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?

There is a middle ground between waiting for euthanasia to be legalised and prolonged death. You can write a directive while you’re still of sound mind that means you decline any life prolonging treatment if certain things happen- get dementia, have incapacitating stroke, become quadriplegic etc. That means they won’t administer antibiotics/ flu shots/ covid shots etc. Most people in their 80s are on a cocktail of prescriptions so if you decline those you could definitely hasten your death. I fully intend to.

@freshcarnation

My mum died of dementia last week. I've not shed a tear for her. I'm so relieved she has been liberated from the shell her poor little body had become. If I could have given her an overdose of morphine a year ago I would willingly have done rather than seeing her go through her final months.

I didn’t for mine, either. She was 97 and had had Alzheimer’s since her early 80s. For the last few years it was a most pitiful existence, and not much fun for her for several before that - so often anxious or frightened of things she couldn’t even name.

If I could have given her a glass of her favourite sherry and cooked her a nice dinner before tucking her into bed, and then by some magic ensured that she never woke up - before we had to put her through the trauma of moving her to a care home at nearly 89 - I would have done it in a heartbeat.
By then she was not safe to be left alone at all, not even for half an hour, so a care home was the only viable option.

Though I have to say that the care home we chose (after an awful lot of looking) was extremely good, and I might add that it was by no means the most expensive.

@endofthelinefinally

Are you putting in liquid eyedrops overnight? I use an ointment and it lasts all night. Mine is called Hylo night. There are other lubricant ointments as well, Boots sell them.

I am mid 60s. Getting older and needing care petrifies me. I have ulcerative colitis and get monthly infusions of a newer medication that has me in remission. The thought of being in a care facility without my infusions and having a flare up is almost too horrible to contemplate.

@LoveFall

I am mid 60s. Getting older and needing care petrifies me. I have ulcerative colitis and get monthly infusions of a newer medication that has me in remission. The thought of being in a care facility without my infusions and having a flare up is almost too horrible to contemplate.

Wouldn’t any medication be continued? Unless there was a failure of care.

@PrisonerofZeroCovid

There is a middle ground between waiting for euthanasia to be legalised and prolonged death. You can write a directive while you’re still of sound mind that means you decline any life prolonging treatment if certain things happen- get dementia, have incapacitating stroke, become quadriplegic etc. That means they won’t administer antibiotics/ flu shots/ covid shots etc. Most people in their 80s are on a cocktail of prescriptions so if you decline those you could definitely hasten your death. I fully intend to.

There is, people should, and I'm going to do it too.

However, waiting for people to take the initiative and do it isn't going to solve the problem because people don't. Humans aren't great at accepting our own fragility and mortality, which is why the majority of people also don't make wills. This is why we need to think about what the default should be when people haven't previously expressed a preference.

@HardyBuckette totally agree. My mum still hasn’t done hers despite being adamant she doesn’t want to survive a major stroke or dementia . I keep telling her I’m not gonna put a pillow over her face while dsis keeps watch so she needs to crack on with the paperwork.

Could I ask how you go about completing one of these directives please? Thank you in advance.

[quote BarrowInFurnessRailwayStation]@endofthelinefinally

Are you putting in liquid eyedrops overnight? I use an ointment and it lasts all night. Mine is called Hylo night. There are other lubricant ointments as well, Boots sell them.[/quote]
I am allergic to ointments if they have even a trace of petroleum. I have a gel to use at night, but It wears off by 3.00am. I could get up, put the lights on and put more gel in, but I can do the drops in the dark - I keep them on the bedside table. Then I can usually go to sleep again. I usually need to repeat at about 05.00am. Sometimes I can go back to sleep, sometimes I get up.

AlaskaThunderfuckHiiiiiiiii

Great tune! I just don't get why we don't discuss these facts long before (hopefully) it's a painful issue.

The trouble is that societies view of dying really does have to change. In palliative care we are up against a media (daily Mail particularly) who publish awful misleading articles about end of life care… they somehow twist dignified comfortable deaths into nurses and doctors actively killing patients.
You only have to read many threads in here of people concerned about relatives receiving what sounds like quality palliative care and is translated into them being starved, fluids withheld etc when people do not understand the needs of a dying person.
This could be communication issues but most likely what people are fed throughout their lives from society and media horror stories.
I honestly think that elderly dying people with no quality of life are made to live in an even worse state by life prolonging interventions.
The whole perspective needs to be changed because as it is there are masses of people suffering prolonged distressful lives needlessly.

My cousin had terminal cancer...and her body had shut down..and she wouldn't eat...( Like many cancer patients that I have witnessed several times) She accepted her fate, but her sister didn't.

Her sister force fed her ( she was dying in her home) pried her mouth open and she was actually choking trying to swallow.

To me that was the cruelest form of not allowing her sister to pass peacefully. I was outraged. She was attempting to keep her sister alive just for her.

Just writing this post remember those dark days and it still upsets me.

I'm already heading that way, I'm 56 & two years ago started to suffer from neurological disease that has taken the use of my legs, I can just about manage to stagger around the house but need a wheelchair to get around outside. I'm virtually housebound, last Sunday I had a fall in the house, ds couldn't get me up & had to ring my brother to help him to get me up. I'm terrified of what will happen if I have a fall if I'm home alone, I dread to think of what the rest of my life is going to be like.

@Nursejackie1 yes there is little understanding of the process of end of life or what to expect in the final days, even explaining this to the family can fall on deaf ears and they still insist on trying to push food or fluids when they are at risk of choking or aspirating. It’s only for their benefit not the person who is dying. Same does for wanting full washes every day even if this causes pain or discomfort to the person, it’s not for the dying persons benefit, if they are peaceful and settled leave them be

@Marjoriesdoor

Could I ask how you go about completing one of these directives please? Thank you in advance.

Here: mydecisions.org.uk/

More background info and printable copy here: beta.compassionindying.org.uk/living-will-advance-decision/

I think I would be more frightened of a sudden injury or illness that would dramatically and permanently result in a loss of quality of life.
The usual decline that comes with aging is gradual, and our brains have an odd way of acknowledging and accepting that... much like accepting the thought of dying as you get older too.
My grandad died in his late 80s, but always said that if he could have pushed a button to end his life, he would have done it in his early 70s. He always had an active life, and being reduced to sitting in front the TV for all his waking hours was not how he wanted to live, not to mention countless medications to take, and constant doctor appointments.

Yes definitely. My mum worked in dementia care and I visited her place a few times as a child, and was horrified and terrified. I then worked briefly in a care home in my twenties and saw other horrific sights. I was the cleaner and I remember one day a gentleman arrived there with pretty much all his marbles, had beautiful leather driving gloves and letters he’d brought in and other things that showed him as a full person. Within a week of taking the drugs they foisted on him, and eating slop, he was shaking, a quivering wreck and lost all his personality. I think about it a lot and wonder how to deal with it. Not all countries treat their elderly like this and in some countries care homes are wonderful places, where the food is something to look forward to in your old age.
All I can think of doing is drawing up a document with a lawyer while I’m of sound mind saying I would like the right to refuse medical treatment or drugs , and saving like hell for a decent nursing home if it ever comes to that .

[quote SparklingLime]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/[/quote]
Yes, complete an Advanced Directive and give it to your GP and family. Make sure to state that you decline antibiotics if you have advanced dementia, they're one of the things used to keep the very elderly and frail alive.

@SparklingLime

I would hope my Entyvio would be continued but I really doubt it would. It is expensive and has to be given by IV. Having seen how pathetic care was for my parents, I have no confidence in long term care. And this was private pay and expensive. My Dad needed blood transfusions at the hospital and they did not help him get there and back one bit. I could not as I lived hours away.

@Nursejackie1 I honestly think that elderly dying people with no quality of life are made to live in an even worse state by life prolonging interventions.

I agree with this. Once they lost their personality and all quality of life through the drugs, the next stage was to be put on a drip to eke out an even longer existence for the in what was basically a shithole

That’s terrible, @lovefall. What a worry.

[quote Londondreams1]**@Nursejackie1* I honestly think that elderly dying people with no quality of life are made to live in an even worse state by life prolonging interventions.*

I agree with this. Once they lost their personality and all quality of life through the drugs, the next stage was to be put on a drip to eke out an even longer existence for the in what was basically a shithole[/quote]
I also can't help but feel cynical about care homes and the prolonging of life when there is no quality of life.

I’m nearly 50, feel like I’m mud 30s, in love with a guy who is early 30s (he doesn’t know o exist that way) .. I’ve lived over half my life, perhaps another 30 to go. I’m terrified of dying, always have been.

Right. It’s one thing to be put on a drip when you can no longer eat, if you are in beautiful tranquil surroundings, but when you are in somewhere like that with tons of other people you don’t even know, all of whom have dementia themselves ... it’s just too much

Absolutely what you said @Nursejackie1.

I feel upset when patients I'm seeing have families who raise objections to a DNR - a DNR! Without apparently understanding that a DNR is about someone who is already dead.

Talking about moving to palliative treatment seems to be traumatic even when it's a 90 year old who's had dementia for years because 'they still have quality of life', ie they quite enjoy their breakfast. The idea that we have to wait until life is totally unendurable before we can stop treating is bonkers.

My advanced directive is also fairly brutal but having had to fight medics every inch of the way to minimise treatment for my mother, I have become quite cynical about the reality. The fact is, 99 times out of 100 a junior doctor will be hauled over the coals if they don't stick every patient wheeled into A&E with a chest crackle straight onto antibiotics and IV fluids. By the time the team have got the details of my AD from my GP surgery, they will probably already have saved my life. My mother is as protected as I can make her now, but it's too late - she's in an excellent specialist nursing home staring at the TV and her superb physical health could keep her going for a decade.