The capacity dilemma - balancing what my parents want with what is sensible

[SussexPup]

So my parents are 93 and 94. My father has Parkinson’s and is now not mobile , mentally he wanders, but has enough grasp on his situation to understand options, and knows they have enough money to do whatever they want/need. My mother is very physically frail, but all there mentally. They are currently in a care home on a respite basis.

The general plan is they move closer to me (I’m a 4 hour drive from them, only child) so I can support better and in principle they get this. However the practical side is more complicated. I think the best option is that they move to a care home 10 minutes down the road from me, but how do I get them on side, my father still thinks that they can buy and adapt a house near me, and employ carers, housekeepers etc (and financially they could). But the organisation…..and it would all fall to me
My mother’s plan is just to not wake up one morning….
I feel selfish in just trying to push them to the easy option, but to me that buys quality of life for the relatively short time they have left,

Any advice on how to navigate the conversation when they have a definite say in the process.

They’re just going to get worse, so you can’t let them suggest so much work for others in the first place.That’s a lot, a lot of work.

Parkinson’s affects other personality traits as well as the more obvious dementia signs, so it’s no surprise DF is being a little bit selfish. And he might get impossible, really impossible, just so you know.

So don’t engage with the house plan. Bright, breezy, care home brochures.

Failing that, social services won’t let them move house when they’re completely incapable IF you say you can’t do all the work for the next decade.

So get them reassessed and tell SS first you’re not doing the heavy lifting because it’s unreasonable.

You have act in their best interests but those interests don’t outweigh those of other people - that’s the law, and very sensible it is too.

I’m in the same position - two parents wrecked in mind and body, both blithely self-seeking. For decades.

They don’t look out for each other and are determined to claim the debt DM growls her DC ‘owe me’. Not that much, we don’t. I don’t think you owe your parents for giving birth to you at all, as it happens.

We’ve already looked after them for longer than we were dependent on them as parents.

Stand firm, they’ll try anything and they don’t have a right to ruin your life.

@SussexPup oh goodness yet another set of selfish parents. I say welcome to the elderly parents thread but I say it with a heavy heart. So many of us, probably similar ages having life irrevocably impacted by parents.

You will get some good and kind advice on here from people who have lived the same experience. You may also get those who tell you what a privilege it is to still have parents and that you should step up to the plate. FWIW I don’t think you should - I gave far too much of myself and it made me ill and almost broke my marriage up.

Think practically a house move at that age will at best be for say 10 years and all of those years will see a deterioration in both parents. A move to a care home might not be what they want but I would say what they need is more important. You may wish to consider a nursing home as a care home might not be able to look after the needs of someone with Parkinson’s in a few years.

It is such an unspoken topic in the wider world. I got so unwell with things I ended up at my GP - so more pressure on the NHS. It is all well and good medicating all these illnesses but my Dad, also Parkinson’s has had zero quality of life for around 8 years now. He is in a nursing home as a care home was not enough for him. As @Supersimkin7 stand firm. Vent on here whenever you need to.

Ask him who will deal with estate agents / buyers coming to their home to view ? The paperwork , the packing up and moving ? The setting out of furniture / unpacking buying curtains , new furnishings etc etc .
A massive thing to arrange at that age , and you can't do it all 4 hours away .

They're not going to live for 10 years though are they, how many centenarian couples are there, esp ones with over a decade of Parkinsons? (Though I see where you're coming from @BlueLegume - I sometimes feel my mother will outlive us all). By the time a suitable house was bought and adapted they'd be at least 94 and 95. Selling their home, decluttering, moving all their stuff would also take its toll.

Could they not move to the nearby care home on a 'respite' basis? You could be a bit slippery and say that it's order to sell their house and look for a potential house to buy? Their health needs will have inevitably changed in that time - we found that we were always exploring solutions that quickly became obsolete.

Could you suggest they move nearer to you in a care home on a temporary basis? Say it's too much for you to help them move house while supporting them where they are. Then just take your time moving towards buying a new house for them? So it never actually happens?

Cross posted!

With 2 parents to care for - another only child here - I opted for a smaller house with live in carer for my parents. I used a local agency to cover her 2 hours a day break, and set up direct debits for all bills and a weekly food delivery. A downstairs bedroom/shower was essential.

It meant that my parents still felt relaxed and 'at home'. We tried care homes for respite but honestly even the best care homes are a bit soulless unless you are physically and mentally active, and have the good luck to have other like minded residents with you who can engage in conversation and meaningful activities.

You might be lucky with care homes. A friend's mum is in a very good one and is given independence and space as well as support when needed - but she can still read her daily newspaper, do the crossword, phone old friends, work her own iPad, download films etc so can pretty much occupy her time, with the odd visit to a recreational activity in the home. For those less active, days are long. . .

Yes, this, if they are going into a care homes. It gives them time to settle in, whilst still looking forward to other things.

A house lived in by a frail couple in their 90s is most likely old-fashioned and need modernisation/renovation. It could also be cluttered and messy. There is a limited market for houses like this and the buying/selling process can take a long time once you have a buyer. Once you have the new house, good builders are busy and expensive. It could easily take three years for the whole process. It is totally impractical.

I agree with previous comments, the housebuying plan is completely impractical, and they won't be able to cope with it. And bluntly, it could take so long to complete that one or both of them could die in the meantime.

The priority is to get them moved to a care home near you, you could sugar the pill by saying it's temporary while their old house is sold. As you say, you will have to do all the work for this and you can slow things down until it becomes evident that it is not an option.

Thank you all, just back from a day with them, pouring a large glass of wine. I think the ‘respite” option makes sense. The current care home manager is supportive of my plans, and will help work on them.

To be fair to my parents it is only in the last year or so they have become this self focused, but the house of cards really collapsed November last year just as I was dealing with my estranged husband’s death (it never rains), I am feeling a bit overwhelmed, but at least they are safe where they are at the moment, which gives me more peace of mind than when they were at home.

I appreciate you answering me this morning, and talking me down.

If you offer zero help on the buying and selling of a new place,it presumably can't happen......

This is what I was going to suggest.

Would sheltered accommodation near you be any good ...or is it too late for that 🤔 We know very frail old people who are managing quite well in that. All rooms on ground floor with patio garden directly from their flat. Checked on by a warden daily so no worries about being left several days after a fall ect. Paid helpers come in to clean/help shower/cook one hot meal. They manage breakfast and sandwich tea themselves. Daughter (my friend) orders their shopping with theirs and basically keeps an eye on bills/carers. Takes them out for lunch about once a month. Seems to work well but it depends how far down the line your dp's are.

Sadly I think traditional sheltered accommodation is beyond them now, my mother’s right arm is useless now, so any kind of food/drink prep is a painful and slow thing, so they would need a lot of help to ensure they stay fed and watered. My father is wheelchair/bed bound so needs help for everything. If they had done it 5 years ago maybe.

As some posters above have said they don’t have long left, and any small illness/accident is devastating and causes a whole world of complications. I do think in a care/nursing home we have future proofed as much as possible.

That is my plan!

Do they have enough savings to pay for “respite” for a while? If so, I’d encourage them to consider moving into a care home near you whilst their house is sold. It removes them from the stress of dealing with viewings. This could well take a while, especially if the house needs work, so you might well find the onward house purchase never becomes a realistic proposition.

In terms of being four hours away, you can hand the whole thing over to the estate agent to manage. I’ve done this once when at a distance from the house I was selling and paid a slightly higher commission on the eventual sale, but the estate agent managed the house, maintained a log of visitors, performed weekly checks, ran taps etc as well as organising and being present for the viewings. Which meant I never had to go back to it. It did mean clearing everything out first though!

@EmotionalBlackmail fortunately we can decouple the house sale from future actions which makes things so much easier, and the house is in pretty good nick, and not too dated. Thanks for the suggestion about estate agents.

House buying and selling/storage etc doesn’t phase me, due to various dramas in my past life I have bought and sold 3 houses and renovated one, and done several rentals in the last 10 years.

The parents emotions are the complicated part of this and managing my guilt about not doing what they think they want.

Yep I was going to say that! Who is going to do the house viewings near you - clearly not them as they won’t be up for an eight-hour round trip. And then who is going to deal with the solicitors and estate agents - again clearly not them. So just wash your hands of it, and say you can’t take all that extra work on but they are welcome to buy somewhere nearby by themselves, and hire their own staff. If they do it, great. If they can’t, that rather proves your point.

I absolutely agree with them moving into a care home near you on a temporary basis, because selling a house is so complicated! There will be lots to sort out at their old house, and work to do getting it ready to sell. While all that happens it makes perfect sense for them to be near you.

Then, you reassess what is available in your area. It may be really hard to find anything suitable… really hard. May take quite a while.

I want to help you but I still need to do X,Y, Z (work!!!) as well.

If you want to do X you have to sort it (when you know they can't).

Or move their respite home nearer to you as an "experiment" and drag the whole thing out (this is what I've just done, then have the "you aren't getting out" conversation once they are institutionalised. The elderly person I care for could only identify that in order to go home to live they would need the door key. No thought about re-starting carers, sorting grocery shopping, making sure all the furniture was back after major renovation work etc. At which point everyone agreed that it was probably best they stayed put).

Oh dear, I do feel for you. The only thing I think is perhaps positive is that a purchase of a house without you is 99.9% certain not to happen - when my mum had these sorts of plans she was still just about capable of doing it herself, and going round looking at vanishingly unsuitable places with her was terrifying (second floor flat with no lift or outdoor space 2.5 hours from any relative for an 83 year old with one non functioning hip and a lifelong passion for gardening anyone?) Quite obviously a move to a care home near you is the best possible option.

Id just stick to the facts - that if they’re going to buy a place near you they will need a base in the area to look at places, so a care home move is the simplest way of doing that. Then there’s the move and settling in and getting over the exhaustion. And then if they want to spend their days on Rightmove that’s fine. It won’t happen. Just don’t get embarrassed about it or think you have any responsibility to make something so impossible happen for them - you don’t.

You have my sympathy, OP. I'm an only child too but fortunately was never in your situation as parents died quite suddenly, eight years apart.

I think this is a warning to all of us to preplan as much as we can, especially house wise, because one day we might be old and frail and it's a terrible burden for children to make all the decisions. I have, as much as is possible.

OP, your job is to act in their best interests not to do what they want.

Of course they’ll have enough capacity to ask the world stops to move in with them and look after them 24/7, but they don’t have the insight to see they’re getting worse and need a care home cos their house doesn’t have 40 bedrooms for all the staff and equipment eg hoists to lift, turn and clean their bodies, change their nappy, etc..

They’re likely to live for several
years, so never, never fall for the dying blackmail. They are dying and their functions are going/gone - but you haven’t even started the bedbound years yet. Caring now often lasts longer than bringing up children.

@Supersimkin7 excellent last post. We are living in a world our parents do not recognise when it comes to keeping people alive beyond what would have happened in their parents time. My father has been ill for 15 years and is now in a nursing facility. He is on numerous medications, is doubly incontinent, has zero quality of life but is alive and has already lived for over two years longer than a consultant suggested in 2023. He will not improve. He now cannot walk, requires hoists and needs to be fed. A resident in his home recently died at the age of 103. Her adult children were in their late 70s.

I have acted in my father’s best interests by having a conversation with his consultant and the home that I do not want him hospitalised again as it is too traumatic. We have just in case medication at the home.

One of my siblings and my mother now refuse to speak to me or if they see me are verbally aggressive as they think I have ‘let Dad down’. My mother cannot understand why I won’t organise physio for Dad.

Wants and needs are in need of discussion. Good luck all it is a mine field and as has been stated the bed bound years are a new experience.