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?

Yes I agree. The doctors I spoke to over the last few years were very understanding about our wishes not to have any treatment that would prolong life. You have to be very explicit though about the fact that as next of kin you don't want your parent to have treatment

@BarrowInFurnessRailwayStation

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.

You have the right to make an ‘unwise’ ( or wise maybe, in your case if you you don’t trust doctors) decision if you have capacity....without capacity a decision such as whether to take you to hospital would be made in your best interests....regardless of your advance decision....once you had been assessed at hospital then your advance decision would be taken into consideration if appropriate....a paramedic would not leave a person without capacity at home if they are deemed at risk

[quote Londondreams1]@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[/quote]
That is not how capacity works...assessing capacity always starts from the point that someone is deemed to have capacity unless proved otherwise....capacity is decisionand time specific....if you can understand the information relevant to the decision, retain this information, use this information as part of your Decision making and make your decision known ....then you have capacity.

[quote Londondreams1]@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[/quote]
Oh come on, if you keeled over unexpectedly, say choked on a piece of steak, or fell down the stairs, would you expect your children to just sit around watching you die horribly, without calling an ambulance, “because it’s what she would have wanted”? Nobody would do that. She doesn’t need to go no contact with her entire family because they probably wouldn’t go along with that, unless there is a massive backstory.

(An advance directive would be followed even if her children called an ambulance- I’m not debating the rights and wrongs of going into hospital or staying at home, I’m specifically addressing the “go no contact “ advice).

I would rather go to Switzerland than live with Dementia

I totally agree but I don’t think Dignitas will take someone if there’s any suggestion that they lack mental capacity.
I would like to have a stash of pills but I have no idea how to go about getting hold of them.

So many misapprehensions regarding dementia. This is a free course, and the research of this and other universities shows clearly that there are lifestyle changes that can greatly reduce the risk of developing and/or progressing dementia.

www.utas.edu.au/wicking/preventing-dementia

[quote milkyaqua]So many misapprehensions regarding dementia. This is a free course, and the research of this and other universities shows clearly that there are lifestyle changes that can greatly reduce the risk of developing and/or progressing dementia.

www.utas.edu.au/wicking/preventing-dementia[/quote]
Does it tell you how to change your genes? Because that’s the only way I’ll dodge it.

Does it tell you how to change your genes? Because that’s the only way I’ll dodge it.

It is a while since I did the course, but from memory even with the ApoE4 gene there are ways to greatly reduce the risk and often completely avert it.

As far as I know, this is the only longitudinal study of dementia, in this case, Alzheimer's:

en.wikipedia.org/wiki/Nun_Study

I read the book years ago, and I'm sure the study has come up with some more findings, but the things that stood out were education level and exercise (walking).

Here's a list of the modifiable risk factors/areas for dementia prevention:

www.thelancet.com/journals/lancet/article/PIIS0140-6736(20)30367-6/fulltext

I find it odd that most talk of the elderly, I’m nearly 60, 3 years ago, had ( and have ) hormonal depression, I cried a lot aches, felt awful no give, luckily right anti depressants, now full time, and now being bi polar 3D eye issues.
Difficult going out, no give either, and all this after crap menopause, I’m just hoping right drugs will sort.
There are thousands with severe mental health issues, causing life grief.
Hopefully careful monitoring will give right to die.

@freshcarnation

Yes I agree. The doctors I spoke to over the last few years were very understanding about our wishes not to have any treatment that would prolong life. You have to be very explicit though about the fact that as next of kin you don't want your parent to have treatment

A childless aunt of mine, in her 80s with at least moderate dementia, had one UTI after the other - she was prone to them anyway - and eventually I was phoned by the (very good) care home to say that she had the umpteenth UTI and was refusing food and drink. Did we want her taken to hospital for drips, etc., or left at the CH where she would almost certainly die, but where they would keep her comfortable.

It was a horrible decision to have to take - on my own - since all other relatives were away and out of contact - so I could only ask the GP what he’d do if it were his much-loved aunt.

He said given that it was only going to happen again, probably quite soon, he’d leave her where she was, where they’d keep her comfortable,
I had already felt strongly that this is what the aunt (her former self) would have wanted, so that was what happened.

I sat with her a lot during her last days. She was nearly always sleeping but as I saw, she continued to refuse food and drink, closing her mouth and turning her head away, and it was never forced.

Staff were extremely kind and attentive and she drifted away quite peacefully after about a week.
I’ve never regretted the decision - I’m quite sure it was what she’d have wanted - if she’d still been able to speak for herself.

Kitkat151 is spot on . Read up about capacity everyone m. Make your wishes known. Don’t stack pills against dementia - by the time you’ve had enough of life enough you”ll have forgotten all about it ! Just chill and enjoy this life now as best you can ! As one 94 year old said to me ‘I don’t wish my life away despite the pain because you are a long time dead and I still want to see the trees’

My heart goes out to those with illness or injury, but if you are able, maintaining a healthy lifestyle helps.

A couple of years ago my weight spiralled, and I wore clothes to hide the bulges, puffed when climbing stairs...etc etc.

One morning, I decided enough was enough, joined a gym and lost 7kg... I'm 63... deadlift 115kg and flat bench press 70kg... it's done wonders for my health and state of mind. It's very liberating, I no longer think of myself as the grey haired granny waiting for God.. especially since I can lift more than some men! :)

You have the right to make an ‘unwise’ ( or wise maybe, in your case if you you don’t trust doctors) decision if you have capacity....without capacity a decision such as whether to take you to hospital would be made in your best interests....regardless of your advance decision....once you had been assessed at hospital then your advance decision would be taken into consideration if appropriate....a paramedic would not leave a person without capacity at home if they are deemed at risk.

This is not quite correct. The whole point of an advance directive is to make decisions about your future healthcare for times when you don’t have capacity. An advance directive only applies when you no longer have capacity. If the paramedic is satisfied the AD is authentic, valid and applicable to the current situation they will follow it. This may involve talking to a GP/exploring other options.

Those without capacity who don’t have an AD we would make a best interests decision. In some cases that may also involve not taking them to hospital.

@BigYellowTaxiT
Exactly, there’s no point people coming on here with an authoritative tone saying your wishes will be respected ‘as long as you have capacity’ when
a) for many, the very fact you are refusing care is a sign you lack capacity (the witch’s dunking stool so to speak) — and so it opens a can of worms about on what basis ‘capacity’ is assessed and
b) the documents we draw up in the hope we will be listened to (whether we have capacity or not) are designed to pre-empt the eventuality of losing capacity. People could even say in retrospect ‘well how do we know she had capacity when she drew up the document?’ As bizarre as that sounds it’s seems feasible.

@ParkheadParadise

The memory of my mum I had for a long time after she died was of her standing at the door of her care home with her coat on and a doll in her arms waiting on a bus to take her to her Mammy 😥😥 crying because she couldn't find her sisters and brothers. When I tried to comfort her she got very upset because she didn't know me. My mum brought up 6 of us and 21 grandchildren. She was the one person I could turn to with any problems.

NO ONE SHOULD END UP LIKE THAT SHE WOULD HAVE BEEN HORRIFIED HOW HER LIFE ENDED

You reminded me of a poor woman in my DM’s (dementia) care home. She was in her 80s but so often very distressed and crying because her mother didn’t know where she was, and would be so worried. On one occasion she was also terribly worried about ‘the baby’.

It was heartbreaking to witness, as I often did. The staff were very kind and did their best to comfort her, but even the ‘love lies’ - i.e. telling her that it was Ok, her mother had been told where she was, did very little to help.

IMO any ‘striving to keep alive’ anyone in that sort of state, verges on barbaric cruelty.

My heart goes out to anyone with parents going through this.

Me and my dp are both 70. Both dementia free so far! Long may it continue! But I know there are no guarantees and no way to ensure we don't get it later. I'm not going to worry about it!

My Mum is in her mid nineties and I have watched as her life has reduced to the point that she lives in one room, being helped out of bed and into her chair in the morning and back to bed again in the evening.

She has several carers a day and family to visit every week, but constantly complains about being bored and lonely. She has 20 tables a day to keep her alive, but for what?

It is my idea of a living hell.

@freshcarnation I read your post about your mum with interest. My mum has advanced dementia and visiting her is absolutely heartbreaking. She lies in bed most of the day either sleeping or looking up at the ceiling, she has now started to struggle to swallow. Basically she's just had enough, I wish I could allow her to be at peace and go in a dignified way. It's what she deserves. I don't feel awful to say it will be a blessed relief when she is finally set free from this wicked disease.

beta.compassionindying.org.uk/living-will-advance-decision/

mydecisions.org.uk

Op its desperate. I had it with my dad. Bedbound and end stage stroke. Feel for anyone with sick parents. My mams health quite good

I'm a bit worried about my memory. I'm only 45 but I've been taking Aripiprazole 30mg, an anti psychotic, for 10 years now for Schizoaffective disorder and I've just learnt that apparently taking it for that long can affect your memory.
I'm definitely quite forgetful of things. I hope it's not permanent.

3 of my grandparents died with dementia.
My Grandad had vascular dementia and was well cared for by my Nan, he was always very happy despite his short term memory. Certain memories preyed on his mind from wartime & he had to keep being reminded that his older brothers had died which upset him, but generally he was ok. He lived with dementia for over 10 years before dying of heart failure aged 89.
My Nan, his wife, was determined she wouldn't get dementia, it became an obsession. In the end she got very paranoid, & developed psychosis which turned out to be part of Lewy body dementia and she had to be sectioned by a policeman at the age of 91.., it was awful. But once medicated in the EMI Unit the psychosis began to wear off and her happier old self started to reappear albeit with memory loss. Sadly she died of aspiration pneumonia before the section ended. I feel that what happened to her in her last year was tragic really.
My other Nan was just pleasantly forgetful for a few years with a mix of Alzheimer's & Vascular dementia .. she was in a Nursing Home for a while where she was in a wheelchair, she had a very placid temperament & the carers liked her. She died aged 91 of heart failure & COPD.

I feel that I may get dementia but I do know I don't have the same risk factors as all my grandparents.
For example I don't drink or smoke and my diet is more healthy although I need to do a lot more exercise.

The thing I dread in old age is becoming very physically disabled but still being of sound mind, like having a bad stroke.
I worked on a stroke rehab unit as an HCA when I was younger and it left me with a healthy fear of having a stroke.