Please help me decide what's best

[GraciousMe]

Head spinning a bit 😕

Both parents 90, living independently in an house that needs major work doing. Dad with slowly deteriorating dementia but physically healthy, mum full capacity but more frail. They're coping, just, but really need me more than I can manage. Both adament they don't want to move until they absolutely have to. I think we were all hoping they would manage til one of them passed, and that would trigger the other to move, but it doesn’t seem to be working out that way.

I think it's time now that we know the extent of the work needed to the house, although it relates to part of the house they don't need to live in. I'm stuck knowing what's best though as anticipate one or either, or both, will rapidly decline after any move, so I really only want to see them have to move once. It's also a house that will likely be tricky to sell easily. It's a sort of marmite house. I don't know whether to leave the section of the house that needs work to deteriorate and just sell, or spend what savings they have doing that up before selling. The work is on a part of the house they don't need to live in (but needs a new roof).

Mum has savings so not eligible for state support but is dependent on Dad's pension for income. So if he goes first, she needs to be somewhere she can afford independently.

The dilemma is whether to put dad into residential care now and move mum into a warden assisted place nearby. Or move them both into warden assisted, with the likelihood dad will need to move again fairly soon into residential. Neither really want to move closer to me but stay in their home town of 60 years. As I'm not a homeowner myself and have health concerns of my own, I'm feeling overwhelmed by the financial decisions needed. I've no idea how to make the decisions without knowing how long the sale will take or how much it will make. Equally, I don't know how to move them both together until the house is sold. Where can I go for advice?

First some questions:
Do they claim attendance allowance?
Have you got POA sorted out?
Is the house dangerous or just wearing out? I see needs a new roof, that sounds like it needs doing.
Do they have any external care coming in, would that help?

My parents are similar, but when they go the house will be pulled down and redeveloped so we are hoping it outlasts them.

I think you need quotes for getting immediate work done for safety and to prevent external issues.
Talk to estate agents for estimates and selling situation.

Get AA claimed for both?
Get POA if not already done.

At 90 and with the health conditions you describe, the time when they "absolutely have to" is not far away.

How far away is their home town? At 90, do they actually have friends who will visit them in the care home or is it just that they don't want to leave the familiar area?

From what I've observed, people moving into assisted living with dementia often have to move to full care very quickly. The natural tendency is not to move until they absolutely have to, and the move accelerates the process of decline. So the assisted living stage just complicates things and wastes a lot of energy and money.

So your first option - Dad in residential care, mum in assisted living - is probably the best one if you can afford it.

Getting them to accept it will be hard. The whole process takes time so you might need to be quite firm about starting sooner than they want to do.

It's a horrible stage for them and for you. The Cockroach Cafe thread is a great source of practical advice and emotional support.

It is difficult because there are a lot of known unknowns - you have no idea how long they will live, or how/when they will deteriorate. But they will definitely deteriorate. Today is the best they are going to be.

I wouldn't do warden assisted. It won't work for your dad and it may not even work for your mum for very long. The only move I would do is to move them both to a care home.

That assumes they agree or you have POA and are able to make decisions for them.

In terms of the house repairs, it depends how bad the roof is. If it is leaking badly and affecting the fabric of that area of the house, it needs to be fixed.

While they have capacity there’s not a lot you can do.
What do they want to do?

My immediate thoughts are
Get the roof made watertight .
Perhaps try not to plan ahead - I know that sounds ridiculous but IME in situations like this it's not worth it .
Leave them where they are - a move is likely to be emotionally and physically overwhelming for them both .
And it's probably not what they want .
Which is important.
Aim to get some help going in.

There is actually a lot you can do. It would be wrong to force them to do anything but if our elderly parents are not coping, and it is only going to get worse, we don't have to just wait for them to magically realise what they need.

The reality is, many elderly people go into denial about how frail they are and refuse to face up to their increasing need for support.

Up to a point this is healthy, as sheer determination and bloody mindedness can keep their independence longer than might be expected.

But the reality of this is that they end up in unmanageable situations with utterly predictable catastrophes and unworkable living conditions. They then have an absolute crisis if they have no support, or need entirely predictable rescuing by their relatives.

If we can see disaster looming, it's perfectly reasonable to point that out and work on persuading them to change their living situation in whatever way works for them.

We were in a similar position, although only one troublesome elderly! The house they lived in and outbuildings were held up by cobwebs and rusty nails. But they had capacity and were adamant in their 80’s they wouldn't last much longer so didn't want to consider alternatives. I said I’d help them with shopping/bills/admin etc until there was a crisis, and thats what happened. At about 92 they had a small stroke and ended up in hospital where the Dr told them a residential home would be best, and then suddenly it was a good idea, why hadn’t anyone suggested it earlier…

They’ve left it too late to downsize to a nice bungalow, you can suggest a home, but if they’re not agreeable you’ll just have to wait till the enevitable crisis. If they have capacity then you can only suggest not insist. And the bar for capacity is very low.
Has a builder looked at the roof? You might find it could be patched up for a year or two.

But you can’t force it, so you’re not actually making a point.

Yes,people should bear in mind that you can't force actions against a person's will.
And if you think a POA will make that possible you should consider what this would mean on practical terms.
And read about mental capacity and making decisions.
Mental Capacity Act - Social care and support guide - NHS https://share.google/hGuld2eoAq6s8cWMW

First of all you can’t force them to move against their wishes. If they/mum has capacity they can make their own decisions, unwise or not. Power of attorney, if you have it, won’t kick in until capacity is lost.

Are they willing to spend money to get essential repairs done and to get daily help? I’d be inclined to assist them to stay where they are until the inevitable crisis happens. Social services should be assessing now ideally for support.

I'm making a really important point based on lovingly supporting 4 elderly parents through various combinations of dementia, terminal cancer and heart failure over the past 13 years.

It's been really tough and distressing for them and for the people who loved them.

In every case, their instinct was to deny reality and insist everything would be fine.

In each case, they made changes later than we would have wanted but earlier than they would have wanted. Stopping driving was one of those changes. It took months of saying "you are not safe to drive" before MIL accepted it. She had full capacity but naturally did not want to face up to the loss of that part of her independence. But she had already had some serious incidents and clearly needed to stop driving.

Persuading her - not forcing her - was really hard. There was one weekend where she roamed the house literally wailing and saying over and over again "I can't believe you want me to stop driving".

But through all of us being clear and firm, she did accept it. It was horrendous, but letting her do what she wanted at that point would have been deeply irresponsible.

For many, though obviously not all, very elderly people, there may be a stage where they have capacity but their instinct is to resist the changes that need to happen to keep them safe. If you love them (quite apart from being the person who has to pick.uo the pieces when it all goes wrong) you don't have to just sit there and wait for the catastrophe to happen. It's perfectly reasonable to try to persuade them to accept the help they do obviously need.

I'm really interested in the age and experience of those saying you can't do anything while they have capacity. Is that based on your own experiences of caring for very frail elderly relatives, or is it a theoretical/philosophical point of view?

My understanding has totally changed having been through this 3 times and now going into it with the 4th parent with a very heavy heart.

POA can be used with their agreement whilst they still have capacity.
e.g. at some point they decide they want to move, you with POA can facilitate that.
The point about getting POA sorted is so it is there when needed. If you wait until they have lost capacity then you have waited too long.

@BishyBarnyBee I understand what are you are saying .
I'm 75 , have been through it with my mum, my twin and his wife with dementia and her difficult relatives, and am currently going through it with an old school friend with dementia and no relatives, and an older brother with dementia.
But .. for me there's a middle road between doing nothing and waiting for a catastrophe and not going against someone's wishes,priorities and reality.

Thanks for that, it's helpful to know you are talking from your own experience and not just a matter of principle.

We have never forced any of our parents to do anything. But with the driving, MIL definitely did not want to stop. Has there never been a point where you have needed to persuade one of your loved ones to accept more support?

Sorry that's very unclear. - of course you don't sit on your hands and wait for a crisis ( which might come however much you do ,)
But you also respect their wishes. You have to , how many on here have actually forced an elderly person to do something major ( like moving ) against their wishes.
How was it achieved ?

Car keys have been removed.I do draw the line at endangering life.
Yes , getting support in a nightmare.
One case still refusing . One case now has a cleaner and I hope this will open the door to some care going in .
I was successful with my mum ( mainly because I had a very disabling cancer and major surgery on my stomach) but my mother let her do v v little .
The sister in law had carers in the end They were v poor , almost worse than no help.
It all varies so much .

I think we're probably not that far apart on this really.

The Cockroach Cafe is really useful on strategies, boundaries and just having somewhere to let off steam.

What has worked for us is a combination of repeated gentle suggestion, using the regular catastrophes as leverage, using the most listened-to relative (often a man, not always the one who does a lot of day to day care), occasional guilt tripping about the impact on other members of the family, offering options as respite or to be tried out, and suggesting that if they don't accept help now, they will have less choice later.

That included " some carer support now makes it less likely you'll have to go into a home" "try a cleaner/some carer support now so it's there when you need it" " obviously we all want you to stay at home as long as possible but let's get you on the waiting list for a care home as it could be years before one is available" "Let's try some respite and see how it goes". Then, very occasional but important, pointing out the impact that caring is having on the family, asking do they really want one of us to give up work etc.

So a number of strategies, a kind of concerted campaign with everyone else communicating frequently and all of us trying to sing from the same hymn sheet.

And yes, cleaners and carers sometimes great, sometimes pretty useless but accepting that being part of the process.

The truth is, it's a terrible life stage for them and for those who care about them and all we can do is muddle through, often doing more than we feel we can but less than we feel we should. It's so hard.

Maybe it's interesting to consider the outcomes.
Twin died, would have been better for him and me if his wife had accepted help.
His wife now in nursing home after ghastly failed discharges with care packages. She has deteriorated to extent she doesn't know she's not back home.
My mother stayed at home , ended up on floor trying to do too much ( could have happened in care or with more support) and died in hospital 48 hours later.

I agree with @BishyBarnyBee We have used a lot of those strategies too.
My DPs are very clear they wish to stay in their house as long as possible, and don't want live in care as long as possible. My DB and I have been clear on what we can / can't do and between us it is currently all working.
Until the next crisis.

I have had three relatives with dementia. You do have to offer firm guidance, but it really depends on the person you are dealing with, they are all different.

My mother was relatively easy, I had POA, I made decisions on her behalf and she accepted that she needed help.

My grandmother was tricky, no POA and she was very opinionated and 'did not want strangers in the house'. She complained and often tried to turn carers away.

My MIL was extremely difficult. OH had POA but whatever care was provided, MIL didn't want it. She was, to put it mildly, strong willed.

You have to tailor your strategy to the person you are dealing with, and what you can do depends on you at least having financial LPA so you can access finances for care (if they can self fund).

@BishyBarnyBee yes I think we're in the same place !
I posted partly because I think some people see POA ( H&W) as the answer to the donors not making what they , the attorney, see as a sensible or practical choice.
As some kind of magic wand that will somehow make imposing different wishes on the donor easy.
But it doesn't , and of course shouldn't.
It's about protecting the donor and their wishes.

First and foremost, what do your parents want to do?

Thanks all, some really helpful insights.

I share POA with mum for Dad (I imagine that means we have to be in agreement, I'll have to check that and not sure what happens if we're not!) and have POA for mum if she loses capacity. They both get AA.

Mum at least is pretty level headed. She is open to discussing options, including residential/assisted care. I want to be fully informed myself before having these conversations so I can advise her and make recommendations. I think Estate agents are a good place to start, as the value of the house will determine what can be done. They'll know more what works are needed and impact on value. I know my mum is keen to sit on her savings for herself if dad goes first, as she won't have the same income. But I'm not sure whether it's better to plough whatever they've got into the house so they can stay longer, retain/increase it's value and ultimately give them a better standard of care when they do sell.

They are very private people, and I'd say we're all very on the spectrum and a bit eccentric, so I suppose not the most sociable; the idea of communal residential care is not appealing in the slightest for either of them, which I completely get!

@GraciousMe I think people In residential care often spend a lot of time alone in their room.
They are really not forced hi de hi style into group activities.
And a word on sheltered housing - it's generally just compact ,warm accommodation with a communal lounge where people can join in stuff or not .
There is generally some kind of checking in with residents to make sure they are ok and pull cords to alert a remote responder in an emergency.
The assisted bit comes from outside agencies as it would in your own home.
Service charges are quite costly.
It can be v v hard to resell where relatives have died and you end up still liable for the service charges .
Some schemes are rentable .
I'm talking generally , it may be that there is an extra care scheme near your parents and it's rentable .
I wouldn't purchase.