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Elderly parents

What when it's our turn?

113 replies

aramox · 27/04/2021 14:21

Staggering on caring for elderly parents with no quality of life, I'm trying to think how to avoid getting into the same situation myself. I have one child who I don't want to care for me. But I also don't actually want to live that long. I don't want to be taking loads of medications and getting dementia. Lots of my older relatives died fairly easily in their 70s or early 80s, but that's much rarer now. How are you preparing your own life for future ageing? And is anyone else thinking about trying to avoid medical interventions that keep us alive too long?

OP posts:
HeddaGarbled · 28/04/2021 23:28

My mum cared for my grandmother. My mum said all the stuff you’re all saying. Now she’s actually old and needs care herself, she’s changed her mind.

Easy to say this stuff when you’re not there yet.

BackforGood · 28/04/2021 23:22

So the vast majority of posters on here intend/would want to kill themselves.

I think you are missing out the end of that first sentence, where we would say "in certain circumstances".
Most people in old age fortunately don't reach that stage.

In reality, how many people actually do that in old age? Very very few.

Well of course not, because there currently isn't a legal, or comfortable way of doing that, unless you are rich enough to go to Dignitas and well enough to travel. When the laws are changed, so that people have a realistic option, I think you'd find more folk would.

Because whatever we think when we're well, we're primed to stay alive, even when we're old and life isn't great.

I don't want to claim to be speaking for anyone else, but I'm not talking about when I've 'slowed down a bit in old age' or 'when my hearing isn't what it was' or 'when it takes me longer to do some things'. I'm talking about if I have a terminal illnesses, being given the choice to be able to have an injection or drink a cocktail of drugs when I am ready. Particularly if I have a degenerative condition and am slipping into a place where I can't talk, I can't swallow, and I am incontinent. I would like the option to choose to end my life perhaps 3 months earlier than it will end anyway with medical interventions keeping me alive. I'd like the option to know I am going to be able to make that decision when it is right for me, and not have to wait to starve to death or some other long, drawn out period where my loved ones watch me suffer because refusing food or refusing particular drugs is the only way we are legally currently allowed to choose to die in the UK.

CarmelBeach · 28/04/2021 23:16

Green

Cross post
That video really upset me, on levels I can't explain.

I can understand if you're of an age and charging around like the Queen or the late Duke of Edinburgh, you might feel differently about long life. But I am not like that.

I am sorry, it must be incredibly hard to see your parents in that position.
I hope I am not causing offence in saying that. I don't know what the future holds for my parents but the idea of them becoming more fragile horrifies me.

Runmybathforme · 28/04/2021 23:10

Can’t overemphasis enough the importance of signing a DNR document, and, you have to take it everywhere with you, otherwise, paramedics are going to jump on your chest if you croak. Informing your relatives won’t count. I’ve seen tiny little old ladies suffer the indignity of CPR, it’s a brutal process.

CarmelBeach · 28/04/2021 23:09

Mere, I don't know why my friend has 70 in her head but it might be linked what her parents health was like.

For me, I just can't imagine watching life go on that long. It feels very repetitive already. My parents couldn't have gone near those activities in their 50s and I am the same. DH much more physical. I am not sure that activities give my life much meaning anyway.

I don't know that I have any recognisable label worthy religious views but I can't help feeling that death is a release. Our 64 year old friend did a lot of good things in his life and I wonder if early release was his reward.

GreenClock · 28/04/2021 23:05

My parents are struggling at 89. They both take a cocktail of meds every day. So very frail, one with Alzheimer’s and the other with heart problems.

My newish partner is my age but his parents are only about 68 and in good shape. He wants them to live forever. I tell him that I wouldn’t wish 88 on anyone. His grandparents all keeled over with heart failure/strokes at 75-80 so he’s had no experience of really elderly people with decaying minds and bodies who’ve had a gutsful of “existing”. It’s awful and undignified.

A video featuring an ancient retired ballerina went viral last year. The music to Swan Lake had set her off doing arm movements in her wheelchair. People were calling it wonderful but I found it quite depressing how someone so talented, musical and fit had come to that.

MereDintofPandiculation · 28/04/2021 23:03

"well, there's not much point living past 70 anyway". Luckily I wasn't on the chat because I'd have got in trouble for agreeing. What is it about being over 70 that makes it not much point living? I'm nearing that age, I spend a lot of time with 70-80 year olds who are enjoying themselves immensely, travelling, potholing, kayaking... Over 80 people seem to slow down a bit, but the 70s seems to be a very active exciting time.

MereDintofPandiculation · 28/04/2021 22:51

So the vast majority of posters on here intend/would want to kill themselves. In reality, how many people actually do that in old age? Very very few. Because whatever we think when we're well, we're primed to stay alive, even when we're old and life isn't great.

I have a particular health reason to have been considering how to take matters into my own hands, and within the next few years. Then about a year ago I had a curious dream - I'd gone to a Dignitas type clinis and they gave me two tablets, one which I'd taken, and one which had to be taken 24 hours later ... and I didn't want to take it! But I was scared about what damage had been done by the first. All a dream, of course, but it left me thinking hard about what I really wanted.

Then at the start of Covid, that awful time when they were simultaneously telling older people that they had a high risk of death, but that treatment would be reserved for those "with a better chance of success", age being an important criterion, I strongly felt I wasn't ready to die yet.

Joeblack066 · 28/04/2021 22:46

@AmandaHoldensLips

Definitely. I have absolutely no interest in staying alive once I am past my amuse-by date. Once health or brain is on its way out, I have every intention of calling it a day.

My kids are under strict instructions to shove me under a bus and have been told they are not to put themselves out or even feel obliged for a single minute to become carers for me.

Ideally I would like to score a big bag of drugs and go out with a bang at a music festival like Glasto. Or maybe bung myself off the back of a cruise ship. Anything to avoid the hideous prospect of living an unwanted life.

Absolutely agree. I am hoping that Dignity in Dying becomes a thing soon, with legal, controlled assisted death.
Purplewithred · 28/04/2021 22:25

I reckon about 85 years will be enough for me. Luckily I am exposed to old age and death and know how to make decisions that will keep me comfortable but not prolong my life (as long as I have the guts to carry them through).

I am 62 and in excellent health but have a legally binding Advance Care Decision already logged with my GP and husband and kids.

Good savings for care homes, carers etc and do not expect my kids to sacrifice their lives to care for me.

Given the kids permission to tell me when I need to stop driving/need to start getting help and care.

baldafrique · 28/04/2021 22:16

A friend and I have talked about getting some heroin and going out on a major high if/when we get to the 'had enough' stage - rather that than a slow decline, awful

ancientgran · 28/04/2021 22:14

I found it hard with my relative, as she got worse she fought the idea of a home and for a time I was the worst person in the world because it was all my fault that she had to go into a home.

I've told my kids that they are not to do the care work, put me in a home and don't feel guilty even if I object at the time. Here and now of sound mind I do not want my children wiping my backside.

ancientgran · 28/04/2021 22:12

@aramox

I know. But try talking to doctors/surgeons like that! Happy to operate on those who will have no quality of life if they survive - we just don't have a model for thinking about it. But would I avoid taking statins, for example? or preventative investigations?
I have LPA for an elderly relative with dementia, she's even older than me! When she fell and broke her hip the surgeon was happy to discuss the pros and cons of surgery, the survival rate at 12 months, her quality of life. I decided to go ahead, 2 years later she has done well. It was a difficult decision but I found the surgeon very helpful.

I have agreed a DNR for her, again her GP was happy to talk through the pros and cons.

mrshoho · 28/04/2021 22:04

So true that open conversations about these issues is vital. I'm looking after my elderly parents and the rapid decline in physical and mental health has been very hard to witness. The worst part for me is the change in personality with my mum. She was always so sociable and interested in life but now her world revolves around hospital appointments and she has forgotten who her friends are. The pressure trying to look after my own family, plus my job and care for my parents is bloody hard. My parents didn't organise their financial affairs so I've that to wade through and also having to sort out their house maintenance problems. Every single thing is a battle with my Dad who thinks he can still do everything but is a walking safety disaster. Spinning plates is how I feel.

This has opened my eyes to be determined that I will not put my children in this position.

crimsonlake · 28/04/2021 22:03

I work in dementia services and witness all the things you all fear every day.
It is no way to live and although I am there to deliver activities, most are not physically or mentally capable of much at all. Those who have some capability have lost interest in life.
In this line of work it does make one wonder if this is what I have to look forward to, but also it makes me realise that I should be making the most of life whilst I can.

picklemewalnuts · 28/04/2021 22:01

Unfortunately when it's socially acceptable for people to make that choice, it eventually becomes seen as socially desirable. I don't have the papers to hand, but I did research some years ago and where euthanasia is legalised in certain situations it becomes normalised and harder to refuse. People with disabilities and illnesses begin to feel like a burden and feel they are seen as a burden and obliged to do it. Very sad.

BackforGood · 28/04/2021 21:22

There is also the issue of children being unable to let their elderly parents go... they are kept alive so DC don’t have to deal with their death. We appear to have moved so far away from dealing with death as part of normality that no one copes with it.

and this is why you should (we all should) talk about these things openly, freely, and often. It shouldn't be taboo.

We put animals down out of kindness when they are failing but we don’t do the same for humans. I don’t want to be rotting away at the end. Once I lose my cognitive and physical ability then I’d like to just go peacefully and pain free.

Me too.
I don't want to impose that upon other people, but I would like the option for me

CarmelBeach · 28/04/2021 21:15

@Jenthefredo

But I worked in a nursing home when I was 19 and studying. I saw things that still haunt me now at nearly 50. I know what I don't want.
I can relate

The two friends I mentioned dying at 64 and 73, just seemed they'd been freed before life could wreck their health. In fact 73 is too old for me. It wasn't for her, I hope.

Someone aged 65 upset the others in a group chat by saying "well, there's not much point living past 70 anyway". Luckly I wasn't on the chat because I'd have got in trouble for agreeing. We're not saying it's not for other people, just not for us.

Why are we happy at the end of Thelma and Louise? It's not just about the FBI!

Jenthefredo · 28/04/2021 21:09

But I worked in a nursing home when I was 19 and studying.
I saw things that still haunt me now at nearly 50.
I know what I don't want.

Jenthefredo · 28/04/2021 21:08

There are worse things than death for me
Your mum obviously feels differently

saraclara · 28/04/2021 20:47

So the vast majority of posters on here intend/would want to kill themselves. In reality, how many people actually do that in old age? Very very few. Because whatever we think when we're well, we're primed to stay alive, even when we're old and life isn't great.

My mum always said she wouldn't want to live if she got ill or very old. Then she had a massive stroke and is largely helpless, paralysed down one side. For the past 12 years she's been a nursing home, and now an extra care facility.

When she got an infection in the nursing home, she got very ill, and wasn't conscious. The nursing home didn't have a DNR in place, so they asked my brother, initially, what she'd want. He didn't hesitate at all and said she wouldn't want to be resuscitated. I confirmed that when they asked me.

My mum recovered, and then the nurse at the home asked her what she'd want should such a situation happen again. Foolishly she mentioned what my brother had said. My mum was furious, and said that she wanted everything done to keep her alive. And 10 years on she still tells people my brother wants her dead.

She's in her late 80s and still occasionally needs to be hospitalised. Every time, the doctors ask her about resuscitation, and every time, sometimes to their obvious discomfort, she says she wants everything doing.

She has done a complete 180 degrees change of mind. When you're well, you think the life you might have in old age will be awful. When you're actually in that position, you might well find that at least it's life and you don't want to give it up.

Charley50 · 28/04/2021 20:29

@CarmelBeach

Bram, they were late 70s when they did it. It was just before covid, maybe the doctor would feel differently now.

I can't really imagine how the doc would react to an AD from someone who isn't yet 60. I can't see it going down well and I don't want to cause unnecessary hassle for myself.

I took my Advanced Directive to the GP when I was 49. He was very surprised, and asked some questions to find out if I was depressed or feeling suicidal. I wasn't. I explained to him how watching my mum's awful decline, especially her last year, convinced me I didn't want a lingering death like that of extreme frailty and dementia. Then he said he understood perfectly.
You can quite specific about when you do / don't want treatment in it.

CarmelBeach · 28/04/2021 20:26

Jen - thank you

We have a family friend, 91, with dementia, diagnosed about 10 years ago. His wife and son can't cope - in 80s and 60s.

He has carers but they aren't always there when he has panic attacks because he doesn't recognise or understand the room or the people in it.

I had a cancer scare about three years ago. The worst thing was I didn't want treatment but felt obliged for my family. It was suspected as one that despatches you quickly.

It brought it home to me that going early was just fine.

It didn't turn out to be cancer. If it is next time, I will just say no if it's the fast kind.

Just thinking about the friend with dementia and what his family have been through the last ten years makes me want to light a candle and say a prayer.

Skap · 28/04/2021 19:20

My mother was young when she had me and died last year aged 86. The 5 years leading up to that were a grim decline and a daily reminder of what might be in store. She was as fit as a flea until she was 80.
I have had a number of health problems starting in my late 50s so not expecting to live as long as her. As to taking loads of medications. I do now. I hate it with a passion, but actually they all allow me to live an active, pain free life.
Two years ago I was diagnosed with breast cancer - this of course coincided with my mother being more ill.
I discovered with clarity that I didn't want to die but that if it was going to happen I wanted an exit strategy. People were shocked when I mentioned it.
The problem is that suicide is so very devastating for family. I mulled over many ways to do it so as to appear an accident.

NommyChompers · 28/04/2021 19:19

I think most docs/surgeons will happily not treat if it’s what a pt wants. Lots of the time they are under pressure from patients and family