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

Oh god that struck home.

Every word.

Will read that book when it’s published next week.

100%

We also need a whole pr overhaul of residential care - so it isn’t somewhere people go to die, or of care in the home as the fear for older people then means they/ family struggle for years

You just have to practice saying no in those situations and don't be bullied by ,"professionals". The last time this happened to me was 2 weeks,ago. Cares were lovely but clear they couldn't wait with my gran until ambulance arrived. I told them I understood and gran would need to be left alone. 10 mine later I receive a call from the care manager, furious , telling me I needed to go. I remained strong,"Sorry no that's not possible". She then had a rant about having to send someone hourly to check on her until the ambulance arrived. My response to that was,"I appreciate you have a duty of care. I'm not coming and there is no-one else. You will just need to do whatever you need to do". Its hard, i feel terrible when I hold my boundaries but I'm doing it. I'm currently working on handing all responsibility over to SW in order to preserve my own health.

I absolutely agree. There comes a point where wanting to stay at home is no longer a viable option. If its not safe, or there's nobody able or willing to care for you, then tough. Caring for elderly parents,should not cost their children their health.

We need a,whole overhaul of the social care system. No-one who needs care and support, whether they're 5 yes old and disabled or 95yrs old, is getting the support and care they need and carers of all age groups are absolutely on their knees and becoming unwell themselves adding to the costs for the NHS.

It’s horrifying.

I am 66 and very lucky no parents or parents in law alive. The burden of keeping those with dementia and severe illness alive is destroying families, and personal and public finances. I am so frightened of becoming a burden to my family but what can I do apart from expressing my views loudly and clearly now and dignity in dying forms. It is the interim stage that is the worst it turns love into duty and then resentment into burn out. When does helping your parents become care? Do you think some of this is doctors being worried about prosecution?

The article resonated but I don’t think it necessarily describes the whole situation. Class is a missing element here, perhaps because it’s an Australian article. I come from a posh family that has always lived extremely long lives because other groups of people have been employed to care for them. Mainly working class people in service in the past, with unmarried or compliant married daughters to oversee operations, or more recently immigrant labour, sometimes leaving their own families behind to be cared for, well or badly, by older relatives or communities. But we don’t vote for more unskilled immigration, plus migrants may have opinions about their own working lives.

I will admit that when I heard about that doctor in the Gosport community hospital who was offing dozens of elderly people with a nice syringe of morphine about the time of Shipman, I had a pang of pure envy and regret. But honestly - honestly - do we really think that’s ok? Do any of us remember the health scandals of the past under a more paternalist system? We fought them pretty hard at the time.

I do think we need to take the fullest possible responsibility for our own futures, but tbh the elderly people who are hardest to care for are basically doing that - the ones who insist they ‘can manage’, that won’t consider mobility aids or tech help or carers, who may even write a PoA but won’t then cooperate with its use, who think their daughters can just ‘pop in’ when what they are asking for is effectively 12 hour professional care - these are the same people who have worked hard, did the F-plan diet, sorted out pensions, all that stuff. You can’t expect people to be strong and independent one decade and not continue trying to be the same when elderly.

I have an Advanced Refusal of Treatment in my records, and with my sister was a total bitch to those caring for my dad and mum as we fought for a rational acceptance of death as the best outcome. It’s not easy fighting that hard, but neither of them gave us the documents we needed to fight that battle, and so we did it overall for nearly 7 years. It was interesting to see which health professionals would work with us and which wouldn’t. And I would say it is not easy being the ones who are actually wiping the bottoms of those losing weight and dying. Most medications have multiple effects and some of them are always going to deal with distressing symptoms, but may also prevent a step towards death. It isn’t straightforward.

I realised that I couldn’t both collect my children from school and get to my elderly mother after another emergency hospital admission (2-3 hours away). If I don’t collect from school, school will call social services. I want social services to be involved with my mother, because I can’t do it.

My mother is 88, barely mobile, in constant discomfort and miserable. Her mother lived well into her 90s. My DM could go on for years yet, and I can only admit to my DH that I really hope she doesn’t. My main wish for her is that she dies quietly in her sleep, soon.

Agreed. Your children need to come first.

I do think that if we have well-founded beliefs that our elderly people’s quality of life is poor, we should be proactive about saying so to healthcare teams. Tbh it would be nice if those of us who do do this stood out a bit less!

Totally relate to this. My parents both died last year after 18 months of illness and me caring for them and travelling constantly between houses not able to work my job. I'm not able to spend much time with my own children. I was exhausted, mentally and physically and I genuinely do not know how people do it for longer because that 18 months felt like an eternity. I miss my parents terribly but not the people they were when they were very sick but the people before that and I too almost feel glad that it's done now.

My husband's mother was very very young when she had him and it scares me that we might end up elderly caring for a very elderly person... And also for myself, I don't want to be the person putting my children in the situation I was in!

I think sending people off to live in care homes when they don't want to is the absolute opposite of compassion.
There is a hard truth in the animal kingdom that when a member is no use to the pack, they die. We have tried to beat the rules of nature and we've had great success but with that success has come terrible problems.
For me, it all comes from our refusal to face up to, even embrace, death as a natural and at times good, even healthy, thing.

As for expecting governments to sort out the issue: it would take a complete change in our political systems. No government can sort this problem out in 5 years and no government would get into power running on a ticket of sort out elder care. And even if a government was to achieve this, is shoving the elderly in care homes, however good they are, when they don't want to go really the answer? It's not for me.

Sadly, those plunged into caring roles, often run out of compassion, are on their knees and just cannot continue.

There is no mechanism, to have those who do not wish to live in a care home, and are not able to live at home, just die. So unfortunately there are times where moving to a care-home is the only option regardless of whether its what the person wants or not

I’m LPA for a relative (not a parent). I had no idea how much time and worry this would be. I’m not local to him so I’m taking on the “remote” work. I find one of the most stressful things is dealing with any government body - The DWP, HMRC, Social services. Simple things like change of address never happen the first time of asking. I’m now convinced that they don’t actually read letters. Things get lost so you have to start again.

we do question in our minds the cocktail of drugs my relative is prescribed. In his mid 80’s with Alzheimer’s. He’s on statins, drugs for high blood pressure etc etc . Physically he’s improved since he went into a care home. He’s put on weight (he was gaunt before), eats very well.

Totally agree.
Anyone who has helped a parent through dementia would not oppose euthanasia.
I’m in my late 50’s and have now been dealing with parents’ ill health since I was 25. Mother is now 90, spends her life in pain with her whole world now shrunk to a recliner and her jigsaws. This was a woman who lived and worked all over the world. Dementia has now come for her and I’m devastated at the thought of going through this again.
As soon as I can no longer look after myself I want to die and I will be making every type of living will and putting strict dnr’s in place.
I don’t want my old age to be like my parents and most of all I don’t want my child to have the burden and expense.
Excellent article OP. Thank you.

I get that. But that's in the current system. We are talking about improving the current system. And I don't think improving care for people who have low quality of life is the answer. I don't know what is. We find ourselves in a terrible mess and all of our own doing.

I do too, early 30s and they were gone. I struggle to accept the sympathies from people having to juggle older parents and young children when in reality my life in my late 30s is calm and peaceful.

@mathanxietyI think the modern problem is that while there have always been elderly people, they haven’t literally been kept alive for years. People are bed ridden with dementia for years! Families tended to look after their elderly because, while heavy and time consuming, care wasn’t complex and intimate care tended to be for a very short time. No surprise that pneumonia was called Old Man’s Friend-now we treat it aggressively so we can keep people alive and give them more treatment for all their comorbidities. You’re right that the burden has always fallen on women-and still does. As someone entering the winter of my life, I think we do strain to keep people alive and give at the expense of everything else and I don’t want my children to have the stress and worry of caring for me when I’m infirm.

This article gave me permission to feel something I've been reluctant to admit out loud. The weight isn't just the practical load — it's the anticipatory dread. Waiting for the call. Wondering if today is the day something goes wrong. That low-level background hum that never quite switches off.
The point that this is a genuinely new phenomenon doesn't get made enough. There's so much guilt attached to finding it hard, as if previous generations managed it without complaint. But they didn't face the same thing. People didn't survive for years in serious decline the way they do now. Previous generations dropped dead relatively quickly. The comparison isn't fair to anyone carrying this right now.
The LindorDoubleChoc post resonated — dreading every Sunday, anticipating the call. That's such an honest thing to name. Not the emergency itself, but the endless low-level weight of it.

It occurs to me that the whole development of the LPA system has become a double-edged sword for Generation X, the one above Gen X and generations below.

My old dad is 92. He can’t hear or see, he has many many ailments and is kept alive by medication and his very caring wife. When I pop round to see him, he tells me that he can’t see, can’t hear, can’t do anything, why am I still here. He’s told me many times that he just wants to die. He’s clearly very unhappy, but there’s absolutely nothing I can do about it. I feel for my old dad.

My mil, by contrast is in a care home. She’s 93, doubly incontinent, can’t walk, but likes to order the staff round like they were her servants. She moans about everyone and everything. She’s gonna live forever. Although I’m just the dil I get all the stress and poison aimed at me. I’m waiting for a call from the care home…,she will probably outlive me.

It sounds like your dad has capacity and understands his plight @GenerousGardener. Does he have the ability to refuse the medication that is keeping him alive? Surely it's his choice, it's everyone's choice to say no, I will not take these pills, injections or whatever. It's all absolutely horrible, but surely if we believe in 'bodily autonomy' in the case of women choosing to have abortions etc, that should also extend to our right not to take life-extending medicines when we have no quality of life. So awful for him and you having to witness his suffering. 💐