Why do we (as a society) do this?

She too, will end up smiling and nodding at people, whilst being cared for by strangers. That's not a life

It might not be a life from your perspective, but if she is content why is it "not a life?". My DM spent a few years in a rest home, she had mild dementia so I was lucky as she still knew who people were, and you could still talk to her. There were others there who were worse than her, but in the main they seemed happy, and the care was excellent. I for one would far rather be "cared for by strangers" when I got to that stage than put the burden on family, and the thought of being in a rest home does not fill me with dismay.

I would like doctors and journalists who intone 'we need to talk more about dying' to role-play conversations between relatives and HCPs where the relatives are desperately trying to prevent more treatment and the HCPs are desperately trying to manage impossible situations. Imo it's pointless talking more about dying if you're not talking specifics.

I didn't want to prolong my mum's life. But I could not manage her at home, she was repeatedly falling in pools of her own urine. She ended up going into hospital and is still in a frankly miserable existence 4 months later despite at least some written attempt to stop people 'saving' her. I've now had to have the same conversation about avoiding treatment with a string of doctors and still feel I need to protect her from it. And yet she survived that incident and is not imminently dying; she might live for years in a life which isn't a persistent vegetative state or anything but is still miles short of anything she would previously have regarded as acceptable. And I do not accept it for her. I can't actually do anything except look for opportunities to advocate for her wishes.

I should add that the old lady who was DNR in the care home did I understand have fairly extreme dementia and was doubly incontinent and in her early 90s I think, so in her case - though I hate to type this glibly or seem to be - her family were ready for her to go when she had a massive heart attack.

It was not the case of someone who had been generally alright at home suddenly taking a nosedive in their health.

Hi DeedIDo I'm sorry to hear this. My finding is that this is the first time many of us get to encounter 'the State' - handing parents over to them - and it's a rude awakening.

It seems as if control is everything. If somebody wants a quick exit and DNR, the State seems keen to deny it. If another wants to live and have a chance - as my mother with Parkinson's certainly did - the State will be hell bent on killing them off, by stealth it seemed to me, via deliberate dehydration in the care home.

I know of someone who had your experience, in this case they had DNR but the notes weren't with her when she went into a care home for respite for a fortnight. So they were forced to resuscitate and it was a bad trauma - from what I understand, the hospital basically had to finish her off with a load of drugs, but that is off the record so to speak. The hospital chaplain stepped into ensure it happened, as a mercy.

On the other hand you have my Mum, who had advanced Parkinson's like the OP. Nearly died via care home neglect on several occasions, nobody gets into any trouble ever, put the incidents in the local press and national press, again no heads roll. Came to realise she was on so-called 'end of life' care aka ending life care, via dehydration. Very sinister, care homes had back up via Social Services who seem to be the Gestapo. Saw my local MP Chris Grayling three times over the course of the year, he was all charm but later I suspected he was carrying out surveillance on behalf of Surrey County Council - he's not denied it. Yet Mum was okay mostly, on fork mashable, we could take her out to the pub etc That's why it took a while to catch on that any neglect was deliberate, a variation on the now illegal Liverpool Care Pathway.

Tonight's repeat of Yes Prime Minister made the point - smoking takes 100K lives a year, but think of the money they save in pensions and adult social care. Well, we don't smoke any more so we live longer - the old aren't economically viable unless they get put in a care home for the usual two years, money going to some businessmen who bung it in an off shore shell account and fund the Conservative party.

Eventually Mum died in Oct 2017. For the previous few years my sister and I had to visit her daily to see she was alright, mainly to give her drink. After that, you never trust the State again - not the police, not your local MP, not the Council, not the press who can't run the whole story you find, not the regulators who are actually acting on behalf of the people they're meant to be regulating.

Some shocking experiences here, though I'm too aware of them.

I agree with having assisted dying amd generally am rather ragey about what the medical profession do to preserve life and how the ignore DNRs!

Eddie your story in particular struck me. My friend's father is dying of cancer and has refused further treatment. He gave up on chemo as it made him so ill.

His wife and daughter are not happy with his decision and I felt bad for him as he was simply refusing treatment, which he has the right to do, and they were pressuring him to do all sorts.

He takes the view he has had a good life and doesn't want to prolong the agony.

My father refused to let go - it was horrendous. I think my friend's dad, while making the decision for himself of course, is relieved that his family won't endure what mine did.

It's hard to explain how awful this "life at all costs" philosophy is for someone who hasn't seen it so I rarely talk about it. But then it becomes a taboo subject if none of us will speak up. It's complicated.

We had to to fight my mum's oncologist who wanted to perform extremely invasive surgery with a low chance of success when it was very very evident it was absolutely the wrong thing to do. Thank god my brother who is a specialist too was able to argue with her but she made it incredibly horrible and stressful for us. Made us wait all day for the paper work, told us in no uncertain terms that we were doing the wrong thing and basically laid a massive guilt trip on us. Then we had to persuade the ambulance to get her to the hospice because they thought she'd die en route. It was utterly horrible and traumatic.

The hospice OTOH were brilliant. Thank god we got her out of that hellhole of a hospital.

Agreed. However I'm not sure all HCPs feel the same. MIL's consultant seemed incredulous that we wanted to do exactly that, even though she was effectively dead already! He made DH feel as if he was asking him to kill his mother.

Agreed. As a civilised society, we need to legalise assisted suicide as a good starting point. My biggest fear is living "too long".

HRTWT. I totally empathize with you OP. I work in A&E. We not uncommonly get patients who’s end of life form says ‘do not take to hospital’ but there they are. Most commonly though we have family members who still want us to treat the patient with antibiotics and fluids as a minimum…..in my opinion this is just prolonging the downward trajectory of misery. Why anyone would want a relative in a care home with severe dementia and doubly incontinent treated to live a bit longer is totally beyond my understanding, and in my opinion, ethically questionable. In 20 years I’ve only had 3 families ask that I keep their relative comfortable and let nature take its course.

DeedIDo I'm so sorry you all had to go through that, and it's outrageous.

I experienced similar with my mum.

We thought we had set everything up for MIL, 89 and recently diagnosed with dementia. She had a POA for health and welfare which was quite specific about not prolonging her life, and a DNR. What actually happened was this.

MIL fell at home and was admitted to hospital. At this point she was mobile and continent. After two weeks in hospital, she was neither. They tried to discharge her like that, even though she had been living alone with minimal support prior to admission. We refused to take her as there was no offer of equipment or a care package and she was then sent to a care home for rehabilitation.

In the care home, she received very little care and no rehabilitation. We were initially discouraged from visiting so she would settle, but were assured on the phone that she was fine. DH went to see her after a few days and found her very unwell. The home staff were evasive about how long this had been going on and whether she had received any medical attention and in the end DH called an ambulance himself. The manager of the care home said MIL needed to go to hospital, in contravention of what it said in her POA, as the care home did not do end of life care! Paramedics said MIL would die on the journey. In their view she was that close to death.

After a stand off, MIL was bluelighted to hospital, where she was resuscitated, contrary to both her POA and DNR and lived another ten days, only receiving proper palliative/end of life care in the last 12 hours. During this time she was on a glucose drip and there were repeated attempts to feed her, although she was only semi conscious at best and had lost her swallow reflex. Staff would not discuss her care with us until we confronted them.

I don't think DH will ever recover from this and I have seen enough to know that I will need, as far as possible, to have control over my own death.

We too can get support in dying at home, but there’s a difference in the support required in dying eg from cancer, and the support required where “death” is merely the end stage in a decline lasting years.

I am so grateful to live in Canada, where we have MAID (medical assistance in dying) and you can choose to pass at home.
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I am so sorry for the struggle your family and you face, it's heartbreaking

I think we should be able to decide long before we get ill if we would want to be euthanised and at which point, and then I think we should be able to sign off on that decision every year. Even with advanced directives it can be ignored, one of the carers at my Dads home was telling me a fellow relative who had stated that they did not want to be peg fed when they were unable to swallow, when the time came the family disagreed and they were peg fed and continue on. As someone who doesn’t want this (to the point that if there is an afterlife I will come back haunt the fuck out of the person who overalls my wishes) this utterly chills me. The carer said she hated loosing a resident, the problem is they only see the person as they are now, not the Mum or Dad from your childhood who would have hated ending up here, and they just want to keep them alive at all costs and don’t understand these people are dying.

It's very hard. We can make an informed choice to put our pets to sleep to give them a dignified end but not our relatives.

There's so little that people can do to achieve their wishes if they would want to go sooner rather than later. DM has an advance directive - only pain relief, no artificial feeding, but despite advanced dementia she's physically not too bad so lingers on despite no longer knowing where she is, not weight supporting any more and often being anxious (so far as we can tell, she's now been non- verbal for a month).

She has a PhD and her intellect and a sense of being useful were absolutely central to her sense of self. When she still had capacity but after diagnosis she tried to kill herself twice - once with a paracetamol overdose and once by not eating for two months. But here she still is and I can't do a thing to help her other than sing her old favourite songs, when she isn't wailing too hard to hear them.

YANBU

Thank you for sharing Permanent

Nota when my dad had a stroke he appeared much less incapacitated than your mum but I could see that everything in life that he valued had gone for good even though he didn't know it. At 88 he liked playing bridge, driving, newspapers and crosswords, witty conversation (on his terms) and being the competent one in his relationship. None of that was ever going to be possible again.

The hospital hadn't spotted that his symptoms had got worse since admission and that he was eg unable to start off the process of lifting a cup to drink, so he was sitting there slowly dehydrating until I arrived. Because he was posh and would respond with flowery set phrases they thought he didn't have any confusion or language difficulties when in fact he was barely communicating.

He was admitted on a bank holiday Friday and I saw him from lunchtime on Saturday. There was a top consultant on over the weekend and we started to discuss a light touch approach - humane and helpful. Then there was a new consultant on Tuesday morning. He swept into Dad's room with the team and gave a loud enthusiastic pep talk from the end of the bed about how it was a small stroke so Dad would be home soon (I'm sure it was small on the scans. The effect on Dad was not. His girlfriend was 94 years old and demented, so he was not going home).

I spoke up and asked that if Dad had another stroke or an infection, could we discuss less active treatment? I wouldn't have done it in front of dad but it seemed my only opportunity. I thought i was being very reasonable. The consultant reacted as if I'd been found holding a pillow over Dad's face. He didn't pull me aside and ask what I was thinking or what had led me to this, he just blustered. It took him another 3 weeks to agree that we were moving towards end of life, and it still took a very senior nurse at the right moment to prevent inappropriate treatment from the medical team.

I don't know what the answer is. So many families seem poised to guard against the team 'giving up' on their 95 year old crumbling relatives. Frankly I find it difficult but I have to remember that my opinion , that better a week early than a day late, and that quality of life should be more than 'still eating' , isn't everyone's.

Totally agree. DM has recently had a massive stroke and has been left bedbound and completely incapacitated. She has zero quality of life, and zero dignity. This was a very proud and private woman.

When the Dr spoke to me I actually asked her why on earth she was keeping her alive to prolong such a miserable existence. The Dr thought me a terrible daughter. I think it is wrong.

We would all want to be bumped off by a caring relative but we can't be. The law must change, and I am part of a campaign. I spent many hours at the bedside of a relative who was just a shell, no speech, no comprehension, no dignity. That person would have hated knowing what they had become and the temptation to use a pillow was very strong at times.

My DF had a massive stroke 4 years ago and has expressive aphasia, is bedbound, unable to speak or walk, and doubly incontinent. It took 2 years before he recovered understanding of what was being said to him. I can visit and chat to him and he responds with a smile or pulls a face. For someone who was so physically active and articulate all his life he has no real life now he just exists. The care home staff are so caring with him and you can see that they're very fond of him, but I wish he'd died when he had his first stroke.

That was intensely rude to post that. I'm sorry. It wasn't intended to be rude but it was certainly thoughtless.

It does. Which is why my advanced directive is absolutely brutal. Once ds is 25 I want palliative not curative care for everything, no exceptions. Ds turned 18 a week ago and my advanced directive states that if my mental capacity for decisions is lost for more than a month, there are strict limits on what the doctors are allowed to do. My advanced directive has been discussed with my GP and is scanned into my medical record. I'm not pissing about. I've seen too much.

There are still no certain guarantees but it should at least restrict the saviour instincts a bit.