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.

In the same way you miss a migraine

I miss my mum so much. This is not my mum, it’s Someone I don’t recognise, my mum was loving, kind , and fun loving. This mum is poorly, in pain, anxious, scared and depressed. Every day is a real struggle, she still loves her family and loves them to visit, but the next day she’s already forgotten and thinks no one cares. Your right I’m missing the old mum, maybe this is nature preparing us.

I know exactly what you man op, I cared-for my mum til the end, it was such hard work as she was so stubborn and refused all outside help, at least once a month she was being admitted to hospital for treatment. I miss my mum but most of all I miss the mum she once was

I miss my mum too. She's had Alzheimer's for almost 10 years now but has got quite a bit worse over the last 12 months. 4 months ago she lived with my dad who was in increasingly poor health and she adored him. She used to have friends and regularly saw her family - sister and brother and sisters in law - plus me and my brother. Many of her friends and family as now dead or like mum have health issues which means they can no longer socialize together.

Now my dad is gone, she's in a care home having forgotten he's dead and often wondering where he is. She is anxious and wrings her hands to the point they are dry and cracked with open sores. She is losing her words but has little conversation as she can't remember what has happened to talk about it. She is well cared for by the staff but none of us can take away her anxiety. She has had a few accidents with toileting and I hope she passes away before she becomes incontinent and is unable to feed herself or speak.

The person she was even 5 years ago would be horrified if she could see the person she has become. I love her and don't want to see her suffering and declining. I would like her to slip away very soon even though I adore her.

she sounds like she was a lovely mum and how nice to hear that she adored your dad. You all sound like you were very happy together.

Hugs to anyone missing their Mum. Like some on this thread, I ended up looking after the Woman who was my tormentor throughout my life. I genuinely cracked open the Champagne the day she died and I have not looked back. I need to get back to being the person I was. I am bereft about the loss of my lovely MIL though - she was the mother I should have had.

100% I identify with @Poochypaws post regarding the lack of enthusiasm for personal hygiene, hair, make up and everything else. I don’t just identify as weird Barbie, I look like her also 😂

I wonder if low intervention care homes exist? It's all very well saying I would never put my own children what some of you have been through, and I sincerely believe I never would. Popping off to Switzerland actually taken an awful lot of courage though. Plus, because of the law/practicalities, you have to go before you are really ready.

A low intervention care home might sit well here though. The residents would all be unvaccinated, no antibiotics prescribed, etc. Let traditional illnesses come and take people quickly. If people want high medical intervention, they can just choose a different care home. I wonder if such a place would be deemed unethical or even illegal.

I had a 90 year old neighbour and spoke to her at the start of covid to see if she was OK. She was so pissed off about it all and complained that she was the only person on the bus going into town and that all the clubs she goes to were closed. In her words -" I'm 90 and don't have that long left to live, I'm not spending in locked up alone. Lived a long and active life then died after a short illness, that's me!"

I want to be like her. Not years and years in a dilapidated state of pain and fear and a burden to my family.

I’m sorry. It is the hardest thing to go through.

And you're right op, nobody cares about the carer. A friend of mine quit her job and moved 200 miles to look after her mum because her mum refused to go into a care home or have anyone else look after her . After two years of 24/7 care of her demented, up and down all night, incontinent mum my friend was on the verge of a breakdown. Mentally and physically exhausted. She poured all this out to a nurse visiting her mum one day. The nurses response was that she was doing a great job and as long as her mum was OK, that was the only thing that matters. All said while holding my friends hand and with a caring tone of voice.

I sympathise tremendously . My DM is no longer the woman she once was, thanks to cognitive decline, but is currently safe enough at home with 4xdaily carers. Apart from her vascular dementia she is otherwise in relatively good physical health for a woman of her age, albeit getting frailer and staying in bed most of the day. I have a three and a half hour round trip to see her every weekend to do her shopping (she’s now not up to receiving and putting away a delivery). DB does his bit when he can, and is a whizz with the DIY, but lives 5 hours away, has his own family and travels abroad for work a lot.

I’m fortunate in that her underlying personality hasn’t really changed and we’ve mostly got on well, and she always says how grateful she is. But there’s saying it and appreciating the reality of the mental load and that I work full time and yet giving up half my weekend to run around doing all those jobs around the house mentioned by PPs.

The depressing thing for me is that I can’t see the end game for mum, without an underlying condition that we could predict would get her in the end. With Dad it was strokes. She’s just going to get frailer and frailer, and yes a bout of pneumonia or a UTI would be a relatively gentle and quick way out. Or she could soldier on for years with the dementia getting worse and worse. This thread is a reminder to have a conversation with DB about the circumstances in which we’d agree to antibiotics/active treatment and in which we’d decline (got LPA). Again fortunately we are pretty much on the same page on what we want for her, ie to be safe and comfortable and to have at least some quality of life.

They don’t ask if the carer is okay in case the answer is no

They can't ask if the carer is OK, because the honest answer is very likely to be "no" and then they'd have to do something about it. Meanwhile having family carers makes things a lot easier for SS, healthcare staff etc so they're not going to want to stop it, they'll encourage you to keep going!

A low intervention care home might sit well here though. The residents would all be unvaccinated, no antibiotics prescribed, etc. Let traditional illnesses come and take people quickly. If people want high medical intervention, they can just choose a different care home. I wonder if such a place would be deemed unethical or even illegal. I always have to give permission for my dad to have a flu or Covid jab, implication being that if I didn’t give permission, he wouldn’t have it. And they’re quite happy for him not to be transferred to hospital. I’ve not experienced the desire to keep people alive at all costs.

My city has a support group for carers, offering advice, chance to meet others, courses on how to maintain well being (with person receiving care being looked after in a separate room for the duration). I think they’ve twigged it’s cheaper to look after the carers than it is to provide care themselves.

But how on earth does a carer find time to go to a support group?! A lot of us are juggling full time work, commuting and children and fitting in care of an elderly person around all of that.

The only support that truly helps family carers that I can see is respite. Whether that’s at a low level helping with some tasks, or high level moving into some form of residential care.

We actually have a carers support group at work! It's a monthly teams call where we can let off steam and share tips and the person who runs it is available to contact in between. I've found it really useful.

See, I can see a monthly Teams carers support thing at work actually helping as an offloading space - it's in time already allocated for work, so isn't added to the 'load' as such. And you don't have to get yourself somewhere with elderly person in tow.

Going to suggest it to my employer

My Mum received an invite to a monthly support group for those with dementia and their carers.
She’s not going, insisting she hasn’t got dementia and it’s on a day when she normally goes to the day centre. I can’t see that any of us would get any benefit from it tbh. It’s just another thing to accommodate. The last thing I want is a fight to get her to go. I suppose I could go along myself if I felt like I needed to but can’t say it thrills me. I’d rather have the time and space to do my own shit than to talk about it. I’ve found this thread more helpful than anything else, being able to communicate with others who totally get it, conveniently from my own home works for me.
i normally visit today but have said no because I want to spend time with my youngest before he goes to Uni at the weekend. Of course I hardly slept last night coz of the guilt and am a wreck today

I was thinking today about why the above generation accept and expect their children to care for them in old age. I don't think my generation (age 50s) would let their children give up so much of their life to care for us. I think there has been a cultural change in Britain between us.

I remember as a child (growing up poor which might be a difference) young people, just starting work, were expected to give money each week to their mum when they got paid. This was whether they lived with her or they'd left home already. This was the cultural norm. Its still very much a developing world thing, money and care, flows up the generations, not down and children are expected to provide for parents.

Now, money and care flows down the generations. I would never expect my children to send me a cut of their wages. And I'm sure it wouldn't even occur to them to do so. And I would absolutely definitely not want them caring for me. Fortunes have changed of course though as well. In that money is much tighter for young people now and older people are better off.

Looking back at mine, also poor and also the adult (male!) children were expected to hand over some of their wage to their mother. The female children were expected to be the carers, often working in drudgery, bringing up multiple children and running around after elderly parents. There's several ancestors and family friends I'm aware of where an unmarried daughter didn't work, or worked in a very undemanding PT job, was refused permission to marry and cared for the parents when they got older.

But they all lived within a couple of streets of each other. Life sounds horrifically hard but there were other people around to at least share some of the burden.

Medical care wasn't as good - a lot of these older people would be frail but not living with the multiple problems we're dealing with now. I also think there was some decades when there was a lot of help available - district nurses, home helps, GPs who did house calls. People stayed in hospital longer to recuperate after operations or went to a convalescent home to be looked after.

Better pensions, earlier retirement age meant someone in their 50s or 60s was available as a carer at a younger age, either living in social housing or paid off their mortgage before they were 50.

I'd still rather be where I am now with an interesting and rewarding career even though I can't retire until nearly 70 and my mortgage will run until almost 60.

Also, bigger distances. It's one thing to have slightly frail elderly person who lives two streets away round for Sunday lunch twice a month, taking it in turns with a sibling who also lives two streets away.

Quite another to have elderly person who lives three hours away, siblings lives five hours away and the weekend is stuffed full of children's activities because you're at work all week.

Lots of factors have changed over the years I think rather than a single one. Many more women have careers and/or inflexible jobs, they have their children later in life, more people move away from their childhood towns, smaller families, people live longer with chronic conditions.

in my own family, mum remembers her grandma being in a home/institution of some kind towards the end of her life in the early 1950s. She had seven adult children, youngest was my grandma, an old fashioned housewife. They all lived locally so each day one of grandma’s siblings took their turn to visit. So they all did one short visit a week, on the bus, for about a year.

My grandma had one child, my mum who worked until she had me and then became a housewife herself. She lived a mile away and my mum did all my grandmas cleaning and laundry after grandad died (grandma was younger, fitter and healthier than I am now!). When grandma got frail in her 80s, mum also did all her shopping and cooking and was visiting her three times a day. Mum was knackered when grandma passed away (UTI I think) after many years of this.

mum has me and my brother. We live 100 and 300 miles away and both of us have worked full time since leaving education including abroad at various points in our careers. Mum has been independent until she’s got frail, but is now dependent on others and the model she’s seen all her life of housewives stepping in to do the elder care just doesn’t exist in modern British society any more.

I went to one, and it was mainly wives/husbands supporting husbands/wives.

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@Kendodd could it be that in the developing world pensions aren’t available to everyone and so the elderly are totally dependent on the charity of the younger generation?

it was only in 1946 that universal the state pension started, so today’s very elderly would have grown up with grandparents who were maybe not getting any pension, whereas the current working population is used to the idea of everyone having a pension.

it’s quite tough being elderly now in some ways, you may have money, but companionship and help over finances and worries that are big to you but trivial to family are much less available.

My Gran looked after all her siblings, my Mum did the lions share of looking after my Gran. Me and my siblings share looking after my Mum.
so many factors, living longer but not necessarily healthier, next generation working longer including the women, having kids in later life, having more bills, higher expectations and yes selfishness.
i struggle to spend time with my Mum as we are not close, she never showed much interest in me even before she got so frail so it’s difficult to suddenly turn into a carer for someone who didn’t seem to care.
im lucky in that she’s not far away and I don’t work an very healthy and kids almost off my hands. No excuse really, except I hate it. This frail shell of a woman who smells isn’t my Mum.