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.

Given that an NG tube increases all.sorts of risks, including the risk of aspiration, it should be a very carefully considered intervention and not 'let's stick one in because this 90 year old is off legs'. To do my own Trust justice, I don't know any doctors here who would do it without a hefty screaming match discussion.

My dad is fully bed bound, with incontinence pads. Apparently no quality of life but he says “I’m comfortable, I’m warm, I’m well fed, I’m happy”. and I genuinely believe he’s happy and enjoying the limited life he has. If he still had all his mental faculties he’d be frustrated as hell, but as he is, he’s still enjoying life in his way. So what is suffering to us may not be suffering to the elderly person. (But if they can’t communicate, how can we tell?)

On the other hand I’d say the emphasis in the nursing home is not to have inappropriate interventions and to steer clear of hospitals. I’ve almost had to argue the other way, given my father’s clear wishes that he wants to live as long as possible. Strange position to be in. There was joy in the home when Ada, who was vociferous in her hatred of being still there, finally curled up in her bed and passed away.

My mother was the other way, quite clear life had no quality, and in retrospect should have been allowed to go sooner. I wish I had stood against the urging her to drink the high protein drinks she hated, but you’re not thinking of keeping them alive, you’re thinking of making them feel better.

This is the juxtaposition. My Mum has perked up today, everyone thinks yay! I think oh gawd, more weeks/months of life in hold and feel/sound like a shit for thinking that way.
im exhausted already by the constant hospital visits which could now go on daily for weeks.

The only possible positive I can take from finding myself in this position with DF is that its made me have the hard conversations with DH and DD about what I would want for myself when the time comes and what DH wants. DF never discussed things with us but I know he would hate how things are now, yesterday he didn't recognise DM. I for the first time since all this started about 18 months ago told my DH how much I really am struggling with it all and we have agreed I maybe need some counselling

" It is true that lots of family push for life at all cost but it is a cruelty that we can only seem to see when it's a pet in the same condition."
@chaosmaker thr cynic in me says that families wouldn't be quite so keen on keeping confused, bed ridden, paralysed 93 year old granny alive at all costs if they were footing the bill in the same way as at the vet.

Well,a lot of them are, in a way. Every extra week is another £1000 from the inheritance.

I feel so, so sad for all of those people who have shared their experience here. I hope you can all stay as strong as you need to be. xxx

Seems insane that a fading life can be ended painlessly with morphine or barbiturate, and we all know that doctors used to do this. I wouldn't even define it as murder, but keeping the very sick alive to suffer is definitely torture.

Yes, I only recently learned that it used to be standard practice to 'assist' people who were really at the end. King George V was overdosed by his doctor so that his death would be announced in the morning paper, rather than him hanging on until the next day and it coming out in the 'less respectable' evening edition. This was all planned in advance and the family were full aware.

I wonder why they stopped, and when?

@iloveeverykindofcat it stopped when Dr Harold Shipman was caught enjoying it a little too much. His impact is almost more evil than what he did.

@RosesAndHellebores ohhh that makes a lot of sense. Damn him. Still doing harm all these years later.

In the 80s. my granddad was aged 86 and in hospital with a pretty hopelessly advanced lung cancer. He'd been there a week and my dad got a call at about 5 o'clock one afternoon to say he'd died. My father just very matter of factly said that 'the doctor must have given him something'. He worked as a funeral director and he must have seen this a lot. In a way it's appalling, doctors deciding to 'end' someone, but I'd imagine they saw it as preventing unnecessary suffering. And freeing up a hospital bed, if we're honest.

I'd argue it stopped a long time before then. I do not want 'care' at all when I'm in a position to need it and I say that as a carer. It seems to me that as soon as someone enters the medical system they lose a lot of themselves to what the experts say and how they want to do things and you have to fight against it to get anything differently.
I had experience of that with my late ex partner who finally was allowed to slip away with only morphine for pain as there was nothing left to do and he had no quality of life and depression at that point. It was a huge relief to all of those who loved him and of course to him that it could come to a managed end.
With my mother, she would have hated me looking after her but you do feel obligated to keep them alive and trying not to do so can come under abusing a vulnerable person....

It really does need looking at legally so that everyone is protected properly.

I am sorry to hear that @chaosmaker.

It's pretty horrible imv - the stuffing the old, slowly dying person full of antibiotics. Thing is you've only seen your relative fail - the Care Home staff, hospital staff must see it weekly if not daily - surely they can see the misery they are prolonging.
Definitely have the conversation with your DCs/Partner about how you want your life to end. If you have hospital staff looking astounded when your relative suggests that they don't give that injection of antibiotic that prolongs your demise it's hard for them to stick to their guns.

My mum has often said things like “we live too long these days”, but then when she had Covid she was scared she was dying and would have taken any medical treatment offered. (She didn’t have Covid badly, she was at home and “just” felt unwell and that freaked her out a bit).

So even though she has (IMHO) very little QoL, she’s enough capacity to still choose medical treatment. She’s not said “I’ve had enough” yet, which would be the point I would start declining active treatment on her behalf.

So glad to find this thread - obviously sad for all who need to be on it though.
my mum has had reducing QOL for a few years but recently was fast tracked home from hospital as she had ‘hours to days’ - a month later that has changed to ‘oh not yet’ ‘home has helped her’ ‘months’ - I’m told to take ‘joy’ from the good days but it’s so hard isn’t it. I resisted living with her previously but this time, as short term and to help, I moved straight in and cancelled my life and work for a couple of weeks - I wish I could be glad it’s going to be longer but I struggle 24/7 in the room with her - I’ve been sleeping on the floor till this weekend when too much new equipment without removal of old equipment meant I couldn’t - I just don’t know how long I can chill about it but know I should be grateful for me and my mum.
my mum does desperately want to live and pays no heed to EOL conversations which the GP had, except to get angry. She’s bedbound, on oxygen and catheterised/pads, and helpless really - sometimes feeding herself finger foods and sometimes needing help. Sometimes understanding Alexa and sometimes not for the lights/heating- also too hot then too cold - and misunderstands half of what Isay to her when explaining what’s on TV - sad she can’t read but hoping for a cataracts op. Sad when my kids sit with her as she’s better when I’m there - though dies accept it a bit tbf.
Found out this morning tgat the full care package she has, and had sane really for 3 years prior, now falls under CC and so care company won’t fetch her meds like they did when under social care and she paid- I got unreasonably upset/angry as I can’t get them, as I can’t leave her and I don’t understand why ‘family’ are assumed to be able to do these things. I am an only one though have kids but it seems to be beyond the grasp of the nurses that my kids have jobs/kids and live an hours drive away and can’t just support anytime I choose - and they do help a lot just can’t appear randomly and suddenly- guess this is what’s expected of family though - maybe we are selfish - I don’t know.
Im now worried about my job, my own hospital appointments and my sleep 🤦🏻‍♀️ but feel so selfish not to just be happy she’s here and glad to be - surely she deserves someone to be very happy for her. I feel like a ghoul trying to get an expiry date on her but it’s so difficult isn’t it.
anyway that’s just a rant isn’t it, and no use to anyone but me 🤦🏻‍♀️, but that’s today and hopefully tomorrow will be just a bit better - for everyone.

@MsJinks I hear you. 💐

Sorry Mrs Jinks. It is very frustrating that NHS assumes a family member is local and willing and available 24 hours a day. Occasionally I encounter a staff member who understands (and I usually suspect has similar experience themselves). You would be welcome in the cockroach cafe thread for help on some of the practicalities at least. Mums meds get delivered by the pharmacy but that relies on someone being able to answer the door and receive them.

Thank you both - it’s difficult to rant elsewhere easily - even palliative care folk seem to think this is a potentially lovely time - I’ll pop in the cafe too (and rant some more 🤦🏻‍♀️🤣).
re the meds I’ve spent the last couple of years insisting the care company fetch them - as per care plan that was paid for by my mum (though capped by council)- and arguing I’m not giving out the keysafe number to delivery drivers to save them time they are paid for anyway 🤦🏻‍♀️
Ive also said same to her pharmacy drivers who used to try and deliver and not understand no one answered door - now of course I’ve got to alter this and do what both pharmacy and carers always hoped 🤷🏼‍♀️
unfortunately the meds yesterday were sent to only Sunday open pharmacy, not normal one, though yesterday carers thought they could collect this morning. This random pharmacy has offered to deliver as a one off which was kind though not done so yet.
I could collect/kids could if they weren’t urgent , alternatively I could have arranged all this before it got urgent if I’d been made aware - obviously change in care plan not my affair 🤦🏻‍♀️

How frustrating. It’s one thing having a philosophy of keeping people at home as long as possible, but these kinds of practicalities make it very very difficult as there’s a lack of joined up thinking/processes. And it all comes back to having family to step in.

It’s no wonder so many people women drop out of work in their middle age to support and care for elderly relatives.

https://x.com/getlostjj/status/1731587604955488609?s=20

I was privileged to be able to care for my mum at the end of her life and find it shocking that people want to euthanise parents like animals. I only wish she was still here with us now.

There does need to be more practical support for families of elderly, sick people. It must be dreadful for people without willing family members to step in.

Traditionally, such care has been provided exclusively by daughters and daughters-in-law and that needs to change. As a society we have had such care hidden away, neglected and underfunded.

The only humane way forward is to set up flexible care that's properly funded.

@Redebs well I’m delighted for you. I’m glad that you found it a privilege but just because that’s how it was for you, it doesn’t mean it’s how it is for everybody. That doesn’t make us monsters just folk at the end of their tether admitting their truth anonymously coz they cannot do so in real life for fear of being judged, by folk like yourself.

What you say is true that we should have properly funded care but how exactly?? And until that happens people on here will run themselves into the ground trying to fulfil that role.

While being shat on from above and treated like scroungers

@Redebs yes my dog has had a kinder ending then my DF is having that's for sure, it was dignified and peaceful. My DF is not a pleasure to care for, he is suffering, confused, incontinent, doesn't sleep, doesn't eat and is in a living hell, so yes I do think people should have that option to end their suffering I'd certainly choose it for myself rather than suffer like he is and have my DD watch on helplessly.