Anyone else slightly frightened of being elderly and losing quality of life

[Donewithit888]

I work part time in care, and whilst it's very rewarding it depresses me slightly.

A large number of our clients are essentially existing rather than living, people who've had strokes and are now bedbound, no pastimes other than watching TV day in day out. Having to be hoisted in the air several times a day just to use the toilet or get changed.
Incontinent, no awareness of what's going on in their surroundings.

Houses that are absolutely filthy and filled with clutter as they aren't physically capable of cleaning them and don't have local help. Living in one room permanently, rarely seeing the outside world.

Asking your name for the umpteenth time as short term memory issues.
No longer able to feed themselves in some cases.

Being looked after by certain 'carers' who couldn't care less and would rather be anywhere else.

Every time I finish my shifts I pretty much pray to myself that I don't end up that way, but I'm sure the service users also felt the same way when they were younger and in better health.
Just seems to be a bit of a lottery really, we can live healthy lifestyles and look after ourselves but nothing is guaranteed.
Not really sure how you stop thinking like this?

@GETTINGLIKEMYMOTHER yes I see it every day and usually in the case of the person with dementia it’s the family who want to keep them alive, for example, always wanting antibiotics for pneumonia or utis when realistically it would be kinder for nature to take its course. Pneumonia wasn’t called the old man’s friend for nothing

I think I would seriously be considering a trip to beachy head (or similar, kind of a metaphor really) if I still had capacity and physicality to do that, obviously

"I found that nobody seems to be allowed to pass away from old age anymore. They are taken into hospital , pumped with drugs, resuscitated etc, all to be sent home for more miserable weeks/months/years."

But you can with a DNR. You can refuse meds as well. My family genetics are good. They've all been 'well' until they've died, still living at home. They've all been smokers and hard drinkers, but worked still, after retirement. That generation still had natural selection, though.
Statins, blood pressure meds etc are great, but they do prolong life and after some of the things said during Covid, we do seem to have lost sight of a natural age of death. I think that we should all consider how we want things to be while still in our 50's. The problem is that we need our families onboard with our wishes.

Agree that an advanced directive is the way to go. To be honest it's almost the only control we have. Yes we can attempt to be virtuous with diet and exercise. My fil is in his 70's and becoming more dependent on us. It is stressful as we both work full time and have children. My fil lives in a big cluttered house, no will or advanced directive, we keep asking him while he has capacity, to sort this out with our help but he won't, to morbid! That will leave us alot to organise.

I work as an NHS nurse and agree the lengths we go to keep elderly people alive is cruel. Lots of patients and relatives will just not accept that sometimes palliation is so much kinder. We now have alot of elderly patients in my ward who have undergone life changing procedures and will never return home or will die as a result of their surgery. So many patients/relatives won't even discuss do not resus orders it is devastating. We don't have the care available these people need either, as we make them more dependent.

I have an advanced directive. I have seen the value of these in a younger patient who had years of chronic ill health. I was initially upset as I knew a procedure we could offer would reverse her issue. This patient and her family explained she had already been through so much and did not want any more intervention that would change her quality of life. whilst this was upsetting she and her family ensured she had a dignified and peaceful death. I was there throughout and can attest to the benefits of an advanced directive.

Cut right back on alcohol, cook from scratch, eat lots of fresh fruit & veg, oily fish, wholegrains, reduce sugar intake, get plenty of exercise. Don't smoke or vape.

You’ve just described my parents’ lifestyle. It worked for my dad, who died following a broken hip at 99. Sadly my mum’s genes did for her and the healthy lifestyle made no difference when dementia claimed her. My closest friend has volunteered to see me off if I get it.

I have concluded that the tricky bit is working out the right time to pop those pills. All things being equal I think it's the 80th birthday if I make it that far.

80 would have been too soon for my mum. Her 90th birthday would have been a good call in hindsight.

The idea of ending up in care and not even being able to shower or toilet myself horrifies me.

I won’t lie that sometimes I hope I die from a massive heart attack or stroke around 80 with no hope of resuscitation or letting me linger in ICU.

My parents are 70 and while I obviously don’t want to lose them yet I sort of hope something similar happens to them (not that I’d tell them that of course). Their sudden death would be more shocking but I think once your parents hit a certain age you know their time is limited.

@halfsiesonapotnoodle

It's very, very scary. I am definitely going to drastically downsize, declutter and live very simply as I get older, in part due to the horror you describe OP of living conditions. I don't want my children to deal with that. I'm 51 and have started on HRT mainly due to the significant protective effects of oestrogen in reducing cognitive decline and osteoporosis, amongst others.

Funny you mention decluttering and downsizing. My mum is a hoarder and my dad is a bit partial to picking up a ‘bargain’ too. Their house is a mess

Due to the clutter there is years of maintenance needed on their house. They have plenty of money to do work on their house but it’s just too hard. I shudder to think think how long it will take me and my sister to clean up.

Mid 40s chronic health condition with worsening mobility.

Had I the money I would be paying a deposit with DIGNITAS now. Sadly no money means you have to suffer in a way you would never let your pets suffer. So I am investigating making my own provision.

I have my Dc 3 nights a week and I'm struggling to care for them but there's no help for them or me already. Ex refuses to get divorced and so I theoretically own substantial assets which I have had no access to for years so I am not entitled to help. Every day I worry about what's coming next and what my way out is going to be.

I feel already there is a real risk I will be left homeless with no real mobility.

Both of my parents have died. My dad died at 74 after a massive stroke and my mum died three years ago at 87. She had had poor health for a while but was generally very cheerful and her mental capacity had been very sharp but we'd become worried about her as she had started to show some signs of dementia. She had moved into a retirement flat a few years before she died and had loved it. One evening she said to me that she didn't think she could look after herself for much longer and we'd have to start thinking about residential care. That night, she collapsed and was taken into hospital. She died three weeks later. I was absolutely heartbroken as I loved her so much and still feel her loss very keenly every day BUT I am so glad for her sake that she didn't have to suffer the indignity of slowly losing her mental capacity and didn't have to live in a care home.

I am a health care professional often involved in end of life decision making in critical care.
The single biggest thing you can do is discuss your wishes with your loved ones.
I know its uncomfortable, but talk about this stuff with your aging relatives. Find out what would be acceptable to them and the outcomes they wouldnt want to live with. Talk about it as a family so all the siblings are aware of their parents wishes.
The decision is always made by the clinician but we are increasingly guided by family opinion. Its really difficult when this stuff has never been discussed.

I think quality of life is so key. I wouldn’t want to live to 90 if it meant poor quality of life. The problem is it would be very hard to know when to do something like voluntary euthanasia.

The other thing I have seen with elderly relatives is a reluctance to put in place measures that would allow independent living until it was too late. My parents are in a house that will be totally unsuitable in their older years. If my dad dies, my mum will be straight into assisted living as she wouldn’t manage on her own. If they’d moved to a bungalow she’d have a better chance.

"I found that nobody seems to be allowed to pass away from old age anymore."

My dad died from 'frailty of old age' at 83. It took 15 months, by the end of which he was about 6 St soaking wet, completely bedridden, doubly incontinent and blind. He couldn't feed himself (pureed food) or drink (thickened liquids) unaided, was often in pain with arthritis and constipation and had bouts of agitation and delirium in between which he was completely compos mentis and aware of what was happening to him.

Frailty seems to be perceived as someone being a physically feeble and wasting away quietly.

Medical practitioners aren't that interested as there's nothing they can actually do.

We were turned down for hospice care on 3 occasions and there was no support from charities because they only deal with a formal medical diagnosis.

He spent the last 7 weeks of his life in a care home where our visits were strictly limited despite his being on end life pathway. We battled with the home and they finally agreed to daily visits on the Thursday. He passed away in the early hours of Sunday morning and we didn't make it on time.

Believe me dying of old age might be the ideal if it's peacefully and suddenly in your sleep, but when it comes like that it's no picnic.

@VeryMuchFlaggingMinty

I can't think about it.

I helped nurse my dad through 15 months of end of life care during the pandemic until May last year. Had to give up my job and now struggle to find something else that earns enough whilst being flexibly enough to be there for my mum.

My mum is nearly 83, can't cope emotionally and her physical health is declining. Our relationship, which was already challenging, has worsened due to the stress of my dad's decline and loss and I have no idea how I'm going to manage this for potentially several more years.

I'm probably one of those 'carers who really don't want to be there' in your opinion. I've lost 3 years of my life already to caring in incredibly challenging circumstances and I'm resentful, frustrated, exhausted and terrified for the future.

I'm terrified of inflicting a similar scenario on my daughter and her feeling the way I do now. I only hope euthanasia is an option by then.

I'm a bit like you - my dm was ill for 18 months before dying late last year, before that I'd been helping care for my grandmother, and now DF is ill. I too am a "carer who doesn't want to be there" although fortunately I don't have to do full time care.

I hoped to spend this time of my life travelling and having spontaneous weekends away now the dc have left home and I feel resentful that most of the responsibility falls to me, then I feel guilty for feeling resentful!

I worked in care homes as a nurse for nearly 30 years and I wouldn't put a mangy dog in one. They're absolutely horrendous places with staffing levels way too low to meet anything more than the most basic needs of the residents and sometimes, not even that. Lazy, stupid and uncaring staff are also a problem. Not all of them, but a significant percentage, and this includes the qualified nurses and managers.

I also suffer from allergies and chemical sensitivity and these places are run on air fresheners so I physically wouldn't cope in one. I had to give up working in them because of it. The reaction I get is extremely painful because of sinusitis - think brain freeze, only for hours or days 😖

I have an advance directive to refuse treatment should I become ill and I'll just let nature take its course. I don't attend any health screening. Failing that, I'll do myself in if I develop dementia or a slow degenerative disease. I have stuff ready.

I'm all for assisted dying. Not all people want to live out their months and years in pain, indignity, fear, boredom and neglect. People should have a choice.

It worries me, though I try not to think too much. Sometimes I wish there was a button you could just press when you've been alive a long time and your quality of life becomes unendurable to end it all!

My granddad lived to his early 90s and honestly, even though his health wasn't too bad when it got to the stage he couldn't go on holiday anymore or be sure he'd make it out to anything from one day to the next I really didn't want him to have to live too long like that. My grandma is still alive and now in early stages of dementia and losing her eyesight - and honestly hope something quick comes along and takes her as things can only get worse for her.

Honestly, I kind of hope I don't live beyond my mid 80s at the oldest. I have a health condition that means I won't be a super-healthy oldie going to the gym etc and probably won't be very mobile.

Interesting thread. I’m another with EDS and arthritis as well as a physical disability. My father had just been diagnosed with Dementia, he is v early 60s.

He got his diagnosis less than 6 months ago and one of the first things he did was get POA set up for his finances and his health (which I have co signed).

He’s a bit vague but nothing major at present. Makes jokes about being a vegetable next weekend etc. We haven’t had in depth conversations around the future, but I’m sure he has done so with his wife, my step mother.
It’s a conversation that is obviously needed, but a tough one to have. We have skirted round it and touched on it but I would be happier if I knew exactly what his thought processes are on going into homes and quality of life etc.

I’m very much of the mindset that I want to go before I’m reliant on a stranger to take care of me more so than I already do, my husband does a lot of my caring already. I already use a wheelchair, can’t drive for long distances, suffer pain every day. It’s bad enough as a 30 something year old having a body that already limits me so much, I’m not sure how much further I can deteriorate before wanting to draw a line.

I love a good old apocalypse film, I regularly say to my husband-if that happens please smother me with a pillow…anything that involves having to move quick or enduring any extremes where I couldn’t access meds will quickly finish me off or I will get to the point where actually I won’t be able to function anyway.

Having said that, there is the aspect that your mindset may change over time, what you want now may change in the future.

I do very much not want to be at the mercy of strangers. That for me, right now, is nightmare stuff and I mull it over much more than I should.

It's so difficult, one of my parents was in hospital recently & between myself & siblings one of us was there each day helping them. I often fed other patients because they were just left to it. I'm scared to be in that position.

Agree about decisions before it's too late, my parents haven't decluttered or downsized in their 70s & now their health is failing it's too late as they like the security of what they know.

@flounfer

My parents (mid-late 70s) are the same. Large, cluttered house and double garage, very rural, big garden. Apparently before Covid they were starting to talk about downsizing and decluttering, but after two years of being at home and really appreciating the space / garden / etc. they seem to have swung the other way.

Thank you for starting this thread, OP. I am worried about this, having cared for relatives in the final months. It has prompted me to finally get on with starting to make an Advance Directive (living will), which I’ve just found you can do online and save as you go (or print a paper copy to fill in):

compassionindying.org.uk/choose-a-way-to-make-an-advance-decision-living-will/

After truly horrifying experiences in my nursing career, I put in an advance directive at the age of 29. I do not wish to live if my quality of life is reduced. My family are all aware of my wishes and in agreement. My Mum did one at the same time and ensured I am power of attorney for her health and welfare. My brother is considering the same after a brush with death when he caught covid. He is still on oxygen 18 months later and his quality of life is poor.

In my job, I am very involved in palliative care and ensure every single one of my patients die with dignity. I struggle with families who want to prolong life rather then ensure comfort, it does not make sense to me. That is their wishes though, I do wonder what the actual patient wishes though.

We are early 60s and I declutter regularly, and am considering downsizing in the next 5 years. We are at the moment very healthy but obviously that could change.
The thought of being in a care home/ immobile/ with dementia appalls me, and I hope I die well before that. I'm a member of Dignity in Dying and pray the law changes over the next few years.

My parents are both in their 80s with dementia that started around the age of 80. Still relatively mild but they have daily meds visits from carers to ensure tablets are taken. The cost of this is going up by 1/3 in March (I think because they are self funders and they are now subsidising council care costs) and their care needs are going to ramp up as their dementia and frailty progresses.

Having seen their life now - the boredom of never going out, the inability to keep their home clean and prepare quality meals for themselves, the fears they have that they are vulnerable, the worry that the other is getting worse, might die soon and leave them alone - I want to die by my own choice when my health seems to be reducing my quality of life too much.

Looking at my parents I think that is at the age of 80. Unless I have a double helping of the dementia gene and it starts earlier than theirs did. That is my fear.

@coloradoqueen I'm sorry you're in a similar boat.

I left a controlling marriage in 2016,my daughter is nearly grown up and will be off to uni next year.

I'd hoped to resurrect my original career path, rebuild my social life and be dating or in a new relationship, doing some fun things and going on holidays, maybe an OU degree.

It's shit...and it wouldn't be so bad if my mum had a decent quality of life but despite being in adequate health and comfortably off she will not take advice or help herself and is constantly moaning and irritable...I'm the punch bag