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Elderly parents

Why do we (as a society) do this?

163 replies

Zoopet · 16/01/2022 14:52

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.

OP posts:
Porfre · 16/01/2022 21:47

@BoodleBug51

Working in care was a horrendous eye opener for me. Why we value quantity over quality of life, I'll never understand.

My Nan delveoped pneumonia, after 2 long hard years of mourning my uncle (her youngest son) and being diagnosed with heart failure. I went in the ambulance with her, and after chatting to the Dr on duty, agreed it was kinder to let her go than treat aggressively. She was 87, weighed around 6 stone and was horribly frail/almost bed bound. Instead, my Uncle and Aunt stormed in and demanded that she was treated, and that I had no right to make that decision - even though I was her carer. She had 2 weeks of utter misery on a geriatric ward in hospital before passing away, begging for my grandad who'd died 20 years before. I'll never forgive them for putting her through that.

That's part of the problem.

For every relative who wants a peaceful end for their loved one, theres others who want everything done, and would make life hell for anyone who they felt didnt.

Slingingcontest · 16/01/2022 21:34

I'm really sorry about your mum Zoopet Flowers. It sounds so awful for your mum and for you Flowers

Whilst I personally would HATE to be dependent on others and agree that we should be aiming for quality of life rather than longevity; I don't think we can assume that:

(A) everyone feels exactly the same way about this issue. A family member of mine for example was bed-ridden at the end of his life and had lost a lot of independence and had to be fed by someone else; but he still desperately wanted to live and enjoyed the life he had (limited though it was). I would hate to think that anyone like him might feel under pressure to die before they were ready.

(B) what you assume you would, or would not, tolerate now (viewing life from the perspective of a younger, healthy and able-bodied person) won't change should your health deteriorate. An oncologist we know says that you would be surprised what people are prepared to tolerate in order to live.

So I think the emphasis should first be placed on developing better health care and pain control and dignity for the elderly and chronically and terminally ill before we talk about euthanasia being widely available.

And I don't think we can ignore the financial element of all of this when the NHS is already under pressure to opt in some areas for the cheapest treatment option available. I shudder to think how vulnerable, frail and elderly patients with no family to advocate for them, might fair in an NHS that offers euthanasia tbh.

user1471453601 · 16/01/2022 21:22

Our societies view on euthanasia ( and medical care) infuriates me.

I'm 71 and have pretty dodgy health with a number of chronic illnesses. I've made it clear to my GP that I'll do a lot of things to help my health, but I won't stop eating and drinking things I enjoy.

My DD also knows my views on quality over quantity and is fully supportive.

Everyone dies. And I like the saying that you can give up sex, drugs and rock and roll. You won't live any longer, but it'll feel like it. Imagine how fucking boring giving up every thing you enjoy would be.

My take on life is that I've had a blast (by and large) and have done for over seventy years. I hope when I go, it will be with a g&t in my hand. If that means going abroad, because this country appears to be too immature to accept the simple fact that some people feel their lives are no longer enjoyable, so be it.

Kshhuxnxk · 16/01/2022 21:08

I can't believe we need to die in secret whatever age and whatever health. If someone doesn't want to live they should be allowed to cease that life in a way that doesn't involve taking themselves off to a wood to hang themselves for a random passerby to find them or to take an uncertain overdose etc. A 98 year old man hung himself recently because his heart was too strong to let him die. What caring society thinks that is right?

ElectraBlue · 16/01/2022 20:59

Agreed.

I don't understand the point of wanting to keep people alive at all cost when we no longer have any quality of life, independence or awareness of what we are doing and who we are because of old age or terminal/degenerative illnesses.

Somehow we spare loved pets the pain of having to go through this by putting them to sleep yet we don't give humans the same rights.

To suggest that the majority need to suffer because the minority could abuse this is not sustainable either.

BoodleBug51 · 16/01/2022 20:51

Working in care was a horrendous eye opener for me. Why we value quantity over quality of life, I'll never understand.

My Nan delveoped pneumonia, after 2 long hard years of mourning my uncle (her youngest son) and being diagnosed with heart failure. I went in the ambulance with her, and after chatting to the Dr on duty, agreed it was kinder to let her go than treat aggressively. She was 87, weighed around 6 stone and was horribly frail/almost bed bound. Instead, my Uncle and Aunt stormed in and demanded that she was treated, and that I had no right to make that decision - even though I was her carer. She had 2 weeks of utter misery on a geriatric ward in hospital before passing away, begging for my grandad who'd died 20 years before. I'll never forgive them for putting her through that.

Georgeskitchen · 16/01/2022 20:42

I was a home carer for years and witnessed so much misery. Tiny frail elderly folk taken into hospital, medicated up then sent home for a few more weeks/months of misery. Nobody seems to be allowed to pass away peacefully nowadays.
My mum has advanced dementia and also aortic stenosis. She was offered surgery but declined (when she had mental capacity) she also has a DNAR in place. No intervention ,just be made comfortable and allowed to slip away.
In my role as a carer I witnessed paramedics trying to resuscitate a lady in her mid 80s with severe heart failure. It was horribly undignified and she died anyway.
I realise that paramedics are required to try and resuscitate people and are not God, but it's awful having to witness this

Suzi888 · 16/01/2022 20:40

I’m so sorry Flowers
It’s horrendous and heartbreaking and all you can do is be there.

I don’t understand why in this day and age we can’t whilst young and sound of mind put something into place whereby if certain things happen/ certain diseases or loss of function take place we can’t arrange to pass quietly and with dignity.

The problem with places like Dignitas is the person had to be sound of mind, often pass earlier then they would care for, worry relatives may be prosecuted and have to be capable of lifting and consuming the means, it’s also costly. It’s something I will consider using myself in the future though.
We had these discussions as a family and my aunt always maintained she wanted to “see it out” if she became sick. She was diagnosed with dementia age 83 and passed away age 85. Thankfully could eat and drink and thought she was living in a hotel, she was happy.
It’s a difficult call. Sad

freshcarnation · 16/01/2022 20:21

My mum was discharged from hospital just before Christmas. She's bed bound, with dementia, asleep for the majority of the day, managed little sips of water and cereal. Ulcerated leg. I'm praying she has a stroke or heart attack in the night before her swallow reflex goes. If I could put up a syringe driver now I would and end it for her.

Socialcarenope · 16/01/2022 19:14

My grans been saying "I hope I'm not here this time next year" for years. She wants to be gone. She's in pain, her quality of life is poor and she just doesn't want to be here. She'd never got to Switzerland, she wants to die in England where she's always lived but she'd like to go now.

Smallkeys · 16/01/2022 18:30

I remember my friend telling me about her mother dying of bone cancer in agony it was either Xmas eve or day her sister hid in a cupboard and the Macmillan nurse had gone home by then - a horrible horrific death that has scarred her . We should do these things better. Sorry to hear if your situation it’s something I dread .

AD3000 · 16/01/2022 18:26

Thanks for that information @Purplewithred, not a nice thing to do, but sensible and necessary

cptartapp · 16/01/2022 18:25

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.

DeliriaSkibbly · 16/01/2022 18:23

@MysterOfWomanY

It's a very very delicate matter - it's hard enough getting older relatives to accept care and set up LPAs and generally trust the younger generation to help - and paranoia in dementia ("they're POISONING ME / stealing my money!!") is already horrific to deal with. Imagine what a poorly drafted assisted suicide law would do... aaargh. The worst cases are where people lose capacity and I'm not sure you could have any legal assisted suicide in that case - how on earth would it work?

It's hideous and awful and I wouldn't necessarily say no to some sort of change, but I would ALSO like to see some sort of German-style compulsory care insurance (copied from an already existing, more or less functioning system, rather than a square reinvented wheel).

People can express their wishes in advance.

That would be one way.

Of course a poorly drafted assisted dying law is not what anyone wants but other countries have assisted dying and it works well so there's nothing to say we can't basically copy their template. It is also referred to as assisted dying, not assisted suicide.

For myself, I would say that if I am lucid but in a poor situation either physically or mentally, and there is no prospect of recovery, I would want things to be ended. If I am not lucid then I would want instructions that preserved my dignity. I've spent my adult life being able to look after myself and I view with horror being in a situation where someone has to push the food in at one end and wipe up at the other because I'm incapable of doing this for myself.

It's a case of quality over quantity. If you don't want it, fine, don't have it - but don't push your choices onto other people.

Midlander88 · 16/01/2022 18:17

Agreed. My mum's a dementia carer and this is how they describe it at her work: Imagine you're on a coach trip with all your family and friends, but every time you look around, you notice one of your family/friends has been replaced by a stranger and is insisting they're that person. Then the coach takes an unfamiliar road and suddenly you don't have a clue where you're going and recognise nothing, but everyone is just smiling and saying it's fine.

My grandma's been living in a care home since covid began, and with great compassion I don't mind saying that I don't know why they put so many barbaric restrictions on them covid-wise. It's not a lifestyle I'd want to prolong.

MysterOfWomanY · 16/01/2022 18:17

It's a very very delicate matter - it's hard enough getting older relatives to accept care and set up LPAs and generally trust the younger generation to help - and paranoia in dementia ("they're POISONING ME / stealing my money!!") is already horrific to deal with.
Imagine what a poorly drafted assisted suicide law would do... aaargh.
The worst cases are where people lose capacity and I'm not sure you could have any legal assisted suicide in that case - how on earth would it work?

It's hideous and awful and I wouldn't necessarily say no to some sort of change, but I would ALSO like to see some sort of German-style compulsory care insurance (copied from an already existing, more or less functioning system, rather than a square reinvented wheel).

Runninghorse · 16/01/2022 18:13

Dignity in Dying also give free advice on Advance Decisions to Refuse Treatment. www.dignityindying.org.uk/

Runninghorse · 16/01/2022 18:11

If you feel strongly about this issue, please consider joining Dignity in Dying www.dignityindying.org.uk/

HoliHormonalTigerlilly · 16/01/2022 18:07

@Turquoisesea

I agree OP it’s heartbreaking. My mum is in a care home and has been for the last 5 years. For the last 9 months she had been totally bed bound, incontinent and spends all her time asleep. She has zero quality of life and most of the time doesn’t even wake up when I visit. It is so so cruel, I wish every day she would peacefully slip away, she is alive but not living, it’s so upsetting.
I'm truly so sorry to anyone in this sort of situation. It is utterly heartbreaking Thanks
HoliHormonalTigerlilly · 16/01/2022 18:06

This is a really good point OP.
Why are we so backwards compared to Switzerland?

DeliriaSkibbly · 16/01/2022 17:54

To add to this, and to echo a poster above, when my own father was at end of life, he had had cancer which had gone into remission then returned and there wasn't a great deal of treatment available to him. He had a fairly miserable quality of life and so, by extension, did my mother.

He was taken into hospital with pneumonia and when I was by his bed he caught my eye and he was clearly terrified. My own opinion is that he was frightened he was not going to be allowed to go. When I was talking to the registrar in ICU about the situation, my exact words were "I don't expect, or want, you to try too hard - I think it's best if nature takes it's course as long as he is not suffering". They agreed, thankfully, and he died overnight. Of course, I was very upset, but he'd had a good life and at the end of the day I think that's all any of us can hope for.

WonderfulYou · 16/01/2022 17:53

I only recently had experience of the end of life programme in hospitals and it was truly awful. I also read a few posts from others that went through a similar experience. Why just wait for someone to starve to death when you could end it sooner.

DeliriaSkibbly · 16/01/2022 17:51

Whenever bills come up in Parliament about assisted dying our MPs (who are supposed to represent us) invariably vote them down.

There is great public support for assisted dying, and other European countries have this and the system works very well. What is even worse here is that if you have, for example, a parent who has expressed a well-thought out and well-reasoned wish to die, and for whom their is no prospect of recovery and a poor quality of life, for you to take them to, say, Switzerland so they can end their life peacefully and with dignity lays you open to being arrested and prosecuted on your return.

The problem - as so often - is that MPs are not representing their constituents wishes when such bills come up.

HardbackWriter · 16/01/2022 17:48

@MasterGland

Sounds awful. I agree with a previous poster that we have become obsessed with the quantity of life, rather than maintaining quality of life. When it comes to medical care in old age, we need to be mindful that just because something can be done, does not mean it should be done.
I think Covid was the ultimate example of this. Essentially imprisoning people in care homes and denying them any contact so that they could live those shut-in, miserable lives for a few months longer just seems so fundamentally wrong.
HopelesslydevotedtoGu · 16/01/2022 17:47

It doesn't have to be euthanasia though - you could have more pragmatic decisions made about how to manage infections and other illnesses in those towards the end of their lifespan with very low quality of life.

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