Guardian article today that might resonate here

My parents and in-laws have rung every last resource from the NHS.
Meanwhile at work we have a 50 year old welder looking for a knee op whilst my friends 86 year old, with Parkinson's and now dementia father gets new knees but never actually utilizes them or walks again.

My in-laws are also rattling around with pills and new pace makers whilst their 50 something daughter will probably die with cancer very shortly. It's against the natural order, we will have grieving teenagers to support along with incontinent elders with grief and memory problems.

They don't rage against the coming of the light they sit passively with sunglasses on and black out blinds. I long for the whole lot to fall away and a sharp bolt of lightening take them out In one almighty bang.

I've posted about this before but I remember going in for one of DF's non-EOL hospital trips, saying he had no quality of life and my Mum shouting over me that he had a great quality of life (he couldn't walk, really move, speak, or use the toilet).

After he got put into a care home she tried to get him on the waiting list for cataract surgery, insisted the local optician send in the referral and was upset when he wrote on it that he was doing so at the behest of the patient's spouse.

I guess you're always going to get a certain percentage of people that think that because a medical intervention is available it should be carried out. I'm not sure how you stop this though -she was very into religion and magical thinking, and I think thought she was giving God an opportunity to perform a miracle.

I agree. I think we need common sense doctoring. In the case of the pacemaker being fitted, it was easier for the medics to justify their action as opposed to their than inaction, both to themselves and their superiors. Even though inaction would have been the better outcome for all. I think doctors and vets frequently have to think what are the possible repercussions of me doing something or not doing something and how will I justify it if I need to rather than what is in the best interests of the patient here. I'm not the biggest fan of doctors as a rule but I recognise a lot of the problems come from the system in which they work.

I suppose doctors are afraid of patients’ families. For every person hoping for a peaceful end to their relative’s suffering, there will be someone demanding intravenous feeding etc etc.

I was in hospital and a man was raging at the nurses, saying they had killed his mother. The nurses were firm in saying that the lady had been brought in from her nursing home with advanced dementia and end-stage cancer.

I understand your point about doctors in the wake of the Shipman horror @redboxer321. Unscrutinised power is wrong, but now we've swung to the other extreme - doctors who won't let the very frail and sick elderly decline and pass naturally, for fear of repercussions - and I think the pendulum needs to be in the middle.

Different attitudes towards treatment too - two generations above me very clearly thought that the doctor knows best and would take/do whatever was on offer. The idea of discussion, research and consent was very alien to them. The generation above me isn’t quite as bad as this but still seems to think if they’ve offered an operation or procedure they should take it. Whereas the doctor is following a protocol!

Meanwhile I go into medical appointments armed with research and make the doctor go through pros and cons before agreeing to anything.

Doctors are definitely allowed not to offer treatments that they think mean more harm than benefit, just like people are allowed to refuse what’s offered. But it’s a really tricky decision-making process, all the more so if someone doesn’t have capacity to decide it themselves. Again, our elderly people deserve that we speak up for them to stop over treatment. But how on earth are we supposed to know for sure? It is very hard to do.

@EmotionalBlackmail Duncle was retired by the time DGPs care needs really ramped up, they both lived into their 90s, DGF to 99, I couldn’t understand why everyone was so terribly and genuinely sad at the funeral, he had been saying he wanted to die since a car accident aged 91 which took most of his mobility, were they expecting a 99 year old not to die ?

@namechangeabc123 I naively thought when my work contract ended back in August that I could ramp up the visits to my DPs and save on the inevitable care home costs. Hah ! By October I was at the doctors and given a choice of HRT or antidepressants. By November I was having full blown panic attacks before and after every visit ( never had them before). By January DH who had retired had to take over the majority of the visits because I just couldn’t do it.
Now they are in a care home I feel like a huge weight has been lifted and I can live my life again. Hats off to anyone living with or frequently going to an EP with dementia, or even two. I never knew what I would find.

Not sure that doctors are allowed to do that though. Or if they did, they'd be leaving themselves open to being sued or struck off or whatever.
I agree it was total madness to fit a pacemaker but it's the system that has to change.
That's what I mean when I say we need 'good' Dr Shipmans, although I know if has horrified some posters, but perhaps i wasn't clear.

I haven't been posting here as I said before

But today I came dangerously close to saying to my mum "how can you still be here?"

I'm going to have to start behaving as if she'll make it another 10 years. Or worse Because eight years ago, I did not think this would be happening.

I haven't been round there for a week, which is unusual. She looks extremely well. It occurred to me that in spite of the relentless moaning, her lifestyle is very relaxed and that may explain why she seems healthier now than five years ago.

That’s definitely food for thought.

Possibly, but my mum (a boomer) cared for her mum who had dementia. It made my mum so ill that her health completely broke down. She told me that if she ever got dementia to put her in a home and live my life. It’s often not just a few months or even a couple of years caring for someone with dementia. It can be a decade or more.

But did your Duncle work and pay rent or was he solely there caring and living rent-free on carers’ allowance? How did he manage full time work and doing personal care?

I have sometimes thought similarly to you but a lot of women in previous generations of my family did do the care themselves, but were very much subsidised by the elderly parents (ie they had little freedom as still lived at
home but no housing costs), could afford to work part-time or retire very young and then do the care, then inherited when the parents died. But it did come at great personal cost - one that I’m aware of was denied permission to marry because it was intended she’d care for her parents!

I think a lot of it depends on what you are giving up.
You said in your previous post that if your parents hadn't gone to live in a care home, it would have effected evenings out and holidays and possibly your job.
That's not selfish to want those things and I don't think it's too much to ask. I also don't think many parents would want their children to give up life's pleasures or opportunities or have their chances to experience them negatively affected.
It might be that your uncle didn't have much going on his life so there wasn't much to give up. That's sad in itself of course.
I'm sorry to have to admit that I might be not completely unlike your uncle (don't know how his life is/was of course). I don't want to care for my mother in her old age but, if I did, the fall wouldn't be so great.
Which is a bloody tragedy!

If my father hadn’t had a pacemaker fitted in the middle of the night his heart would have stopped in his sleep and he wouldn’t have known anything about it. A few months later I had to take him for a checkup with the cardiology team - the technician showed me how many times the pacemaker was being activated. Having the pacemaker gave him three more years of life but they were three years of miserable decline. If the doctors had taken a more holistic approach to his care and talked to us about his quality of life I’d hope that they wouldn’t have decided to treat his slow heart beat so aggressively - it did no one any good - not my father (who I loved dearly), not his family and certainly not the NHS nor taxpayers.

I think your description completely sums up what the vast majority are saying and thinking.
I cannot see any reason or kindness in giving repeat medication to old, frail, near the end of life people and just prolonging their misery .
Of course it's their misery and every action taken or not taken is and should be in their interest only, it is not about what is best for family members.
But whether anybody agrees or not there must be endless families whose primary emotion is relief, relief that the burden and responsibility they have been shouldering for however long is now over now that their elderly family member has died.

@readytedy that is such an interesting comment about us all expecting more personal fulfilment than is reasonable.

At times I wonder if I am just a product of my generation, not willing to sacrifice my financial and personal freedom to support my DPs ( they both have dementia and live an hour away, realistically the way it was heading the only way I could have kept them in their own home was to
move In or source and manage full
time carers on top of managing their household).

But Duncle lived all his life with DGPs and provided personal care for around 15 years, with no complaints and no expectations of anything else.

Are we a selfish generation? I don’t know the answer .

My takeaway message from this thread is that there should be a big push for living wills. That combined with POA hopefully gives the best chance for me to avoid all these awful interventions.
If I develop dementia and it is advanced I do not want a feeding tube or antibiotics. And most definitely no CPR.

My own grandmother had a massive stroke at home in the late 1970s . There was no drama or blue lights. The family doctor came out and said she would die in the night- and she did- peacefully in her own bed.

Hard agree @Hangerbout. There is zero point in fixing a body when the brain is slowly (or rapidly) dying. Until they crack that one, longevity is just prolonging the agony. Reminds me of a particularly tone-deaf piece I saw in the Daily Mail a while back, reporting that a study had found that it was 'bad news' for men with dementia as they only tended to live for four years post diagnosis, as opposed to women's ten.

I actually think this is a feminist issue. It’s mostly middle aged or newly retired women doing all this caring for years (or even decades) after the heroes, technology and fancy chemicals have saved/extended lives. And just like mothers or teachers who aren’t automatically acting like mother teresa, someone pops along to tell them they’re not being caring enough just when they’re thinkng about having a cup of tea or contemplating an impending nervous breakdown.

There’s a whole industry feeding off this. Taxes on the workers to keep the NHS prioritising extending life (at the expense of, say, maternity care), taxes on workers to fund social care, profits for care homes and of course for all those pharmaceutical companies preparing their elixirs of never ending life.

I certainly don’t want my children to be brow-beaten by society into keeping me going while I’m a mere husk of a human. I want to be remembered for what I added to their lives, rather than what I took away.

I agree

Fine i get it. But i also wonder what kind of care people get in care homes behind closed doors when nobody is looking. 2 members of staff to god knows how many residents....just so the care home owners can.make a nice tidy profit. Care in this country is abysmal. They do it far better in some other countries. Please do not underestimate how shit care can be here. Just like so many other things that this country seems to be crap at. If i was younger i would definitely leave UK. We"ve got hundreds of thousands of unemployed people that we seem incapable of training. We have thousands of old prople who could have a more productive life with a bit of tweaking and imagination. But we just like to dump everybody on the slag heap in this country. Why? Why is there such poverty of thought, action.

I think euthanasia should be an option for individuals to take if they want it.

But at the moment the NHS seems hellbent on keeping people alive in awful circumstances - if that stopped then it would go some way to resolving the euthanasia issue for many individuals and families.

Caring for very ill, elderly people can shorten the lives of the carers for various reasons - stress, mental ill health, hard repetitive physical work, substances, lack of exercise, lack of money so poorer diet and lifestyle. It's not just about popping granny off the mortal coil so her family can skip off to Benidorm via the local Spoons.

Such a difficult topic. I am probably only at the start of all of this, dealing with my parents and my husbands parents getting old and my only sibling has a life limiting illness which means their care will also likely fall to me. My husband has a condition which could result in significant disability as he gets older.

I myself have been ill since my late 20's with a chronic condition and just recently started a new treatment which is giving me some of my life back in my late 40's. I want to focus on regaining my physical strength and energy and to go back to the career I used to love in some form or another as well as make up for all the lost time of adventures with my husband especially as this might get difficult for him in a few years. However I can see that within the next few years I might have most of my new health and energy taken up with looking after other people. Its difficult because I love these people and want to be there for them but I only have one life too.

I find the article and the replies depressing as well, not because they are wrong or even unreasonable but I suppose just because of what they reveal about the reality of life, love, human relationships and the limits of these things. I feel that life is always a struggle and always has us in the back foot, perhaps except for the lucky one's in childhood. We are struggling with trying to attain some version of the life we envision for ourselves when we are young, struggling in our careers, to pay for everything, to raise our families and then just as we get a bit older and we think we will have some time to really live we go though the menopause, begin to really experience our own aging, then our parents aging, and needing care and their suffering and decline not just physically but often in their mental and emotional state, its really painful and you also know that you'll end much the same and then buy the time you are free of those responsibilities your are likely facing down your own decline into old age as well. That is exactly what happened to my mum who spent 2 decades both working fulltime and caring for various family members though illness or old age and as soon as that all stopped literally a year or two into her retirement her own health began to seriously decline and she is now quite frail and her mental and emotional state quite negative and fragile. I often feel that its mostly the more negative parts of her personality that remain without the fun and clever parts. Its difficult to see a fiercely intelligent woman spend her days scrolling tiktok and buying stuff on temu as a way to get some kind of stimulation and refusing all other offers.

I think years ago she would have said she didn't want to go on if she was like that and yet now she very much wants to live even if from the outside her life looks grim. I kind of get that, I spend years in almost constant pain and 20 year old me would have rather died than live like that but I still wanted to live when I got there even at my worst I never wanted to die, obviously being much younger means I still had a chance of recovery but also your tolerance and expectations change according to your circumstances to its problematic to assume that elderly people you perceive as having little to no quality of life would be better off just dying.

I don't know what the answer is because those of us doing the caring are also suffering and feeling like we can't really live our own last good years fully. Perhaps life is just meant to be hard and full of struggle and pain and we all (myself more than most) expect more personal fulfilment than is reasonable? Perhaps people should just be euthanized at state of poor health to free up, time energy, property, wealth and so on for younger generations? I do see an increasingly Utilitarianism in society which might be pragmatic but also dangerous. I think it is motivated by the extreme pressures families and the state faces. I've also see calls to not try to save the babies more with the most severe illnesses because if is felt they don't have a good quality of life the cost of their care is astronomical.

I am not opposed to assisted dying but I also have a lot of doubts about it in a society that is so desperately struggling to cope both on an individual and collective scale. Ideally I want older people to have access to life saving medication but with a focus on an increased health span over just living on in frailty and ill health.

I agree with everyone its a conversation we need to be able to have and I am really thankful to all the posters who shared their stories and feelings on this thread.

That is very well put @redboxer321. My friend’s DM has been on end of life pathway in her care home since December. And - this may sound brutal- but my friend still has to go to work to pay her mortgage and bills, plus look after her dependent DCs.
I have very mixed feelings on euthanasia, but I don’t believe continuing to feed and hydrate a person who is clearly dying should fall into that category and helping someone to die gently when it seems their body is ready to is a kindness for all.