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 hear you and totally agree op. We can be kinder to our pets than our old people in this country - we are expected to keep them hanging on .. and on.. regardless of their quality of life.

Yes. I feel for you. I was so relieved when my mum died. For her and for everyone else too.

It's a very difficult subject where emotions always run high. And even more so when you're a carer who's exhausted.

Having said that, I don't particularly agree with you OP.

I've posted on MN before about my situation - can't remember what username I posted under. I looked after my DF in his final years - I was his sole carer. I was also a single mum (biological dad disappeared over the horizon never to be seen again) to twins who had been born prematurely. As it turns out they are both autistic with high needs which is why they were so difficult as babies. I had a mortgage to pay and due to the care needs of my babies and my dad, I couldn't go back to my (well-paid) job. Instead I had to set up a business to try and scrape together enough money to pay the mortgage, working at any moment day or night that I could, in between doing everything for dad and my children. On my own.

My dad didn't have mental capacity, and he also needed physical assistance. I did everything for him. I think when I last counted, he was under the care of 8 different consultants at the hospital, plus we had the other usual rounds of nurses, GP (for anything that fell down the gaps because god forbid anyone treats a person holistically!). It was utterly relentless. And then he got cancer, just on top of the neurodegenerative disease that he had.

In total, I looked after my dad for around five years. It was the hardest time of my life and looking back, I don't know how I managed, especially with two tiny babies to look after single-handedly, and a new business. I say all this just to underline the fact that I do know how hard it is, and how exhausting.

Oh, and just for a little extra complication - my DM has cerebral palsy. Her and my dad divorced when I was a child but I've always had to support my DM with her care needs too, which have obviously increased as she's gotten older.

Anyway.

The one thing that we all have the right to is to decide how long we want to try and stick around for. If your relative wants to endure the physical hardship and fight on, that's absolutely their right. No one should be made to feel bad because they're "hanging on". It's not fair to view their life solely in terms of inconvenience to you.

Of course, you don't need to stick around. You're perfectly entitled to say I can't do this, and to step back. There's no shame in saying you can't cope. If that means a care home is the only option, then that's what it will have to be.

Don't let your own health suffer irreparably. If you find it too stressful then pull back. We all make our own decisions in life - you just need to make decisions that you feel comfortable with, and to be at peace with whatever the consequences are. There's no right or wrong answer here.

Euthanasia is an interesting concept but it's fraught with complications and open to abuse.

I don't view extending someone's life as a waste, if that's what they want. We don't know what's beyond this life, maybe nothing. And if that's the case then it's perfectly understandable not to want your light to be extinguished just because things are tough. If you're happy to go, then great. But if someone wants to fight on, I think it's pretty unkind to suggest that their life is a "waste of resources".

I'm about to move into a new house with an annexe for my DM to provide her with more care as she's struggling to even move around her own house unaided now. I am going to do it again, and I do so willingly. As long as DM wants to fight the fight, I will support her to do so. Having been down this road before, I'm well aware of what lies ahead and personally, your post just doesn't resonate with me at all.

I hope your relative finds a care home that she's happy in. I hope she's able to find some comfort in her final days, however long that may be. And I hope you're able to take a step back, breathe and take some time for yourself.

Thank you and I wish you all the best.

When I get to that point I might move back to Canada where my family are allowed to help me along. Or I might be a stubborn so and so like my mom and hang around forever. Which is one of the reasons I live so far away and see her only once a year.

I agree totally with you OP.
My Mother had severe dementia, was blind and couldn’t walk more than a couple of steps for a few years before she finally died of Covid in hospital two years ago.
I made the mistake of saying to a friend how I felt mainly relief that the end had finally come for her, she was now at peace and our lives could continue without the stress and trauma of the previous years.
Well I was accused of being the most awful, uncaring daughter imaginable, she just couldn’t understand that my Mother hadn’t been happy for many, many years and the hospital costs must have run into tens of thousands which to be honest was wasted money, better spent elsewhere.
I know I wouldn’t have wanted to live her last years as she did, it broke our hearts to see her. There has to be a better way when there is no quality of life left and there is no chance of it returning.

Carers are just seen as machines.

https://www.mirror.co.uk/news/uk-news/desperate-mum-forced-stay-awake-30647987

Thank you for posting this - it’s a discussion we need to have

I signed the Prue Leith Dignity in dying campaign because I think this is the next big change we need in society

Some people say there are too many religious people in the House if Lords who block and chance to change the law.

In the past even Kings have been helped on their way to have a dignified death.

Clearly we need safeguards but all of us should be able to have a dignified exit should we want to have it.

We wouldn’t let a pet suffer in this way

But isn't the cost of someone being in a care home in the region of £80,000 p.a. now? Which the person has to pay themselves if they have assets over about £30,000? So this is a main reason people do not go into care?? Nothing left for inheritance.

I just saw a BBC report on the mother and son in that mirror article. It really showed the relentlessness of caring for a relative.

There is a shortage of paid carers so the ones who are have to work very hard trying to care adequately in the time allotted for each visit as their schedules are packed solid. Nurses and doctors too seem to be overworked and understaffed. Their shifts are hectic but at the end of their shift they get to go home to their families and friends and relax till their next shift.

A carer who is a relative is never off duty, always on call, looked to to take on more every time there is an issue or a medical appointment to attend. It's often a 24/7 shift and that's before you factor in the emotional side. Watching a loved one's personality disappear over time is hard. Trying to persuade them to take the best course of action eg practice mobility or stay off a sore leg if needed when the relative thinks they know best. Being verbally or physically abused by your grumpy / abusive / demented relative happens too.

People saying you should treasure every moment with them and give them every medical intervention possible till they die 'naturally' must never have experienced this type of caring.

They left me caring for dh 24/7 when he was dying of cancer. He was scared and wouldn’t let me sleep.

The last paramedic to take him in safeguarded me saying I was at risk of abuse but dh died that week.

I'm baffled why we don't have more hospice provision. So much more important than so e of the things we do. No profit, I guess.

Most hospices are charities and get little NHS funding. About 2/3 of their money comes from fundraising. They are struggling as the cost of living crisis bites and donations fall.

www.independent.co.uk/news/uk/nhs-government-hospice-strathcarron-hospice-east-of-england-b2312153.html

I admire your optimism in social services but it doesn’t work like that.

I reached breaking point many times, and begged for help from GP, Social services, Social Presciber.
In the very end the social Presciber helped with getting CHC funding for his last weeks. And they still haven’t reimbursed me for that many months later.

@Poochypaws - I hear you. Been there, done that and got the t-shirt! I was on my knees and totally cracking up by the time my 94 year old Mother died. yes, I was sad, but my very first thought when I was told was one of pure, unadulterated relief - which I then felt very guilty for, for a while.

One of the hardest things to do was to keep saying 'No' to Social Services and also to the Carers Agency when they wanted me to do more than I really could either physically or mentally. I did a huge amount of stuff for My Mother, and it was causing me all sorts of health problems with the stress and angst.

She too should have been in a home latterly and refused to go, which added to the stress - and extra work I had to do. I didn't want her to die - but I did hope she would go into a home, where she would have been well looked after and cared for and the endless worry over phone calls at all times of the day and night when she had fallen and was taken into hospital would diminish.

My brother did stop the antibiotics for her pneumonia eventually ( after discussion with the rest of the family) as he had welfare power of attorney and she was allowed to slip away after that. She wasn't going to be allowed to go home if she had survived and we knew she was vehemently opposed to going into a home.

Sending lots of hugs. It's a horrible situation to be in

Hi OP, I think this post will resonate with many many people. My grandad lived for 8 long horrible years, having been given an initial timeframe of 6-8 weeks! Eventually he was in the foetal position, couldn't speak or communicate in any way. My kids were actually quite frightened by the sight of him. My grandad was a proud and hard working man and I KNOW he wouldn't have wanted to carry on existing like that - because that's all it was - an existence. My Nan cared for him and it took away the end years of her life too. It was all very sad, but in the end I was relieved when he went. So much so that the grieving process wasn't as bad as I imagined, having never lost anyone before.

Well you clearly haven't got to the point where you are quite literally going under, with your own health - both physical and mental - especially if you are dealing with it all on your own. You sound very judgemental and lacking in empathy for others - just because you haven't yet reached the same point as the OP and many of us on here

And putting someone in a home is not as easy as it sounds. For one thing it costs a lot of money, so SS will do all they can to allow the person to stay in their own home, if that is what they want ( and still have capacity to make their own decisions) . My Mother could have been in a home with care, for more than 2 years before she died but she absolutely wouldn't consider it. She used to say she was sorry I had to look after her and she could see how badly my health was suffering - but if she had been a less selfish person, she would have agreed to go into a home IMO. And she was selfish and self-centred all her life, not just when she got very old

But what happened to the Hippocratic oath?
I truly think that this needs to be revisited by those involved in this type of medical care.

In a post-Shipman world, doctors are shit scared of doing anything that could be considered hastening a patient’s death - either by via malpractice or murder.

Also, the concept of “do no harm” is up for debate when it comes to care of the elderly. Some would define it as using heroic measures to keep a person alive. Others would define it as not hooking a 90 year old up to antibiotics and machines, because “only God” can decide when the time is right (yes, I get the irony).

You sound burnt out op.
If I could, I would run you a bath, sign you off work and put you on ‘bed rest’ for a week. Make soup and let you recharge your batteries. You have done all you can. Let someone else take over for a bit okay. 💐

@alleillveoka 💐

You have completely missed the point of the post. Very predictable though as I knew some 'bleep bleep' would pop up and say something so bloody laughable.

Are you saying I should WANT her to stay alive and suffer more? She has said many times she wants to be with my dad (who is dead). She sobs constantly because she is depressed living like this. She can't chew food as she is too tired and even the mushy stuff she can only take a few bites. She is frightened most of the time even though she lives in a safe area in a suitable house. Everything that made her happy has been taken from her. She lives in constant pain. She has lost her dignity which she never wanted. She has people wiping her bum and washing her and feels utterly humiliated. She says over and over what a burden she is. She threatens suicide constantly (even though she is on antidepressants).

I don't believe for one second you have looked after an elderly sick person for any length of time. You clearly have no experience of it or very limited experience of it.

And fuck me - I won't be that age one day if my life goes the way hers has. I would refuse treatment except pallative care to make me comfy then go off on a dignified end at whatever age that may be.

It’s is exhausting and heartbreaking to endure the relentless pain of watching loved ones suffering for years.

You poor love op. You have reached the end of your tether. Please take care of yourself

My FIL riddled with dementia and cancer was resuscitated three times, had double pneumonia and was broken. It was inhumane to keep him going.
He was saved to spend another three years in a hellhole losing his mind and desperate for the suffering to stop.

@truthhurts23 have you ever had to deal with SS? We reached breaking point last Christmas caring for DF, my DM said she would rather be dead then carry on struggling to care for someone who was physically assaulting her. We called the emergency number were told we would hear back in 48 hours we heard from them 3 weeks later! In that 3 weeks we were hit, kicked, threatened, assaulted with a walking stick, i had a lighter held to my face. We were told we could not leave DM alone with DF it wasn't safe, we as family all have kids and jobs and we hung on hoping help would come. We lived at my parents house in shifts, all waiting for the next assault or abuse DF felt like dishing out. We begged for help, 4 weeks after my DM had a carers breakdown DF had to be sectioned. We have waited 8 months to find a home that would take DF from the dementia unit, because there were no places for him to go, what places there were wouldn't take him.

We did our best as have all these other people on this thread, but do I wish ut to be over for him and us? Yes I do, watching my smart, clever and shy DF unable to string a sentence together, pissing and shitting himself, dribbling, confused and scared with no dignity no matter how hard everyone tries to give him, then yes I do, he deserved better and so do we. This is not how I want to remember him and I know its not how he wanted to end his life.

Did he have a DNR? One friend's mum was in a care home with dementia and minimal mobility. They overrode the DNR. It was so cruel we couldn't believe it happened. I'm not sure she ever recovered from the pain of broken ribs, like a little bird she was.