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.

Thank you@Appleofmyeye2023, that's very helpful. I will have a look at that link.

@lastminutewednesday, thanks. We do have a care company visiting at present, but not sure if they will be able to provide more as her needs increase.

@Iwasafool, I agree that day care would potentially be a good option if we could persuade her to at least try it. I will investigate.

Most care homes have a mix of private clients and LA ones-so often they don't move the funding just switches.
When you research homes find ones with a mix of client groups.
LA won't pay for something like McCarthy and Stone/signature care homes (super high end) for example, but there are plenty that cater for both client groups.

Thank you, that's useful advice.

If you want more comprehensive advice on monies and options available to you, try Karehero.... they are a sort of care concierge service and will research and then talk you through all options which saves you from trawling through yourself!

It’s worth asking homes you are considering about this. My great uncle went into a home and their terms said if you self fund for a minimum of three years then they will accept council rates if you run out of funds but you may have to switch rooms. He had a big room with a sea view. The rooms facing the back were cheaper. He died before that happened though.

Thank you @lastminutewednesday and @Badbudgeter, good suggestions.

My mum is another one would have died if left at home even with care visits (she had 4 a day) - she was also miserable at home, lonely and confused, even with lots of visitors.
Her move to care ended up being due to a perfect storm of circumstances
Covid lockdown meant all the support services we used (groups, activities, food services, care package) all either stopped functioning entirely or at best fell apart. This meant mum was at home more alone and so she went wandering looking for people - she had no understanding of time so didn't know carers would visit and once out couldn't find her way back. We had a tracker on her but she went walking and got lost - after multiple times in a short space of time involving neighbours, carers, social workers, family , friends and the emergency services, I begged social services for a respite placement in a home.
She settled extremely well and came alive again being around other people 24/7
She could wander round the grounds and buildings safely with the knowledge she was always home and could never get lost - this comforted her quite a bit, as she found being lost terrifying.
We are now further down the line and at a stage of nursing care - I see her every other day, it's a comfort thing as she's just clinging on to life, I bring her treats and spoil her just to give her some comfort at the end of her life. It's really hard but her being in the home meant she has been comfortable and safe & surrounded by lovely people at a difficult time.
Speak to Age U.K. and the Alzheimer's society they can give you some information about the logistics and options for your situation

My mum is partially la funded and is in a really nice home. I think you need to have a social worker assessment and they will advise. However, as a pp mentioned. You might have to be quite harsh and firm about you not being able to guarantee her safety unless she has 24 hour care.

Thank you for sharing your experience @wonkylegs. Sounds like the move was the best thing for your mum under the circumstances.

@Thelondonone, thanks, noted that we might need to be firm!

Your relative sounds like my aunt @MrsBennetsPoorNerves , right down to living rurally (halfway up a mountain). My aunt refused help, finally accepted some when it was spelt out to her what the alternative was, but still got frailer, as is to be expected in her 90’s. Her lovely neighbours were worried, setting up visiting rotas when the carers couldn’t attend due to bad weather etc, but still my aunt refused to budge.

It came to a head earlier this year when she had a minor stroke and was found on the kitchen floor. The hospital said she had to go into a home for rehab, and the hope now is that she is deemed too frail to return home. All family live quite a distance away (between 1.5 hours and 3) so we are collectively going to say we are not able to facilitate care etc if she is allowed home. Financially she can fund 4 or so years of care (via house sale) so that’s hopefully ok.

She has been an object lesson to us all re moving somewhere accessible once elderly, and accepting any help needed.

If she is rural there is likely to be community transport which could help with getting her to a day centre. Some day centres also have their own transport.

The best place to find out about community transport is to phone her district council as they are often organised by council tax payment areas.

I would also contact the Alzheimer's society (even if she has a dementia rather than an Alzheimer's diagnosis) and speak to them about day centres and social opportunities.

Yes indeed @Molecule, they do sound quite similar! And sadly, even the loveliest of neighbours do have their limits as to how much responsibility they can take on... and rightly so, because they have their own lives to lead.

It does certainly help to focus the mind with regard to preparing appropriately for our own later years.

Generally, what happens is a crisis of some sort (fall/stroke/other accident)

Sometimes, it takes a few of these crises and consequent effect on mobility/health sadly :(

You are not alone - so many families are finding themselves in this situation. The elderly person and their family at different ends of the country. I agree with so much that has been written - the low bar of the legal term 'capacity', the high bar for sectioning, the tug between staying at home, socially isolated and care home admission.

A few things to suggest -
check out the Aged UK website - very good source of information, they also have a finance help line - you call, leave a brief outline of the problem and someone with the right info calls back. This was really useful for us.

Get a full social services assessment of the situation if you haven't already.

If you have the chance make a few visits to care homes to check them out. For DP's Dad, we actually moved him 200 miles or so south as that where all his family live. made visiting him sooo much easier. And I know of other families who have done this.

And finally be prepared - as someone else mentioned up thread - sometimes it takes a crisis to change things for the better. It can feel like you're watching a slow motion car crash you can do nothing about.

Re companion. Don't tell her they're paid staff. Introduce as a friend who visits with you and gradually starts visiting on their own "to help because they want to, out of kindness".

Put simply, when care needs assessment is made, there's legally a process that determines what needs local authorities have to meet and which ones they don't. Individual LA can't override national law on this, they don't get to make up their own rules (but will often try, so educate yourself, you can't argue against something you don't understand). Once needs have been determined, LA can meet those needs in the way that's cheapest for them. This may mean moving someone to a cheaper service than the one currently being used.

You having health POA means you can be her mouthpiece and speak up for her and her wants/needs when she's unable to. Social services need to pay attention to you because what you say isn't just your opinion and what you would like to happen, it's you speaking on her behalf with the legal power to act in her best interests.

In other words, SS can't make decisions you disagree with, ignore you and do whatever they think is best for them .If nobody has health POA for a person who lacks capacity, social services would effectively have this role, which basically means they can do whatever they like as long as they can say it's in the person's best interests, and there's very little family can do about it.

Does she have investments or private pension that could be used for an immediate care needs annuity?
That way it avoids income tax because the money goes straight to the care provider. If she also has a full State pension then that willmake the money last longer.
If property is her only asset then equity release for the same thing?

Also, if she’s financially well off, what about renting a retirement flat/bungalow with on hand care? Housing associations and charities usually have them, she could then sell her home/ use equity release.

You need some sound advice, moneysaving expert forums are usually helpful.

I've never done it with a care home but my MIL was adamant she wasn't going in to a hospice but she did go to their day centre. When it was very close to the end she wanted to go in and the sister from the day centre was waiting for her when she was admitted and spent the day with her to settle her in. I thought it was so helpful as we lived 4 hrs away and by the time we'd rounded the kids up and got the dog to kennels she had been there for hours but she wasn't alone.

We had this dilemma, @MrsBennetsPoorNerves , so here goes, sorry,,it’s rather long!

Even when she could no longer even make herself a cup of tea, my poor Dm still didn’t think there was anything wrong with her. This was down to zero short term memory, it wasn’t ‘denial’.

After it got to the stage where she simply wasn’t safe to be left alone any more we went looking for care homes. If we’d consulted her, she’d have angrily denied that she needed any such thing, so we didn’t tell her.

She was self funded, we’d never involved social services* and didn’t feel the need now - we didn’t need anyone who’d never met her telling us what her needs were - we knew perfectly well. By this stage she’d had dementia for at least 7 years.

Actually getting her there (a v good dementia only CH) was the problem - if she’d twigged where she was going she’d simply have refused to leave the house. It was planned like a military operation - her GP prescribed Valium to make her more tractable - she had long hated going out anywhere and would v likely have refused to leave the house. DSis and I were taking her, a 60 mile drive to a care home near me, pretending we were going out for lunch, true in a way since the CH had asked us to arrive in time for lunch.

No exaggeration to say that Dsis and I were wetting ourselves all the way - what if she twigged as soon as we arrived? But it’s a measure of how bad her Alz was then that despite it being pretty obvious that we were in a CH, she really thought it was a restaurant and offered to pay for us all! Which of course made us all feel terrible - by this time Dbro and a BiL had joined us - they’d stayed behind to ‘do jobs’, aka bring her things, secretly packed by Dsis the night before, and some small pieces of furniture.

*the care home did insist on a visit by a SW before the place was confirmed, to make sure my DM did really need residential care. That all went much better than I’d expected, TBH it was obvious how bad she was, ditto who the woman was, but DM didn’t twig what was going on.

After the (very good) lunch, it was Dsis who undertook to tell DM she was staying - I was far too chicken! Dm was not at all happy but didn’t make too much fuss. I can’t say that she settled quickly or was ever really happy there, but then she hadn’t been happy at home either (never really was after DF died) - so often fretful or anxious about things she couldn’t even name.

She was there for very nearly 8 years until she died at 97. It was an Abbeyfield Specialist Dementia Home, in case anyone wants to know, and IMO it’s a testament to the very good care she received that she lasted so long.

If anyone thinks it was wrong to get her there by stealth, given that she was never going to agree, I have to say the alternative would have been a much worse crisis than any so far, e.g. a fire in the kitchen (there had already been a small one some time previously) which would then spread, and she’d be unable to get out, since she’d have hidden all her own door keys and (of course) forgotten where she’d put them.

By the time we took the decision, there was simply no alternative.

Thank you all for your responses. I am struggling to reply individually to all, but I am reading/learning from all of you. This thread has been very useful.

I have just been totting up her current income from various sources, and it's pretty good tbh. Can anyone tell me roughly how much we should expect to pay per week for a "nice" care home? Not necessarily the very top end but not the cheapest option either? And could you clarify if fees tend to be "all-inclusive" or whether we would need to budget for more on top of the basic fees?

Don't worry about replying to each post.

We were paying about £5k per month in east London. We paid for hairdresser in addition each week but I think that was pretty much it. The care home was fine - staff were lovely, although I know they had the usual recruitment problems.

Thank you, that's very helpful. Having looked at what she has coming in from various sources, I think she could just about afford £5k a month without having to dip into her savings or the equity in her house. And she is outside London so I'm guessing the costs are unlikely to be higher than that?

If that's the case, then it sounds like we needn't worry quite so much about what might happen if she ran out of money. It still leaves us with the decision about what's best for her though, and I'm still undecided. I haven't been able to find any care homes near her house that have a day care option but I will keep looking. Some sort of companion type person would also be an interesting idea to explore... especially if she could be encouraged to see them as more of a friend and less as paid support.

Our home (residential not nursing) was £1250 a week in the Midlands.
Chiropodist and Hairdresser onsite was extra.
Kept a small amount of cash for trips out.
Although we checked out nearly two years ago now, so prices have probably gone up!

Thank you, that's helpful.

Theres a very high threshold before someone can be made to go into care.
We had a situation which without going into too much detail, the older person was in a far worse state than the one you describe which is bad enough. Only one family member was eventually willing to provide care, alongside carers. That person had to state they were withdrawing their involvement as they could no longer cope, and after huge meetings and discussions a Deprivation of Liberty decision was made. (Similar to but not the same as sectioning under the Mental Health Act). It was distressing for all concerned and physical restriction had to be used. It had to be agreed by all concerned that the level of risk was too high for the older person to remain in her home, and that bar was extremely hard to reach and prove.