So bloody exhausted waiting for someone to die 3

[StiffyByngsDogBartholomew]

Carrying on from our first two threads..
https://www.mumsnet.com/talk/elderly_parents/4967638-so-bloody-exhausted-waiting-for-someone-to-die-2

Well my current view is I hope my relatives would do that for me! How I'll feel when I'm 90 I don't know. I very much hope I don't get to find out.If all the things I value in life are lost to me, I do not what that life to continue. Especially at the expense of my children either in care or worry, or in monetary terms - my savings are far better spent in educating grandchildren than in keeping me alive in a life I hate.

I wish as a society we cared more about prolonging good quality life and less about prolonging life at all costs.

@Choux - that rings very true

OK, maybe this wasn't the thread for it. I'll leave.

Maybe they need a team of people?

And women on this thread are becoming exhausted and distressed with the caring responsibilities which some ageing parents place upon them.

We have to tread a line between support and neglect, and our parents frequently don't realise the terrible burden this places on us.

I've already said I'm leaving this thread, by which I meant I wasn't going to post. I do understand the daughter's point of view being one myself. I'm now hiding this thread.

@Choux your post really resonated with me, so well put. I walked blindly into my caring role almost 10 years ago, when my Dad developed the early signs of Dementia. At that time, he was declining quite gently so it was arranging appointments and medication but along the way his decline has accelerated and my role has expanded exponentially, to include full power of attorney responsibilities and everything else under the sun. Initially I went along with my Mum's assertion that she would never put him into a care home and "we" would look after him at home, but without the benefit of a crystal ball and with limited knowledge of how horrific Dementia & Alzheimer's can be, I had no idea that I was inviting an insidious creep of responsibilities & worry, to the point that I feel that my life is no longer my own, especially as my Mum was also diagnosed with brain damage & Dementia, following a fall/fractured skull, about 5 years ago. Neither of them have the slightest insight into how dependent they are on me and how significantly this affects my well being & quality of life, we are at the stage now where it is just taken for granted that I will simply carry them forwards, even though I may be on my knees.
Sympathy & solidarity with everyone else who finds themselves in a similar boat...

In my case, yes they prefered to take their chances. Then they couldn't pull up their underwear and I had to try and cobble a bit of something together.
Too late, what a mess.

I would just like to say "argh" somewhere it will be heard and understood.

So...argh.

Hope others are doing okay.

I hear you Emma and hope you’re doing ok at the moment.

Argh often feels like an understatement.

@funnelfan Thank you
I had "that" feeling this week....but I don't think we're anywhere near it, just another point of decline, which is so sad

I can't figure out how to separate from it in my mind most of the time. There's no point dwelling on it but it hangs around, it's like trying to escape your own shadow sometimes.

Yes but these threads go a bit wrong don't they
so you always have to be careful

Same IRL

I remember telling someone dad was dying (his and my opinion, we had doctors who wouldn't say it, though I now wonder if they were doing us a favour till a hospice place came up) and she said "nooooo, don't say that, he could have another ten years"

Why in the name of all that is good and decent, would you want someone to live another ten years in that condition?! And this lady had seen it with her own eyes! I know it's awful to lose a friend of course, but I just stared at her in horror. It seemed utterly mad.

MIL lived for nearly 9 year after a stroke that left her hemiplegic, non verbal, incontinent and with seizures. Over 10% of her life. I wouldn't wish that on my worst enemy.

Is my biggest fear for my mother that her gradual decline ends up like that for years. My MIL on the other hand clearly only has weeks at best. While her recent cancer diagnosis has been a huge shock, I am glad she (and DH) won’t have to face the heartbreak of years as a shell of her former self. It just feels too soon for MIL, even though she is on her eighties. I suppose it always is too soon, whatever your age, if you’re in good health.

My DM’s GP told her she might live to 100…another 15 years, which given her huge decline over the last few years means she would spend many, many years bedbound and probably mentally gone as well. Why he thinks this is a positive I have no idea…it horrified me.

There are plenty of people who think “where there’s life there’s hope”, and some of them are doctors.

In the other hand i was speaking to someone this week who has worked for the nhs for 30 years and they were firmly in the camp that a “good death” is an important part of a good life. I’d hope anyone that works in elderly medicine is in the latter category.

It's heartbreaking so many of us going through this. This forum is a lifesaver, thank you to all those who contribute,especially with advice and wise words. It's so incredibly hard.

To be fair, it must be very hard to say "actually, you're going to die imminently", although I would have hoped doctors have at least some training/practice to do this. The doctor that delivered the news to us/Dad did it quite sensitively, although didn't actually use the word "die", it was "there is nothing we can do now except make you comfortable". Dad was with it enough to understand what he meant immediately.

DH is going through it at the moment with MIL - the Macmillan nurse tried to broach the topic with her last week but MIL got upset so the nurse stopped. DH wants to know what to expect though so may collar the nurse in the corridor on her next visit. The doctors seem to have been a bit unwilling to be explicit on MIL's prospects, and DH wants to have an idea. If nothing else because he needs to tell work whether he's going to be away from site/WFH etc for days, weeks or months.

Posting from mum’s

long talk about how she wants to die, followed by talk that makes it clear she doesn’t mean it

i asked her to talk about something else please but got told I’m the weird one and I should be stronger so I can have these conversations.

Oh @EmmaEmerald. [Handhold]

I guess there is a silver lining to mum being mostly nonverbal! Today I burbled about tulips to an unbelievable extent. But it's cheerful burble for me anyway.

@EmmaEmerald I had similar last weekend. My DM kept saying how she wants to die and that shes had enough.

From autumn 2020 to April 2022 we've had three potential EOL situations for my Dad. My Mum has swung from being overly dramatic about how ill he is to being overly dramatic about how healthy and lucid he is. He's gone from having mobility problems and being able to understand and communicate to being completely immobile, unable to feed himself, move, and I'm not sure if he recognises me at all (although if I say to my DM I don't think he recognised me she'll insist he knew I was there... she did this even when he'd slept the whole way through the visit and couldn't possibly have realised!).

IME docs tend to go for a... I was going to write a "worst case scenario" about him dying but actually the last time I was at the point that I was sad when he covered because it meant we were going to go through it all again at some point. I was more prepared for and at peace with the idea of him dying than I would have been about the prospect of him still being alive but in a terrible way two years later.

Dad used to go on about how he'd prefer to be euthanised although didn't actually do anything about it and has left completely garbled EOL instructions.

Solidarity with everyone else going through this.

Thanks all

I've been listening to this for ten years +

we had a another near miss this week but honestly, we're on number 17 or something.

sorry not to reply properly

home now so going to try to find a way to clear my head.

I found that if you ask a very direct question of the nurses they seem to be more willing to be honest then the Dr's do. I asked one how much longer DGdad would suffer for and was told he had a couple days. The nurse was so kind to tell me honestly as I needed to prepare myself mentally for it. She did say its up to god but my feeling is he won't be here on Monday and that was the case. I'm hoping that when DF is nearer the time someone will be kind enough to be honest again. He is deteriorating and his communication has disappeared again, time before last when I saw him he was standing over me angry and wanting me to get him moved, last visit he was just staring into space and no balance when he tried to stand.

The need to be moving constantly seems to have gone as he just sits or stands now. A couple months ago he wouldn't stay still and would just walk around constantly or stand up and sit down every couple minutes.

I plan to visit again next week (I live 130 miles from parents) I think sometimes I notice the change more as I can't get there as often