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.

Why out of interest?

OP I agree with you completely, I haven't cared for a family member personally (won't be doing it but that's a different story!) But used to work on a hospital ward and saw the stress it caused families.l, time and time and time again.

In particular I remember one lady being admitted, she'd been very unwell and cared for for years anyway, then had developed a bleed on the brain and was essentially admitted to die. She had a daughter that dropped everything to drive about 50 miles each way every day to sit with her mother. The days, then weeks went by with this lady completely unconscious and unresponsive in the bed, having no food or water, not dying and her completely stressed out daughter visiting every day. It became like a running joke with the daughter, delirious from the stress, coming in every day and almost asking "is she dead yet?" and us saying no, sorry, not yet...

And then, like some bloody miracle, mother WOKE UP. Spent a nice day or two sat up in bed drinking and eating yoghurts before finally, and inevitably, dying. I can only imagine the daughter went home and went to bed for a month. In total, from memory, I think it took over 3 weeks for this lady to die.

I saw this type of thing time and again, along with patients being admitted and readmitted, on the downward spiral. Asking if they could just die. Doctors always keen to try "one more course of antibiotics" which would then work and the patient would bounce back from the brink to go back to their crappy care home only to be readmitted a fortnight later, visited by their families with their grim smiles.

Where I live there are lots of high cliffs and if euthanasia isn't legal by the time I'm elderly then I'm taking myself off one, I wouldn't put my family through it. We afford our beloved pets more dignity in dying than we do humans.

Sleeves, I really feel for you, kind of had that with my dad.

Mere - I don't know you manage to withdraw without feeling angry, hysterical, etc. Are visiting often?

i might have said it already but I know one person who ended up telling the care home to please never call again unless her mum was actually dead. Took a couple of years to get that call.

@Jamtartforme

I assume it's because some of the deceased who are being campaigned for are rather old.

In times gone by, it was accepted that respiratory diseases like covid would kill the elderly as a matter of course - see the Hong Kong Flu. Or indeed pneumonia used to be called the "old man's friend", presumably because it was seen as quite peaceful.

I can't comment on the group's campaign and aims. Those who lost elderly relatives might be upset that they were denied company in dying or were isolated or ignored or not given sufficient pain relief etc, not just about the fact of death. But I do remember the BBC referring to some very elderly covid deaths as "tragic" - my own 90 year old granny died during that period (probably with covid but perhaps not of it as she had a big stroke) and I don't feel that it was a tragedy, even though I miss her. On the contrary, I was glad that she had such a good quality of life right to the end and left us when she was frail but still functioning. She would have hated existing.

Where I live there are lots of high cliffs and if euthanasia isn't legal by the time I'm elderly then I'm taking myself off one Easy to think about at this distance, but could you do it? Might you inadvertently land on a ledge and just make things worse? The nearer I get to dementia, the more difficult the alternatives seem.

@EmmaEmerald I’m visiting once a week for an hour. Pre-Covid I visited every 3 days for 2-3 hours. I don’t know how I can detach, maybe because I’ve got an analytical logical type brain, maybe because I lack empathy, maybe because I had about 8 years of him going downhill at home and being absolutely stubborn, refusing help, or accepting help only on his terms - ie to implement a crackpot solution and refusing to let you do something safer and more effective

What I do to detach is to observe as if he were a lab animal. “Ah, today we’re in the Cold War”. It easier for me because now he’s lost most of his marbles he’s always pleased to see me.

You've hit the nail on the head...

Agree 100%

Excuse the gallows humour, but I can't help thinking of James Blunt's wonderful song about his father dying.* You can't watch the video without being moved by it, especially when it pans out and you see his dad sitting there calmly with him. Apparently they had to keep doing retakes because the whole crew was crying.

Then his dad got a kidney transplant and by all accounts, though not out of the woods, has a better prognosis! 😊

The song is so graceful and dignified, expresses all the love and compassion we long to share on our parent's deathbed, but there's a line in it "So, daddy, won't you just close your eyes?" that I can't help smiling at, because I imagine myself saying that through gritted teeth, perhaps wielding a pillow! For his sake as well as mine...

I share PPs' inclination to do away with myself when the time seems right, as this whole experience has really shocked me, seeing how bad things can get. I thought you just didn't wake up one day. The reality can be so much worse.

But as other PPs have said, it can be hard to know where to draw the line when it's your own life.

Reminds me a bit of when you go for a walk and see a tree somehow growing out of a stump that has been struck by lightning, washed away by floods etc etc and is precariously overhanging a precipice. Life clings to life at all costs!

Trigger warning: If you're not familiar with the song, and are feeling fragile about a parent dying, do not watch!*

Similar situation with my 92 year old FIL

DP is constantly run ragged, stressed to the max and as much as I sympathise with him, it's starting to affect our relationship. DP often gets calls in the middle of the night from the personal alarm people where he has had a fall, so DP has to drive over and sort him out. Constantly having to wash bedding as he frequently has accidents and he refuses to even try staying in a care home to give DP some respite.

I really do feel for you OP

When my dad was in a similar situation caring for my mum, and it was too much for him, I wrote to their GP and to adult social services. The GP visited them at home, a care home was arranged. You could inform the authorities, out of your concern for your DP.

I'm so so sorry for you & for the op going through this. Lost my beloved Dad earlier this year. Watching them suffer is horrific. We wouldn't treat a cat or a dog this way. Makes me really sad. And angry. Sending love to all the families & carers 💖

If you refer to s76 Serious Crime Act 2015 which created the offence of "controlling and coercive behaviour in an intimate or family relationship", you are omitting the essential second part of the offence. The parties must be "personally connected" which is further defined as:

A suspect and victim are personally connected if

• they are, or have been, married to each other
• they are, or have been, civil partners of each other
• they have agreed to marry one another (whether or not the agreement has been terminated)
• they have entered into a civil partnership agreement (whether or not the agreement has been terminated)
• they are, or have been, in an intimate personal relationship with each other
• they each have, or there has been a time when they each have had, a parental relationship in relation to the same child, or
• they are relatives

No, you cannot use this to nurses and SS trying to coerce you into taking on more responsibilities than you desire.

Agree 💯

The terrifying thing is that we’re all being forced to wish people we love dead.

Change is required.

Ah. This would be the same SS, I presume, that took away the overnight allowance element of my 80yo Dads carers allowance that he receives for providing 24/7 care for my paralysed, non-verbal mother ? Because mum had been catheterised and no longer getting up 6 times in the night for the loo.
she can't move by herself, can't put herself to bed, cannot do anything for herself. But SS saw it fit to take away thr money which paid for a couple of hours cleaning/extra care. He'd already refused 2 of the daily visits so they had already saved money on them.

then, to add insult to injury they told him if he queried it again they would pursue him to pay back what they considered "overpaid" in the time between being cathertirised and them cutting his benefit.

SS are a bunch of bastards and my workplace dealings with them over the last 20 years have done nothing to persuade me otherwise.

And as for your prim, tight lipped little opinions @truthhurts23 well, it's just laughable really.
I worshipped my mother. My mum died 3 years ago from a terrible stroke, cut down in the middle of her 70s. What's left is her body, her confused mind, her inability to communicate and a family absolutely devastated. She is in constant pain, can do absolutely nothing for herself other than feed herself with one hand and look out for the window.
My Dad is destroyed, devastated with grief and traumatised by seeing the woman he adored end up like his own mother. Not to mention the physical reality of 24 hour care. He won't even put her in for respite care, he feels he would be betraying her.
I juggle very tiring full time work in the emergency services, my own teen daughter, my home and visiting them 8 days out of 10. Providing food, daily company for my dad, emergency care, some stimulation for my mum and a shoulder to cry on. I've had two weeks away from it in 3 years.

so you can F off frankly.

I’m so sorry, OP. There have been times when I have seen someone struggling so much at the end of life that I went home and prayed to God to take them in the night because it was unbearable. No-one wants to end that way – a nightmare.

@DaphneDeloresMoreheadRidesOn that is so so sad about your mum. And your dad. And you ❤️ What a state for you all to be left in. When there is absolutely zero probability of someone returning to good health and they have their health shattered by a stroke, dementia, Parkinson's or some other hideous condition and they have absolutely zero quality of life, IMO there is absolutely no point in trying to preserve that, for what gain??

@Ilikeyoursleeves
The consultant told us she would be dead in days, that she would never wake up. How wrong he was. my dad kept her on life support for the benefit of a sister to come and say goodbye. She came to see her for 10 minutes, never visits and rings my dad to moan about her own life under the guise of "seeing how he is" about once every 6 months. That makes me really angry and resentful. She maybe could have died in peace. It would have been terrible but at least she would have been free.
now she is a prisoner of her own body, only able to say yes and no to very simple questions like "do you want a cup of tea". Actually she can only say yes and shake her head. Sometimes you don't know if the shake means yes or no.

Of course I wish she would die. I wish for an end for her to this awful existence, for some life after for my poor dad and some time and energy to put into my own family.

If there was some thought she might get better it would be different. She won't. She's 79. She will only get worse and worse.
i would not wish that on my worst enemy let alone my precious Mum. My memories of her are marred as well, she was such an active person, always cooking and cheerful and "vital". Everyone loved her, she had loads of friends and activities.
now nobody, not even their old vicar, comes to see them. Only one friend. And me. None of her family come to see her. One cousin has been once in 3 years despite always going on about how she adored my mum, her favourite Aunty. Then wonders why I have no interest in her family. I wonder why.

@DaphneDeloresMoreheadRidesOn I 100% understand, I've had the same thoughts about my dad and voiced them on another thread I started ('end stage Parkinsons nightmare') but it sounds like your mum is in such a worse position health and communication wise. It sounds extremely difficult for you all. I also have complete and utter rage at some family members (well, my sister) who rarely visits my dad and does SFA to help in any way. Like absolutely ZERO. 🤬

It's so inhumane we treat people when they are this ill, it really is

@Ilikeyoursleeves at least I am an only child so I don't have to feel resentful about another sibling not pulling their weight. I knew it would fall to me but at least I can't be disappointed.

On a more cheerful note DH and I have a very rare evening together tonight without Dd who is at a sleepover. I've got wine and we will probably fall asleep by 8pm 😂

I have to do a lot of Pollyanna. It doesn't come naturally, my Mum was the definition of a Pollyanna 😂
she still is remarkably cheerful. I don't know how she does it.

DaphneDeloresMoreheadRidesOn. So sorry to read your story and your frustration, My dad suffered a stroke aged 55 never spoke another word that made sense anyway, bless him, he tried so hard. Like you say we lost him that day but he went on to live another 25 years. So hard to watch for mum and me.

Nobody realises how tough it is, do they. Until you're there doing it. It's hard, exhausting, thankless grunt work.
But not only that, you are very often grieving. The person who you are doing it for is often gone, the person left behind so much less. I'm so glad that, while she gets confused etc and while she can't speak, mum and I know each other so very well that we communicate pretty well all things considered. And she knows me. She is always pleased to see me, wants to hear my news etc.

my poor friend's mum didn't even know her daughter or her husband at the end. I just thought how cruel

DaphneDeloresMoreheadRidesOn. Spot on ! No one understands the heartache,the first birthday I had after dads stroke it really hit me hard when he didn’t realise, and of course couldn’t say happy birthday.
We did still have happy times though, his sense of humour shone through. even though like your mum he lost all his friends, they used to cross the street when they saw him. It was a tough 25 years for mum, but she’d have him back tomorrow if she could, she’s so lonely I hope your mum remains as well as she possibly can. Enjoy your evening.