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'm sorry. Hope it's quick. Sounds like a candidate for one of those 'League of Gentlemen' wreaths.

@Jellycats4life my mum has early stage dementia and any stress really knocks her for 6. When she gets upset about something like losing a bank card it upsets her for a couple of weeks even after she's forgotten she got upset. When dad died we had a few weeks of seriouslying thinking she wouldn't be able to stay at home - for 2 weeks she was phoning us multiple times a day to tell us the hospital had just phoned to say dad had died and completely forgot the funeral was all arranged and contacted another funeral director a couple of days before the actual funeral. So it could be early dementia plus stress.

You’re right @countrygirl99 I guess it doesn’t have to be one or the other.

@AInightingale Had to Google that 🤣 Yeah, as much as he’s mellowed in old age, and clearly loves his grandchildren (in his own way) I will not shed a tear when he’s gone.

@Jellycats4life God I could have written your post, DF has bullied us all our lives. DM is scared of him, she is alone now as we finally got him in a home. We are helping her redecorate, something he refused to allow despite being loaded. The first room she did she was terrified he would be sent hom and see what we had done, now I think she's enjoying doing it but it's tiring as the place is a mess. The heating failed withing a couple weeks of DF being sectioned and we found a gas leak! We are all trying to encourage DM to get a dog she has always wanted one, she pretends she isn't in a position to yet, but the real issue is DF she could take the dog with her to visit by bus but she is scared of what he will say. Thats the result of 60 years of psychological abuse, scared of him even now he can't speak or harm her.

Oh wow @Tara336, that all sounds so familiar. The state of the house really has to be seen to be believed. It hasn’t been maintained in decades. Everything is falling apart, dirty, broken and cluttered. When it has to be sold in the future it will need to be stripped back to bare bones and started again from scratch. And yet FIL has so much money in the bank. Well, I guess it’s easy to save tons of money when you don’t spend a penny on house repairs 🙄

We had to clear out the living room in preparation for the hospital bed to arrive. We threw out bag loads of VHS and cassette tapes and he moaned that we should have run it all by him first.

Like you say, the psychological abuse is so powerful. MIL never felt able to defy him and call in tradespeople to fix things behind his back. She couldn’t even throw out broken electricals (hoovers, computers, DVD players) so it all just sat around instead.

@Jellycats4life same here, I found DF school books, guarantees and receipts for household items long broken and disposed of we were dragging things down tithe garden and hired a waste clearance guy to take it, that was just one room!

We have done in 9 months more then had been done in 40 + years. Its exhausting but DM is happy as she started to dispose of things DF would just not let go of. With every load collected she says "he would go mad" and then she smiles. The first room we cleared was his study and it felt like a F you to do it, I'm not ashamed to say I enjoyed it.

While yes we are disposing of things he probably treasured its an amazing feeling after years of his control and bullying to do it even if he doesn't know almost like we are getting our own back.

People go through similar catharsis after a separation. Hiring a skip or leaving a miserable hoarder is exhilarating. It feels like an act of rebirth! Piling masses of possessions/ junk around someone and nearly pushing them to the margins of their own living space is a kind of low level abuse I think. Children and I had virtually no attic, garage or cupboard space in the home I shared with my ex-partner. Everywhere was crammed with his old rubbish.

Piling masses of possessions/ junk around someone and nearly pushing them to the margins of their own living space is a kind of low level abuse I think.

It absolutely is abuse. Forcing someone to live in borderline squalid conditions for no reason is abuse. Forcing someone to live without a working oven for over a decade, and without a washing machine for 2-3 years (as in my ILs case) is abuse.

With every load collected she says "he would go mad" and then she smiles

That made me smile too.

Thanks everyone for letting me vent. I’ve gone off on a tangent which is way beyond end of life care. 20 years of watching this kind of insanity play out will do that to you 👀

My dad wasn't abusive in any way with his hoarding but he was a hoarder nonetheless. A war baby who couldn't throw anything away as it would be wasteful. When I sold his house when he moved into a care home it was a momentous task. It took months to sort through everything and I even came across artwork from when he was at primary school! He had kept all his work notes and books despite retiring nearly 30 years ago. I even found an old potty for when we were kids (40 + years ago!). I found stuff he'd kept when his own mum died many moons ago. TONS of crap really!

After I went through it all I took what I wanted (as did my siblings) then we paid for a house clearance. Took them two full days using a removal house size van several times and cost £2k but it was totally worth it cos it was all done and dusted.

I then sold his house as a project to do up, it was a state. The bathroom was still the original one from the 60's. Carpet threadbare, wallpaper hanging off walls, damp patches. It looked horrific. But a young couple wanted to buy it so don't feel you need to renovate a property to sell it. Even though it was my childhood home, by that point I'd totally lost the will to live with it all and wanted shot of it 😞

@Ilikeyoursleeves we have only achieved clearing and redecoration of two bedrooms so far, DM is staying in the house and is doing it all exactly hoe she's always wanted. I think its helping her MH and I'd giving her focus. My DD had a peep into the garage the other day she spotted her car booster seat still stored in there she is 28! It's exhausting doing all this as I have a chronic illness but I will help as much ad I can.

DM is convinced the dementia stopped DF throwing things but I'm pretty sure keeping a broken radio he inherited in 1982 has nothing to do with dementia.

DF spoke for the first time in ages this week to tell SIL she had "sold" him to thr home. They have asked what we want to do regarding care as gd deteriorated further and we have said keep him st the home. Physically he seems frailer and communication is now pointing or looking at things he wants. We have been told he will die suddenly from a stroke or heart failure, it will be a relief for us and him

@Tara336 sounds like he's better staying in the home. It was easier clearing my dads home as no one was living in it (unlike your situation) but was also a nightmare cos I had to run so much by him. He actually asked me to buy a 'floppy disc reader' so I could go through all his floppy discs for any relevant and needed work documents that couldn't be thrown out.

He retired 30 years ago and if any info was on a floppy disc it will certainly be out of date now!

I gave a firm NO and had to be really assertive through the whole process and it was such draining and hard work. Physically and emotionally.

@Ilikeyoursleeves I found work stuff as well, tons of drawings, notes and documents its very strange as if work was the only thing that gave him validation. I've been told by DM the loft us full of it as well.

@Tara336 bin bin bin it all!

Yeah, come back to us then. I know 80 year olds running half marathons.

He actually asked me to buy a 'floppy disc reader' so I could go through all his floppy discs for any relevant and needed work documents that couldn't be thrown out.

Haha 🤦‍♀️ @Ilikeyoursleeves my FIL would demand something like that too. In fact he was lying in his hospital bed the other week saying he was going to give us permission to chuck out specific items from specific cupboards upstairs. I have a feeling any large scale decluttering will now be left until he’s gone, otherwise he’ll be there shouting at people and demanding that he look over every single item before they can be chucked out.

I know one who’s aiming at 300 full marathons before she dies. She’s already close to 200.

I don’t think Dignitas will help perfectly healthy people who just wish to die. It wouldn’t help their reputation for a start.

Luckily we’re in a position to store Dad’s stuff so have been able to not start chucking until we’re sure he won’t ask for the item in question. On the other hand it adds to the guilt when I do throw. If you have to empty a house in two weeks then, tough, that’s what you do, and just keep your fingers crossed that nothing important gets lost in the process.

I don’t think Dignitas will help perfectly healthy people who just wish to die. It wouldn’t help their reputation for a start.

Quite. Although presumably most of us would not want the help of Dignitas until our health is ailing in some way.

I am hopeful that we will follow the lead of a few other countries and introduce right to die laws. If not when I feel the dementia and Age Related Macular Degeneration that both my parents had (or some other health issue) is in my near future I shall be visiting my GP because I can't sleep / am anxious / whatever it takes to get a prescription of something which in large enough quantities will send me on my way. I can spend 6-12 months collecting the drugs.

Of course it's very easy to conjure up this plan when it's decades away. Perhaps when you get there you want to keep struggling on.

I had the call from my Dads home to say he is having problems with choking on food and swallowing, however he is not apparently “end of life” so the prognosis is to keep on until he chokes and gets pneumonia and then wait to see if that takes him off (despite the yearly vaccinations I get pressured into approving). Poor bloke has been degenerating for nearly 20 years. It feels so bloody cruel.

Meanwhile I can’t have a conversation with my Mum without her latching onto one detail and using it as the source material for some massive anxiety attack, nothing I can say will convince her otherwise, I try and distract her but it doesn’t work, I might as well sit in silence. I’m clearing out her house, keep finding diary notes about how wonderful her brother is (who does fuck all) but how he has children so can’t help her (I also have children but they don’t matter). Lots of notes about how she “just wanted to be left alone” around the same time as when she was ringing me 20-30 times a day demanding I fix her fridge, buy her a car, find her a job, sort out her love life etc etc. There’s so much stuff, so many notes of passwords an personal details scrawled on post it’s folded into books or tissue packets and I have to check it all, I come home feeling exhausted, but I need to clear the house to get it rented to help fund her care. I can’t do this another 15 years!

@SinisterBumFacedCat why don't you sell.the house otherwise it's a continuing source of admin and stress

Of course it's very easy to conjure up this plan when it's decades away. Perhaps when you get there you want to keep struggling on. I had a vivid dream involving euthanasia via two tablets. I’d taken one and was sent home with the other. Found I didn’t want to take it but was scared lest the first had irreparably damaged me.. made me re-think. I don’t think I have the courage, i’m too scared of a botched job.

@SinisterBumFacedCat I’ve recently had a similar clear-out job. All the random bits of paper! (Which still have to be checked in case they’re important) All the insights into thinking which you don’t necessarily want. I sympathise.

@SinisterBumFacedCat agree with pp about wisdom of renting a house out. Lots of landlords are selling up because of the stress and the relentless pile-on of regulation. Or have you rented a house out before and have experience? We thought about this with my mum, but neither of us have any experience and we rejected the idea as being too big a headache.

Where does your user name come from btw, it sounds like a Viz comic strip!

@SinisterBumFacedCat could you sell the house rather than renting it out? I've been a landlord (and a tenant at different times!) and it's a nightmare for producing yet more admin to meet the regulations.

The rent you get often doesn't go that far anyway by the time some is kept aside for repairs and maintenance and to cover any void periods.

Best time to go, surely?