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Elderly parents

So bloody exhausted waiting for someone to die 4

656 replies

StiffyByngsDogBartholomew · 25/11/2024 10:14

continuing from our last thread

www.mumsnet.com/talk/elderly_parents/5036546-so-bloody-exhausted-waiting-for-someone-to-die-3?page=40&reply=140073671

OP posts:
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7
TheShellBeach · 07/12/2024 13:02

@Guineapiggiesmalls I'm so sorry about your mum, and furious on your behalf that she's been sent home like this.

On Monday, ring the GP and ask for an urgent referral to the district nurses. Also ask the GP for end of life medications to be prescribed, so you've got them there when they're needed.

It's shocking that this has happened.
Flowers

TomatoPotato · 07/12/2024 12:28

Gosh, that sounds terrible @Guineapiggiesmalls and yoiu’re definitely in the right place.

Given the seriousness of your Mum’s condition I think you need to be impatiently waiting. We’re here to provide a shoulder and a safe space to let off steam x

Guineapiggiesmalls · 07/12/2024 09:53

I don’t know if I’m even in the right place

My lovely mum has had a diagnosis of lung cancer (stage 4) for the last 2.5 years and has now been diagnosed with an untreatable brain tumour. And promptly sent home from hospital.

We are patiently waiting for a care package but at the moment, are cobbling 24/7 care between me and her siblings. I’m an only child and she desperately doesn’t want to go into a home,

I hate myself for thinking that it would be merciful for her to have a heart attack in her sleep but don’t know how long we can handle being carers as well as working full time with my own young family.

TheShellBeach · 01/12/2024 12:59

Sorry to hear you're not well @PatchworkOwl
It's such a difficult and emotional time.
Flowers

TheShellBeach · 01/12/2024 12:57

Be good to yourself @Facecream24
You can't be everywhere at once.
Flowers

Facecream24 · 01/12/2024 12:48

So today we had kids activities cancelled last minute and had a free day to put the Xmas tree up. Pangs of guilt that I instead didn’t go to visit DM with my newly free day. I’m going to help put hers up next week but can’t help with the guilt of being a crappy daughter because I’m not there every day and worried about her increasing confusion about things. I’m tired of feeling guilt but at the same time can’t bring myself to spend more time with her when trying to balance full time work, kids and that two hour round trip.

TomatoPotato · 01/12/2024 12:33

Oh you poor sausage. Try to keep going on automatic pilot as much as you can and then try to arrange a couple of days to yourself when you can let everything out x

PatchworkOwl · 01/12/2024 11:13

TomatoPotato · 27/11/2024 18:53

You might find you get quite poorly with a cold/flu and have to stay in bed for a while. It’s similar to when people work hard up to the holiday and then become ill as soon as they get on the plane (my DH does this all the time). It’s your body’s way of releasing the tension, the emotion and the grief. Look after yourself 💐

This is exactly what has happened! As you predicted, absolutely floored with some kind of winter virus. Can't stay in bed as the DC are still young and DH is working but trying to rest as much as possible, around arranging the funeral and so on.

AInightingale · 30/11/2024 15:46

Yes @CaveMum. The Canadian situation does sound horrific and no way would we want that.

AgitatedGoose · 30/11/2024 14:35

@StiffyByngsDogBartholomew I agree and imagine there’ll be a lot of delaying tactics. The unfortunate individual will still get the long, drawn out and torturous death.

TheShellBeach · 30/11/2024 13:46

The trouble with including dementia patients in the future is that it'll have to be their loved ones who make the decision.
I can't see any government passing that sort of legislation. It would be too open to abuse.

CaveMum · 30/11/2024 13:38

@AInightingale i think some people have the concern that it’s a foot in the door. They worry that whilst dementia sufferers are not included now, they might be in the future - it’s far easier to amend an existing piece of legislation than to write a whole new Bill.

AInightingale · 30/11/2024 09:34

Is it me misunderstanding the provisions of this bill, or are people opposed to it just being (wilfully) obtuse? Twitter last night was full of references to dementia - the Scottish politician Neale Hanvey wrote this:

After my mum passed away, my dad came to live with us. Over the following four years his care needs eventually became unmanageable at home and he was placed in a local care home, just around the corner. His final two years were during the pandemic and he slowly withered away to a tiny frail and helpless soul. The nurses at his care home were phenomenal, kept him clean, safe and comfortable and kept us regularly informed. I am forever grateful that they were able to let me sit with him in his final hours until he gently passed away. Never once did I consider that killing him would be a ‘kindness’. That level of end of life care should be available to everyone, but legalising state suicide or murder will render that less and less possible. Killing vulnerable people is not progress.

It's been made clear that the bill will not apply to people who have lost capacity to consent! A 'frail and helpless soul' cannot administer a lethal dose of life-ending drugs to themselves. I understand that people are uneasy that the law, if passed, will be modified or amended over time to include them (like Canada's), but these deliberate misinterpretations are really annoying me. Anyway, rant over.

BeyondMyWits · 30/11/2024 08:12

CaveMum · 30/11/2024 06:06

Totally agree. I’m not sure how on earth a high court judge will have the time to review these cases when the criminal justice system is already so gridlocked.

It will be someone's full time job, I imagine. Won't be the high court judge... they'll be the rubber stampers. The juniors will have the heart-rending, time-consuming, reviewing to do. 3 piles.. Yes, No, Above-my-pay-grade.

Will there be an appeals process, or are people expecting, "I want to die, it is my right for someone to help me" to end up as just a rubber stamp process anyhow.

CaveMum · 30/11/2024 06:06

StiffyByngsDogBartholomew · 29/11/2024 21:37

Having extensive experience with the justice system I do wonder how long it will take for the high court judge to be available to counter sign the agreement. Because if it's anything like the criminal courts the people will be long dead

Totally agree. I’m not sure how on earth a high court judge will have the time to review these cases when the criminal justice system is already so gridlocked.

TheShellBeach · 29/11/2024 21:40

StiffyByngsDogBartholomew · 29/11/2024 21:37

Having extensive experience with the justice system I do wonder how long it will take for the high court judge to be available to counter sign the agreement. Because if it's anything like the criminal courts the people will be long dead

Also to get the doctors to agree to sign the document in the first place.

StiffyByngsDogBartholomew · 29/11/2024 21:37

Having extensive experience with the justice system I do wonder how long it will take for the high court judge to be available to counter sign the agreement. Because if it's anything like the criminal courts the people will be long dead

OP posts:
AInightingale · 29/11/2024 21:09

No, this bill has nothing to do with dementia patients, although critics of it seem convinced that it does. For me, it's an entirely separate issue that needs its own debate. How many times do people tell their relatives to 'just put a pillow over my face if I go like that' - usually witnessing it in their own parents, and then thirty years later they are in the same position. DNR orders don't begin to cover it. If I could sign a declaration now to refuse routine vaccinations and treatment for infections should I ever be in the final stages of this condition, I wouldn't hesitate. To me it's just bodily autonomy, a basic human right!

AgitatedGoose · 29/11/2024 20:04

I’m really thankful the assisted dying bill was passed today because I really didn’t think it would happen. I understand there are several stages and at least two years until it becomes law so a lot could happen in that time. Sadly people with Alzheimer’s won’t be included and I’d imagine even people with a terminal
illness will still have a hard time. Anyone who admits to not wanting to be a burden will immediately be excluded.

AgitatedGoose · 29/11/2024 19:54

@AInightingale My Mum’s progress through the stages of Alzheimer’s was frighteningly rapid and she was at stage 6 within two years of being diagnosed and lived for a further two years at this stage. It was horrific.

AInightingale · 29/11/2024 18:59

I'd imagine about Stage 6 Alzheimers, which is when the person really falls apart - doesn't recognise close family, may hallucinate and show signs of agitation and distress, is usually doubly incontinent and may be struggling to feed themselves. I really can't see how doctors can deem that such a patient has any quality of life at all. At this stage you can see the sense in the old truism that pneumonia is the old person's friend.

EducatingArti · 29/11/2024 14:50

TheShellBeach · 25/11/2024 15:46

I don't think any vaccinations should be offered to people with dementia.

Dementia at what stage though? My mum is in the early stages of dementia and, I think still has a reasonable quality of life. She still goes to an elderly person's keep fit class, sees friends and enjoys visits from family. She is of course deteriorating, but at this stage I wouldn't want to deny her a vaccine for eg flu or Covid.

TheShellBeach · 29/11/2024 14:42

It's strange isn't it. I think some people assume it is like in TV, where they do a couple of pushes on the chest and the person comes round and sits up and all is well

Yes. TV shows like Casualty and Holby City have a lot to answer for.

The reality is that getting a ROSC is a highly unlikely outcome. Especially in a patient at the end of their life, with a degenerative brain disease.

SunshineSky81 · 29/11/2024 14:23

Its strange isn't it. I think some people assume it is like in TV, where they do a couple of pushes on the chest and the person comes round and sits up and all is well.

I have had to do CPR on someone, and it really is a case of if the ribs arnt cracking your not pushing hard enough. Iv'e also seen the mechanical cpr machine being used, and it is brutal.

We have a RESPECT form for my mum, she has Alzheimer's and COPD, and weighs around 5.8. My hope is that her body gives out before her mind does

GoldenSpraint · 29/11/2024 12:29

That thread - the delusion. It's so sad doctors aren't having matter of fact conversations with people about CPR and exactly what it entails.

I was told quite frankly that my mum would likely suffer severe brain damage and broken bones.