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.

@Tara336 Thankyou. It’s the colossal effort put in to, what seems to me, prolong someone’s suffering for another couple of weeks. She’s in her late 90s. We don’t live forever. But society doesn’t allow me to say that. It just piles on the guilt that I’m not doing enough and should be grateful that she’s still here. Well it’s shite!

@VoluptuaGoodshag I know exactly where you are coming from, my DF is now in a home, he was violent towards us and controlling. SS expected us to basically protect DM from hi 24 hours a day 7 days a week but no one was protecting us! Physically or mentally, I had to have him sectioned there was no choice. Now in his care home he cant speak, doesn't stop moving, won't sleep unless in a chair and barely eats. Then we visit and are told excitedly how he ate a cake today, sat down and drank tea. It's cruel he would hate the indignity of this and we hate watching it. Those that judge are the people that have not seen their families torn apart by it.

@Tara336 it’s hellish. A friend told me yesterday that her uncle had died and as I was giving her platitudes I’m inwardly screaming argh you’re so lucky, it’s over for you. Imagine the absurdity of being jealous of someone else’s grief. Strange times

@VoluptuaGoodshag no I completely understand, I wish it to be over for DF and for us which is effectively wishing him dead which if you say out loud sounds awful. I'm wondering if DM is beginning to show signs of dementia now and thinking to myself I can't cope with her having it too. One of my friends said the other day she thought her 40s/50s was when she would have "her time" as kids left home etc but now she's looking after an elderly mother instead

Same. My youngest has only just left for Uni. I’m knackered

@VoluptuaGoodshag me too

@VoluptuaGoodshag not absurd at all to have those thoughts. I had the exact same thoughts whenever I heard someone's parent died. My dad and mum both had slow torturous neurological conditions that robbed them of their lives over what seemed like an eternity. It's no wonder we have thoughts about wanting it all to be over. Sending hugs from someone who's been there, it's hellish.

At last. My Mum was assessed as incapacitated yesterday and been admitted to hospital to get a nasty eye infection treated as she is no longer capable of administering her meds herself. If she gets back out it will be to a care home or with some sort of care package.

I finally had a restful sleep last night.

That aside, I’m dreading when she finally goes and everyone says the usual platitudes. I’m wanting to push back against that and say how awful it was and this country needs to have a realistic and grown up conversation about this issue . It’s inhumane. I don’t want to hear how wonderful it is that my Mum lived to be 98. No, it’s not living, it’s being kept alive for a miserable existence just so folk can feel justified that a long life is better than a good life.

@VoluptuaGoodshag totally agree. At the end of life for both parents as yet another round of heavy duty antibiotics were administered to bed bound elderly people with dementia I was asking the doctors ‘why are you doing this?’

Enjoy your new found peace and stand firm with the hospital and SS. 💐

That aside, I’m dreading when she finally goes and everyone says the usual platitudes. To be honest, I didn’t find the “blessed relief” “it’s for the best” sentiments any easier.

I couldn't agree more about the prolongation of death. I know that there needs to be a conversation around assisted dying, but there's a more important one to be had around heavily medically assisted living. Why do we do it? It's miserable for families and robs the person of any dignity.

A couple of weeks before my dad died, I had a young doctor telling me that they were going to put a NGT in for nutrition to add to the oxygen tube and the iv antibiotics despite him having a ReSPECT form saying not to admit him to hospital. I really resented that they forced me into a position where I had to basically say, nah kill him off. I I should never have had to do that, especially given that we'd had all the difficult conversations with him already. I just burst into tears and said to her, please don't make me say it. "It" being that I don't want you to throw everything you've got at him.

@Valleyofthedollymix I agree too. My dad had zero (less than zero) QOL at the end, he couldn't walk, could barely move, speak, eat or drink, could barely swallow, was barely conscious. He had end stage Parkinson's and I remember thinking 'noooooo!' when they'd call me to say he'd had a 'good day' cos they got some calories into him. I wanted to say 'why?! Cos he's running a marathon next week?'. It felt like his natural death was being denied and prolonged in a very slow and torturous way but yet I feared if I brought that up it would be like I wanted them to bump him off. It was such an awful awful process.

Hard agree with all of the above. My mum's carers are always saying stuff like "ooh she ate some pudding today, so that's really good" and I want to snap back "no it really bloody isn't!"

Are other cultures like this or is it a peculiarly British thing ?

I really resented that they forced me into a position where I had to basically say, nah kill him off

This seems to be the norm @Valleyofthedollymix

We are in a similar situation with FIL right now. He’s fully bed bound, quality of life zero (can’t even watch TV because his vision has gone wobbly), has to be spoon fed, in nappies etc. On the most enormous cocktail of drugs and the oncologist recommended adding oral chemotherapy to the mix because he’s “doing well” aka “we thought you’d have died by now but you haven’t”. That is doing well, apparently.

I suspect the truth is the oncologist has no honest report of how bad FIL’s quality of life is, because he’s been wheeled into clinic saying he’s doing great. DH and MIL aren’t engaging with the situation at all. FIL is attending appointments alone (literally getting poured into the back of an ambulance and taken to outpatients) and isn’t telling anyone what’s being discussed.

He seems reasonably OK cognitively but now mid 80s so can’t exactly be relied upon to remember. Meanwhile, I feel heartless for thinking this is a living nightmare for all involved and surely we don’t want to extend life for as long as possible?

Had exactly the same experience with my dad and Parkinson's. Absolutely brutal and cruel.

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.

I agree 100% that people with a very poor quality of life are often kept alive for far too long - in and out of hospital, on drips and ABs, badgered and pestered to eat and drink when they no longer want to, multiple daily tablets to keep them ‘healthy’ - for what??

From all I’ve ever heard, though, it’s often the relatives, rather than the medics, who insist on ‘striving to keep alive’ - ‘I’m not ready to let Mum go!’ etc.

I was ‘lucky’ in that when the end for my mother finally came, it was all over in 36 hours,,but she was 97 and had had advanced dementia for some years. It was a most pitiful existence, even though she was very well cared for in her care home - but doubly incontinent etc. - every shred of dignity stripped away. Her former self would have been appalled, so an earlier release would IMO have been a lot more merciful.

Yes it’s horrible to have to say ‘it’! But say it I will and did today. The hospital staff seemed relieved that I’d said it. I’m realistic and can’t bear the thought of her being discharged into a prolonged and undignified demise.

Oh, so do I.

I dread putting my dcs through this. Would give anything for a switch off before dementia.

@Valleyofthedollymix I am so sorry you went through that. How does that happen with a respect thing in place?

This is why it's really important to have that conversation with family etc. Medical staff and carers are told to try and get very elderly/sick or both people to do, eat, move, whatever as much as possible. Tell everyone while you are able to, what you want to happen if you do become incapable. Get it on your medical records and make sure family know and will support you on it. 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.
@Valleyofthedollymix I think hospital staff much prefer honesty and truth in these conversations and probably wanted confirmation over fear of being sued if they stopped interventions - even when it's already in writing.

Probably time to petition parliament again.

I don't know why we got to the stage of NGTs etc. Part of the issue was the private care agency - they kept telling the two live-in carers, "we can't have him dying on our watch". Which seemed to be a really strange attitude given that if someone needs live-in care, then the chances of them dying are inevitably high and part of what we were paying for (at a cost of over £200,000 pa) was for the expertise that would allow him to die at home.

Both the best carer and I were on holiday and I think that's why he ended up in hospital although we'd said he wasn't to be admitted. He died at home, not with his family around him, but with two very lovely calm and trusted carers (they didn't call us in part because he'd almost died so many times before and I hadn't ever expressed a desire to be there I suppose). As deaths go I think it was a good one, but gosh I had to work so hard to get it for him and I don't think the rest of my family has any idea the emotional toll it took on me and what I had to do. My mother thinks she made it happen because she prayed that he'd die the night before.

Interesting what you say @chaosmaker about the hospital staff looking for confirmation and to avoid being sued. You might be right, but it didn't sound like that - it was a very cheery 'so we'll stick an NGT in tomorrow'.

A friend advised that I always ask 'what would you do if it were your relative?'. When I asked the consultant he said, 'actually I've just been through this and we prioritised comfort'. And it was such a relief to be told that and to feel that I was doing the right thing. A palliative care nurse also spoke to him and said he said three times he didn't want to go back to hospital.

But I'm articulate and posh - I don't think one should have to be to get the treatment that a consultant gives his own family.

@VoluptuaGoodshag keep saying 'it'. Am I right in thinking she's 90 freaking 8?

Oh I also needed the GP to update the ReSPECT form to make it more explicit. One GP was all 'oh he needs i/v antibiotics otherwise he'll die'. Fortunately the one who came round to do the updates was very much on my page and looked the carers in the eye and said 'you can call 111, but you cannot, I repeat cannot, call 999'. He died two days later and the carer said it was great for them that they had been told this. I think they felt proud of their work, if that doesn't sound too weird.

@Valleyofthedollymix That is a strange approach for the agency.
We are too much at the mercy of professionals. I am still mystified why they wouldn't accept dad was dying and wonder if they had a stack of legal cases.

Or it's their opinions. One time mum was in the hospital, a nurse said to me "it is a privilege to care for your elderly mother". I roared with rage but then burst into tears, which is probably why I didn't get thrown out.

I think mum might just be on her own next hospital admission, I can't do it again.