Elderly parents: what do you wish you'd known earlier?

[MarisPiper92]

Hi all. Asking this preemptively as my parents are not yet elderly (early 60s, in good health) but I worry a lot about the future, and the advice here is excellent.

I am an only child, and my parents are divorced. While I love them and would want to help them out as they get older, I do not want to spend my 40s/50s as their carer. I think they’d both agree that they wouldn’t want to “hold me back”, but I’m concerned that I’ll feel so guilty I won’t really have any choice, particularly as neither of them have anyone else.

I’m particularly concerned about DM. Her own parents died (many years ago) in nursing homes, and she felt enormous guilt at not caring for them herself, even though she was in no position to do so at the time. She has already said she will refuse to ever go into a nursing home.

So, is there anything you wish you’d known/done in advance? Is there anything I can do now to make that time easier? Is there anything I can encourage them do now, to have in place for when they need it?

For context: I'm single, childfree, living around 2 hours away from parents, although will probably move around a bit in future.

Yes,a lot but its personal to my set of circumstances

I wish I had been firmer and got straight answers to questions about their health,their wishes and money.
They refused to discuss such matters and the fall out has been terrible.
Sort out your paper work,Power of Attorney, wills,the lot.

Oh and as for 'dont put me in a home's I suggest they look round a couple.

I think this is partly what I'm concerned about. It feels really insensitive to bring up wills, POA, end of life wishes etc with people who are healthy, but otherwise you risk leaving it too late and it becomes a minefield.

Even though it might feel awkward, I'd recommend discussing getting a POA and drawing a Will up as it'll make things a little easier when the time comes. In terms of practical things, I'd advise getting any big jobs in their house sorted outed while they're in good health,if they need a new kitchen or bathroom or downstairs toilet do it while they can 'cope' with the work. My in-laws struggle to cope with any work men/women in the home, even if we sort it all out for them

When things become too much get a cleaner and gardener, someone recommended by a friend or colleague

Some people are able to cope with a pragmatic, sensible conversation and some become locked in to their mentality and create a massive mess.

One way round is to sort your affairs then suggest they sort theirs. So set up an LPA for yourself (even if you have to make them the attorneys), and make sure your Will is in place.

Your DM's desire can come in useful in persuading them to make preparations - everything can be phrased as "to enable you to stay in your own home".

Assume that they'll be staying in their current house - if they're active 60s they won't be ready to downsize yet - and persuade them to future proof it - best thing they can do is put a wetroom downstairs (toilet, walk in shower, no steps or raised bits that are difficult with wheelchairs or crutches).

I wish I'd known how little I'd be judged for not doing more. Social workers in particular have been very sympathetic.

Never commit to anything you can't keep up every day of the year despite sickness or need for a holiday. But if you love them, be prepared to spend a lot of time on helping them with decisions.

Having no siblings is an advantage.

Downsizing and decluttering. Much easier to manage when they are healthy. Are their current homes too big/ not accessible if they develop mobility problems/ do they need to drive everywhere or are shops/ doctors within walking distance or on a public transport route? Do they need a lot of maintenance/ have a garden that needs a lot of work?

Agree with the suggestion of getting cleaners etc arranged now so they are used to having help and it can be expanded if needed.

Your DM's desire can come in useful in persuading them to make preparations - everything can be phrased as "to enable you to stay in your own home".

This is a great idea, thanks. Future-proofing their homes is something to think about, particularly with DF - he has a very small house with lots of stairs, not many amenities nearby, and not a great deal of money for renovations. Still, encouraging him to make some changes sooner rather than later (particularly as he's just about still working/not relying on pension) is a good idea.

So many things.
Firstly discussion regarding their wishes, early, frankly and clearly, then get it documented.

Wishes in terms of plans if they became unwell, end of life care, where they want to be cared for, what care that they will need and accept,
What will happen to property, finances, belongings etc. (A will)
Organ donation views, resuscitation views and plans.
care home discussions. If they refuse to go in one, what alternatives do they envision? What practical care will they expect?
Either of them could have a stroke or massive heart attack tomorrow, if they were unsuccessfully resuscitated and had significant brain injury…what then?
So many things need discussing and documenting.
First hand extensive experience here, won’t go through it with my family.

There is a document online called "thinking ahead" (nearly sure that's what it's called) useful to fill that out with them. It goes into what their wishes are in great detail. Some things you might not think of. Also gives you the opportunity to discuss what you are willing to do and can cope with should the time com, if they don't want to move to a nursing home if needed how will they feel if they need to live together again so you can care for them in your home etc..

I could have written this same post myself - almost every detail, except DMs parents didn't die in nursing homes. For me, I probably wouldn't worry so much if I hadn't already seen the general grimness of dealing with the very elderly, via my grandparents.

I'm hoping that DM will move somewhere that's not a top floor flat with no lift. Like your DF, there's the lack of feasibility and money for adaptations. It's a worry - if she doesn't do anything for herself in the foreseeable future then I imagine she'll end up in sheltered housing at a later date.

One of the things I wish my grandparents had done was to get the house in a good state of repair while they were still in a state to be able to deal with it. The house was passable when they were in their 70s. By the time DGM was in her 90s, the house was starting to fall apart (rewiring, new roof, render etc.) but she was well past the point of being able to organise building works herself, her DC felt overwhelmed by the idea of organising it all, and anyway she felt too vulnerable to even have builders working outside on the render.

That, in turn, limited our options for future care - one of the final nails in the coffin of her living in her own home was the fact that the house was in such a poor state of repair we couldn't possibly ask a live in carer to live there. As a result, she went into a nursing home.

Future proofing the home is huge too - this can be as major as putting in place a downstairs shower room with walk in shower etc. if it wouldn't be possible to install a stairlift (NB they custom build them now, so even weird shape staircases can be accommodated). However, it can also be relatively minor, depending on how much they can be persuaded to do - for instance, if they were having a new bathroom installed anyway, ensuring that there's space for grab rails in the places they'd need them, or that the shower could accommodate a shower seat.

Fully agree with PP about things like Power of Attorney, Wills, Advance Decisions, and so on.

Do you think your parents will be amenable to the idea of having cleaners, gardeners etc. in? I know this will be a major battle with DF - he is convinced that any cleaner will start pilfering this things because it happened once, 40 years ago.

Now, if only they could all learn the art of Swedish Death Cleaning....

That if they don’t move by a certain time in life it’s then impossible to get them to move.

If they’re refusing to go into care, they need to accept that they will have to have help in the house/garden.
If you are not going to move nearer to be able to help, tell them now. Be firm and do not capitulate if they cry.
Get them to do wills and both LPA.
Do not assume that Social Services will force them into a home if they need one, they rarely do. Be prepared for SS to put everything on you.
I can’t tell you what a toll his DM’s behaviour has put on my DH. It’s no picnic.

Absolutely, the time for wills, POA, expression of wishes etc is exactly when it's all very far off and theoretical.

Make sure you have access to anything online. Keeping a copy of their email addresses on your own equipment can provide a helpful overview as things become too much.

The only thing I wish I had known at the start, was that change only ever came from
some sort of crisis, every.single.time. We would talk in advance about what might be helpful, all agree but nothing would ever change until another crisis / hospital admission etc.

If I had accepted that was how things would work, it might have saved me a lot of worry.

OP, I asked this back in Jan when my 90yo DF had a heart attack.
I had some really helpful replies that might help you too: www.mumsnet.com/Talk/elderly_parents/4132422-What-do-you-wish-you-had-got-in-place-earlier

Become acquainted with the word 'capacity ' or 'deemed to have capacity '.
This is some spurious test done in 2 minutes by a useless GP. The very old person and their capacity can then do exactly as they wish.They lose touch with reality,the neural pathways are firmly established.You are an interfering or troublesome child.

They need to be planning for their own care. Make it clear asap you are not prepared to play this role. I'm 63 and my only son isn't capable of caring for me and quite frankly I'd rather die young than become dependent on family members for care. I will go into a home when I can't cope at home.

We’ve had two with dementia. They both eventually moved into care homes, because by the time they needed 24/7 care and supervision, and frankly care at home was becoming so stressful and exhausting, there was no viable alternative.
Do get powers of attorney, for both health and welfare and finances, sorted out well in advance, because it can be difficult or impossible later if dementia is involved.
Having said that, I don’t think parents should expect children to care for them. Having done it, there is no way I want dds to ever have to do the same for me, and have said as much in my h and W power of attorney.
I would also add, if you do ever have dementia to cope with, God forbid, don’t ever feel bad or guilty for going down the care home route. People can make very pious comments, but the fact is that nobody knows how stressful and exhausting it can be, unless they’ve lived with it. I will freely admit that we were clueless, into we were in at the deep end.

My mil used to live with myself and my wife- her daughter (same sex marriage), and my wife died last July. It became clear to me after a few months that she expected me to spend my life caring for her and also that she was really struggling in the house. I'm early 60s and had a lightbulb moment- I wasn't going to do it! Neither of us were coping, and so I researched the process of her going into residential care home. She moved mid April and guess what- she loves it and is flourishing with the extra care and attention plus making friends her own age. Care homes can be a great solution.

And I got great advice on mn. I will try and put a link to the thread

www.mumsnet.com/Talk/elderly_parents/4179405-Advice-please-Elderly-mil-cannot-carry-on-living-with-me

@joystir59 I read your thread when you were trying to get some help with your MIL. So glad it worked out for you both. You deserve a happy life

Aaaaaw @joystir59, I’m so glad your MIL is settled at her new home. If you don’t MN d me asking, do you think having your house back and having room is ‘helping’ you grieve? Do hope you’re doing well.

Sorry @MarisPiper92for hi jacking your thread!

Wills, power of attorney, all the legal stuff.

But here's what I wasn't prepared for: that the most independent, confident and caring parents can put you through appalling times when they become very ill, particularly if it's a degenerative illness that occurs over time.

I became a carer by stealth, and I'm still not sure how it happened. I'm still bearing the scars now.

So don't assume that it won't happen to you, or that your parents aren't like that. Mine weren't. Honestly, they were so practical - but when the chips were down they became like children and expected me to do everything.

@joystir59 I am so glad your MIL is settled. I'm also hoping you've managed to regain a bit of your life (though I know that must be hard)