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 couldn’t agree with you more. One of my great uncles dropped dead completely unexpectedly one day and I thought wow, good for him. Terrible shock for his children but no long decline, no fear, no pain, no awareness: just gone. I really believe it’s the best death anyone could have.

Moggerhanger - your post chimes with me so much. Some days with my mum, I come away feeling upset or angry, but others, there is just a 'flatness', a feeling of 'here we go again'. I almost feel more sad about that. It just seems so awful that at the end of her 90 years of life, that's all I've ended up feeling...
MereDint, that is very hard indeed wondering if your father will outlive your husband.
I joke about my mum outliving many younger than her but it's actually not a joke in that two of my closest friends have died in the last two years, both late 40s, leaving behind 3 children between them. Another is currently on last-ditch chemo.
Completely illogical as well as horrible, but in my worst moments I actually resent my mum for outliving my friends. Worse at this time of year when I would have been writing them Xmas cards, having Xmas drinks etc.

And just to say after 'that' post from someone who knows nothing about this stuff, you're all amazing. I'm in awe of how much kindness, patience, effort and strength you all show.

My nan (92) was fine one Saturday morning when we visited her, then we went onto my other grandmother with my mum, whilst my dad stayed with my nan, and by the time he came over to us at teatime, my nan had thought her bra strap was a bit tight, then dropped dead with a heart attack. I guess it was a shock for everyone, I was pretty young, but I've always thought that would be a good way to go. My other grandma had neuralgic pain from shingles for years before she finally broke her hip and never left hospital, all much grimmer.

Thanks @popularinthe80s

@Bobsyouraunty you really don't have a bloody clue do you. Off you pop to another thread and take your judgement with you.

Yep, this resonates with me. I’ve just come from an awful visit with DM who is deterioration daily. She is depressed, often crying and distressed, anxious about imaginary problems (like her long dead parents being angry with her that she had done something bad) in physical pain, sometimes angry and aggressive and increasingly too difficult for the carers. All the other residents seem compliant and happy in comparison. I used to cry in the early days when she accused me of stealing or rang demanding I drop everything and fix some problem. Now I have no idea how I feel anymore. I get in the car and drive home. I don’t feel sad or angry, I don’t have that luxury to keep feeling sad otherwise I would just have to give up.

My Nan died of cancer, she was in hospital for less than 3 weeks and was able to have normal conversations up until the last couple of days. I consider that a good death compared to what my DM is enduring with dementia. Cancer.

I don’t know what inspires people like Bob to come on here and have a go at people who are already suffering but if it gives them pleasure the problem is with their personality and that’s something they can never escape.

Just checking back in to wish the rest of you going through this as peaceful a time over Christmas as is possible in this situation.

I really identify with the idea that you can't be sad, because you've been through the sad and upset months or years ago, and now you've done your grieving and are ready to move on. I was at my most upset when my dad was first diagnosed with dementia and the symptoms started to become obvious. That was really, really hard. Being told by the consultant in the hospital that there was no more they could do except keep him comfortable was like a light at the end of a tunnel. When he finally did die, we did the whole "yes it's very sad, we're all terribly upset" although I don't think sibling and I really were terribly upset, we were concerned for mum, and overwhelmed with the practicalities and things we needed to do and people we needed to tell, but it was such a relief.

The emotional numbness is definitely a thing. Then something just piercingly sad reminds you of the person they were - like old Christmas decorations, they are a trigger for me. I am clearing my mum's house atm (she's in care) and it's very difficult at times. Daft things - she kept everything - including post-it notes the grandchildren had written little things on when they were learning to write.

My Mum and Dad came over for lunch today. Mum loves Christmas, loves the decorations etc. I went upstairs to put some of DDs clothes away and her Christmas tree was all twinkling abd pretty. I felt so sad that Mum will never see DDs room all decorated fir Christmas. She will never go upstairs again.
i find the grief hidden amongst the little details.

@SinisterBumFacedCat you put it very well; sadness is a luxury we can't let ourselves feel, because we have to keep functioning.
@StiffyByngsDogBartholomew and @AInightingale yes- the day-to-day numbness can be unexpectedly pierced by sadness, which breaks you.
Yesterday it was the thought that mum will never come downstairs again (an odd reversal of your situation, @StiffyByngsDogBartholomew). She will never see the lovely living room that she chose to be decorated to her tastes.
And birdsong, especially blackbirds. She taught me the names of all the garden birds.
My mum and I have had a complex relationship. But she loves me fiercely (I know I am more fortunate than some of us on this board in that- my heart goes out to those expected to care, where they themselves have received none). She is the only person apart from my DP (again, I am fortunate) who loves me without condition. That will be gone.

This! Especially the last paragraph. Totally this.

@Bobsyouraunty a simple message - go fuck your self!

So 3 years ago my dad asked not to go back into hospital as he’d catch something and did - 3 weeks later he did just that - no visits of course then so very distressing for him, mainly to be apart from my mum . This time my mum was ‘dying’ and just wanted to be home, think she would have passed if left in hospital tbh. Turned out she bounced back at home, but just a bit, but now is nauseous/sick every day, in the night, can’t move and gets easily stuck in bed if she slips, apart from being on oxygen, catheterised, bedbound anyway. It looks like being slow and painful for her tbh now, very little of the ‘joy’ the palliative nurse talked about for sure!
I once said be nice if they could just go suddenly together like a plane crash that was on tv (but not that exactly of course because others) - they were so close and aging issues already - one of my kids was horrified and said I should hope they live as long as possible as they were happy though struggling. She now understands what I meant and agrees fully.
There is no good with EOL in my experience and no easy or good decision how to help relatives or what to do I think.
Thoughts to all in this position.

I fully understand the 'I hoped they'd die together in a plane crash' position. I hoped and still hope my Dad, 91, will eventually 'fall asleep' watching one of his favourite cowboy films on television. Unfortunately, he now has symptoms of illness which he is trying to hide and he is refusing to see a doctor. I'm not forcing him to approach the medics, I'm just trying to support him as he copes in his own way.

@StopStartStop - I sorta even thought my mum would fall asleep, at least in an extended way where she just slows and then stops breathing- I even thought it was happening twice - she likes living though and has sort of improved since then but now sick instead, so maybe not and it will drag out.
You have to let them work it out themselves though, just try and support and hope for the best outcome. You are being very caring and I hope it does pan out as well as it can.
Not an easy ride here for anyone at all.

SS have sprung a visit on DF in the home today, called SIL and asked permission to visit and check on him. I'm assuming just to make sure he's settled as been in the home since August. I wish they would give more notice so one of us can attend and put our opinions forward

I've just had a call from the nursing home, my mum has a chest infection, the first one since a year ago when we finally got them to agree to stop any antibiotics (she had far more frequent infections when they were giving her little courses of antibiotics, not surprisingly). This genuinely might be it for her. I cannot think of us better Christmas present for her or for us than the final end of this dreadful phase of her life. I can't wait to start remembering my lovely mum as she was in her prime and to move past the emotional freezer I've had to be in to cope with the last two years.

I'm actually praying for her peace. I'm an atheist.

Permanent my mother believes that she was responsible for my dad's death because she'd prayed for it so many times. I think the updated ReSPECT form and the no more hospital admissions that I sorted probably had more to do with it...

Emotional freezer, what a great phrase. Really hope you can clamber out of it soon.

Re. the plane crash thoughts, did anyone else see the reports of the deaths of the parents of Phil Spencer from Location, Location, Location? One with Alzheimer's, one with Parkinsons, died in a car crash, 82 and 89. The papers called it a tragedy, but Phil himself called it "a good end" (with the caveat "if there can ever be such a thing").

They sounded so like my own parents, with the illnesses reversed, but almost identical ages and a long marriage. Needless to say, I err with agreeing with Phil rather than the tragedy angle.

Also on the news, Dignitas. I am glad that there is a debate around assisted dying, but as I've said before I think there is a much more urgent debate to be had about medically assisted prolongation of life/death.

By which I mean the unnecessary medical interventions to keep very elderly, very ill people alive. It feels like a much simpler debate than the active ending of life in assisted dying and one which affects way, way more people and is breaking the NHS. Why doesn't it get any attention? I'm sure I'd be considered brutal but I think a DNR should be opt out, with a consultation explaining what CPR actually entails and its brutality, after a certain age.

I agree totally about an opt out DNACPR. It would help if people didn't equate DNACPR with end of life care - people being shocked and horrified that their 88 year old dad has a DNACPR order and thinking it means they won't treat him at all, whereas the guy probably has another 15 hospital admissions and a ton of medication to go. If people understood that if CPR is an issue you're actually already dead it might help.

PermanentTemporary

I had these conversations with student nurse DD at the weekend, such as about DNR only being about resuscitation, which is extreme circumstances rather than a general do not treat. She says there is the worry about medical negligence, and staff feel conscious about providing evidence that treating is doing more harm than not, but seems they are only looking at the short term harm e.g. reactions to particular drugs rather than the longer term harm of someone carrying on living in intolerable circumstances when they don't want to be alive. Living wills were a big thing when I was working around HIV many years ago, but I don't think that they're particularly enforceable, I've no idea whether there's any discussion of them now.

I'd really recommend the BMA short book Withholding and Withdrawing Treatment which I read in my early months as a healthcare professional. I'm not a doctor but it really helped me understand the law and issues in decision making in this area.

I've written an Advanced Refusal of Treatment which is in my GP notes, but I've made a couple of attempts to get it into my notes at the local acute hospital with no success yet. To me thats an issue, as I could be in the emergency department being prepped for surgery or in ICU with a breathing tube down my throat before the GP even finds out I'm there.

I didn't know that Phil Spencer's parents were both ill like that. And was one of them actually driving?

Oh I just Googled it -the inquest was this week. Says the mother, who had Parkinson's. was driving and 'momentarily steered to the offside' of the road where the bridge was. Her condition was worsening and they had a ft carer who was the back seat passenger, who survived. Really sounds as if the carer might have been better driving.

Ah I didn't realise Phil's parents had Alzheimer's and PD. That's what my parents had, mum had Alzheimer's while dad had Parkinson's. It would've been far more preferable if they'd had that sort of ending off a bridge. As terrible as that sounds. Obviously only saying that in hindsight and compared to the slow hideous declines they both had over years and years.