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.

It is not sinister but a fact. I too am hoping for the right to die when my time comes. Having cared for two parents at end of life, it's horrendous and sucks your own life force from you. Just because medical science can extend an often pitiful existence, doesn't always mean it should.

OP, sorry also I feel for you. I watch my mother destroy her MH caring for her father, and she is dead certain she will never ask that of her children. It's utterly destroying.

I completely understand how you feel, we've been there.

You have done the right thing.

I'm so sorry to hear this OP. I hear you. I support you. We keep people alive totally unnecessarily. My views are probably repugnant to many but I am a big supporter of removing interventions as well as euthanasia.

From what I've seen of the NHS (quite a lot when my mother was dying) they can't wait to help old people out of this life.

My dad fell ill just over two years ago. He was then 89. I thought I'd be there for three weeks, during which time I'd rationalise his house (took three months) and he'd pick up the reins again. No. Since then his entire life has been my responsibility.

Physically, he's fairly well. Mentally, he's ok but vulnerable. I visit two or three times a day. I won't abandon him but I might not be able to see him out - I have a lot of medical conditions, most of which could take me out at any time.

Just saying 'I hear you', OP. And I have a plan for my older age, if I get there.

thank you for posting and for understanding.

I think it changes you and takes you to places you wouldn't have foreseen.

Yes I forgot the abuse (last dentist visit go called evil bastard, useless bastard and fuckin bastard in the space of an hour. That gave the dentist receptionist cause to stare very hard at their keyboard)

I used to think 'this is it, this is the end'. Now I no longer have any hope that it will end. It will of course but when you have been told countless times the person is so sick and at deaths door but then they recover you stop believing.

I will be so bloody happy the day I drop her off at the care home door and screech out of the car park.

If they're still enjoying their favourite films, having good conversations, i.e. there's not 0 quality of life, even if things are very difficult, I don't blame them for hanging on! We only have one life, I expect I'll cling to it tenaciously when I'm ancient.

Very gently op. My grandmother had advanced dementia/alzheimers. She spent her last five years in a geriatric mh unit. It was five years because my mother refused to sign a dna, insisted she was admitted to hospital every time she had a tia or an infection, bought her a vibrating bed, visited daily, did her hair, dressed her in nice clothes, did all her washing, fed her like a baby, gave her drinks from a sippy cup. Grannie was 4.5 stone when she died, doubly incontinent, had forgotten how to eat and swallow. She could have slipped away years earlier. It destroyed my grandfather who died 10 months later from cancer which was diagnosed six weeks after her death, it nearly destroyed my mother.

Your relative lives on because you are kind. Refuse the ss and nursing requests, have care put in place and distance yourself. Your goodwill and goodness has been abused.

I’ve been there and it’s utter misery for all involved especially the old person.
Eventually we insisted on a weeks respite care and relative only came home for one night at home as recognised, not admitted to though, that care at home was beyond what we could provide. We still visited but relative passed away a few weeks later. We were relieved and that was a normal reaction.

thank you. It really helps to have understanding from people who have experienced it. Those who haven't honestly can't understand why you are complaining

Sorry you're going through this. We were never meant to live this long.

I feel your pain Poochy! My DM died last year at 96 and I felt relief. She was doubly incontinent, couldn't walk and had a multitude of health problems. During the pandemic she was isolated and depressed and we were all dragged down with her. Like you I really hope euthanasia is legalised so those of us who want it, can choose that option...

sadly you will probably find your mum will die first from the stress and then the care of your dad will be up in the air. You will then be under huge pressure from everyone to 'help out'

I used to panic when I thought it was the end - now it produces no reaction at all. I'm just so desensitized to it all.

I hear you, my DF has vascular dementia, can barely speak, spends the day wandering (and falling) is doubly incontinent, barely eats and is pretty much a zombie. It's cruel. I have always been a supporter of euthanasia way before DF was like this. I don't know if he would agree (if he was able) but I'm damm sure he wouldn't want this for himself.

I am absolutely terrified of getting like this, I've made it clear to DH and DD do not let this happen to me, let me die, if I get sick don't treat me. I have ut written into my POA and I have a meeting to sort wills soon I shall ask what else I can do to ensure my wishes are met.

We are in the same boat with one of my in laws. Currently an inpatient with a chest infection, has been a bit tough and go but looks like antibiotics getting on top of it now. Not sure if that's for the best or not really.

I feel you OP. Just lost my grandfather at age 92 and we are all grateful it was swift in the end. He lived independently until 2 weeks before his death and refused all hospital treatments other than pain relief. He would’ve absolutely hated being a burden (in his opinion) and the stress it brings to family.

Having nursed my grandmother through dementia and decline to her death several years ago, and watched other family members and friends do similar, we are all fully in support of some kind of formal euthanasia, of course with appropriate safeguards in place. Why are we spending thousands and thousands keeping these people alive with zero quality of life for them?

I guess the ill person would have to sign up before they lose capacity?
My very elderly parents, who certainly weren’t particularly unwell, spent 20 + years wishing they were dead which infuriated me because I have lost too many friends over the years who died in their 30’s and 40’s.
I don’t think my parents would have considered euthanasia; they just spent 20 + years being incredibly miserable and difficult despite having plenty of money, close family etc.

Does your relative have full MC and a Respect Form ? Is it your relatives wishes to be hospitalised ,have a ceiling of care regarding resuscitation/ ICU care ?
Ironically this scenario which is common already ,will escalate because people live longer due to healthy lifestyle/ medication etc . In fact living a healthy lifestyle can spectacularly backfire once dementia kicks in . Healthy lungs, liver, heart V unhealthy brain…would rather go quickly but a decade earlier over dementia in my 90s !

I get you OP. I watched a relative die of Parkinson's with dementia. Doubly incontinent, minimal awareness, immobile, required feeding etc. The strain on the family carer was immense despite external help and really understood by only a few who had first hand experience. Fortunately GP and carer were aligned and a DNR was signed, but it was still 2 years on from then that death came as a release for all concerned. We just had no idea at the start of the journey how bad things could get and a person still not die. 💐

I would also add that the last coherent thing DF said to me which was a few weeks ago in one of the many calls he was allowed to make from his secure dementianunit was that I was "funking useless" and "you are not funking good enough" because I couldn't arrange for him to go to a care home as no one will take him. My health and sanity has suffered fighting SS and constant calls to tell me he's fallen, won't co operate, won't eat... I had a life too before he got ill

thank you.

Yes the care provided by the paid carers is of very mixed quality. Some of then clearly could not care less and are doing it just for the money. They do the utter bare minimum and really should be sacked quite frankly because they are not doing the job. However they can't get staff so they don't.

That said there has been a few who have seemed to really care and done more than they are meant to and for those I send a blessing.

I have lots of phone calls from the agency to tell me 'they have nobody to cover the next visit that my relative is due. So can I just drop everything and go and give them their dinner and meds (with about 20 minutes notice). I no longer answer calls from the agency as saying no I live further away than 20 minutes so not even possible didn't work. They just kept phoning.

I've also had hospital nurses threatening to call the police on me because I hadn't returned their calls. I realise they have to do 'something' but threatening the police to a person on the edge is just bloody stupid. Nurses - if a person is not returning your calls there is a reason for it.

What these people do not realise is I get on average 30 calls/emails a week re the ill person.

I think my dad was somewhat relieved when my mum died. She wasn't elderly but had been very ill. Obviously, in an ideal world she never would have become ill in the first place but it does feel like a stressful, horrid waiting game.

thank you. You have no idea how amazing it feels to be listened to and agreed with.

This is why I agree with euthanasia. I feel strongly that is quality of life over quality
Your Mum isn't living, she's existing and dare I say it causing quality of life issues for you, and controversially costing the nhs and authorities involved money
Just because medical technology and research has evolved to keep people alive, doesn't mean it's right. I make no apologies for my views
I'm really sorry, I can only imagine how tough it is

This is such a difficult heart searching situation. As @Poochypaws says if you haven't experienced you really have absolutely no idea how difficult this situation is.
My M and I didn't particularly get on. And we lived overseas. The challenges we had were horrendous. Eventually she was put into a home by social services. Apparently she had been allocated an advocate to speak for her and as such she was allowed back to her home. I told social services I absolutely disagreed with this. After my DH and I giving up our annual leave to travel back and sort out her house. She was there for less than a week. Our teenage son went with her to the local shop and cashpoint. He was harassed by people when he reminded her she'd left her card. They said he was going to steal from her. He stopped her walking in front of a car. Social services told me I had to take her to the home. I said absolutely not. That was there job as I had no time to do this I was travelling back to my home over seas. And hen they told my DH he had to take her. He said no. He was taking me a I the airport and that we could have done this the week before.
She was in the home for almost 10 years. The cost financially, mentally and physically is impossible to count.

Big hugs and much strength to everyone dealing with this.

Sign up for dignityindying if you really want to make changes.
Dignitas requires 2 doctors agreement and £16k. Much easier to say you will take your own life whilst you are of sound mind. Impossible to recognise when your mind starts to go.
And don't ask a family member to do it for. See David Hunter.