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've rebelled this Christmas and I refuse to do it. I've provided Christmas for 19 years for my DPs (who constantly bickered) and in later years just my DM (driving lunch round during Covid) and for about 10+ of the last years thinking well I better do it because it might be their last. Last year, I had only just finished chemo. My DB, who is actually a trained chef, has never done it. So we're going to a pub, DM is still coming, but at least I don't have to do all the prep and the cooking and clearing up, so it's nearer the Christmas that I would choose I guess and I'm not dreading it quite so much as usual!

honestly this post sounds very callous and cold hearted. How horrific to have family by you, that wish you dead. Nasty nasty post.

I don't think that's what @SierraSapphire was saying at all. She was venting because she has borne the Christmas load for 19 years, even after chemo. This year they are having Christmas lunch out. All power to her and I hope her rellies are grateful she has shouldered it. I know exactly what she means.

What's callous is your utter lack of empathy towards someone in a situation you clearly don't understand. Perhaps one day you'll think back and rue it.

@Bobsyouraunty you’ve missed the point, this is not about wishing someone was dead, it’s about prolonging life long after any quality of life has disappeared and when “life” is also continuing at huge cost to the remaining family.

Was that at me? Thanks @RosesAndHellebores for the defence! To be honest, I would rather have a Christmas where I don't have to look after my DM. Maybe that is selfish, but my brother seems to get away with not doing it. My DPs left me homeless when I was in my early 20s, and I was not welcome home for Christmas for years and years because my dad kept throwing me out, for example, once because I challenged a racist remark he made. He didn't speak to me for a year after that. my mum recognised that he treated me badly but didn't do anything because she was scared of his temper. Christmases with them have been horrible and I have not had a Christmas that I would've chosen (including whilst waiting through a cancer diagnosis and last year having just finished chemo), but nobody seems to give a shit about my happiness. I am happy to give my mum a nice day, and that's exactly what I've done for the last 19 years, but to be honest, no, it isn't what I would've chosen. I am in the middle of a possible cancer recurrence scare (though hopefully not), and even though she's 90, I'm aware could possibly be dead before her.

And thanks everyone else as well for the comments that were made whilst I compose my rant!

@SierraSapphire I think the horrid comment made by @Bobsyouraunty is about the OP and the thread in general, not your recent post.

@Bobsyouraunty is obviously someone who hasnt taken the time to read the thread, to even attempt to empathise and show compassion to those of us who have been through this hell / are currently going through it.

You wouldn't wish this on anyone and the thread is about old and ill relatives who are waaaay beyond living. Its more horrific to keep them alive and deliberately give them a slow, painful torturous and undignified death

The gall of someone coming into a thread as massive as this one, to berate everyone in it, having read (I’m guessing) no more than the OP.

Well @Bobsyouraunty I hope you feel good about yourself.

my biggest worry (late 60s) is that I will die first I’m more selfish than you - my biggest worry is that DH will die first.

but old people in care homes weren't allowed to see their loved ones even when well I went for a year without a conversation with my DF - he was too deaf for phone calls, and can no longer write. So I would write letters he could read, he would occasionally phone and launch a monologue. But we never had a dialogue.

But we must never get into the simplistic mindset of “it’s ok to deliberately introduce covid into care homes because in most cases it’s a blessed relief”. My father has always been adamant he wants to keep going as long as possible. I don’t think he should be denied that because someone has decided to introduce a resident with covid into his nursing home. While I absolutely believe that it is inhumane to keep people alive when they are longing for death, I did not agree with the casual writing off of people’s lives during covid.

'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.' I didn’t see much of that, to be honest. There was a lot of “hospital beds will be reserved for those most likely to benefit - with (young) age as a big factor in “likely to benefit”. Deliberately decanting infected elderly into care homes while not providing the PPE to help them cope. Post after post in MN saying “old people are going to die soon anyway” - showing a great lack of understanding of the difference between “life expectancy at birth” and “remaining life expectancy”. Even the reframing of”we must avoid health services being overrun “ as “we are protecting the old at all costs”

@Bobsyouraunty

I genuinely wish your elderly relatives a very long life.

When you realise there is no external support and it is all down to you, or worse still, one of your family is hurt by an elderly driver with dementia because seemingly there is no way of stopping them driving and you are at your very lowest ebb and need support. At that point, I wonder exactly how you’d feel if after years of doing your best, someone posts a ‘nasty, nasty comment’ like yours.

I often wonder what morivates people like you to take the time to disparage a group of clearly caring but exhausted women. Hope you feel a whole lot better being so pious. Enjoy your presumably stress-free but judgmental life.

What a ridiculous pointless comment. You lack empathy for the op and what she's going through, which actually makes you cold hearted

'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 People are so different! I loved a full house at Christmas, whether we were at home or at my aunt’s, despite not having much of a relationship with GPs, not liking my uncle, and finding my cousin bossy. But lovely to have enough people to make games and quizzes fun. Sad that this Christmas it’ll just be 3 of us, just not the same. And, yes, I know not everyone is lucky enough to have a decent family, this isn’t a criticism just a comment on how people’s expectations differ

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. For “sexy” read “profitable “. Certainly drugs research is focused on things that can be sold in high quantity to nations who can afford to pay a good price.

@MereDintofPandiculation you're right.
Sexy was a shorthand for profitable. We are in agreement.
I note that@Bobsyouraunty has lobbed their hand grenade in the room and run off again. If you could come back, it could open up a really helpful conversation.

@popularinthe80s i just had a Quick Look at @Bobsyouraunty posts on MN. Yeah, I don’t think that they’re the sort of person we could learn anything from tbh.

Actually I'm glad for this post, not because I agree, far from it. I think it shows the general views of society towards women like you. You bend over backwards, beyond normal breaking point, at absolutely massive cost to yourself for years and years and this is how you are viewed for it. Wtf is wrong with our world!
I remember a friend of mine gave up her job to move in and look after her mum. Mum had dementia and multiple other health problems and was up and down all night. This went on for years. Friend was broken by this and poured it all out in tears to a district nurse visiting on day. Nurse listened to it all and replied that friend was doing a great job and 'as long as your mum's alright, that's the only thing that matters'. Friend was left suicidal.

No I'm sure someone will come along and say cares need better support. Agreed. But how exactly does that happen? There is neither the money nor the people (even if there was the money) to provide it.

Finally, how is it moral to try to do everything we can to prevent an extremely elderly person with multiple painful and distressing health conditions from dying?

@Kendodd it's not moral IMO to keep elderly people alive who are severely ill, distressed, in pain, locked in their own body, not able to toilet independently, not able to eat, speak, move, think, remember, have dignity or choice. It actually angers me that there's a blanket view that we must keep everyone alive against all odds, like that's the better option. I wouldn't have put a pet through what both my mum and dad went through at the end of their lives.

Obviously if they had had any chance of a good QOL my thinking would have been very different, but they didn't and their paths were only getting worse each day. To fight to keep someone in that position alive is downright inhumane and torturous, not only for the ill person but for the relatives watching them slowly get tortured.

Nurse listened to it all and replied that friend was doing a great job and 'as long as your mum's alright, that's the only thing that matters'. Friend was left suicidal.

That makes me so angry. Women as support humans, again.

It’s like when a woman has a baby, and she’s hanging by a thread with PND, birth trauma, sleep deprivation etc. The same phrase: “At least you have a healthy baby, that’s all that matters”.

I'm sitting by my mum's bed again, after a 3.5 hour drive. Against all odds she's still hanging onto life. She's doing so well, say the care staff. I smile and nod.

Moving her (for nappy changes, to prevent bedsores etc) causes her to cry out. She groans after eating. Sometimes she cries out for no apparent reason. But otherwise she cannot communicate, sit up, feed herself, stay awake for more than a few minutes.

I've monologued a bit to her about inconsequential stuff, and eaten a sandwich. After another 30 mins or so, I'll drive 3.5 hours home.

I'm no longer grieving - she "died" years ago (and we had a tricksy relationship long before she became ill). But I feel very flat and tired.

Not really relevant to the thread,just rambling

My father is bed bound, his fine scientific mind no longer capable of any logic. By my standards, no quality of life. But he's warm, comfortable, well fed and happy. So it's now much easier for me to adhere to his often stated desire to stay alive as long as possible than it was when he was declining, and still trying desperately hard to be a support to everybody and put right the wrongs of the work, and frustrated that things weren't working. So while I half wish he'd just call it a day, the other half wants him to enjoy this period for as long as he wants.

I shall be cross with him if he outlives DH, which is increasingly looking a possibility.

At least I don't have the day to day care, just the admin.
.

I'm in this position with two family members. I feel trapped and utterly miserable. I'm so envious of people who drop dead, I know the shock is hard for the relatives, but they will never have to endure the slow slow deterioration.

@Iidentifyasweirdbarbie Good Lord😮i think you're right!

@ReadySalty , @moggerhanger and everyone - i feel what you're feeling - with that deep, somatic knowledge you can only get with experience.
The physical exhaustion and the mental exhaustion. You start off feeling everything- the sadness for them, for yourself - for life in general - the pain of our fragility.
But months/years along the road, you've stopped feeling. People say it must be so sad for you, and you nod and smile because it's expected.
But you're not sad. You're not anything. You're just focused on getting through the next hour/crisis. Or crouching waiting for the next one

@MereDintofPandiculation (apologies for the profusion of messages from me) that must be a horrible worry to carry, that your partner may go before your father. I'm really sorry you're facing that.

Completely sympathise and empathise. My mum was kept alive in a coma for a week, they said she wouldn't recover, it was a waiting game. I asked why feed her if she's moribund? It seemed cruel. I can't remember all the details, it was near 30 years ago, but they stopped feeding her so she didn't have to drag on for God knows how long. Even that week (it was more but honestly it's a miserable blur) was too much.

So respect to all the daughters here for their kindness and patience. You are amazing and your feelings are valid despite the stupid comments here.

My dad was also kept alive but mnd finished him off fairly quickly. I've yet to see a 'good' death in my family. I hope I buck the trend