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.

@ChatBFP my issue with Canada is that they started out with killing people who are terminally ill. It has now progressed to the point where very soon an 18 year old with mental health issues will be permitted to be euthanised, it's barbaric.

Once you give people (doctors) the power to kill human beings, you have set the snowball rolling. There is no knowing where it will end. People could be convinced into being killed so as not to burden the NHS/their families, even though they might not want to die.

The OP's situation is awful but I don't believe that giving human beings the power to choose when to end someone else's life is the answer. If her parent was in full time care then I doubt she would feel the same about having them killed.

I hear you op, I really do. We went through it all for 4 years with Mum living with us, and I still have flashbacks to a hideous time. Euthanasia might be well and good if someone at the end of their life has had enough. As I am now, I can’t envisage tolerating mere existence, but who knows how I’ll feel when I get there? My Mum didn’t want to die. At 95 and with no mobility and failing health she just wanted to get better… I was relieved for her and me when she went, if the truth be told, but I couldn’t have taken a decision to withhold care. It was her life and she was entitled to every last second of it, if that’s what she wanted. It is bloody hard, though.

Can you link to this please? I'd like to check the numbers to see how many untimely coercive deaths there has been versus how many 'acceptable' (for want if a better word) deaths.

So much sympathy OP. I watched my mother do this - care for my increasingly unwell and later on housebound gran for 15 years. The last 5 years my gran was in agony frequently. Ultimately climbing the walls on morphine and hallucinating. Still at home, in and out of hospital. My mum gave up her life, her career. I grew up a lot faster. Gran got increasingly unpleasant as the years went on. And poor nurses and social coming in to change her bandages on her ulcers put up with a lot of abuse but my mum got the worst of it.

At the end when I was early 20s I watched the NHS hospital force feeding my gran, trying to prolong her life. She refused medications, they had a device to force it down her throat. It was utterly barbaric and I thought “this is the wrongest way to help”.

my mum was nevertheless devastated when my gran died - she never regretted caring for her. But I silently cheered as my mum still have 15 good years before she died too.

My mum always said, “put me in a home if I’m sick or doolally. Leave me there to die quickly. Don’t visit. Don’t do that with your life. I want you to be able to live, and caring for someone isn’t living.”

The current system is broken. End of.

probably never been in the situation - the stress is relentless for these people

A place in a care home would be found soon enough if you clearly stated, in writing, with copies to all involved, that you are withdrawing all care from (…. Date of your choice).

With my relative we are waiting on an assessment to see if they have lost capacity or not. To people that only spend a small amount of time with them they are still able to (sometimes) sound ok. To people who see the amount of insane things they are doing (hoarding incontinence products everywhere, not recognising people, getting lost if they go out alone in village they have lived for 20 years) it is clear their capacity is at best hanging on with thread. They can no longer answer the phone, work their tv or microwave a dinner.

At this stage only she can decide what to do. However she clearly isn't making good decisions. The waiting list for the assessment seems to be long. She has been assessed several times by a community pychiatric nurse due to depression, telling lies, threatening suicide etc, telling everyone she wanted to be with my dad.

However she also continues to demand fed and watered and taken to appointments.

It's a proper shitshow isn't it 😢

My parent went into rapid decline over about 6 months before finally slipping away on end-of-life meds. That was bad enough. I'm still a bit traumatised by it and dreading old age.

I bow in awe to those on this thread describing horrific situations that have gone on for YEARS.

Getting the right advice at the right time can make all the difference, but we're sort of at the mercy of how kind/helpful the (hospital, social care etc) staff feel like being in terms of advising on next steps. I suppose with budgets stretched, they're keen to let the family shoulder the burden for as long as possible.

@Brumbies what an unhelpful reply. The op has broken herself trying to care. She did everything - and she has been pushed beyond the limit of endurance. The stress, the guilt, the endlessness of it.

I am glad I’m not YOUR relative if you'd expect a loved one to break themselves caring from you. You sound selfish.

My mother always says when her brother died (horribly young in his thirties, from a terminal illness) that at the very the end he was helped along by the amount of morphine he was given. I'm no medic but apparently it eventually causes organ shut down (or speeds this up when it's in progress) in someone who is near the end anyway.

This was in the early 90s.

OP I understand even though I've never been in your shoes. I've just watched my mother do a six week bedside vigil for her mother until the end. This was after ten years of the 'it's her time' talks, and she was in a care home for eight of those years so needing nowhere near the level of hands on care by family that you do. The place in the care home was supposed to be around six weeks because they didn't expect her to live longer than that. Eight bloody years she stayed there.

It was draining over time, and those last six weeks when it was clear the time was actually here was truly awful. She had a DNR, and had been off of all the life extending medication for ages. Painkillers only. She was so tiny and frail she was being given doses of infant calpol.

Covid didn't even get her! In the end a bout of pneumonia was her ending.

She had zero quality of life over those last eight years (she was well cared for but she was just existing) and I wish to god that what had put her in that care home had just killed her there and then many times. My fierce, bolshy, funny and independent grandmother was left a shell of a human, by living for years too long and as her family we could do nothing but sit and watch her slowly degrade.

It's inhumane. I'm only in my thirties myself and there is no way I'm going through that. I refuse to put that burden on my (currently small) children either. No thank you!

@Meeting

I don't disagree that there need to be safeguards.

I guess I am coming from it from the point of view of someone who has great genes on one side and shit ones on another. Dementia for me is 50:50.

With advances in medicine, I know that I could have 10 years where I decline from forgetful and unable to live at home (or realistically any child's home), to sad frightened child, then doubly incontinent angry woman, then zombie unable to recognise anyone or appreciate life, to starving to death - at each stage, having nurses acknowledge that my quality of life was crap and I got absolutely nothing out of life but saying that there was nothing that could be done about it because they were duty bound to keep me alive. And having my kids leave in tears after every visit to me, hoping that I might die at some point soon so that I was no longer suffering.

If I know this is likely for me, why can't I freely chose to opt out of this?

Oh yes let me just pull up the list of people who are openly willing to admit that they coerced their loved ones into being killed.

You must think that won't happen? Do you have no knowledge at all of how shit many humans are and what some of them will do for personal gain?

waiting to be assessed now for capacity. For those of us involved it is clear she does not have capacity but because she has the odd good hour here and there she sometime sounds like she does. Problem is she often falls asleep on people too. We had the community pychiatric nurse out not so long ago and my mum couldn't stay awake so the nurse couldn't assess her. I just hope that does not happen when she gets her capacity assessment.

I can understand how you feel even though I have not been in your position. I watched a friend dealing with their mother's altizmers before she needed to go into a home. This lady lived for years after this not knowing her own name, her child's name or where she was.
Another lady I knew mother got a specific health diagnosis. Her family were told their mother would die within 5 year's because of this. The following few years after this were horrible for the mother and the whole family in different ways. It had a major impact on several people.

One of my friends mother's made it very clear to her adult daughter that she was totally against euthanasia saying it would be used to get rid of old people. As my friend said in her mother's case it would be to get at my money also.

My friend meanwhile was thinking the opposite after seeing what several elderly people she knew went through. These people were physically very sick or had life limiting conditions and had no chance of getting better. Or they had altizmers for years.
To me surly that dying at a day and time of your choice would be a kinder experience for all the people conserned in these circumstances.

@meeting

Don't worry I found this.

www150.statcan.gc.ca/n1/daily-quotidien/230213/dq230213c-eng.htm#

Interesting reading and it won't stop me. My wishes are already recorded.

I get you OP. Sending love and prayers to you. You have gone above and beyond xx

I'm sorry you are going through this OP. I've been there too and it ruined my mental health for years. I'm well now, but it nearly broke me completely.

DM had a DNR and the hospice 'forgot' and resuscitated her at one point. Fortunately for all of us it was only a couple of weeks after that to the end.

DB and I got amazing support from the local Maggie's centre, if anyone reading this needs cancer support. It isn't only available for the patient.

I absolutely understand OP. 100 per cent. My parent eventually died in January this year. I had nearly two decades of it with both parents sequentially. The relief when it was over was huge.

You're right about getting desensitised. I hadn't thought of it like that before but you're spot on.

I got a lot of support from the cockroach cafe thread in elderly parents. It kept me sane. You'll get a lot of empathy for your situation there, I promise .

Have a very unmumsnetty hug from me @Poochypaws . I hear you loud and clear.

My dad died a few months ago after several years becoming increasingly unwell with dementia. What killed him eventually wasn't the dementia but another illness, and to be honest him dying after six weeks in hospital was a blessed relief. Relief from being on edge every time the phone rang. Relief for my poor mother who was his carer 24/7 and unable to have even 2 minutes to herself. Relief from the total guilt trip put onto the family from social services - but he's your DAD!! - when we said that actually, we weren't prepared to put our entire lives on hold for an indeterminate period to care for him much in the same way you have to care for a toddler. But a big, strong, cantankerous toddler who can't just be put in their cot.

Yes we were sad at his funeral. But there was a massive sense of relief too.

Take care of yourself OP.

You are doing the right thing here you have to protect yourself within all this too - you are entitled to feel totally exhausted and that you have had enough and the system needs to hear that and respond. Both my parents died quickly Dad at 3 months and Mum at 10 days post diagnosis. My father in law is not palliative and does not have a terminal diagnosis but he is in his 90’s was falling everyday, wasn’t eating properly, couldn’t get to the loo in time, couldn’t get dressed with help etc, etc.. my husband and his sisters ended up living with him splitting the days and nights up according to work flexibility- we didn’t really see my husband for months. The carer visits were at the max we could have 4 x a day for 30
mins but he would still go to the loo unattended because as he said ‘I can’t shit to a timescale every day!’

My FiL then came to his own conclusion and he is in a wonderful home where is he happy, supported and can socialise when he wants to - he has a visit every day and these are much nicer for us all as we can do and visit and chat and not have to do anything practical.

Thank you. I appreciate you posting and being so kind too. Yes I have realised that nobody is looking out for me and about 3 weeks ago I just kind of 'broke' and came to the conclusion I'd rather be dead or in jail than continue.

I know that sounds insane but I honestly felt like I was being hounded to death and one of us was going to have to die. If it wasn't her it would have to be me.

I have so much sympathy now for anyone in a carer role that has no ending ie mentally impaired children who will never be fully functioning. What a worry.

To those thankfully few negative posters: the op probably doesn't maliciously wish for the relative to die, that's just desperation screaming from this post. She just doesn't want to be in this position anymore. She didn't sign up for this, as this isn't a one person job. You basically live another persons life, if they need everything done for them. And they usually have a lot more admin and appointments than the average person, due to their ill health. Plus the upkeep of their house/apartment. And to take that on beside your job and family life - that comes at a very high price. With near zero free time you tend to postpone dealing with your health issues as the ill relative usually has something more urgent to deal with. In the end you're so tired and exhausted you just cannot deal with your emergencies. At least that's how it is with me. To continuously operate on last drops of energy, you struggle to keep your head above the water trying not to drawn.
And you don't even get quality time with your relative as there's no time. Plus a a sick person is not always nice or loving towards you. So it's just drudgery with no benefits for either.
If that helps OP, I detached emotionally a little bit and put some minor boundaries regarding how many non essential phone calls a day I would take from my relative. Therapy would also be beneficial, if there was time.. Those lost years and a life half lived takes its toll on your mental health.

I have ZERO compassion for anybody that is wanting for someone else to die, and referring to elderly people as a burden on society, that is horrible

if she is reaching breaking point she would have phoned social services by now and put them in a care home, instead of letting it go on for years
waiting for somebody to die is a disgusting thing to say, OP and everybody else on this thread who thinks that is normal needs to have an evaluation because something is not right up stairs.

I have to say in your situation I wouldn't entertain it under any circumstances. Be prepared for lots of people to try and pressurise you into it.

You need to tell SS you are in crisis and can no longer cope. Please join the Mobilise FB group for unpaid carers. This scenario is becoming more common and there is lots of advice on what you need to do to survive. Hugs.