Within a few weeks she couldn't walk very far but would go into the kitchen "to tidy it up" in actuality to move things around and throw decent food in the bin.

This was in August, by November she was basically in a chair staring into nothing. She had a fall or two but one we managed to get her into bed (me and two carers) but she couldn't get up the bed to lie properly, ended up dying in hospital with pneumonia.

So things can go downhill very fast and a dementia patient needs 24 hour care. If you cannot offer her this then a dementia home is the best place. Although she'll probably fight not to leave her home she'll settle soon enough.

I found this forum really helpful as there are plenty of experienced people on there. forum.alzheimers.org.uk/

People are allowed to make unwise decisions even if things go wrong it won't automatically mean she won't have capacity.

For there to be a decision that her mental capacity is impaired she would have to have dementia or some other brain based disorder that impaired her cognition to the extent that she wasn't able to understand the choice or decision being offered to her.

You can make a decision as a family that it needs to happen. We would have moved my aunt even if she had resisted.

OP I wouldn't worry in the least about the possibility of her having to move to a different home if the money runs out.
If she gets to that stage, she won't notice where she's living by then.

She does have dementia if you read the OP.

Also - with dementia you can have capacity to make come decisions and not others. My dad’s (who also has dementia) GP has been excellent about supporting what is in his best interest.

I agree. I care for my father (along with other carers) and he needed someone with him 24/7 quite early on as he would get up in the night, wander round, start shaving, try and go out on his own etc.

Yes, she does have dementia and she has been living with it for several years. Only diagnosed fairly recently though. Her condition is definitely getting worse though, and while she has been able to manage living alone until now, we're starting to get to the point where she might not be able to manage like that for much longer.

Good to know that your dad's GP was helpful @Mirabai. I'm sorry you're going through this again.

Reassuring point @TheShellBeach regarding what would happen if she had to move care homes. Sad but very probably true.

With my aunt I could see the way things were going and I scoped out homes with my cousin well before we got to the point she needed to move - so we were prepared with list of options.

Otherwise something major will happen - a bad fall or she sets fire to something - and you will be in a panic trying to find somewhere quickly.

This happened with my gran. We tried to persuade her to move to an assisted living apartment but she really didn't want to. We quoted all the same reasons you have.

In the end she had a few falls at home and ended up passing away in hospital after surgery. It may not sound it but it was rather peaceful and quick and in the end I'm glad that she never ended up having to move out of her own house. I'm glad we didn't try to force the issue (though we may have if she had lived longer).

When looking at care homes remember it’s not frills eg how posh the place looks that counts. Staffing levels, enough so that people can move around as they wish and not corralled into a lounge, trained staff who understand dementia and that it affects everyone differently, hygienic with no bad smells but not a stink of bleach either, a good atmosphere, natural light - all much more important than if the paintwork is a bit scuffed here and there

Thank you @Mirabai. Scoping out care homes now sounds like a good plan. I just don't know how I'm going to find the time to do it...I have a very demanding FT job as well as responsibilities for my own elderly parents and dc (who is luckily very low maintenance!!!). Finding the time to go and scope out care homes in an area that I don't actually know feels quite overwhelming, but of course you're right that it makes sense to do it before it becomes an emergency. I will try to book some time off work when I can focus on this.

@ludocris, I understand that point of view. I am very much of the opinion that quality of life is much more important at this stage than quantity... it's just a question of working out how to give her the best quality of life in the time she has left.

Thank you @midlifecrash, all good points!

Sorry cross posted. It is very time consuming and overwhelming to check out homes. There see to be a couple of online review sites which might possibly help narrow it down before starting?
https://forum.alzheimers.org.uk/threads/reviews-for-care-homes-residential-homes-nursing-homes.134418/

and the cqc ratings of course

You can start online OP. I scoped homes round where she lived and homes near family in London. A big plus side to her moving near you or other relatives is being a able to have visitors.

I went to care home U.K. website and looked through the homes, the reviews and the CQC reports. You get the feel for the different companies that run chains or homes quite quickly. Some of them are excellent, others not so good.

I made shortlists and only went to see the front runners.

I used this: https://www.carehome.co.uk/ but also checked out the individual homes websites and Google for ones that weren’t featured on it.

Some good providers are Audley, Richmond Villages, Signature, Avery, Cinnamon etc.

she is a danger to herself, and it seems that we might have to overrule her preferences because it isn't in her best interests to follow them. Any advice would be welcomed please. Remember that perspectives change and she may prefer to keep her autonomy even at physical risk to herself (in the same way that people will continue with sports with a high injury risk). “Best interests” isn’t just physical safety.

Being blunt people moved into care homes tend to die more quickly. Those at home tend to have better care and live longer- so it is more expensive. The opposite was stated with equal authority on this board about a week ago.

Don't want to skimp on care by paying for a cheaper option when she could potentially afford better More expensive doesn’t necessarily mean better. Don’t pay for facilities that look good but which she won’t use, and keep an open mind re shabbiness. The quality if manager and staff us really important.

Get a good IFA, sell the house, invest the money. If her pensions are enough to pay the fees the return on her investments will insure you against costs rising.