Balancing independence and safety for elderly parents as they become frailer

[Wofflewaffle]

So I’m staying with my 80 yr old parents, and they are currently up in arms because one of my mums best friends has been ‘carted off’ to a nursing home, and no one was told where or when.

They live in a very rural, close-knit community. The elderly person in question was my mums colleague for decades and a real community stalwart. She had dementia and was very frail but coping at home with private carers round the clock. She had lots of friends who visited and gave her lifts and kept an eye out for her, got the hairdresser and chiropodist in for her. None of her children live locally.

She finally agreed to go into a home when her eldest daughter (allegedly) said ‘how can DH and I ever go on holiday / enjoy our retirement when we’re worrying about what might happen to you at home?’. Then it was all arranged, none of her friends were given the chance to say goodbye or told which nursing home she was going to. None of her children (who all know my mum and her other friends pretty well) has been in touch since she left. My mum only found out where she was via the local grapevine.

Anyway, it raised some interesting questions for us, as my parents are just starting to get a bit less mobile / frailer - namely the trade-off between independence and safety.

I personally would have gone on holiday quite happily if my parents were in the situation their friend was in - living in her own home, not distressed, frail but supported both formally and informally. No, it wasn’t risk-free but life isn’t a risk free endeavour. I would not want my anxieties to overule my parents being able to make this choice. But I’m a pretty relaxed person overall. My sister OTOH is a real worrier (diagnosed GAD) and has very controlling tendencies of left unchecked.

How have you navigated this trade-off?

Just adding that I am completely aware that the situation from the POV of my mums friends children may well be completely different to how my parents perceived the situation. I’m just using that as an example of the independence/risk trade-off. I take my parents version of the story with a little pinch of salt 🧂

It must always depend on the individual circumstances. I don’t understand why none of the friends, including your DPs, were told which nursing home your DM’s best friend had gone to. Is the elderly friend incapable of making a phone call? Is there some reason her family wants to cut her off from her former friends? I’m not surprised that the children aren’t in touch: I am surprised, though, that friend didn’t say anything either before or after her move to a nursing home. As far as your own parents are concerned, you know them as well as anyone else, and while they can remain independent, there’s no reason why they shouldn’t do so. There are also two of them. I can understand friend’s daughter worrying if she was on her own and becoming increasingly frail. Ultimately, though, so long as the parent is compos mentis, it should be their choice when or whether they move to a nursing home or similar.

it’s not fair to cart someone off and leave no word with neighbours or friends. so disrespectful.

i’d be onto the care at home company asking if there is any point phoning round local homes to find her (GDPR would likely prevent them from saying where she is but they might say yes try, or no shes gone to a home 100 miles away near her children, so dont waste your time, or whatever).

when it’s time for my mum to go into one as shes falling repeatedly or dementia kicks in i will put a forwarding address on with the post office to my address so your mum could try writing to her friend saying things like “whats your new address”. if the daughter gets it via forwarding she will read it or the lady will.

Regarding your parents’ friend, 5 minutes on the Elderly Parents board will tell you that a frail person living with dementia isn’t doing any coping of their own at all - everything will be being arranged and managed by an unpaid carer somewhere, presumably her daughter, and that can be a massive worry and burden.

Although not telling her friends where she has gone is thoughtless I can understand how it happens. If she is no longer able to ask about her friends then her children may not register that her friends still care about her.

Don’t assume you will have any control over your parents’ actions as they age. Most people have full mental capacity when they die, and it’s their decision about how they live and what risks they choose to take, not yours.

If you think they are likely to develop dementia it might be worth having a conversation with them about what they would want for that - extending their life as long as possible regardless of quality of life, or powering through fast and risky and allowed a natural death? I’ve made my choice and being in England have been able to make it legally binding on my family and carers.

They did track her down in the end, but not via the children. My mum spoke to one of the daughters who promised to call her ‘when it was all settled’ but she never did call. I think it feels like a real kick in the teeth as they made such a big effort to help her at home, where she wanted to be, and while the children said thank you very much, the underlying message seems to have been back off 🤦‍♀️.

my parents definitely believe that she was guilt-tripped into agreeing to move to residential care. Everything was set up to keep her at home, she hadn’t had any crisis or fall recently etc. But her children were so worried about what might happen, they were apparently unable to enjoy their own lives / pursuits / holidays / retirement. None of them live near enough to do any hands care in any way, and there’s plenty of money to pay for whatever they need.

Anyway, it’s led to some interesting discussions over the dinner table, which I guess is a good thing. It’s just that I can see my sister and I diverging on this in the future 🤷‍♀️

I'm sure it's not the same with your mum's friend but as the only person "responsible " for my mum with dementia who can't cook, wash or dress herself appropriately, forgets to eat and wanders off when unattended, the worry is constant and immense. As to her so called friends and the rest of the family they never visit her, contact her or even hardly ask me how she is getting on. And forget them asking how I'm coping with the stress! So when the time comes that she has to go into a care home my first priority will not be letting them know where she's gone. Since they never bother with her now, I will let them know when I'm ready. As you can probably tell, I'm very angry about the lack of support and feel very alone with all this nightmare.

It might be worth reading the recent thread on this board about 'dreading the phone ringing' to get another perspective on the situation (although I'm not saying that this necessarily applies in this particula r situation)

With respect, you have no idea what was really going on in their family. My DMum lives "independently" i.e. alone and with no carers (she doesn't need personal care yet). My DB and I do not live locally. The burden on us is significant already - she calls and texts us constantly in a high state of anxiety, I manage all her finances and admin, her appointments, tradespeople, carers wouldn't do any of that, we do have to go dashing down there quite frequently for household emergencies and it's only going to get worse. DB and I both still work and cannot both go away on holiday at the same time, I also have young adult children at home. I am struggling. But her friends all think she's doing just fine by herself and are impressed by how independent she is. She's a long way off needing a care home so we could have years of this yet, perhaps in this case the children had had years of this (one of them will be organising and managing the carers as well as all the other admin) and just can't take it any more.

It is also possible that when they reached the point of having to sort residential care they had more or less reached breaking point and still had to visit and choose a home, do all the admin associated with that which is significant, clear and sell her house, maybe just didn't get round to letting friends know.

I agree you have to take the version of the story with a pinch of salt. The more likely reason is that the lady really was not coping at home, and needed to move to a care home environment.

When that point arrived for my mother, I told her best friend beforehand, she was in agreement with me. With other friends, I told them afterwards. A couple asked for the address and phone number and I gave it to them. One of them rang her - once. But my mother was at a stage when she could not talk coherently on the phone, and couldn't remember who her friends were anyway.

I was happy to 'go on holiday' when she was still having care at home (but I don't believe that is what the relatives said anyway). So I would forget about that aspect.

There comes a point when the focus needs to be on the person's needs, rather than their wants. They often want to stay at home because it is familiar, but that may not be what they actually need. So the relative (hopefully with LPA) has to make hard decisions for them.

My mother said she loved the care home, and was very happy there. Sometimes it is the best option and it works well.

From a child's perspective it is very different, but my Mum is in a home. She let her friends know she had moved as she was able to do so.

We brought my MiL to live with us in Yorkshire from Hertfordshire. She had dementia and was living in supported housing. Before the dementia really set in, she had been active and had friends who still called her from time to time. When we moved her, the only people we told were social services and family members. It took her quite a while to settle in our home, so when her friends did call we realised after a couple of times that she'd become disturbed and want to "go home", so we asked them to stop calling and assured them that she was being cared for.

So it may have been that the elderly friend of your parents had dementia and was not settling in the new home. Having well-meaning friends visiting or telling the person that they've essentially been "carted off" because they were an inconvenience to their family would certainly not be very helpful to anyone. If the friend had capacity, surely she would have means to give her friends a call and let them know where she was and if she wanted them to visit.

It would be my decision if I’m going to be carted off to a nursing home or not, providing I have capacity. Not my children’s decision.

This is what the Mental Capacity Act and Best Interests Decisions are for. Almost all of us if asked would say we would much prefer to live independently with degrees of risk rather than a care home. An assessment of Capacity around risk of living at home assesses how well the person understands that risk and can be realistic about it. But carers/ family can then be under immense pressure, so it becomes a balancing act. Ideally family would only give the support they felt able to and no more, but feelings of guilt etc are hard to cope with.

'my parents definitely believe that she was guilt-tripped into agreeing to move to residential care. Everything was set up to keep her at home, she hadn’t had any crisis or fall recently etc. But her children were so worried about what might happen, they were apparently unable to enjoy their own lives / pursuits / holidays / retirement. None of them live near enough to do any hands care in any way, and there’s plenty of money to pay for whatever they need.'

It's all very well saying that, but having the money is only part of the issue. In the two years since my father died, I arranged carers and meals on wheels for my mother so she could remain at home as she wished despite being almost immobile, blind and deaf.

Over that time I've had dozens of phone calls at all times of the day and night
e.g
From a carer - 'she's blocked the toilet with an incontinence pad - can you get an emergency plumber'
From my mother (multiple times) ' The TV is not working, I need a new TV' (when in fact she'd just pressed the wrong button on the remote and switched it to a different HDMI channel)
From my mother - 'The TV is not working' (when after getting a handyman in it became apparent that the entire ground floor electrics had blown and I had to find an electrician to track down the problem and replace the fuse board
From my mother (in tears) - 'there's no hot water, get an engineer out - dad would have fixed it'. (A carer told me later that there had been hot water)
From the pendant alarm people on several occasions - 'we've had a fall alert and your mother is not responding' - when in each case it turned out she'd dropped the pendant while getting dressed and couldn't hear it because she hadn't yet put her hearing aids in
From a neighbour (twice) 'The overflow pipe is going continually, can you arrange for a plumber to look at it

These are just a few examples. I live nearly 300 miles away and you spend your entire life on tenterhooks dreading the next phone call.

Yes, my mum was that well-meaning friend to one of her friends a few years ago, her friend got "shoved in a care home" (mum's words) after a fall but despite having no dementia. Friend had no living relatives to help organise care (she would have been self-funding I am almost certain) and presumably went into the home either through her own choice or because her house wasn't suitable for live-in carers. My mum was indignant about it all and used to visit every day and tell me how awful it all was, I suspect that attitude didn't help her friend settle.

My DM moved into a nursing home last week following 3 weeks in hospital.
I keep go backwards and forwards on whether we could have managed at home but this last month has nearly broken me and my already struggling DD.

It is a massive weight off my mind that she is now somewhere with nurses around for stronger pain relief if required, pairs of carers to help wash or move her as needed, doctor visits weekly if needed, and someone else managing the washing and the medicines. etc etc.

https://www.amazon.co.uk/Being-Mortal-Medicine-Wellcome-Collection/dp/1846685826/ref=asc_df_1846685826?mcid=439e9a5f02823aa78cc416774ba2e52c&th=1&psc=1&tag=googshopuk-21&linkCode=df0&hvadid=696450770393&hvpos=&hvnetw=g&hvrand=4268837584152609387&hvpone=&hvptwo=&hvqmt=&hvdev=c&hvdvcmdl=&hvlocint=&hvlocphy=9045999&hvtargid=pla-452155991946&psc=1&hvocijid=4268837584152609387-1846685826-&hvexpln=0&gad_source=1

I found this book really helpful in thinking about these questions. Gawande is firmly in favour of adults with capacity being able to make their own decisions about risk.

It's certainly harder when there are questions about capacity but even so, it seems outrageous to me that children would behave like this- swooping in to scoop the older person out of their home without acknowledging that person's existing life and network of friends. It effectively reduces the older person to nothing more than a problem to be solved by their child rather than a human being.

OP, I'd suggest you all get together to talk about expectations and what your parents would like if a time comes when care is appropriate. You could use what happened to their friend as a jumping off point- frame it in terms of avoiding that kind of thing by having open discussions well ahead. Your sister may find it easier to cope with some risk if she knows your parents are happy with the risks themselves. Would also be good to talk about the level of care you would be able to give (if any), and their ability to afford paid care.

Yes - I read this a while ago and it made a big impression on me. The chapters with the daughter struggling against her desire to curtail her dad’s activities for her own peace of mind, and against his wishes really spoke to me. My dad is an ex farmer, wood worker, log chopper, gardener - persuading / guilt tripping him to stop doing these things before he’s ready to just so that I don’t have to worry is not what I want to do.

One of the things to consider is whose problem does it become when things go wrong?
Elderly people can't choose 'independence' (in whatever form that takes) if it relies too heavily on family picking up the pieces time after time after time.

Yes, if it is just the adult child being anxious about a parent carrying out dangerous activities then wanting them to stop would be unreasonable. However if the adult child's life is being turned upside down by a parent repeatedly having accidents, needing hospital stays, leaving the other partner needing extra support then it becomes much more reasonable to expect them to change their ways even if they don't want to. Driving is a particular concern, how often do we see threads here where people have concerns about their elderly parent continuing to drive when they are clearly not safe to do so - should the parent be allowed to keep putting other people's lives in danger just because they are not ready to give up driving.

DPs neighbours may have said the same about me, although I did go in to see the nearest ones, due to arrangements being made in haste- the hospital weren’t prepared to discharge DF home but only into care - I got an indignant text a few weeks later from someone I had forgotten to tell.

We lived an hour away and were at the point of getting calls about medical emergencies pretty much every time we went out. DF might have been happy to take his demented chances but DM would phone us up (DH and I no siblings) to sort it out. I was having panic attacks on a regular basis, it was unsustainable.

Care homes cost a fortune, I doubt any adult DC is going to force a DP into one unless they have to, the bar for the state paying for it if no funding is very high.

This.

It's the constant phone calls panicking/ranting about prescriptions/shopping//the tv/the washing machine/tech stuff etc etc when I live an hours drive away.

Absolutely miserably exhausting. Especially when they are refusing support workers who could take care of a lot of the issues.

Agree. People have no idea the actual reality.

Looking after someone with dementia is off the scale stressful. People on the outside have no idea. I did it as live in for my parent for six years until it was no longer safe and they needed specialist care. I'm waiting for trauma counselling in the aftermath of it all.

Make sure your parents have all their legals in place and discuss all the possible scenarios, including how involved you can / can't be. Caring for an infirm parent is time consuming and will take over every aspect of your life. That's not to say you shouldn't if you want to. Just that you need to all be realistic and prepared.

I’m afraid the wants of those towards the end of life, don’t trump those of others in the prime of theirs. Quite the reverse. I’m all for people making unwise decisions and ‘living dangerously’ as long as you don’t then expect family to pick up the pieces when an avoidable crisis happens. Plenty of experience with this. It left a very poor legacy.