Why do we (as a society) do this?

[Zoopet]

So I've just visited my Mum.(stage 4 Parkinsons)
She's in a very good care home and the staff are great.
She had another collapse during the week and was taken to hospital but tests revealed nothing and she was discharged back to the Care Home.
When I visited this morning she asked for the toilet and after the hoist was used and she had to be completely washed and reclothed due to horrendous diarrhoea I was asking myself why do we do this?
It's a miserable existence for her and due to her Parkinsons she has zero quality of life.
She's still convinced that her partner has gone off with someone else( he died from covid last year)
and we have the same conversations every visit.

No dignity just a terrible physical and mental decline.
I just feel utterly depressed.
I hate visiting but will continue to do so but God it is truly awful.
Just wanted to vent.

But it's legally necessary unless some has upon their person and viewed by the paramedics a DNR.

I was simply reflecting on the cultural idea about what constitutes "playing god" in medical care. We're very quick to label allowing someone to say "enough" as "playing god", when actually isn't dragging out an inevitable death in such inhumane ways the unnatural act and example of attempting to play God?

Strictly speaking, it is actually not the case that CPR can and should be administered to anybody without an Advance Directive refusing CPR. Legal obligations on medical professionals also surround not inflicting harm by attempting resuscitation when it is not in the best interests of a patient and will cause harm.

But people have lost sight of that because we have become obsessed with avoiding death or doing anything that might in any way be considered to have hastened death.

I do agree with you that it is better for people to have conversations around CPR and ADs in advance. If people understood what CPR entailed I am sure many would make different choices. I think some decisions around wanting CPR are made through fear and lack of information. (Although I do appreciate that it was handled horrendously badly for many people during covid - being imposed unjustly, being raised without any compassion, etc. That I don't agree with at all.)

If we had better conversations around death and dying it would help. It would be less frightening if it was talked about, not shushed.

I am so sorry you are going through this op, it seems so inhumane to watch our loved ones suffer like this.
My own lovely mum has Alzheimer’s and is in the late early stages, we are going to have to watch her suffer for years to come and it breaks my heart every minute of every day knowing her dignity is slowly being chipped away every day and we are helpless to do anything to make it better for her. She was the best mum and looked after us so well and we don’t know how to help her now that she needs us the most. She doesn’t want to live anymore.
My MIL passed away a year ago from metastasised bowel cancer, her death was absolutely awful and will haunt me forever, she was in terrible pain, could not keep from vomiting and having horrendous diarrhoea all day, everyday. There is no way I would allow any beloved pet of mine to suffer like this yet we are unable to do this same for humans so we have to watch those who we love the most suffer from pain and unimaginable loss of dignity and the poor underpaid carers/health care workers have to clean up after them and have to listen to these poor patients begging them to put them out of their misery as my poor mil did. It’s heartbreaking all round and I hope and pray laws will change in the not to distant future.

The first thing I'd put in my advance care directive is no flu jab and no covid jab (I am fully vaxed now). If one of those comes along when I'm in a care home, let it come.

part of the problem is that the right paperwork isn't always there at the right time, and the default is always to treat. my aunt was taken from nursing home to hospital and plugged into IV antibiotics even though it was not clear that was in her best interests. finally, there was a directive that she should not go back to hospital - she hated it and it did not help the dementia.

My mum always said she'd rather have a pillow over her face than live with dementia.

But then she got dementia and doesn't believe she has it. So a long slide into indignity and death. She doesn't even know who I am and just thinks I'm some vaguely pleasant woman.

My dad appears to be planning on drinking himself to death in his local. I don't have a problem with that. I hope to god I've got more of his genes than hers.

I hope that in my lifetime our laws will recognise that it is a basic human right to choose how and when you die-for the reasons PP have said. My body, my choice.

Quality of life is subjective but in general I would say what doctors think is an acceptable quality of life isn't good enough for me.

I agree. I think that is a product of a training culture that actually does not place value on quality of life and creates a mindset of doing whatever it takes to prolong life without any consideration as to whether the person will be left with any life to live/worth living after the intervention.

I also find almost a denial amongst medical staff that dying is ultimately the conclusion for all patients.

I have had to have conversations with my own doctors about the point at which I want palliative care only. It was a battle to get them to even engage with that conversation or accept that yes, I was free to make that decision and yes, it was a legitimate decision.

If in the process of "saving" my life you leave me so damaged I cannot live my life in any meaningful sense, then what have you achieved? What were you trying to achieve? Where do your ethics fit into that picture?

They never pause to think about what happens after they "save" the life, and that is a gross failing in our medical system.

When my granddad was kept alive by machines at the age of 85 due to having cancer and mrsa, my mum and auntie just wanted to put a pillow over his head to end the suffering to them all. Alas, they had to wait another 3 weeks until a professional gave them the option to turn support off

It is completely illogical that someone terminally ill should have to suffer indescribable pain, distress and other horrors so that cancer or another disease can slowly destroy their body and kill them, rather than them being able to choose the point at which they have had enough.

It is perverse. Utterly perverse.

If you have a religious belief that your death is meaningful if you allow it to slowly fade away "in God's hands" then that should be your choice. I have never seen anybody propose to take that right away.

But it is unforgivable to force such a death on other people who do not share those beliefs and do not find such a tortured death to be comforting or meaningful, but traumatic and distressing.

Feel the same, my darling mum is in advanced stages of dementia. She has zero quality of life and to see her reduced to a shadow of her wonderful former self is utterly heartbreaking.

My husband has terminal cancer, he was doing OK until he had a massive stroke. Now his tumours are growing, he has lost the use of his right hand side, he's lost his speech and he is no longer a candidate for chemo. I wish the stroke had never happened but, if it had to happen I wish it had done its job, watching him like this is hell for us all. It is absolutely not the way he would want to live his life and yet, the worst is yet to come.

This is food for thought indeed. My DM suffered from dementia for several years. She was bed bound, doubly incontinent, non verbal and incognisant of her family and surroundings. A team of people managed her and kept her alive, including my Ddad, who sadly passed away before her. She had no quality of life at all and, as a person, had died about 5 years before her eventual end. If this is what is in store for me I don't want it, and really need to put these wishes down somewhere. As a society we really need to do something about this.

@dreamingbohemian

I'm so sorry OP, I completely agree with you

I think the reason it's hard to get change going at an official level is because of the risk that it would be abused, either by individuals or by governments.

There is also the risk that it might increase callousness toward elderly people with health issues.

Not enough countries have made it legal for long enough to have a good sense of the risks.

Personally I agree with legalising it but I understand why people are concerned.

I wonder if there are any figures available as to countries who have legal euthanasia and do/do not charge fucking extortionate care fees.

They never pause to think about what happens after they "save" the life, and that is a gross failing in our medical system.

This is exactly how I feel.

Such a heartbreaking thread to read.

I have two close family members with dementia (different variants). If I had the faintest idea I was getting it, I’d be off. It’s not living, it’s existing.

@Turquoisesea identical situation to me, five years in a care home, I visit every week but she is usually asleep and when she does wake she doesn't recognise me. We were so close it's heartbreaking. There was Covid in the home last year and they lost half their residents, mum had it but got better. I wish she could be at peace.

Actually I'm thinking back to my DGF in hospital after the car crash in his 90s. At the time DM was horrified that the nursing staff weren't hand feeding him and said he would have died had the family not been there. I'm now wondering if that was meant as an act of kindness rather than understaffing, as the nursing staff would know the likely long term outcome of things.

I have a Living Will lodged with my local hospital and my GP. It says that if I have lost my marbles they must not treat any illness but let me pass with just pain relief. If I do still have my marbles then I've requested treatment for illness.

If it ever comes to going into care then luckily I take lots of meds and if they ever think I need to go into care I'm going to ask for time to get used to the idea, and in that time I will swig my meds all in one go ....

Nothing but sympathy here, Op.

I had to put Mum in a nursing home towards the end of her life as there was no space in any of the local hospices and the technicalities of her cancer care/symptom management meant she needed nursing care round the clock. The whole experience was nothing short of traumatic - largely due to inadequate staffing and my Mum just being depressed and anxious, she was just pleading for someone to just knock her out of her misery. 4 years on and the memories are so awful I have just mentally shut them down. Has made me completely rethink my stance on places like Dignitas....

@cptartapp

I've been nursing over thirty years and completely agree. Cure this, cure that. Pushing statins and BP medications down people's throats whilst they lie semi comatose for months and years on end. The last memory of my previously vibrant and outgoing GM as I 'chatted' to my very elderly GM in her carehome is of her wetting herself and having no realisation whatsoever. Modern medicine is a victim of its own success.

You are absolutely spot on. Life is being inflicted on my DM and it’s so wrong.

@lollipoprainbow so sorry you are in this situation too. My mum also had Covid early on before vaccines and survived. She was my best friend and the loveliest, kindest person you could ever wish to meet, we were so close. I miss her every day as the mum I have now, although alive, isn’t the same mum I knew. She would have hated to know she would have ended up like this. She’s on palliative care now so if she has an infection or anything at least she will won’t be going to hospital. I just hope she doesn’t last a few more years like this. It is death by a thousand paper cuts, each time I visit a little bit inside me dies. I sit holding her hand and stroking her hair and wishing she would just take a last breath and that would be it. I don’t think she’s suffering at least which is something but I just hope when the end comes it is quick and peaceful. Sending to everyone in the same situation.

I know how you feel OP, my DM is in a care home, she no longer knows who any of her family are let alone anything else. She has zero quality of life and I know she would hate her existence if she knew about it. As horrible as it sounds, I keep hoping that this won't carry on for years. I'd be quite happy for her to just go to sleep one night and not wake up, because all that is coming is further decline to the point where she won't be able to walk, talk, feed herself and that is hideous to think about.

@Antiqueanniesmagiclanternshow

I completely agree. Euthanasia should be available. We wouldn't let a dog suffer the way we allow humans to suffer.

This. I understand the risks involved but on an individual level it seems unbelievably cruel. There have been a couple of countries who have recently introduced assisted suicide/ euthanasia legislation. In New Zealand they have passed legislation calling it a victory for kindness and compassion. I think that it's true you wouldn't allow a beloved pet to suffer but apparently it's fine for a family member to suffer a long lingering end with no hope of quality of life or recovery.

There's a history of dementia in my family and tbh when my time comes I'd much rather be able to choose my end.

My Mother lived till she was 93 and my Aunt till she was 94. Both of them should have died a decade earlier, because the last decade was not great and the last five years for both were terrible. They did both still live at home with a child caring for them and carers coming in as well. Women in my family often live till in their nineties, it’s not a new thing and has been happening for generations but always in poor health due to very bad bones, hyper mobile joints and mechanical issues so it doesn’t kill them but they are in a lot of pain. As a child I was taken to see a very old lady who was a distant relative and almost 100. She was blind and had to be picked up as she couldn’t walk at all and every movement caused a small whimper. She felt my face and I remember at that time as a 12 year old girl thinking I don’t want to end up like this. She would have been born in around 1880 in mainland China, what a life she must have had.

Couldn’t agree more.

I’ve seen post of very very unwell people continuing to be treated for unrelated conditions when they already have no quality of life left and wonder why on earth we do that.

I’d like to have some kind of living will designed to allow me to die when I reach such a stage - eg. If I get an infection I’m to receive palliative care only.

And more actually - I’d go so far as to say if couldn’t eat and no longer wanted to or would be aware enough to eat if not want to be fed or anything like that either.