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.

I'm so sorry. It is utterly infuriating when people focus so much on the elderly person doing so well when in fact it is the carer holding the whole thing together at the expense of their own life. Where is our praise? Well done YOU. Not your mum. YOU. The trouble is the current elderly did not do this for their own parents as they died before this stage so they don't know the sacrifice they are asking for. Also how many of them would have done it for their own parents?

@Poochypaws I haven't (yet) been in your situation but I have complete sympathy.

That sounds impossibly hard.

I understand completely and had much less time to try & cope than you are experiencing. Only about 2 years of the worst times. It's a scandal that people are kept alive in a state you wouldn't wish on a dog. And one very minor thing keeps coming back, they wouldn't let my mum have sugar in her tea because it was "bad for her" when she was 87, not diabetic but clearly dying. She refused to eat for the last 4 weeks. I think her subconscious took over & she found a way to end it herself. I feel for you so much. It's way too much of a burden for you to bear.

There's an article about a disabled women who wanted a wheelchair ramp being coerced into assisted suicide. She made a big complaint about it. Can you imagine?

thank you. I feel a huge sense of relief that she will be going into a home soon and 'will be someone else's problem'. Isn't that horrible.

I recently watched the Downton Abbey movie where the Maggie Smith character dies. I can't remember the exact words when she was dying but she basically said if you are going to die, get on with it and don't take too long. I though how true. When your time is up, go. Don't hang about like a visitor who has outstayed their welcome. Die with dignity rather than holding on to the door frame with your finger nails whilst the hosts try to push you out the door.

Seriously? They denied an 87 year old sugar in tea? Is that NHS?

Yep. It’s absolutely brutal.

Society’s focus and resources is perhaps best rationalised as protect and extend best health for as long as possible rather than life.

Ridiculous isnt it @EmmaEmerald Just read it out to DH who rolled his eyes

https://www.independent.co.uk/news/world/americas/christine-gauthier-paralympian-euthanasia-canada-b2238319.html

Oh don't get me started on "do not go gentle" etc

My dad's last few months were sheer stubbornness, I swear. He suffered but so did we. He was waiting for a miracle. I am terrified of mum hanging on for years, she has nearly died quite a few times now, but that was in sudden incidents.

I haven’t read every post, so apologies if this has been said.
But what happened to the Hippocratic oath?
I truly think that this needs to be revisited by those involved in this type of medical care.
We seem to be living in an era where we are completely scared of dying, yet it is our only true certainty in life. The premise of preserve life at all costs really needs to be reevaluated.
And no OP you’re not wrong for feeling how you feel,and I think if people were truly honest with themselves, whether they’ve been through this or not. No one would want to be in your position.

@Poochypaws my next door neighbour is close to a breakdown and her husband isn't home from the hospital yet. He's been a semi invalid for twenty odd years. They've both been to hell and back with various very serious operations. A couple of months ago he had an accident. He's now blind, deaf, doubly incontinent, unable to walk. She's had someone round to measure up for various aids then they're discharging him.

We really thought he'd die following the accident but the NHS pulled out all the stops for this elderly man. I can't fathom it looking at her. I know they had a deal many years ago that because they were living on borrowed time if he got to this stage let him go with a DNR.

I really don't know what is going to happen or how she will cope. Her health isn't the best now

Agree fully with this. I've never even been in that type of situation before but me and DH think about it often, we both work in healthcare and so do some of our relatives and DH specifically works with care home residents as part of his job. Its tragic. We don't condemn animals to suffer in the way that we force people to.

I hear you OP. You have been tested to your limits and I hope now you've reached the limit you can continue to state and re-state and act on your intention to withdraw the labour side of caring for your relative. No-one from any state agency has any business threatening you into dealing with your relative, you have no statutory duty but they do.

A multi-agency panel should be taking a best interest decision on your relative, in my experience the idea of ‘capacity’ is layered and variable and very frail or demented people’s insistence they ‘want’ to remain at home doesn’t mean agencies won’t override that in their own interests and safety. The impact of your refusal to continue to prop this up will be crucial. Your relative needs 24-hour physical care and nursing by professionals not you.

It is very much better for me now my DM is in a care home, I will still be relieved when she dies and so will she (as it were). I don’t want to have to go to Switzerland to die but neither do I want to be ‘kept alive’: I hope the campaigns for dying with dignity continue to get stronger, I agree with Terry Pratchett: 'I believe that if the burden gets too great, those who wish should be allowed to be shown the door,' he said. 'In my case, in the fullness of time, I hope it will be in the garden under an English sky. Or, if wet, the library.'

Thank you. It's always really interesting to hear from anyone in the NHS. I think the problem is everyone is too scared to be the one that says 'yes we should let her die now'. I don't know if they would be in trouble or something. So they pump more antibiotics into her and kick the can down the road.

I just think of the money spent prolonging a poor quality of life could be used to help other areas of the NHS. I mean think of the old saying - if a lifeboat was sinking and there was only one space left who do you give it to - the old person or the teenager. Obviously the teenager. Yet we aren't. Other areas of the NHS are being neglected because of the funds pouring down the blackhole of the elderly.

I read in the news somewhere that Boris had a 'secret plan' to not treat the elderly during the covid crisis. The article was written from the point of view of how terrible this was. Yet it wasn't. It was bloody sensible. For every old, sick, demented person we keep alive, a teenager does not get mental health support or a women dies of breast cancer because she had to wait too long. So we are keeping the old person in the lifeboat and chucking the teenager overboard.

I should emphaisise that I am not talking about elderly people enjoying a good life still with a wee bit of support like a cleaner. My mums neighbour is in her nineties. She has a cleaner and she had a carer for 6 weeks after she broke her arm. Apart from that she lives independently. Goes shopping, does gardening, socialises etc

Hugs. It's awful. I wouldn't put my worst enemy through the last 4 years of my Mum's life. Everything was taken from her, including her mobility, her speech and her continence. She would have been horrified to see how she'd ended up and although her passing has left me grieving, I am thankful that she is no longer suffering.

you are probably right. I used to think care homes too but I am always reading they don't make hardly any profit so I am not sure about that one

I'm so glad you found love when it was all over. Many the rest of your days be happy ones.

No, a private home. £800 a week at the time. Probably twice that now. But no sugar in her tea. Absurd.

'sucks your own life force from you'

I couldn't have put it better myself. Thank you

Situations like that will be the tip of the iceberg.

Imagine the greedy heartless people who think they can "cash in" their elderly parents. You see enough posts on here of grabby individuals who think they're entitled to an inheritance and want to do anything possible to get their hands on it.

I think that those who have been through it would never expect their own children to do it. They realise the impact on the carer. No good mother would want her child to waste their life like that.

thank you

Life is to be lived… as long as someone has a quality of life and wants to live that’s fine. But not at the expense of someone else giving up their quality of life for them to achieve it… choosing to look after someone is not giving up my quality of life , being forced to care for someone beyond endurance is very much different.

I’ve looked after someone by choice, as a family it was hard but ok. I was content when she died, we had looked after her as well as we could (care home at the end with lots of visits) . That was a shared load… what op has is a nightmare but given social care underfunding is what happens. Op your life is just as important as your relatives, you are doing the right thing.

this thread highlights that I need to tell my dh/kids that I don’t want to live forever… when the time comes I want to be comfy and hopefully float off into the sunset… and it’s it’s morphine that helps the process then I’m happy with that

My experience too op
one relative was dying for 7 years ,and we dropped everything many times for the last 4 hour goodbye dash .
then I stupidly,stupidly agreed against my better judgement to take POA .
oh dear god ..nurses and care workers take that to mean I am fully responsible for this person..for every fucking thing they need ..I’m expected to provide it .
the paperwork for getting the council to take over funding was like up having another child ,as was applying for attendance allowance and care homes ,then moving said relative when care home realationship breaks down.
3 fucking times I’ve packed up every fucking item of persons possession and moved them to a new home .
not to mention having to clear out and sell persons home .

my advice if someone asks you to be POA …say no fucking way