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?

I begged for my mum to be moved to the hospice for palliative care. They had a bed for her and were waiting for her. The doctor in the medical assessment unit decided she didn't like relatives making suggestions and my mother took 12 days to die, in pain and distress from dehydration, starvation and neglect in a noisy, chaotic, understaffed ward. No nursing care whatsoever, not even any attempt at pain control or mouth care. That awful woman falsified the medical records and lied. I will never forgive that horrible woman.
We didn't want mum kept alive, we wanted her to die peacefully with dignity. I am terrified of suffering the same fate tbh.

@MintJulia

There is no point worrying about something like that because it won't help. You can however, ensure a healthy lifestyle now to give you a better chance of a healthy old age..

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.

Reduce your stress levels, your BMI, your cholesterol level.

It all helps.

My mum and Dad lived like this. Very healthy lifestyle.

Dad dies of dementia aged 92 after over 8 years of poor mental and physical health.

Mum developed Psychosis after his death and has subsequently had very poor physical and mental health. She is now nearly 94 and existing in a care home.

Looking after yourself in earlier life is no guarantee and if anything is a curse for my poor mum who is physically well, but mentally shot. She doesn't have dementia but wishes she did as she knows what is going on but can't do anything to ease her suffering.

TBH, live life as you will and hope it doesn't go on for too long

@PermanentTemporary, @Nursejackie1 Can I ask how you make your advance directive brutal? So far I’ve just ticked remove treatment as soon as no capacity, but are there things I can add myself to make it more water-tight? Many thanks.

very touched by this strand

stay strong, people xx

@SparklingLime I wrote a letter expressing what I wanted, as i thought my.mothers standardised one was a bit useless.

It only matters when you've lost mental capacity to regise treatment but that can be temporary or permanent, or worst of all fluctuating.

I wrote that until my son is 18 I wanted to be kept alive at any cost; then from 18 to 25 some treatments are likely to be appropriate but not if I were not likely to regain mental capacity within a month; and that once my son is 25 I refuse all life prolonging treatment and want palliative treatment in all circumstances without exception even if my loss of mental capacity is likely to be temporary.

I haven't based it around individual treatments because I don't want to risk eg not having painkillers via a tube or whatever. I just want it clearly understood that I am not interested in prolonging my life if I've lost capacity to make my own decisions, and that the goal of treatment should be palliative. When my son is 25 I will be 59.

'Regise treatment' should be 'refuse treatment'

I've worked in elderly care and it is scary to imagine what your situation might be when old. I ended up leaving care work - thinking about this all the time was one of several reasons. I got to the point where I was trying to work out how I was going to lay the house out so I could access everything when I couldn't walk properly! I was only in my 30's.

Im 39, & have been bedbound with a catheter & feeding tube for large parts of the past 15+ years. Social services now pay for 24hr care at home after years in a nursing home.

All I can say is make the most of the little things, I miss being able to bend my knees (mine don't anymore), pull up my own socks, itch (dear GOD I miss that) or being able to quickly get to the loo or transfer into a chair. I miss those little things.

I've been a hoist transfer for years, but I still hate it, I hate ringing a bell for everything I need & having bloody professionals around me all the time, especially as I know some don't give a shit what happens to me. Many do & go out of there way to make my life easier for me, but it's not easy knowing that almost everyone in my life is paid to be nice to me.

At the end of the day it's this or what?

In many ways being out of it & not knowing where I am could be seen as better, but at least I CAN articulate I have an itch, even if no one can scratch in quite the right place, with the correct pressure for the length of time I would do it. It's not much but you have to try to be grateful for what you do what, not what you don't.

I will say it's not always that easy, I bitch & moan quite a bit at times.

You can only forward plan so much, but I recommend everyone takes time while they are young to think about what they would or would not want medically in their future. Tell your friends & family & get a formal advance decision to refuse treatment drawn up.

See compassionindying.org.uk/making-decisions-and-planning-your-care/planning-ahead/advance-decision-living-will/

"An Advance Decision allows you to write down any treatments that you don’t want to have in the future, in case you later become unable to make or communicate decisions for yourself."

It's important because "best interests" often means slogging on till the end & actually, with what I've seen in a lifetime of hospitals & nursing homes, very few would want that for themselves or there loved ones. Do get a balance though, work on maintaining or improving your current health, almost everyone can do something, but don't get so caught up in what ifs & forget to live.

@TrooBloo

Look up dr mark Hyman and David Sinclair. Both talk about different ways to prevent ageing - which is starting to be known as a disease. It’s different to getting older. There are many ways we can look after ourselves to prevent some of these diseases.

@TrooBloo - I listened to a podcast with David Sinclair, it was really fascinating and I have changed up the way I eat based on that. I've always exercised pretty well, and diet was ok, but have been doing intermittent fasting for months now since i listened to him. Was really interesting.

My dad had Alzheimer's when he died and my mother (we're not in contact for very good reasons, not that I don't still worry about her) is apparently showing signs of memory loss. So I have quite a high chance of Alzheimer's. I would like to be able to pick my time of going, who knows how things will turn out, but I don't want to ruin my kids' early middle age worrying about what to do with me, and I don't want to sit in a home not knowing what is going on and never having any peace.

Does anybody know the answer to this question? Is it possible to refuse to go into hospital in the event of a sudden illness? Can you legally turn the paramedics away at the door even if a relative calls them. Can the relative insist you're taken to hospital?

I'm concerned that they ignore my advance directive as well. I absolutely detest doctors and don't trust them one bit after bad experiences and having seen what they do to vulnerable people.

@BarrowInFurnessRailwayStation
For a start, when you feel this strongly, you need to go no contact or low contact with any relative who would disregard your strong wishes in such a way

Hi, I worked in adult social care and palliative care for 25 years, and cared for my 94 year old mum who was fit and active until the last ten years of her life then a gentle not too horrendous decline to a last year in care .
Working in this area you do focus on all the people who are sadly not fit and healthy so your view is a bit skewed but there are very many people who live to a reasonable age in good health.
Saddest of all to me were the young people with spinal or head injuries or those with early onset diseases.
Working in palliative care showed me that there is little you can do to avoid some illnesses. A healthy lifestyle does improve your chances of living well but of course is no guarantee.
Plenty of people I worked with had living wills, advanced directives, plans to go to Switzerland etc and some were able to carry this out .
The people who coped best were the ones who had thought about it and made plans - ie moved early to accessible accommodation near family, understood their condition and their medication etc etc but kept on doing as much as possible for as long as possible
We don’t have a crystal ball - you can’t tell whether you will live a long time in health or not - you may think it is on the future but it may be tomorrow ! Plan for the worst and live for the best possible outcome . Growing old is a privilege that not all of us get! I would also suggest that if this is making you very sad you think of changing to work with children, animals or flowers ! I did.

In answer to the question about refusing hospital treatment or care - yes of course you can refuse everything unless you have been shown to lack capacity to consent or are incapable of consent. Relatives or medics cannot force you to have any treatment. This can be written in to any care plan. It’s an important part of palliative care. It’s really important to make your views known to all who might be involved in your care - I have power of attorney for health and welfare and my husband and two daughters know exactly where it is and what I want. I’ve also written to my GP to out on record my wishes and noticed them of the POA. If you believe in the ‘right to die ‘ then there is a private members Bill you can support or lobby your MP. Apologies to those reading this who may find such an idea abhorrent.

I'm terrified of dementia. I can see what it has done to my grandmother and I just don’t want that to happen - but there's not really anything we can do to prevent it

Many thanks, @PermanentTemporary.

@BarrowInFurnessRailwayStation
For a start, when you feel this strongly, you need to go no contact or low contact with any relative who would disregard your strong wishes in such a way

I can't because it's dh and my adult children who would panic and be unable to cope with an emergency or serious illness. They are my only relatives.

@BarrowInFurnessRailwayStation
Then you need to speak very firmly and clearly to them that if they love you they will respect your wishes. Write them down and discuss
As pp have said, if you have capacity they can't legally make you and anyone who tries is
breaking the law

@marymay62
What if doctors decide you do not have capacity precisely because you are refusing their treatments?
The only way around it is to draw up the document suggested above, alongside lawyers I should imagine

Doctors have way too much power over others. I strongly object to this.

I have a Living Will drawn up by a solicitor and lodged with my local hospital and my GP. It says that if I have lost mental capacity it is my desire that I not be resuscitated, and that I receive no meds other than pain killers in the event of illness. I have said I want to receive fluids.

It also says that if I do have mental capacity they should resuscitate me and give meds in addition to painkillers.

Hopefully this means that if I do lose my marbles my first illness will carry me off painlessly.

Mum had Alzheimer's. When she had a hospital visit at 90 the doctor sorted out a DNAR for her which we kept on he sideboard. Every time an ambulance came or she went to hospital I made sure they saw this. On her last hospital admittance in December the doctor asked if I agreed to her having a PEACE plan. This meant that she would not be admitted to hospital ever again and would be treated as required at home. It seemed like an excellent idea and meant she came home to die without fear of ever leaving her home again.

@freshcarnation

Mum had Alzheimer's. When she had a hospital visit at 90 the doctor sorted out a DNAR for her which we kept on he sideboard. Every time an ambulance came or she went to hospital I made sure they saw this. On her last hospital admittance in December the doctor asked if I agreed to her having a PEACE plan. This meant that she would not be admitted to hospital ever again and would be treated as required at home. It seemed like an excellent idea and meant she came home to die without fear of ever leaving her home again.

We had a similar but unofficial agreement with the care home staff. The sole exception I could think of would have been another broken hip - she’d already recovered from one at over 90.

Hospital is a terrible place for anyone with dementia, when they can’t understand what is going on, or why, ditto any instructions, so they pull dressings off, catheters out, etc.

Re resuscitation, an elderly neighbour was resuscitated after a 2nd heart attack. He told me that the after-effects were so painful (presumably cracked or broken ribs) that he wished they’d just let him die.
He did in any case die a few months later, of a further heart attack.

For this reason I was very explicit with care home staff, that no such thing should be attempted with my mother, who was already over 90, with dementia. They agreed 100% and it was down in her notes,

@BarrowInFurnessRailwayStation

Doctors have way too much power over others. I strongly object to this.

From all I’ve ever heard, it’s often relatives who insist that someone be kept going, when doctors think it’d be kinder to give palliative care only.

Presumably they give in for fear of Daily Mail type headlines - ‘Callous doctors wanted Mum to die!’