Guardian article today that might resonate here

[thedevilinablackdress]

https://www.theguardian.com/science/2026/mar/28/burden-of-extended-care-for-aged-parents-new-phenomenon

@FiniteSagacity yes apart from the nightmare administration which is a separate thing...

Healthcare specialisms are very pleased with themselves. I understand that. They have worked extremely hard to get that specialist knowledge.

Unfortunately, it leads to bizarre things when they seem to have no idea how to communicate with other departments.

I can't remember why mum had a random lung scan but I think it was something to do with upper chest, lower chest and abdomen specialties - so it was just a case of going into the hospital for several different departments

Again, I can't remember how this happened, but finally mum got referred to a geriatric department, who saw her as a whole person and they allow an hour for an appointment. A human being actually listened to her! They looked at how different medications interact and how that might be affecting her stomach. Which is really what she should've had in the first place.

If I get to 80 I am definitely taking up smoking again. I remember enjoying it!! My GM smoked 60 a day enjoyed fatty food and loved her gin. She passed away three weeks after being diagnosed with stomach cancer in her early 80s. I’ve never liked alcohol much but cakes and chocolate will be my main food along with the fags. My GF went to bed one night and didn’t wake up , that’s the way to go ! my other GF died on the operating table. It seemed terrible at the time but at 78 it wasn’t that bad comparatively.,, My DDad and step parents had a harder time and DM (86) is physically going strong but her mind flew away years ago.. shé’d hate it if she knew.

Oh heck I really really need to do a living will.

Yes, the trouble is that smoking is a toss up, it makes a disabling stroke much more likely, or a disabling heart attack, and COPD is probably bottom of my list of choices of diseases to get.

It's such a toss up isn't it. I often wonder if should have vaccinations for COVID and flu but then I know the chances are she'd just be poorly for a week and I'd be the one who'd have to drop everything and go and stay with her. My brother's would be fast with the excuses, though only one would have valid ones.

I can relate to the article. Well said.

Well

After last week, I worried I had come too close to practically asking "how can you still be here?"

It seems I did not cause offence because she didn't register whatever I was saying about needing a break

It's absolutely bonkers

I am completely out of things to say to her. I find even a 10 minute phone call really hard work. I don't want to listen to her either.

I'm absolutely fine talking to anyone else, I'm not having a "world is getting on my nerves" moment like a lot of people have

I just feel like psychologically I wasn't prepared to hit 50 with her still in tow and now I could be staring down the barrel of another five or 10 years, I just don't know what to do. It's not about her making demands. She's currently in good health and not making any demands. It's just - how can this still be going on?!

@EmeraldRoulette I found the uncertainty so very hard. Never knowing how much longer and whether to put life on hold (again) or not. Especially when visits meant little or difficult interaction and that might not be remembered any way. You do need to allow yourself a break, and boundaries 💐

@EmeraldRoulette I hear you. My friends DH was rushed into hospital to get a liver transplant recently- he’s 61 and very clean living. It seems so unfair that can happen whilst my DPs linger on aged 92 and 87 with major health complaints.DF at least is really enjoying the care home and it’s actually enjoyable to spend mild amounts of time with him. I find it so hard with DM, she has a never ending list of things I need to get or organise for her, and when I get them they are never right because of the way her dementia is presenting.

Thank you @FiniteSagacity @rookiemere thank you for your understanding - that 61-year-old being ill does seem very unfair.

it's the unfairness of it all that's really hitting me. I went through a phase where I thought I've lost my 40s anyway so what difference does it make? But since hitting 50 I just feel really angry about it. The things I wanted to do, I've missed the boat, and that's my fault. I should not have made the decisions I made. That isn't her fault.

but mostly, it's the kind of disbelief.

there's on average at least four major emergencies a year - and she bounces back from every single one. She looks ridiculously frail, but she is actually indestructible.

There are absolutely fates worse than death. Quite frankly it would be a blessing if my mum died. She’s suffering and has been suffering now for 9 months with no dignity and pain. Every week seems to be some sort of new crisis to sort and I am emotionally spent. In February I emailed my children’s schools to say kids might be unsettled as they’d had a ‘last visit’ to the nursing home. She’s still hanging on but no idea how.

I have that feeling too. This all started for me with a major emergency on my 40th birthday (which she’d forgotten) and I’m facing 50 in a couple of months. I can easily see it going on till I’m mid 50s and the thought of that depresses me. It’s more the time/ energy I could have spent instead on my DC growing up that I’m resentful for. I would probably feel better about it all if she’d been more available emotionally as a parent when I was younger, but I’ve had plenty of counselling for that. I feel like I’m negotiating with a toddler to get her and us into a better position. Has anything worked for you to help with that feeling of resentment? I think more therapy is on the cards for me.

I'm really feeling for everyone who has shared their experiences. I can so empathise with the exhaustion and also the resentment. My journey is nearly over, as my 93 year old parent is now dying which is stirring up feelings of guilt for how I have felt about them over the last 10 years.. I have had 10 really difficult years, with the final 3 being hell for both of us as dementia took hold. I have always done the right thing by them, and tried my best to do as I would be done by. I'm mid sixties, and like @EmeraldRoulette I have sometimes found myself incredulous that they are still here, and resentful that my life is not free.

To comment on just one of the points raised, the use of NHS resources "to what end?"
My parent was admitted to hospital over Easter. We had been told they were dying at the beginning of March and had bent over backwards to keep them at home which we knew was their wish. Hospital was sadly the only option last weekend and on admission we were told that they would not be here by Tuesday/Wednesday at the latest due to the severity of their terminal condition.( It's Friday evening and they are still breathing, and I'm just waiting for the phone call, but who knows how much longer this will go on for?) Blood tests showed an additional unknown infection and we agreed that they could try antibiotics in case they improved how the patient was feeling rather than in any attempt to cure the infection. Returning after lunch, I was astonished to see my parent returning from somewhere on their bed. They had been sent for an x ray!! ..." to what end?"

Less than 6 hours later my parent was unconscious on the end of life syringe driver medication as the dementia meant that they would not tolerate a cannula so the antibiotics could not be administered. They have now been in a bed, totally unconscious and definitely dying for 5 days. We have sat there on and off for those days and I have thought many times that this whole 5 ( and soon to be 6,7or more) days has been sad, forever etched in my mind, of no benefit to my parent whatsoever and to be blunt, a waste of resources.

I agree with all those who've said there needs to be another way. Sending strength to all on the journey.

I am sorry @TesterPotQueen Sounds hellish for you both - antibiotics and xrays during the active dying process? What the actual? I hope your parent is at peace soon. The end of a very long life was never meant to be like this. 💐

I’ve downloaded the form from the Compassion in Dying website. I will be stating that if I have a life limiting illness I do not want intervention .
We’re updating our wills soon and will be looking at POA as well.
My Mum’s complete refusal to plan anything just starting to cause major issues. Thankfully she did a POA years ago, but when I suggested helping her with her finances due to her confusion I was told categorically no. She’s vulnerable to scams because anything that isn’t part of routine finances just seems to bewilder her. Eg a change of tax code caused a major international incident.
The thing I don’t understand is that she knows she has memory issues and won’t seek help for that but is terrified of any other little health niggle, has booked extra breast cancer screening, eats very healthily etc, and I’m not exactly sure what for, because her mind is going.
I’d rather take the risk of a major heart attack than potentially spend 10years sitting in a chair not knowing who I was.

I’m so sorry @TesterPotQueenIt sounds like you have been to hell and back. I hope your parent is at peace soon.

This sums up the madness of the current situation.

I am so sorry that you and others on here are going through this.

I guess there’s no political will to sort this out.

@TesterPotQueen i'm so sorry

With the x-ray, I swear they do some of these things because they're looking for stuff to back up research or they're looking to spend a particular budget

When dad was dying, it actually hurt him to be moved. They told him they needed another scan and he was actually in tears at the thought of being moved. He was a very stoic with a very high pain threshold.

Luckily, they had to deal with me. He couldn't really talk at the time. And it took a lot of arguing, but I was able to spare him the unpleasantness of being moved onto a trolley and Lord knows what scan they even wanted to do

I think there are many real scandals going on within the NHS, but no one wants to talk about them

@JumpLeadsForTwo yes my mum has forgotten all the emergencies as well. I realise that's good for her.

In terms of the resentment, I don't feel it on a regular or frequent basis. So in the last eight years, there has been probably five times that I have felt absolutely furious and battled with it for a couple of weeks. So I can't say that I've tried anything to feel better about it. Most of the time it's a low-level irritation.

Generally, I find talking about it makes it worse - initially I did post on here a lot, but I realised it was making me worse and reading about other peoples experiences can make me feel worse too

I know some people would far rather talk about it and you may be one of those people. Sorry not to say anything more helpful.

I actually haven't seen my mum for a week. I think the last time that happened was when I had a winter bug in 2024.

I'm very conscious that my life is very good in other ways so I try to think of it in perspective and the in the bigger picture, I don't have anything to complain about.

I also did have decent parents and they did a lot for me.

i'm now trying to plan on the basis that she will be around for a very long time. I think part of the reason I felt so ragey last week is the realisation that that's going to happen.

I can't do anything about the past. But I do need to step back now. If she's stuck at home with no one to take her to the garden centre or whatever, I have to see that as no big deal and prioritise myself.

basically, when she seems to be doing okay, I need to take that time off.

It's absolutely crazy to me that somebody can switch between being so unwell and then suddenly be fine for weeks at a time.

A lot of of it is the numerous medications, I'm sure.

I think the reason elderly people are put through so many treatments and tests at end of life, despite being distressed and in pain, is because most families demand it and doctors fear being sued. There is also a bma rule that all life extending treatment must be considered.

@Hangerbout I agree. When MIL had a catastrophic stroke FIL went ballistic when a doctor told him that they would only be making her comfortable due to extent of brain damage. She survived sadly, paralysed, doubly incontinent, unable to talk, reador write and suffering frequently seizures. But every infection was treated at his insistence, often in hospital where she would get very distressed due to not being able to communicate.

When my mum, 86, in a nursing home for several years, with dementia, was dying, the staff were sensible. But that was 30 years ago. The doctor suggested they just ensured she was pain free, and I agreed. I just sat with her, occasionally moistened her lips, and she slipped away peacefully. If my quality of life was so poor, that would be my choice too. DH’s parents were around 70, both were quite sudden, and my father died when I was a teen.

DH is going to speak to the GP re a DNR. He, at 80, has lived with heart failure for years, along with other life limiting conditions. DD who is a nurse supports his decision, as do I. We have been fortunate so far, we don’t need our families to help us, they all work, they have teenagers, and they don’t live near enough to just pop in. They have POAs in case they’re needed.

Anyone worried about being kept going when their quality of life is poor, and equally worried about becoming a burden to their children, can add a paragraph to their Health and Welfare Power of Attorney.

Mine and dh’s go like this:

‘If I should develop dementia, or any other condition where I am unable both to care for myself, and speak, with full mental capacity, for myself, I emphatically do not want any life-saving or life-prolonging treatment. I ask for palliative care only.’

And make sure anyone asked to act as attorney will adhere to your wishes. From all I’ve ever read or heard, it’s often the relatives, rather than the medics, who insist on ‘striving to keep alive’, when it may well be kinder to let Nature take its course.

The thing about the living wills is that it needs to somehow end up in the hands of the NHS staff before any interventions start. And there's no standard form or template.

Love and sympathy to all. It's so good to talk like this and that article was great. There's a David Sedaris quote about how old people used to die cleanly of heart attacks and cancer but now live on and on. He mentions a neighbour who was 80 with a parent alive. He says something about how you become too old to be someone's child - I know exactly how that feels, sort of stymied.

My Parkinson's paralysed, weekly pneumonia-infected father was admitted to hospital against his wishes, despite us having written firm instructions together. He had live-in carers but the agency told the carers 'he can't die on our watch'. He was nearly 90 with two live-in carers - who else's watch would he die on? I had to stop the doctors putting in a nasogastric tube, was too late for the intravenous antibiotics (he wanted only oral at home) but was able to stop them doing an x ray during which they thought they'd have to break some bones to get him straight enough. That phrase again, to what end? To find out where the aspiration was located. Again to what end?

When I asked the GP why they prescribing weekly antibiotics they snapped at me 'well do you want him to die?' which made me feel crap.

I think that the whole conversation around assisted dying is a distraction. It's aggressively assisted living that is the issue. DNACPRs need to be opt out after 75, for example. There should be an accepted protocol at, say, 65 or 70 where people do POAs and living wills, where what makes their life worth living is recorded.

Language around death needs to change. Why on earth did people talk about the Queen's death as a 'tragedy'? She was 96, ffs.

@Valleyofthedollymix I couldn’t agree more, opting out as standard would suit us.