So bloody exhausted waiting for someone to die...

[Poochypaws]

Nobody tells you how utterly draining, exhausting, depressing it is waiting for someone to die when the death has been 'expected' for years. Got told 4 years ago person might die as soon as 6 months but might be lucky and have a couple of years. Ok. Spent the next year spending every possible minute with them. Watched all their favourite movies with them. Listened to their favourite songs with them. Talked about loved ones and memories. Took them for lots of nice walks/outings. Basically put my own life on hold and compromised my own health to give them a nice 'ending'.

Except they didn't fucking die did they. So much for doctors predictions.

At first I was glad to have extra time. It felt like a gift. It felt like we had stuck two fingers up to death. As time has gone on though and the person needs everything done for them (EVERYTHING!) but still they linger on.

They go into hospital (about once every couple of months)- carers have to be cancelled, shopping has to be cancelled, perscription deliveries have to be cancelled, constant phone calls from hospital nurses ' can you bring this in, can you collect dirty washing, when are you visiting'

Then they are ready to come out of hospital. Carers have to be found and reinstated and everything else has to be put back in place.

Meanwhile having agreed to go into a carehome (social say person does now need 24 hour a day care) person has now told social they don't want to leave their own home.

Everyone around them (ok not everyone, just those involved) are on their knees with ill health, mental stress from the constant waiting, exhaustion from never knowing what is coming next and still the person keeps hanging on.

On about 30 tablets a day, requires washed, fed, dressed, help to leave house, taken to all appointments, all housework done, all admin done, entertained and you never know from one day to the next when the next fall or hospital visit, dentist emergency, optician emergency, will be. They are not like 'normal' people going to the dentist twice a year. They seem to need to go every month so their appointments are about 10 times those of a normal person. Constant infections, bleeding, bruising, swollen ankles, can't breathe, can't eat, can't sleep and still they go on.

Why god, why! I fear I might die first from the stress.

For those of you who have been asked by your gp or social or a nurse to 'help out with your parent' because they probably don't have long left anyway (ha, bloody ha) Think long and hard. Really long and hard. If fact don't think just turn the other way and run.

The NHS seems hell bent on keeping old sick people with no quality of life alive as long as possible even though the trail of destruction behind them far outweights the benefit of keeping them alive.

I used to see people at funerals and assume they were all sad. Of course people at funerals for young people will be sad. Now I realise for those who have elderly parents who have lingered and lingered and lingered they are not sad at the funerals they are RELIEVED. GLAD. Probably cracking open the bloody champagne in the evening.

For those of you who have never been in this position for years you have NO idea what you are talking about so don't bother commenting. (I had no idea before I did it and would have thought differently)

So tell me who is benefiting from this shitshow.
Old person - nope miserable, ill and poor quality of life
Anyone helping - nope, miserable, ill, poor quality of life
NHS/Social - resources being used HUGE, benefits ??

Finally in last few weeks I have taken a stand and withdrawn support. Literally had to shout at social and hospital nurses who seems to ignore the fact the 'carer' is having a nervous breakdown telling them to 'carry on what they are doing'. NO. NO. NO.

This will force a care home entry which is what is needed. NEVER AGAIN.

Not always and things like pre-existing diabetes can become very difficult to manage.

It is interesting that the article was written in 2014 - I imagine that healthy life is now very possible over 75 (I hope so!); but his suggestion that striving to stay alive whatever the personal cost is unacceptable has merit.

But where does that leave young adults with ghastly life-limiting illnesses or disabilities whose whole life consists of major care needs - are there lives too without purpose? I do not think so.

This is the most vile thing I’ve ever read. Truly horrific that you’d sit about and moan about someone dying.

He’s still going strong and did an interview in the times recently, which was why I found out about the original article. I was taking it purely from my perspective - as an individual’s choice about their own quality of life. I didn’t take it as a commentary on worth ascribed to others.

I hope you won’t expect a son or daughter to give up their life to be chief bottom wiper and general factotum to you if you ever get dementia or terminally Ill for YEARS on end?

No decent parent wants that for their adult child/ ren.

Not unless they are hideously selfish.

It is interesting that the article was written in 2014 - I imagine that healthy life is now very possible over 75 (I hope so!); but his suggestion that striving to stay alive whatever the personal cost is unacceptable has merit.

I think it is impossible to out a ‘number’ on ‘the right age for euthanasia’ - as the daughter of octogenarians who are themselves the children of those who lived good lives well into their 80s, I suspect that my own healthy lifespan may well fall into the mid 80s or higher.

I do think it is possible to put a ‘stage’ or ‘condition’ on a decision not to intervene medically to prolong life, though - whether that be at 50 or 90 - and I think that would be the most sensible way to word instructions to future relatives or caregivers. I appreciate it’s much harder to implement than am arbitrary age point, though.

@Whatswhatwhichiswhich

My grandmother took 10 years to die, from decline to the point at which she could not live in her own home, to starving to death in a nursing home. 6 of those years were spent in a desperate, sad state. If she were a pet, she would have been euthanised.

The point is that the OP did not anticipate that the decline might be so long, so what was feasible for 6 months is not feasible for longer. If SS do not step in, then frankly she is just waiting for her relative to die in order to regain some form of quality of life herself. Why should she not say this?

I don't know who you're praying to but I doubt you're a Christian with that view.

I hope it never does. Take a look at Canada and you'll see why.

I agree with you. I’d like to go at time of my choosing, before I get too incapacitated.

All day we've managed to keep the gate to the cunt farm closed, and now someone has gone and left it open.

Honestly hate the use of that word. Just not necessary.

Yes my mum was end of life for 12 weeks and it was horrific. I couldn't imagine years

Not arrest me no but 'force' or 'embarass' me into contacting them when I clearly did not want to. It worked because I did phone them and sobbed down the phone to them. The nurse in charge did apologise and say the other nurse should not have left me a message like that (and she was very kind to me I have to say). It is scary how little respect or care there is for the carer. Of course everybody (GP's, social, nurses) are all so overworked themselves and unable to cope that they too are on the brink of collapse and just trying to bat the problem on. And that is the problem.

There is far, far too many old sick people who need huge amount of resources, time, and support to keep 'living'. There is a very limited support system in place outwith the old person's own family. Many children refuse to help (working full time or busy with own kids or very wisely realising what they are getting into just refuse).

Here is one example to show the madness.

Elderly person (who does alot of 'stupid' things flushes teeth down toilet). Carer has to make dentist appointment and drive elderly person to dentist. Elderly person refuses to let dentist take mould for new teeth. Dentist says we will have to do it a different long winded way then. Makes another 4 appointments which carer is expected to take elderly person to. In total elderly person has been to dentist 10 (yes TEN) times this year including these appointments. Some of these they refuse to get treated because they don't feel well that day so it's a waste of everyones time.

Now multiply this by optician appointments, doctor appointments, social worker appointments, district nurses, flu jabs, nail cutting appointments and you can see how it leads to madness.

We've had agency carers climbing through bedroom windows as they couldn't get in via keybox as elderly relative had left key in door and fallen asleep and didn't hear doorbell.

We've had the front door broken down by police as the ambulance couldn't get in after a fall (pressed emergency pendant but had removed key out of keybox so no access. I've had to organise a temporary door repair and buy a new door simply because relative had decided agency carers were stealing from her and had thus removed key out of keybox.

I do not want my life to be stretched like this, with nothing but pain and suffering for myself and my family, no way.
There is no point. Everything about it is just wrong. I do want to go when my time is up and not kept like an empty shell propped up with tablets for years.
And, yes the NHS resources should go to people who actually get a joy in life and have dependants. I am with you on this.

Lots of money in elderly care 🤷
£2-3k a week in some areas
Big pharma...
It's shit
Dhs uncle is currently in hospital - again - on antibiotics for a chest infection
1 hospital visit per week usually then sent back to nursing home and back again...
Bed ridden, can't communicate, can't eat solid food
Really upsetting to see

Look out for me, I'll be on the plane/train/bus too.

We’re only at the beginning of this journey with my parents. I just think about the life I will have once they’re not here. Til then, I know everything is on hold for me. I’m 46. I do estimates in my head about the number of good years I might have between caring for my parents and getting ill myself.

I get really scared by the finances. My parents are wealthy, that still doesn’t stop just how miserable it could get for them. Yet I’m also terrified by how my old age will play out given I’m much less well off than them. And currently limited to part time work because I can’t help them at all if im FT.

If euthanasia isn’t legal, then it will be suicide for me. I don’t want my dc to go through decades of stress and unhappiness.

I think that pre the NHS, doctors actually used to assist with euthanasia. It really should be legalised and nobody who has looked after a dementia sufferer would ever want to go down that route themselves. This governement has underfunded everything for so many years that there are not the good, caring staff that you would hope for relatives nearing the end of life or just needing round the clock care. Neither are there social workers with enough time to always be productive as they get burned out and leave. It is really hard caring for a relative and it is also society that expect this from people. I hope she does get moved into a suitable place as soon as possible for all your sakes.

@Meeting

The debate around assisted dying is really interesting.

Lots of those against suggest that in Canada there is evidence that older people prematurely cut short their lives in order to avoid being a burden.

But for many of those commenting here, many of them actively want to do that, both to be be guaranteed a death with minimal suffering and to avoid being a burden to their kids. I absolutely would.

Is there evidence that people are actually being coerced in Canada, or that they actively and freely want to choose not to burden their relatives? I appreciate that at 80, people are much more vulnerable, but lots of younger people here do seem to believe that it would be valid for them to decide. Reading about the lengths that Evan Davies' father went to to kill himself and ensure that his children were not investigated for his death is really very sad - if we had assisted dying, people need not go through that alone.

I think it is much more grey than you suggest it is. My maternal grandmother would have chosen death over incontinence and personal care by relatives - she was "lucky" that she had a massive stroke at 90 (unlike my dad's mum who had 10 years of dementia) - why shouldn't she decide this if she feels it is undignified?

that was four years ago. Now they can't stay awake long enough to watch anything. Talk utter mumbo jumbo and even with someone literally holding them up they fall over or fall asleep. They had a huge conversation with a plumber I hired to fix their bathroom because they though he was their eldest son. The plumber kindly let them ramble on and did not inform her he was a complete stranger. She soils her bed, clothes and leaves a trail of sh*t in the bathroom.

It is easy to see the people who have had zero involvement in the care of an old sick person and thus no clue what they are talking about. Still I knew there would be a few ignorant comments so carry on.

I totally agree with OP here.

At the end of my father's life, my dad had to fight, fight, fight to be left alone without endless medical tinkering to die. They kept insisting on taking him into hospital, taking constant interventions, including daily blood tests (traumatic as they could never find a vein and kept trying and trying til he was bruised all over). He ended up dealing with the symptoms of so many medications (and other medications to manage those medications).... it feels like the NHS's mission has become 'keep alive at all costs' and with the advances in medicine, this has got to the point of basically stretching perfectly natural, old age deaths, through increasingly painful intervention.......

The emotional and financial costs are huge for everybody.

I feel for you, op

And I agree x

To the poster who regards the OP as "vile" - I can see that you do not have personal experience of this situation. I loved my OH dearly but I could not have gone on looking after him - it was destroying both of us. His life was truly dreadful and I was worn out.

I absolutely understand where the OP is coming from. It may be that it is precisely because she does love her mother that she feels life should come to an end now - her mother is suffering and she is too, which I have no doubt at all is not what her mother wishes to happen.

Have a bit of compassion.

This is such an eye opener. A colleague at work is in your position OP and everyone is very supportive that she has to juggle all the caring responsibilities around work, obviously, but I don't actually think anyone ever asks how she is coping. It's all just 'how's your mum?' even though we know the colleague is run ragged. I will make sure to actually ask her herself from now on.

To anyone criticising the OP, there but for the grace of god and all that, I'm sure it's all very worthy to imagine caring for a loved one, but the reality is very different. My grandad had Alzheimer's and my uncle was his main career, my poor uncle got nothing but abuse and violence for his love and dedication for YEARS and it was a blessed relief when my grandad finally broke a hip and had to go into a home.

Thank you for starting this thread @Poochypaws . I’m so sorry it’s all such a shit show for you, but reading through everyone’s experiences has been hugely cathartic for me.

So many of my friends are starting to be in the same position.