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.

My DD is a student nurse and she's been in orthopaedics so lots of very old people, she says she hears over and over again mainly middle-aged children, mainly daughters, saying the same as me, that they can't cope, but the old person refuses any help, so I think the nurse is are probably a bit more realistic about it. In a previous ward, there was a junior doctor was having a panic because a patient couldn't breathe and calling out for help, but first year DD just went and held the man's hand, and he calmed down. The nurses are there day in and day out and have much more of a realistic idea about what's going on with people and how it's affecting families. I remember rolling my eyes at young-ish doctors asking me to be quiet because they wanted to hear from my DM what's happened, but her telling them a load of nonsense! I do understand the need to get things directly from the patient, but when the patient is saying they've had no problems like this before, but you know that they have twice had life-saving abdominal surgery, it is a bit daft.

This thread kept sane earlier this year when my dad was dying and it is both good that so many people are finding support here, but bad that so many people are going through the same thing.

Just wanted to say even though I have two siblings, I would've as well been an only child through the entire thing. 16 years running after my mum and dad. Brother lives on other side of the world and sister is so rubbish and downright selfish and nasty that I am estranged from her which is a whole other story.

I cleared the family home out, sold it, went to all the MDT meetings, did the hospital visits, arranged POA and a will, dealt with estate agents and lawyers, did the tour of care homes to find one, spoke to Drs and loads of other health and social work people. It took over my life. I got nothing for it from my dad re thanks or anything tangible. But when I cleared the house out and found items that were worth thousands of pounds, guess what happened?! Dad said 'your brother is to have all that' and he got the watches, cameras and other stuff.

I was livid inside but couldn't even bring myself to say anything about it. It was all totally inequitable with me providing 99% of care and running about but obv now his money is being distributed everyone is equal! FFS. It's not about money it's the principle, I was almost expected to do all the running but didn't get the recognition or thanks.

It's a feckin thankless task.

What I will say to folk on this thread though, it will end one day, just take one day at a time. Sending love and hugs to you all who are in this hellish position

@SierraSapphire that's a very interesting point about nurses having a more realistic idea of what it's like to support a dying parent.
@Ilikeyoursleeves I'm raging on your behalf at the unfairness of your situation. I expect that was just as traumatising as the actual death of your father.
Re young naive doctors- a young male doctor watched mum and I struggle to release the side of the bed so she could access the toilet. In the end I walked up to him and asked him to help.
He said, Oh, I'm not a nurse.
I replied, No, you're a doctor. In which case this should be a piece of cake for you.

@popularinthe80s yes and to add to the insult my brother didn't even say any king about it clearly being unfair

Typo 'anything'

And guess who sorted the whole funeral and has now been left with sorting out dad's deathmin?

Ah that will be me again 🤬

I remember your posts earlier in the year and your palpable relief at it finally being over. I felt so sorry for you, I'm sorry you have been slapped in the face, because that's how it must feel.
at least at the end of our "troubles" I know the reward for doing everything I can to support my parents is that I won't have to share their estate with some feckless, disinterested sibling who only shows up when they want a handout. Amazing how quickly apparently "very busy" family members can clear their schedules when there is a sniff of £££££££

@StiffyByngsDogBartholomew exactly this. The very sad thing too was my sister saying she will lovingly maintain dad's grave. Will go and put things on it and clean his headstone.

Where the F was she when he was actually alive?!

I had to text her when he was in his dying days to suggest she may want to visit him and she had no idea how bad he was cos she never feckin visited him! And oh yes, she lived 10 mins from him while I was an hour away 🤬🤬🤬

Honestly, any of the only children on here aw better off on your own unless you're one of the lucky ones who actually do have siblings who share the load

I have found my people and can share your pain. My DP has been in a care home for 5 years now, is 96 and is single handedly bankrupting the NHS with their constant admissions for the most spurious of reasons. The care home is terrified of being sued, so every little thing is treated by a visit to A and E for observation. To what end? They have advanced Altzheimer's, no quality of life and every admission is terrifying for them.

Meanwhile I'm an only child and am called perhaps twice a week with another 'crisis' that isn't a crisis at all. I haven't had a holiday in the last three years that hasn't been interrupted by a 'crisis' call - it's a family joke now as to when it will come. Sometimes at the airport on the way out, sometimes as soon as I land home.

Honestly I can't see it ever ending. My DP is fit, although completely mentally gone, and could easily reach 100+; my biggest worry (late 60s) is that I will die first! Am I cruel and unfeeling? I beat myself up daily for feeling like this but it has just worn me down; it never goes away and there's no end in sight. I never know what a visit will bring - anger, aggression, no recognition, total ramblings about an imaginary life - or complete silence and muteness. And yet I keep on going, even though I often leave in tears.

As I write this, I realise I probably need some help dealing with it all. But reading other's responses has helped so thank you all and good luck.

Ah yes, the sniff of the £’sss my DM changed her will so that my sibling was her sole executor because she thought it would piss me off. How I laughed watching said sibling panic about who was going to pay for the funeral. “Not my problem I said, you are the executor, it is what Mum would’ve wanted” 😁

Fact is, sibling lives waaaaay beyond their means. But because they’d been robbing my my DP’s blind, there was no money left. I laughed like a drain whilst insisting that DM had exactly the same funeral as DF, Rolls Royces and everything 😉

Oh, and yy to the “when I can no longer wipe my own arse, that’ll be time for me to go” Except when that did happen, she was absolutely for all the drugs and antibiotics…

There was the Liverpool Care Pathway. I remember huge outrage about it though and the idea that they were just letting people die. I just don't thing what we have now is in any way sustainable with the large bulge of baby boomers and low birth rates. Never mind the £££ it all costs, we just won't have the people to do all this caring. Also, who benefits? I wouldn't want to live in that state.

I agree about this being the culture though. Just look at covid families for justice. People wanting the government and health service held to account for the death of extremely elderly relatives dying in care homes.

DH is back from the hospital after seeing DFIL who today seems 'very unwell' the (pointless) antibiotics finish tomorrow and then we move to end of life care. Not even sure what that entails, but we're about to find out...

I remember the furore around the Liverpool Care Pathway and the mutterings that the NHS were killing people off, and making them suffer horribly to boot.

Fast forward to now and my MIL keeps suggesting that FIL’s consultants are surreptitiously trying to bump FIL off because he’s not taking the chemo tablets (he’s too frail to tolerate the side effects) and other non-issues.

I was reading something on the Covid enquiry about care homes the other day and my new thoughts (of course they should protect people was my thought at the time, pre-mum-stroke) were "I wonder how many people were hoping beyond hope that Covid would take their parent that didn't know who they were any more, was endlessly ill and merely existed. And that Covid sweeping through care homes enabled lots of people to have a more timely, gentler demise than they otherwise may have done. This is the only place I could voice that thought aloud.

after 3 years of mum's disability I think very differently to the woman I was Pre Stroke

Exactly @StiffyByngsDogBartholomew . Yes Covid was an awful way to go, in that victims had to be isolated in a way that was deeply distressing for them and families - no-one should ever have to die alone - but old people in care homes weren't allowed to see their loved ones even when well. But I did wonder at the time how and when society, and medicine, had shifted from the pragmatic 'pneumonia is the old person's friend' to this frenzied 'we must ensure all these frail and declining old people stay alive at all costs, even if it means the complete closedown of civil society.'

It would make an excellent philosophy dissertation

I so understand where you are coming from OP. You’re so brave to come out and say these things because the prevailing culture is life at all costs, and like you I’ve seen at first hand why this is so wickedly cruel.

@StiffyByngsDogBartholomew I agree that it would be a very interesting dissertation / thesis and be a platform to open up such difficult discussions from those who've been there and to let those who haven't, to try to understand what it's like.

I am now encountering a new taboo that I hadn't thought about- everywhere I look there are grief posts about being so sad that loved ones aren't with us this Christmas. People saying to me 'it must be so hard for you without having your parents now especially at Xmas'. I nod my head and say the right things while inside I'm thinking 'hooray this is the first Xmas in 16 feckin years where I don't need to feel guilty about not seeing my parents on Xmas day or drag the kids to see them when they want to just chill at home at Xmas and the first where I can properly relax and not worry about XYZABCDEF and the rest'.

The main grief I feel actually is sadness that my kids didn't have grandparents who did doting grandparent things and I didn't have healthy parents or a relationship with them where they were my 'best friends', so I actually don't miss what I never had.

I'm the same @Ilikeyoursleeves. It's six years ago this weekend that I realised my dad's heart failure was no longer being well managed and I needed to help him navigate medication reviews, cardiology checks and a new pacemaker operation. Plus help support him to look after mum with dementia. For six Christmases including the Covid ones they were my priority - I shopped, cooked, cleaned, was their PA, worked full time. There was more duty than enjoyment although we shared some nice moments I won't forget.

This year dad is gone and mum is in a care home. I spent today with her and now I am able to have a Christmas of my choosing for the first time in years. I am excited about that even though I miss my dad and the mum she used to be.

@theresnolimits . I think I have posted before that I walk my dog past a bench. Was a plaque to husband and wife both died late 90s. Then joined by a plaque their daughter died shortly after them in her 60s. That’s not a coincidence

@Ilikeyoursleeves I was asked recently by DM to sell DF car (expensive German car) so that she could give DB (who does F all to help) the cash from the sale! I said no I will not, if youbwant to do that fine, let him sell it... apparently I am being difficult and unreasonable

Appalled by all the stories here of selfish, lazy siblings. As if the trauma of witnessing a slow motion (sometimes glacially slow) death of a parent were not enough.
It's a stern corrective to me, as an only child - I think I really did have a Hallmark idea of what a fantasy brother or sister would be like.
There's no one to share the grief with. But also no one to add to the distress. My heart goes out to you all. I hope this doesn't feel glib, but at least you have the knowledge that you did the right thing and abided by your values. No venal sibling can take that from you.
And yes to the terror of letting the very old and unwell go. I used to work in medical research. All the money goes on relentlessly keeping people alive - because it brings those individual researchers kudos & funding? Research into good quality social care simply isn't sexy.

@AInightingale Agree wholeheartedly about the 'frenzy' over covid. Those years showed up in stark relief the issues we have as a society about old age and death.
@StiffyByngsDogBartholomew Go ahead and write the essay - I'll add a few dozen pages to it!
As PPs have said, fear of being sued is definitely one issue + blame culture + there's a lack of maturity/nuance/understanding that things aren't black and white, obviously made worse by social media, and short-termism in politics. I think that had been getting worse for some time but covid really seemed to bring it all to a head.

I had end of life discussions with my dad's GP and care home. The care home seemed hell bent on treating him etc, telling me how great it was he had drank nutrition shakes etc when his body was clearly trying to shut down naturally. I found it so frustrating when his QOL was non existent and he'd voiced several months beforehand that he didn't want to be here any more.

I felt so heartless having thoughts about wanting it to end for him (and me) but thankfully he had a great GP who immediately said no more treatment (antibiotics etc), put a DNR in place (my dad had previously refused to discuss it), prescribed end of life anticipatory meds and documented all this. I felt so relived after that, so that I wouldn't look like I was trying to bump him off and the care home also seemed relieved they finally had a clear plan and permission not to prolong the slow torturous ending.

I think having clear open honest conversations is the way to go plus clear documentation so that no one worries they will get sued.

My mum has staged a miraculous recovery. DC still worried that she'll die over Xmas and that yet again I'll have to miss an important family time. But actually I think she's still got a while left and this year, I will NOT spend Christmas day with her. The one plus point of her dementia is that she won't know what day it is anyway (😂 Strike me down for the black humour, but if I don't laugh, I'll cry!)