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.

Hi Op. I’m so sorry your going through this. I fully understand and think your brave for saying how you feel.
I feel I’m just turning the corner into this and I’m scared. Everything you say resonates with me, only to a lesser degree. I’m just waiting on the Dr yet again. If only other people could see what I see, but like you say she seems to rally for anyone else, so annoying.
The worst is waiting for the next crisis, we’ve had ten hospital admissions over the last two years, three horrendous life changing falls. Like you, the Dr couldn’t believe she’s still here, said he didn’t want to see her in hospital again and gave her oramorph to use freely at home. She wants to die too, very depressed lonely and scared.
I’m in my late 60s tired and fed up, trying not to bother anyone with it all. My heart goes out to anyone in this god dam awful situation.
Hope peace comes soon for you both.

Thank you for this thread. It’s been so cathartic to read everyones experiences. The trauma of dealing with these horrors is only exacerbated if we can’t speak honestly.

With advanced Alzheimer’s my dad was fast tracked onto CHC and given 3-6 months. ‘Prepare yourselves’ they said.
Well he lasted for another three miserable years; bed bound, doubly incontinent, spoon fed a soft diet, agitated, afraid and unable to communicate his needs.
About every six weeks we were told ‘he’s nearing the end now!’ I was on permanent red alert, could never relax, heart racing every time the care home number flashed up.

The end when it finally came last October, was horrific. He’d stopped eating, weighed under six stone, was emaciated, plagued with sores that wouldn’t heal for weeks, delirious and agitated.
I felt only relief when he died. Then numb and mentally scarred.

I’m setting off up the mountain again, this time carrying my 92 year old mother. Her family all lived to their late nineties so could be a long climb.

Twelve years since my dad was first diagnosed. Years of me living a half life, no clear end in sight, witnessing an undignified, miserable decline cruelly drawn out to the bitter end by unnecessary medical intervention.

There has to be a better way.

I totally understand and sympathise with you too, OP.

My dad is 90. He still lives alone and is largely independent but only to the extent where he can manage to get out of bed and get dressed each morning and prepare himself a cup of tea and a ready meal. Everything else has to be done by me.

I work full time, I have a family but every day, no matter what else might be going on, I have to go to dad's and spend at least an hour with him, making sure that he has some company (he's housebound), washing up and making sure his laundry is done. Once a week I do his shop at Asda but then he invariably needs other things throughout the week, such as stuff from the chemist, jigsaw puzzles from The Works, ready meals from M&S (he doesn't like the ones from Asda), other stuff. I also ring him every day and spend at least half an hour at a time just listen to him really talk about himself and his various ailments. He thinks that it is okay to ring me at 10pm on a Sunday night because he has dropped his bottle of milk on the floor and has none for his bedtime drink. Can't use the powdered Marvel that I bought him for emergencies, and I'll bring him a bottle before I go to work in the morning... no - he needs it tonight. Now, please.

Don't get me wrong, I love my dad. But... I have to be honest here, if he wasn't around then my life would be some much easier, richer and I'd have more time to spend with my family. I have a little grandson that I would like to spend more time with but it's just not possible. Most evenings, after being up since 5:30 am and doing a full days work, going to see dad etc., I roll home at about half seven, eat and fall asleep on the sofa. The sad part of this and what sometimes makes me feel really guilty thinking it, but even though he's 90 - he's faring really well for his age and it wouldn't surprise me if he had years in front of him. The thought of doing this, or even more for the next god knows how many years makes me actually terrified. He's already told me that the help that I give him is "expected" and that the "young should look after the old" but I've already told him that when the day comes that he needs more round the clock help, I will make sure that it is provided, but it won't be me doing it.

Anyone who hasn't lived in this situation - and mine is nowhere near as bad as the OP's - it is a never ending cycle of unrelenting and often unreasonable demand. It's utterly soul destroying. My thoughts and heartfelt sympathies are with you, OP.

My DM - who cared for 3 of my grandparents, both before and after them being admitted to homes, visiting daily - stated many years ago that we were to put her into a home and visit her only once she was ‘fed and decent and wearing a clean nightie’. Equally, I have known forever that the mental and physical load will be on me, not my siblings.

I feel for everyone going through this.
My DH died 6 years ago and my MIL still lives alone at 95 but not sure for how long more. She is adamant she is not going into a home. Her other son lives an hours plane journey away and only visits a few times a year.
I am convinced that something will happen , like a fall or something else. She will end up in hospital, released and then NHS/ Social Services will be unable to provide sufficient care and expect me to provide a level of it. She does have some carers coming in but I think more support is going to be needed.
I've got my life back on track after my DH died and I'm just not prepared to commit to it and determined not to start offering care because who knows where it will end. Reading these stores makes me more determined, despite how hard that makes me sound.

It is so distressing. I’m witnessing a relative deteriorate into very low quality of life. Dementia is a very cruel disease. I naively thought that dementia patients didn’t realise what was going on so were a bit oblivious (seemed to be the case for one grandparent). Current relative is so very distressed and weak- constantly falling and breaking bones, in so much pain etc. The kindest thing would be a quick dose of flu but of course we vaccine to stop infections and keep people alive in a terrible state…. I find it so upsetting and really hope we can have a sensible conversation about euthanasia as who on earth would want that existence?

@Poochypaws Thank you for being so honest about the reality of this.

The relentlessness of caring can mean you go from loving someone and hoping they will live to hating them and hoping they will die.

I had a colleague who cared for her mother, who was a very unpleasant character and quite vile to her daughter for many many years. In the end my colleague died before her mother. It wasn't directly caused by the constant double shift working of a high demand job and then caring duties but it certainly didn't help her look after herself.

Look after yourself first. Do not allow yourself to be made sick by this.

I am also a carer for a difficult elderly mother and my heart goes out to @PPoochypaws and everyone else here.

My question is, what can we do to protect ourselves and stop our own lives being ruined? I keep having thoughts of running away and escaping to somewhere far away. How wrong is this? Could it work or would the guilt consume me?

@Willowcat77 do you have any siblings? I just dropped the rope for a fortnight after my dad passed and made mine step the fuck up. Apparently ‘I was selfish and it made them ill having to deal with everything and work at the same time’. No shit Sherlock.

Things that helped (but I appreciate they are not free)
-A weekly cleaner who also unpacked the weekly Ocado
-Carers daily so she was fed
-Gardener fortnightly.
-Pet walker so dog was taken care of
-I night 2 x 4 Kallax units and labelled everything the carers might need. Everything went into and from those units.
-Visiting dropped from every day down to gradually once a week.
-Telling anyone who rang about medical appointments etc to call my sibling and sort it with them.

I felt no guilt. My mother was a huge narcissist and reaped what she had sown. My DD and my DH needed someone present, happy and healthy. Put yourself and your family first. Big hugs to you.

Willowcat77 That’s my dream too, it’s something I think about regularly. But I have a DH and young DGC so couldn’t do it. I do escape 3 or 4 times a year on holiday. Mum has carers 4 times a day so she copes okay.
Last time I was away the carers rang me about something very trivial, I blocked them for the rest of my holiday. I’m an only one, it’s very difficult.

I completely understand where you’re coming from and am so sorry you’re in this position.

My dad was put on end of life pathway at the beginning of the pandemic and passed away in May 21. I gave up my job to care for him and support my —very challenging— mum and am only just getting my life back on track now after being diagnosed with PTSD, GAD and panic disorder as a result of the the experience.

But…my mum is 84, largely independent but with a raft of moderate health issues that could degenerate at any moment. Our relationship is much more complex than the one I had with my dad and I live with an underlying sense of fear that I will have to go through the same or worse with her at some point.

I actually don’t think I could survive a second round so I totally understand it when you say it’s ‘you or them’ and you fear the stress will finish you off first.

Such an interesting thread. I always thought it was just me. So many of us in similar situations. I think dragging proles lives out when they have no meaningful actual life other than not being dead, is terribly cruel. I can't believe anyone would want that for themselves.

I'm at the beginning of this journey with my MIL. She was widowed last year and lives alone. She has just been diagnosed with Alzheimers, although it's very mild at the moment.
My DH has a sister who lives closer but it has been decreed that we spend every other weekend at her house. I know I have it easy compared with other people, but I hate it. She's a very fit and healthy woman generally and I can see this being my life for the next 10-20 years, while her condition deteriorates.

Do you think she actually needs that amount of support yet? If you don’t have to yet, don’t do it. It will only get (much) worse.

Another one

https://www.dailymail.co.uk/news/article-12393501/Vancouver-hospital-offered-medical-assistance-dying-suicidal-37-year-old-woman-told-long-psychiatrist.html

Thank you! I have a brother who does next to nothing because he lives further away than me and has an 'important' job. So he does absolutely fuck all, despite being the Golden Child. I dream of announcing to him that I'm emigrating and now she is his responsibility. I wish I could just disappear. But throughout my life I have felt guilty about my Mum and now she really needs me so it feels impossible to escape...

@Willowcat77 let the golden Child do it. Seriously. It’s quite liberating. Change all of the NOK details on all medical records to your brother. Direct all medical calls to him. Redirect them when inevitably they call you back. Turn your phone off during the night. If you do not reclaim your life now, you will be put upon. Do not feel guilty. Your mother does not, I can assure you.

It (almost) always the women who are expected to do this stuff isn't it? Like every other domestic chore. Men are magically exempt someone..
When myum was dying and in hospital the wards were full of old women, because women tend to live longer...and the visitors were all women, because daughters.

I know this is awful but whenever I'm in the SE there seems to be train holdups because someone has thrown themselves under a train. Horrible.

I suppose it was an expectation in earlier generations - I knew several unmarried women, now long dead, who didn't marry because they cared for their parents. It was like their expected role? But there were also other dynamics, like a brother would look out for them too?

But so often now it still defaults to the woman. My brother actually works in the "caring" professions and is trained to do this stuff, which I am not. But it's still me that gets all the moaning, groaning, hassle and expectation of doing things, whereas she doesn't like to bother him because he has a job and a family . And obviously a man's job and family are far more important than a woman's!

God yes. I hear you and the exhaustion and frustration that is destroying you. Am slightly behind you on this road but already on my knees somedays( still working full time)

MintyCedric "I actually don’t think I could survive a second round so I totally understand it when you say it’s ‘you or them’ and you fear the stress will finish you off first."

yes, totally. I had reached a stage of apathy but now I don't want to die at 47!

I was asking about you on the other thread, hope you're okay.

@tobyj Sorry to hear you can relate. Honestly the constant negativity is. so. wearing. Where does it come from? Is there some biological reason for it? I feel frustrated sometimes, like objectively her position could be so much worse. She has her health, own home, no money problems, so much more than many people her age. When I was younger she was quite an emotionally supportive parent, obviously not perfect, but nowadays she doesn't even ask how I am. Its all one way. Its like dealing with an irrational preteen sometimes, constantly trying to stay upbeat and jolly them along. Where does it come from?

As you said yourself the other day, your Mum’s quality of life is such that she cannot be happy anywhere. That is the brutal truth, it’s not your fault and you can’t change it.

The truthful reality, my situation too. Massive hugs and strength for everyone on this thread xxx

I completely understand what you're saying, OP. My mum has dementia and has absolutely no quality of life. She's lost all of her faculties; is in continent; has no clue who she is or where she is and spends her days in a constant state of anxiety where she is desperately walking around trying to find something (often getting very very upset/angry/physical). She can barely eat, can't talk and cannot read or do any of her hobbies that used to give her pleasure.

I would love for her to die and finally be at peace but due to her heart medication keeping her alive, she just keeps going.

Why does this society allow that to happen? It's just cruel.

Then my Dad is living a half life after scraping through heart attacks/bypasses/sepsis and cannot walk or function properly on his own. He's wheelchair bound, has very little quality of life and takes so many tablets to keep him alive. It's no life for him at all yet due to medical advances, he's still alive.

We wouldn't allow our own pets to live like this yet humans aren't allowed to have dignity towards the end.

It's disgusting.