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 am really hoping that people now in mid-life are spared dementia. That at some point in the next couple of decades an effective treatment/prevention breakthrough will come, like other diseases which were dreaded historically but which are much less threatening now with medical advances.

In the meantime it hangs over me, the very strong genetic predisposition. I try to stay healthy and I don't drink - my uncle's dementia was made much worse by drinking heavily in his older years, I think, he literally lost his mind in the space of a year, while my mum's condition has come on more slowly.

It scares me too @AInightingale. My maternal grandmother had dementia and I truly can’t think of a worse way to go.

I too have an alcoholic uncle who developed dementia in his late 60s. Like you say, alcohol induced dementia is a very different beast, and progresses more quickly. My grandmother faded gradually over 10+ years.

Oh I feel for you. My mum passed away a couple of years ago after a long illness requiring 24 hour care and 4 weeks on her death bed. We were totally exhausted and though we loved her dearly were relieved when she finally slipped away. Every one at the time kept commiserating with us and saying how sad we must be. It's one of the last taboos to say you are not sad a parent has died. She was crying one day about 6 months before she died and said she was scared. i asked if she was scared of dying and she said no - it was of not dying. I hope euthanasia is available when my time comes

Hmm well while that is all well and good, what do people then die of ? Penicillin was a medical miracle but one of the negatives is that people that would previously have died from something like pneumonia or a UTI are now kept alive so they can suffer from something much more unpleasant for longer.

the human body is not evolved for such long lives. I have to say that every time more miraculous interventions are talked about, mainly in relation to geriatric medicine I just think "but what will replace it abd will that be worse ?" .

i would vote for any party that genuinely tackled this issue, its just going to get worse and worse as they find new ways to keep us living longer

Yes I know what you mean @StiffyByngsDogBartholomew , the body just wears out. But one of the sadnesses of dementia is that the sufferers are often very fit physically, my mum is 88 and fit as a fiddle, great mobility etc, and should have a better quality of life, would actually be absolutely fine living alone, but her brain is failing.

Yes, a vet WILL say when enough is enough.
In Covid era, I was in vet’s waiting room, and a man was there with his elderly dog, clearly much loved.

The vet said “ He’s beyond help now. It’s better to let him go now” She was firm and decisive- the owner agreed.

It was very poignant.
Due to wretched Covid rules, the owner couldn’t even be with his beloved dog.

Vet said when Covid era ended that this was the toughest part of job.
To not have loving owners present, or to be able to do home euthanasia for pets.

Oh my goodness Voluptua, I came on to vent pretty much exactly the same feelings. Last week mum was apparently dying. This week, she's 'fine' again (obviously not fine at all - still totally dependent on 24 hour care, but eating, drinking, able to sit up).
I know it's dreadful of me but today, which I've had to spend running around dealing with stuff for her, I'm so depressed. However horrible this is, the truth is that I had hoped it was the end but instead I'm back to sorting things with the house, helping the carers, dealing with the meds and gp/nurse etc. Just want to cry.

@SeriouslyAgain big hugs to you. It’s just grim. I’m just back from another hospital visit and yes Mum was sitting up today. But what a state she’s in. So undignified and she too is just exhausted and wanted back into bed to sleep. The staff are wonderful but the situation is hellish

I sometimes joke that I'll die before my mum. Just from the bloody stress of it 😂. It's such a relief to find that I'm not the only one with these thoughts.

A friend went through this with arelative and it became a bit of a joke with him when he would get the call that the relative was dying we would say "again?" I am now living through it too and we are now making the same joke re my DF black humour I guess.

My ma survives everything and sure she’ll survive me! She loves staying alive - we joke she’s lining my grandkids up as future carers as she’ll get through me and my kids 🤣

I don’t even joke about it- I said in all seriousness to someone the other day that I expect to be on my own deathbed and worrying about leaving DD to cope with
MIL. I’m not even caring for her in any meaningful way, so I feel bad moaning on here, but we’ve been summoned to see her as it may be the end half a dozen times in the last five years ,and she’s always recovered. She doesn’t want to live,she’s blind, deaf, immobile, bored to tears and lonely. I think she’s going to live to be 115 - she’s already passed the century. I’m making contingency plans for the crisis that’s bound to strike in the middle of DD’s GCSEs. Which in turn means I can’t change jobs till after that, because I’m established in the present one and I can rely on them to be supportive.

@NefretForth - it’s so hard with conflicting priorities- I’m fortunate my kids are grown so aren’t impacted with my absence in a worrying way - they did say Xmas isn’t the same without me, as I just go to my mum’s since my dad passed, but I couldn’t leave an old frail widow solo.
It’s awful when they’re fed up themselves as well - but just such a relentless mental load for you all - wishing you all peace.

And to you, @MsJinks . Reading your posts I feel fairly ashamed about complaining.

Gosh don’t ever feel bad - every bit of care and responsibility for another person is not easy (if you’re human!) - it definitely impacted my life being on call (on edge) more than you realise really and it’s long and ongoing and never ending, or feels like it!
My current care load happened unexpectedly and unintentionally- I’m trying to find a way to reconcile that still so moan a lot!
I do have to laugh, as it’s how I keep some sanity and keep some of how I normally am - not always appropriate - I do have to rant on here as well - and I do have to stick my headphones on for 5 and blast out Scottish music and dream of big spaces at times. That’s my stress relief starters so far and they are keeping me off the drink 🤦🏻‍♀️ and blocking out some of the frustration!

Someone on another thread about their mum with Alzheimers “After trying to take her own life my very poorly, exhausted, devastated Dad realised we couldn't keep her safe anymore..”. So many people on this board saying “I would take things into my own hands” and yet, when someone tries to do just that, we feel we must “keep them safe”.

Hypothetical question based on a real situation:

I got a call on Monday from my mum's care home to say they were getting the doctor as she was not herself. The doctor came and prescribed antibiotics for a chest infection as her lungs were crackling a bit when listened to. There could well be some guesswork / cautious prescribing just in case it's an infection going on.

Mum is 91 with moderate to severe dementia. Can still talk (although not always making sense), walk, feed, toilet herself. I don't know if she always knows who I am but occasionally says something that makes it clear she does (although maybe that's just chance). She still gets some enjoyment from life but we have discussed end of life with the care home and doctors that she has a DNAR and would not go to hospital if ill as it would be too confusing and distressing for her.

I have medical POA. If in time she is losing the ability to walk, talk, toilet herself would the GP ever reach a stage of deciding it's not appropriate to prescribe antibiotics? Would I be able to refuse prescription of antibiotics? Or does she simply end up so frail that the antibiotics don't work anyway? I want something else to take her before the Alzheimers does because the end stages of that illness are awful.

Woken up cheerier to face another day. Today my job is to 'help' mum with Xmas cards.
So much in these posts which chimes with me. Black humour is one of my 'go to's'.
And yes I'm also waiting for the crisis around GCSE time. We've had crises around birthdays, Christmases, holidays, starting primary school, transition to secondary school. Literally every important stage of childhood.
The thought of mum getting to 100 fills me with horror.

Choux, you can refuse antibiotics if that would have been her wish.
Had this issue with my mum... Just on a practical note, if your DM gets an infection and is also non-responsive and unable to swallow antibiotics, the problem is kind of sidestepped...because then the only way to get them inside her would be an antibiotic drip in hospital, which hopefully she wouldn't be taken to.

Thanks. I know that would be her wish as I have a journal entry she wrote 7 years ago about not wanting to live 'a half life'.

We aren't there yet but am worried about being forced to keep prolonging her life as she deteriorates. The care home have already said they will discuss with the GP about getting her on liquid medications as she is losing ability to understand about taking her tablets. Her swallow is fine but if the tablets don't go down she then thinks there is something in her mouth and fishes it out. I think you can get liquid antibiotics though.

I think we could just do better for the sick and old. Something like flats with professional NHS staff on site. The three vulnerable adults in my life and close to me, all haven't been able to get about by themselves and all wanted to stay at home. Which I do understand: Elsie was doing fine at home, she fell over, went into hospital, caught COVID and died. Kind of stories. They are petrified of going in. And I don't blame them. Two out of the three weren't having that much of a life at all. One bed bound, the other requiring hospital treatment frequently or would die. The other very weak, but can just about wash and feed themselves. All three amazingly psychologically resilient against all odds, none of them want for death. And in a good moment, totally there. The wake of worry and everything around those people still washes back and forth over those that were and are around them. And two of them are dead now.

Personally it prevents me from doing lots of things. Like holidaying, or getting drunk, or travelling far. Some family just wanted no part of any of it. I would love it if the state had a network of good quality care homes. Or even to bulk out community support services. But let's face it, even paid care however great it is, is always under time and financial constraints. And some days it's hard enough looking after myself.

It's interesting. I think that in the modern world we're very divorced from death and therefore very obsessed with stopping it irrespective of the futility of that.
And then there's the guilt people feel around using care homes, so perhaps the decision gets couched in terms of 'safety' rather than admitting that 'this person is too old and ill for me to be able to (or want to) care for them'.
As a society we've just got ourselves into a weird position where everything - including the death of very old, very ill people is seen as preventable, a societal tragedy and someone else's fault. I don't think it's any of those things. But this is definitely the only place I would put that into words!

@Choux we had a discussion with Dr when DF was in the MH unit for his dementia before being moved to the care home and discussed a "peace plan" I don't know if that's a universal name or just what this place called it, but basically we have agreed if he gets physically ill again that he will just be kept comfortable and let nature take its course. I wish I could remember all the details but I know he will be kept in the care home and allowed to pass there.

What I find frustrating is the we have posters up in work about antibiotic resistance encouraging people not to take them etc etc yet very old, very frail people are routinely given them practically daily to stop them dying, presumably adding to the cycle of resistance

@StiffyByngsDogBartholomew quite. I was told mum had some crackling in her lungs and wasn't herself. Given she can't express herself well anymore I'm sure there was some guesswork about her ailment and antibiotics were prescribed just in case.

Conversely my dad died a few months ago. He had heart failure and his kidney function was declining due to several years of maximum licensed doses of diuretics. He got a UTI and, apparently due to his poor kidney function, his GP wanted to grow a culture to work out what the infection was so they could give him the right antibiotics which would be least damaging to his kidneys. He was also under the Intensive Home Support Service whose goal is to keep patients out of hospital who were trying to get him immediate antibiotics. He died in his sleep before he was on antibiotics. Looking back I wonder if the GP knew it was more humane to let a UTI overwhelm a frail patient at home than have him get over the UTI and then die a few weeks later in hospital from swollen, ulcerated legs.