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.

The thing with euthanasia though, is that you can't have someone else "put to sleep", you can only have yourself put to sleep. And your relative doesn't want a care home so they most likely wouldn't choose euthanasia .

MIL is in a care home at council rates and it's lovely and cheerful. We got to look at a few and state our preference and were lucky to get first choice. I've also been looking at potential homes for mum (self funding). My observations so far are:
Not for profit organisations are usually lovely.
Small businesses are really lovely or really awful, never seem to be in-between. Those run by big companies appear to have very high staff turnover.
The worst we saw was one of the most expensive. The best were average cost and took LA funded residents.

@oakleaffy it is because the patient’s choices are adhered to whether they are practical, safe or workable for the family members. My mother refused outside help and refused to be admitted to hospice. (Despite promising that she would go into hospice once she was incontinent.) Patients have the right to make stupid, selfish, dangerous decisions for themselves, and medical professionals have to respect that even if they don’t want to.

I live in a country where euthanasia was legalised last year ( Australia). Honestly it wasn't a huge drama . Once it was suggested for legislation, community groups got on the bandwagon and made sure that social media was constantly reminding people of the benefits of a dignified exit. Opinion polls showed that a vast majority of people were in favour of it, and people were encouraged to write to their local MP asking what their opinions were - so the politicians were convinced that it was a good idea. In the end , each state had it's own vote and the legislation was passed resoundingly in each state. It's good to know that we live in a place where quality of life is valued more than quantity.

People power is the way to go. Don't depend on your MPs to start the ball rolling !

My mother and father wanted to die at home with family looking after them, I just decided that’s what we would give them after a lifetime of respect and love between us. I totally realise this isn’t for everyone or even viable for many people but between three siblings we had to make it work. Nobody really considered any other options. That’s didn’t make it fucking hard, it was a long drawn out nightmare which really messed with my mental health and caused family arguments but at the end we were all there holding our parents hands. I am still glad we managed it, despite how horrific it was.
I would rather be euthanised personally but know it’s too expensive for many folk to consider at the present time, including me.

@MereDintofPandiculation i’m glad your relative is well cared for. Unfortunately nursing homes and care homes are different beasts. A mobile (I use the term loosely) woman in her late eighties who cannot string a sentence together, cannot care for herself independently, has no idea where she is and has no recall of any part of her life before the age of 26 does not qualify as requiring any nursing element. So care homes it is. Add into the equation a rural location where staffing is an issue in any industry and you’ll be close to where we are : next to no choice. Like many of us in here, without having a spare £6k a month ourselves and without access to her own money or the ability to rent out or sell her current home it really is dire. This is why it is exhausting. The inability to try and improve the situation is just frustrating.

Thing is we’ve been reading about dire Care Homes in the tabloids for years/ decades -locally the Care Homes are lambasted regularly if some old soul falls out of bed and breaks their hip -managers sacked -no wonder no one wants to work in them.

So seeing this why haven’t these elderly people given any thought to their latter years.

it’s like it’s still the 1950s and the doctor will see them alright and family will be happy to bring them a cuppa in the morning. It’s ridiculous.

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.

I'm still on the fence about euthanasia (my 100+ yo family member chose this in Canada recently) but I very much agree about pulling back on intervention.

Maybe people should have to do a living will when they're say 75 (assuming they still have capacity) stating what interventions they want, if any, in later years.

In the meantime, stay strong OP ❤

Of course the weird thing about euthanasia is that the closer you get to the age where it makes sense, the less sense it makes to you personally 😜

But families stuck in this situation have very little helpful advice to go on, and the misery can prevail for many years - not just for them, but for their loved one.

When my parent ended up going down the "institutionalised" route (because I was protecting the other parent), it amused me that the language is all about "your loved one."

The loved one is the person you once knew. It's hard not to feel exasperated with the alien who now inhabits their body.

To everyone who has posted since my last post I have to thank you all again.

So many people in the same situation or versions of it.

I thank you all from the bottom of my heart for taking the time to post. To hear what I am saying and to validate and support me. It has helped me enormously to be heard and be able to offload to people who truly understand.

I have no idea how I will actually feel when my mum dies. At the start I would have been heartbroken, devastated, missed her like crazy, struggled to cope without her. As time has gone on I have had to learn to cope without her as she is no longer herself. You stop worrying about losing the person and just want this huge, crushing pressure off you. It's the not knowing when it will end that I find so difficult.

I do feel calmer at the idea she will be in a care home. I'm not too worried about money as her own house will pay for it which is quite right. Of course it could become an issue (money) later on down the track but I just can't worry about that just now. I am worried about issues I have talked about. I firmly believe she will not enjoy the care home and will want home again but we shall wait and see. As others have said it very much depends on what home she gets. I notice several people have said they had to put their relatives into several homes before they got a good one.

If anyone wanted to start a thread with their experience of care homes (good and bad) and anything to look out for I would be most interested to read it. Even the bad stuff. Forewarned is forearmed and all that.

To the one poster who has not read the thread and keeps going on about how I want 'all old people put down because they are a burden'. I'm pretty sure you know and understand the issues raised but are deliberately trying to be shit stirring. I would love to be in a situation with you where the NHS hospital has only one bed left. Your sick child needs admission or maybe your husband who has just had a heart attack in his early fifties. I trust you would stand back and say no that's ok, give the bed to that frail, demented, end of life old lady. She's the priority of this limited resource. I am happy for my child or husband to die so she is saved for another month. Especially since I overheard her calling her child a useless cunt while trying to take her to the toilet after soiling herself.

I notice more and more articles appearing in the press re the issue of euthanasia and I feel hopeful when my time comes I will have an organised end planned for myself. Am I looking forward to it - of course not. However it sure as hell beats living a drawn out nightmare like this. Hugs to you all for your support x

The op isn’t talking about putting anyone to sleep. She has stated numerous times that her mother is living a miserable existence and wants to die. And why does not wanting to go into a care home equate with not wanting to die? That doesn’t make much sense.

You are so lucky.

Our country is so behind the times.

I am a member of Dignity in Dying (Prue Leith is a patron). I would urge other people to join.

I don’t have anything useful to add but would just like to say thank you for one of the most honest posts I have ever read on MN.
I am terrified of ending up like this and am investigating ways to commit sucide when my time comes. Unfortunately when you mention this to people they just assume you are depressed.

OP "You stop worrying about losing the person and just want this huge, crushing pressure off you. It's the not knowing when it will end that I find so difficult."

my situation is nowhere near yours and I find this too relatable. The idea that might go on for ten years is probably shortening my life but I don't even care.

I really feel for you Poochypaws. Have followed this thread with interest, as my widowed MIL has advanced dementia and just turned 99! She is not aggressive, but very frail and incontinent. She had some falls in her own home, and now a nursing home (for the last 12 months). My DH is an only child and was having to do a 1 hour round trip to help her every day, plus paying a carer to come in twice a day for getting up/going to bed etc.

MIL was adamant that she didn't want to go into a care home, but only had a modest home (just sold for £300k). Her savings soon ran out, so the house is funding her place in the nursing home. She said she would prefer someone to live in (at home), but this would not be a solution without massive savings!

Her house (in Somerset) was in a village, and finding the carer was almost impossible - care agencies didn't even return our calls! Unfortunately the carer we found got Covid last year and was finding MIL increasingly difficult to cope with as well. We had already managed to BEG her to go to a home for some respite care last spring, when the carer booked a week's holiday.

At present, the nursing home is very good, though it costs around £1200 a week. The other day we both went to visit, and she asked if we both worked there! (My DH usually goes once a week while I'm working.) Luckily they don't seem to rely on agency staff at all.

We had already visited several before the respite stay, but eventually it came down to finding somewhere with a room available.

It's a shame she is so changed, as she was a very bright and able 90 year old, who stayed up to date with using her computer etc. That is the mother my DH misses most.

My thoughts are with you Poochypaws - it's really difficult.

Having to watch an elderly relative suffer on in a situation that can and will only end in one way ( death) is horrific. They keep the elderly alive yet treat animals more humanely! I completely get what you mean op, its not a life but an existence!

I've done this twice, first time person was expected to live for days and it ended up as six weeks. That was bad enough and that's with two people living there and 4 x 2 carers a day plus over night carers. I have no idea how people carry on caring like that for years. Or with fewer caring resources in place. Second time I was less involved (not a relative but I took turns with family) but weeks turned into months. Both times I've ended up reflecting that we treat animals so much better.

The trouble is, you don't know at the start what you're letting yourself in for, or how it can escalate from a few small tasks to 24/7. Or that the carers might not turn up leaving you up all night. And it's one thing to throw everything at it for two days or weeks whilst your own children barely see you, but not when it runs into months or years. I've been the child in that situation and I would never now prioritise an elderly relative above my own child.

You have to push so so hard to get any kind of support and be extremely assertive. And that's really difficult when you're exhausted and overwhelmed. And it creeps up on you - you just keep going taking on more and more as there's never time to stop and think. Or you do another week/month thinking that'll be it and three months later that's still going. It's really really difficult to get a care package or a place in a home and the cafe packages still assume someone (usually a female family member) is running around doing hospital appointments, house maintenance etc.

There is some idealistic thinking on this thread about the realities of caring for people who are very very ill. We're keeping people alive far beyond their actual natural life span and I don't think that's an humane (or, indeed, Christian - I am one!) thing to do. Having had the conversation with an elderly relative about what resuscitation actually involves, and what repeated treatment with antibiotics involves they had no idea and after that opted to sign a DNR and have a respect plan in place.

It's worth a read of Atul Gawande's 'On being mortal' which addresses these issues.

I also wonder about the implications for everyone of this massive repeated use of antibiotics to delay the inevitable and the link to growth of antibiotic resistance.

And to whoever it was upthread who suggested renting out the DM's house to pay for a care home.

Have you ever rented a house out? It (rightly!) comes with a whole host of admin to protect the tenant - so electrical safety certificates, gas safety etc. All of which need to be organised, trades let into the house. Somebody has to be available to maintain the house for the tenant, so either yet another thing for the no-longer-a-carer to do or pay the letting agent do it.

The home owner then becomes liable for tax on the rental income so that's the no-longer-a-carer having to complete a tax return for them each year. Or paying an accountant to do it.

Letting agents charge about 15% of the rent to manage properties. In my area a 3 bed house would rent for about £1500 a month. Take off letting agent fee, tax, put some aside for maintenance costs which will crop up and to cover void periods. The eventual rental income would maybe cover a week a month of care home costs?!

So it isn't a feasible option for paying for a care home.

Thank you @Poochypaws for starting this thread. With elderly FIL currently in hospital after a health crisis left him stranded upstairs in his house for weeks, it’s been timely.

I firmly believe she will not enjoy the care home and will want home again but we shall wait and see.

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.

Bearing that in mind, is it so bad to prioritise what YOU need which is to have your Mum in a home? It’s an utterly shit situation and I know the guilt must be immense, but you cannot do this anymore, so care home it is.

My Mum, having gone through years of hell like you, has already told me to put her in a home if necessary, no guilt.

Those who get it, get it.

We found that elderly relative made massive assumptions about what being in a home would be like - they were old enough to remember workhouses so had mixed the two up in their head?!

Certainly one who had been vehemently opposed to going into one, went in for two weeks' respite after a hospital admission, then loved it so much he never went home again. It was nothing like he'd thought it would be!

They couldn't be old enough to remember the workhouses themselves- the last ones closed in 1930. They may well have heard talk of them, though.

Depends when they were born. And possibly also what class.

My grandparents' generation, including the relative I'm talking about, were born about 1910 - 1920 so would have had personal awareness of them. And even more so from hearing older family members talk about them as somewhere you didn't want to end up. They were very poor working class so presumably it was a real fear.

My grandparents were born well within the workhouse era, and well within the class for whom they were a constant fear.

3 of the 4 (who all lived into their 90s) eventually spent time in residential care / nursing homes - though my grandfather died quite quickly, partly due to the heartbreak of no longer being able to care for my grandmother.

This. Plus the sheer enormity of having to clear a lifetime of belongings of someone who has not yet died. It does feel very wrong but rent or sell, you cannot keep an entire house worth’s of chattels. It is very guilt inducing.

This. My mum felt tremendous guilt around going through my grandmother’s things, as if she was dead, long before she died.

There’s also a thread on MN right now about a family who rented out their mother’s house to pay for care fees, only to be having difficulty getting the tenants to leave now that the person has died and the house has been sold.