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.

@Ilikeyoursleeves DH feels much the same about one of his brothers.

Agree with everything you’ve said. I have a non verbal 8 year old who requires 24 hour supervision and we’re now looking after 89 year old mainly bed bound cranky as hell FIL.
Can’t even describe how absolutely exhausted I feel, honestly feel like I’ve aged 10 years.

This thread is so cathartic to read.

Nature is telling us something when a very elderly person needs thirty tablets a day to stay alive and suffers constant infections. Why don't we listen to nature?

@Ilikeyoursleeves that must feel both very sad and a great relief. I'm glad you're no longer in awful limbo. Take care.

Thanks @BinaryDot and others. The relief took quite a while to hit me and I still get to the weekend and think I have to do something and then realise I don't need to visit him / call his GP / speak to the care home / sort something out / write another email / chase something up. Although I'm still wading through all the deathmin just now.

It was weird and I said to others it was like Stockholm Syndrome as I couldn't quite let go of things. Eg I read this thread and another one I posted about my dad having Parkinson's, over and over after he died. It was like I was so used to having it in my life I couldn't let it go even though I had wanted to for years. I'm not so bad now that it's nearly a month since he died and I'm gradually learning to embrace life again. I still can't sit still though as I always feel I have to be doing something as I've done things for so long. So I'm decorating my hall 😳🙈

Hope everyone's doing OK who's on this thread. How are you OP, @Poochypaws?

MIL is now on end of life care. We got the "prepare yourselves" call just over 2 weeks ago and now she's perkier than she has been all summer. At least the agreement is now no more hospital trips or blood tests as she gets too distressed. We were first told her death was likely in a few days 8 1/2 years ago though, so goodness knows.

85yo FIL is now on end of life care too. Hospital kicked him out as soon as they could and he’s now living in a hospital bed downstairs with MIL doing the bulk of the caring (at 75 and not in the best health herself, this has been very difficult) with the standard 4x a day carer visits, and a night carer they’re paying for privately.

Prognosis is weeks but I’m starting to worry that he’ll be stubborn enough to stay alive for months. Cancer has destroyed his bones and he has numerous breaks all over his body, with the constant threat of more hanging over him.

The most frustrating thing for me, and maybe I’m being callous here, is how unprepared they have been for illness and death. DH has had to rush through POA (not that FIL gave permission for health matters anyway 🙄) and a will. MIL cries that she just can’t believe this is happening. He’s 85. What did they think was going to happen?

Admittedly, the diagnosis and decline has been rapid, but for me - after losing my grandparents in quick succession in my 30s, Covid, my Mum’s cancer treatment - I’ve never been more aware of old age, illness, death, having to clear out and sell houses, etc.

Mainly I’ve realised that, after death, all one’s possessions immediately turn into junk that just has to be disposed of as quickly as possible… Swedish death cleaning has never sounded more sensible but doesn’t work on hoarders.

@Jellycats4life that's very familiar sadly. My mum died without a will despite having dementia for years (and being aware in the earlier days that she was declining). It was such a faff to then sort things out after she died. I made my dad do a will when she was in her final weeks, even then it was a struggle as he was suspicious of lawyers and thought they cost too much (ironically it cost a small fortune to sort my mums affairs cos she died intestate).

I think many old folk are in complete denial. My dad wouldn't discuss funeral plans even though he was clearly declining so we had to stumble through a lot of it ourselves.

Sadly we’re all done here. Last parent, MIL passed away after a week-long brutal ending. DH was exhausted by the ‘quick! Come back’ calls from the care home. She had severe dementia so didn’t know who was there at the end.

I agree with the pp about putting affairs in order and preparing for the expense of old age. If there is one benefit of what we’ve been through these last 5 years it is the awareness of all of the pitfalls.

Hugs to everyone still hanging in there. You are all amazing.

My late DM was diagnosed with Alzheimers in her late 70s and died over 10 years later, three months short of her 90th birthday.
The day she was admitted to a care home a huge weight lifted from my shoulders. She was quite happy, first in a residential care home, then when her other physical conditions worsened, in a nursing home. And I could visit as often as I could, knowing she was cared for, generally content and, most of all, safe.
I was terrified in the early days of the disease that she would come to harm at home, and there was little I could do about it, being at work every day and running to see her in the evenings and at weekends. I was a wreck mentally and physically. My anxiety was off the scale.
After she went into the care home DH and I were sorting out her house and went into her bedroom to change the bed and discovered a huge burn on her carpet right next to it, and even worse, a huge 30 cm hole burned right through her mattress. How she survived that I will never know. And she said not a word about it. Yes, a smoker...

People are so resistant to care homes sometimes @SiobhanSharpe but for people with dementia they are by far the safest place. My mum would have hurt herself, or someone else (still has happened at the care home to be fair as she meddles though she tends to be the one that gets lamped), if we hadn't moved her to a care home.

She deteriorated quickly and now needs to be fed or else she just wouldn't eat as has no hunger cues, has to wear an adult diaper so needs frequent changing. She is far better off with round the clock care available by people who are trained to care.

My DF is finally in a nursing home after an almighty battle with SS. Its taken months to get home moved out of secure dementia unit ti the home and he has declined further in that time. Now he doesn't speak at all, can walk but only with a walker that he can't understand how to use. The home is hot and noisy and I hate going in there. The staff are lovely and I'm glad he is somewhere that is a hell of a lot nicer then the secure unit and he is at least not lashing out now.

DM is slowly clearing the house with our help as DF is a hoarder, we have managed two rooms so far and I am grateful she's doing it as she at least recognises what a job we would have otherwise, but it is sad having to do it but also feels like a step forward as she's wanted to clear it all for years and DF wouldn't let her. So now instead of being exhausted looking after Df we are exhausted by clearing up the mess he has left behind.

@Tara336 it's a massive weight off your shoulders once they are in the right place isn't it.

He’s 85. What did they think was going to happen? 85 doesn’t seem as old when you’re in your late 70s.

I’m on the usual elderly cocktail, but I’m far from ready to be written off. At what stage do you start to refuse to prescribe?

but for people with dementia they are by far the safest place If I get dementia I don’t want to be safe.

She deteriorated quickly and now needs to be fed or else she just wouldn't eat as has no hunger cues, has to wear an adult diaper so needs frequent changing. She is far better off with round the clock care available by people who are trained to care. I feel I’d be better off dead.

When you're bed-bound and sick with no possibility of recovery, or have serious and irreversible cognitive decline, so many old people are husks of who they were. Why keep people alive with massive doses of drugs to lie in diapers, oblivious to nearly everything, being spoon-fed or tube fed. That to me echoes the most extreme pro-life position, when fanatics insist that even babies with the most hopeless prognosis must be born and die 'as God intended'.

Except its not dying 'as God intended' it being kept alive with extreme intervention, medication and vaccines.

I hope you're OK @Poochypaws . I've been over in the Cockroach Cafe thread and thought of you.

My mother in law spoke to her doctor and refused further treatment
(Really no more antibiotics as they would tell us she was dying, pump her full of antibiotics & she'd rise again like a phoenix from the flames - but like you describe everything having to be stopped & restarted)

He then put a directive in place that the next time she was ill she was to be given one cycle of antibiotics and if they didn't work (they didn't) she was to go onto palliative care.
She was unconscious for a week with carers coming in and out & with a pump driver ensuring she wasn't distressed and died peacefully in the house like she wanted.

Is that something your relative would consider ?

@countrygirl99 yes it's a huge relief for us all..it felt unsafe for us (visiting) and DF as a patient in the secure unit. Where he is now is much more suitable. Just not having to fight SS on a daily basis has improved things for me. I feel like I lost a year of my life fighting for DF. Now we just have to deal with DM who is living alone trying to put the house in order and taking her frustration out on us as she's lonely. I feel like I carry so much burden still as DB won't step up and help (he is a complete waste of space)

FIL was given a prognosis of weeks but I really think he could live for quite a bit longer on spite alone. He is an abusive man and can’t even manage to be nice now he’s bed bound and relying on MIL to feed him like a baby. MIL and DH have always been scared of him.

She can’t cope. She’s absolutely run ragged. They’re paying for a private night carer, so she can at least sleep at night, but he disapproves and says they should cancel (to save money, even though he has tons of money in the bank that he can’t take with him). Because, apparently, all he needs help with is eating and toileting which is a piece of cake 😩

Meanwhile I have to bite my tongue a bit because they’re not my parents. DH has also withdrawn and isn’t even speaking to his mum on the phone. Why, I have no idea. He’ll have some excuse but the reality is, I don’t think he wants to give it much headspace. It’s so frustrating to watch.

Isn't your FIL eligible for hospice care/Macmillan nursing @Jellycats4life? How does that work? I hope the end is not too long drawn out for you all. He sounds hellish and your MIL should not be slaving around after a nasty bully.

Thanks @AInightingale. The local hospice have been around to visit and have been pretty helpful as far as I know. He’s also under the palliative care team via the hospital. But, NHS being NHS, all the care shared between various departments is so patchy and no one communicates with each other. He also had the standard carer package of 4x visits per day, as well as the private night carer. He also had to attend an in-person hospital appointment this week (an ambulance took him) but he went alone and I have no idea what was said, and I doubt he’s told anyone either. Mentally he seems his normal, controlling self!

I’m not too clear about all the agencies that are involved and what exactly is going on because MIL gets too confused and can’t relay all the info. She’s always been scatty but I honestly don’t know whether she’s declining cognitively or not. Various family members have put it all down to stress, but I remember hearing the same about my Nan (who’d recently lost my Grandad and was all over the place mentally) but it was dementia. So I’m always suspicious when people are a bit too keen to blame confusion and overwhelm on stress.

MIL has convinced herself that he’s being a shit to her because if he started being pleasant, she would “get too attached”. So she thinks his nastiness is just a kindness to spare her feelings when he dies. Again, I bit my tongue and left her to her delusions.

It’s ironic because over the years she probably would have admitted that she was just waiting for him to die so she could be free and start to fix up the house. Now she’s having to face it, she’s rewriting history in her mind.

Edit: hospice nurse explained that they can’t admit a patient unless they’re actively dying or they are struggling with pain control. Neither apply at the moment. Paying for a nursing home is an option but he would not consent to paying £££ a week when he can run his wife into the ground for free.