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.

[Oneweektogo2023]

I pray Euthanasia becomes legal in the next few years I would like to exit in my own terms.

[studentgrant]

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 fing that a very sinister remark

[studentgrant]

That said, I'm sorry for your stress.

[LadyMacbethssweetArabianhand]

I hear you. My mum is in hospital being assessed. She is doubly incontinent, sleeps most of the time and has significant cognitive impairment and delirium. She can barely have a conversation anymore. She has no quality of life. I am refusing to offer any care.

[RatherBeRiding]

I hear you OP - been there. It is utterly draining and relentless - well done for taking a stand to force a care home admission. Hope it works out - for you both. The person you are caring for would be much better off with professional carers who are not drained and exhausted.

[Fraaahnces]

Very familiar with this. My mum was given six weeks max. We had a very fraught relationship and I lived on the other side of the world. I dropped everything to nurse her, leaving my little kids behind with my DH. She took seven years to finally die and many false alarms. (And much manipulation and abuse.) The final stretch was utterly grueling. (But oddly it has led me to study nursing with a palliative care pathway. Ironic, isn’t it?)

[Terloz]

I hear you. I get you. I am so sorry you are going through this.

[Poochypaws]

@studentgrant

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 fing that a very sinister remark

sinister? Why?

My opinion It's because no prime minister or whoever that needs to authorise it has the balls to say this situation can't go on.

My beloved pet who I love more than anything in the whole world who has brought me nothing but joy will one day be old and sick.

When that happens I will need to find the strength to have him put to sleep. Not for my sake. I will be utterly heartbroken. For his sake so he does not suffer.

This is what we need for humans. (and yes of course we need safeguards etc)

[Vegemiteandhoneyontoast]

I get you, OP. My dad has been in and out of hospital for years and every time the family flies into a panic wondering if this is it, but then after a few days or weeks, he's home again. He can no longer walk and has dementia, so forgets he can't walk any more. My mother has problems with her joints and struggles, but insists on doing all his care. It can't go on much longer, but it does.

[Mrbay]

Completely agree, I hope that my death is quick and instant whilst I still have decent quality of life.
Watching my own dad died was horrible, upsetting and undignified. Towards the end he was only awake for 30 mins to an hour a day, only waking up due to pain and distress. What life was that for him? He was very active until the last few months and I know he wouldn't have wanted to go like he did.

He was giving 2 hours of care towards the end, even then the carers only stayed for to quickly check that my mum had given him the right meds and quickly wash him. Used the rest of the time to sit in their car! My poor mum was left looking after him and stressing about him trying to get out of his bed when he was no longer able too.

I do really feel for you.

[Aquamarine1029]

I 100% understand you. Some people live far, far too long, for no reason whatsoever. It's a cruelty to everyone involved. I also agree that far too much is done to prolong lives that just need to end.

[Poochypaws]

@Oneweektogo2023

I pray Euthanasia becomes legal in the next few years I would like to exit in my own terms.

thank you. When I am old myself and my quality of life is shit I want to get checked in somewhere nice and comforting. Hand held and put to sleep.
I am not a hypocrite. I can't think of anything worse for my own ending than this.

[RosesAndHellebores]

Have you requested a discussion with the lead consultant about the diagnosis, prognosis, and care plan? If not you need to do it urgently. The NHS needs to be accountable for it's actions and what it communicates. Turning this on it's head, how awful your relative was told they had six months to live and many years layer .
........

[Badbudgeter]

Its not an uncommon viewpoint. There is a reason pneumonia used to be referred as an old man’s friend. Nowadays uti and chest infections are treated with antibiotics without considering whether the individual concerned would be better off if just left to slip away.

Like a pp I hope that euthanasia is legalised in my lifetime.

[tescocreditcard]

I'm in favour of euthanasia. If I'm still alive at 80 I'm going to dignitas.

[Poochypaws]

@LadyMacbethssweetArabianhand

I hear you. My mum is in hospital being assessed. She is doubly incontinent, sleeps most of the time and has significant cognitive impairment and delirium. She can barely have a conversation anymore. She has no quality of life. I am refusing to offer any care.

I'm sorry for your difficult situation. I have to say though I think you are doing the right thing. Thank you for your support

[Fiddlerdragon]

@Oneweektogo2023

I pray Euthanasia becomes legal in the next few years I would like to exit in my own terms.

That’s only good for people who want it though, it doesn’t help the families for people that dont. Suicide is always an option for people who no longer want to live, you don’t need permission or assistance as long as you’re physically able to do it. Presumably the op’s relative wants to live. It’s a shit decision to make, not wanting your loved one to die in a home, but not wanting to take on a huge burden with no end in sight. I’m a carer and spent my Xmas eve sat with a service user and his daughter as she had no one else to be with her as (we thought) he was passing away. 3 days later he was moved to a hospice as amazingly he was still going. The daughter text me the day before yesterday to tell me he’d finally passed a full 8 months after he was on his ‘deathbed’. Things like this can be impossible to predict.

[UltramarineViolet]

Does your parent have mental capacity OP?

If not then I would request via GP practice for some advanced care planning to be agreed including a 'best supportive care' approach and 'not for admission' flag on your parent's medical record

Explain that the hospital admissions are distressing for all concerned and that your parent has no quality of life

[Poochypaws]

@RatherBeRiding

I hear you OP - been there. It is utterly draining and relentless - well done for taking a stand to force a care home admission. Hope it works out - for you both. The person you are caring for would be much better off with professional carers who are not drained and exhausted.

thank you. The trouble is care homes seem to be 'full' and alot of them seem to have trouble getting staff. I fear she will end up in a less than ideal situation but it is literally coming down now to her survival or mine. I appreciate you posting.

[hattie43]

I won't be doing it . Mum didn't take care of us when we were kids so I'm returning the favour when she gets really elderly.

[Thestartofsomethinggood]

I get it. I have done 20 years of it. My mum is 90. Everyone goes isn’t she marvellous. I have nearly had a breakdown this year. It’s relentless

[TheUsualChaos]

Just to say I agree with your every word OP. Sending sympathy and hope that your situation comes to a close soon, you have all suffered long enough.

[LouisaPeanut]

@studentgrant

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 fing that a very sinister remark

On the contrary, this is the line I picked out as being able to resonate with the most. But not as the relative of someone, as an NHS manager (I’m not really a manager, but I think that’s how my job would be understood to the outside).

OP I’m sorry you’re in this position. And you’re not alone. I wrote my dissertation on the informal cost of care for Alzheimer’s patients, can’t remember the official figure but it was staggering. And so much to consider, including the mental health and well-being of the relatives taking on the care.

[theemmadilemma]

I can tell you who is benefitting. Big Pharma and the chain of people who's pockets are being lined to keep that happening.

Think long and hard about that. Let that sink in, sit with it.

[Berlinlover]

I’ve been in your shoes OP and agree 100%.

My life was put on hold from age 24 to 40 due to a parent being terminally ill for years, my other parent died when I was 10. Every single day for years I was so sorry I had been born.

I’m 47 now, I found love at 44 after being single for 20 years. Life is good but it’s hard not to be bitter about what I call my lost years.