So bloody exhausted waiting for someone to die 2

[StiffyByngsDogBartholomew]

https://www.mumsnet.com/talk/elderly_parents/4866628-so-bloody-exhausted-waiting-for-someone-to-die?page=1
Carrying on from our original discussion

@TheShellBeach - thank you - it may have seemed a stupid question- tbh I couldn’t even think of any strong pain relief I’ve had that didn’t make me dozy in non EOL situations. But this lady is highly intelligent, and knows my mum better, and I just got really worried.
Tbf she didn’t tolerate morphine well in hospital and as she wasn’t in pain with her illness I asked if they could try paracetamol for a separate shoulder pain and she became more alert when awake (slept a lot still) and remained comfortable. However, down the line now she is in a lot of discomfort with severe nausea which I can’t see leaving it to continue could help with alertness for the inevitable anyway if that makes sense.
Thanks again, it’s just been troubling me I missed something I should have considered.

Hello. Might I join for 2024? I’ve got DD - double dementia to cope with. Looked after by carers in their home, both parents are senile with Dad an alcoholic.

DM is hyperactive, DF is apathetic. They’ve been looked after for four years now after I saved DF’s life with fantastic help from SS - private care put in.

The money will be gone next year. The parents won’t.

I lost my Dad earlier this year, and the last 6 months of his life very nearly broke me. It's only because I'm a trained former carer myself that I had some idea of the system, and was prepared to shout/scream at whoever I had to. Dad asked me soon after his diagnosis to just stop the madness and overdose him with insulin. I will regret not doing so until my own dying day, seeing what his end of life was. Horrendous doesn't come close.

Joining for 2024. DF has declined massively and his quality of life is dire but he still believes he’ll get back to ‘normal’ and be able to use all the stuff hoarded in his home. I don’t know what the next year holds but I am already learning about the challenges of dealing with the system, especially when you have an unsellable house.

Thanks for the insurance info - good to be aware of things to check.

I hear Esther Rantzen and know that’s what I’d do. If I could see my life becoming a miserable succession of medical treatments and helpless dependency I’d want a route out too.

I’m so sorry you had to go through that. It’s awful what this experience does to us all. Changes you forever because it’s so inhuman what you have to tolerate and cope with day after day. Not only are we left with grief but trauma also.

I think it's good to keep the title
So many people don't know what this is like. I'm not normally one for "we must raise awareness of purple puppies who are traumatised by having to wear orange coats" - or whatever the cause du jour is.

But I think this one is really important. The title might attract people who are shocked but in turn, they might realise what everyone involved has to endure.

Hello everyone

I'm the original poster from the very start (used to be Poochpaws).
I've been reading all your posts and never when I started the thread did I think it would take on such a life of it's own.

It's been so 'lovely' to have been validated and heard by so many people and it made me feel so much less alone to read what others are going through. Nothing compounded the horror more than useless siblings who did fuck all and slagged me off. Our relationship was not close before and now I doubt we shall ever speak again. The fragile bond that was there before has been very much violently snapped.

My update since I first posted. Mum got into a carehome and it was actually quite stressful - the silence. No ringing phones, no problem after problem, no waiting for the next crisis. It was actually quite unnerving and eerie and sad. After all the move to the carehome was the next leg in a journey that was only going to end in one place. The carehome she was in was bloody marvellous and they barely bothered me at all. So I cracked on as I had to sell her house and close accounts and all the other jobs that nobody knows about except us carers.

Then she died. Strange. She had been 'dying' so long I had gone from grief to resentment to anger to having given up that she actually would ever die. I had actually accepted a new reality where she would live forever but in a poor state.
When the phone call came it was surreal. After it I kept checking my phone log to make sure I really had received the call and not just dreamt it.

Then the joy of dealing with endless phone calls and paperwork whilst not sleeping, feeling dazed and numb. Crying and overeating. So many feelings. Sadness, numbness, regret, horror, fearing for your own future because of course once your parents die then 'you're next'.

My journey has lasted just short of 5 years. I went from a person to a sad, broken, despairing shell. Full of rage and helplessness. Anxious, depressed and in a constant state of crisis and limbo all rolled into one.

When I posted the OP I was quite literally hanging on by a thread. Thoughts of suicide had become my friend as the only way out of the prison I was in. Nobody, absolutely nobody gives a shit if you end up dead during this process. It is like pass the parcel. Nobody wants to deal with the sick old demented person so when you try to get help it just gets booted back into your corner. People will stand by and pat you on the back whilst you empty the tablets into your hand to commit suicide saying what a great job you are doing.

Whether we like it or not, whether it is controversial or not - there are way too many sick old people and the systems are not set up to handle them.

Another poster pointed out the irony that we the 'younger' ones can't get a gp for love nor money but jesus christ my elderly mum had SO MANY doctor appointments, ambulances, mental health specialists, community nurses appointments. For what - to give her another few years where she was confused, terrified, ill.

After the dust settles the world becomes 'us' and 'them'. The carers that lived through the journey which changed them forever and 'the others' who have no idea but like to voice their opinions. fuck them.

To everyone here going through their journey I salute you. It will come to an end no matter how despairing you feel. Whether we ever get back to who we were before is another matter and not one I know the answer too.

Thanks you all so much for sharing your stories and for understanding mine. It has meant the world to me.

@Badfurcut - so sorry for the terrible journey that has no good outcome. You express everything so clearly, and I recognise it all although just near the end suddenly with my mum - like you were not sure that’s true even though I’m watching her deteriorating hourly.
This thread saved my sanity and I’m not exaggerating.
I have an offline mother friend telling me she hoped my mum would have one last good Xmas in her home - as she misunderstood what I meant with hospice care - obviously misunderstanding what a good Xmas can be too. Other side I had my manager discussing how we put animals to sleep - no we’re not good friends - and is January ok to be back full time!
I have had hospice yesterday wondering why I had been thinking of work (work mate mortgage and looking then like she would live forever!) as mum is priority. And saying we HAVE to get these drugs picked up when my daughter had work and one of us had to stay home with mum - she wouldn’t recognise work was necessary to my daughter either.
And yes to the amount of care - like wow - 3 nurses and a dr other day when sats dropped - can call nurses hourly - regular checks - apart from the hospitals and endless appointments in many depts over last few years. I have an incredibly different experience.
Now I feel sad and think I should have had nicer thoughts etc etc - and I also know it’s still ongoing but difficult - but at least you all get it on here and that has been an absolute saviour in such personal conflict.
Can’t thank you enough.

My mum is supposed to be dying but has recovered again. I have no idea how.

She and all of us have been in limbo for over two years but this is a new stage of hellishness. I am grateful she's in a home I suppose.

Many years ago when desperately seeking help for one of my children it was suggested I ask for anti depressants- I felt this was to make me stop pestering and be more happy about it all! (I know they are needed/good support in circumstances).
Two things from that - why are kids on waiting lists forever and you’re never told ‘child is a priority’ just sent to get on with it? When the services smile, pat your head and say try a carers group it’s just really ‘shut up and get on with it’
There is though less understanding why you want support with a parent I find - tbh this sort of discussion should be out there everywhere and recognised as such a difficult situation and an issue.
I felt a bit shite as a parent for finding some things hard, and wanting assistance with difficult stuff - now feel a bit shite as a daughter for similar. Maybe we need to stop the narrative that ‘carers’ are saintly and that’s enough for them to know and live on 🤦🏻‍♀️

@PermanentTemporary - it’s so hard - look after yourself.
I think it’s women of that generation- my ma survived falling down an escalator and smashing her shoulder (never set right) at 86, deciding to walk solo and smashing her head open on the fireplace at 88, pneumonia effectively at 90 as well as ongoing heart failure and other stuff. My Dad didn’t survive a fall that broke his shoulder. It is incredible!

@MsJinks your post about the friend and the pain relief stood out. I've had that experience with interfering friends who then go and ask their 'medical friend' for advice. The trouble is, the friend doesn't usually know the full picture, it's highly unlikely the medic friend would give actual medical advice for someone they'd never met (v unethical!) and for whom they've never seen the medical records!

I've seen several relatives/friends go through the final stages of life and all the end of life medication seems to sedate. TBH that seemed like a good thing. You only have a friend claiming your DM wanted to be alert to the end but did she have any idea what that might be like (how many EOL people had she cared for?!).

And it's also very easy for supposed friends to offer advice but not do anything useful.

With regard to possible law changes and assisted dying. I don't think assisted dying is the issue here, its prolonged living that we really need political debate about. As far as I can see prolonged living is just enormous suffering for everyone in its orbit. And at enormous financial costs. Nobody benefits, absolutely nobody, well, I suppose drug companies do.
But this, prolonged living, is what we really need to think about. Assisted dying is a minor side issue.

Not necessarily women I took my dad caving at 86 (proper caving, not a show cave) and his 90s were full of falls and blood (so much blood!) He cracked his head open on some railings at a road junction, refused an ambulance, got someone to deliver him to me. Now he’s quietly content, bed-bound in a nursing home. I’m happy for him to continue, he’s happier than for a long while, so let him enjoy it! But I’m hoping he won’t want to enjoy it for too many extra years, like when you’re pushing a child on a swing.

Yes, I think you’re right. It’ll take a very long time for euthanasia for dementia. It’ll be “terminal illness with less than 6 months to live” that’ll happen first. (Surely living 13 years and hating every minute has an urgency at least as great?). But actively keeping alive against ones previously expressed desires does need talking about and may be an easier nut to crack.

@binkie163 I don’t know whether you know, but you can have a “direct cremation” or even a “direct burial”. No ceremony, no-one there, cheap, nothing to arrange like cars, flowers, wake. Then you can have a memorial later if and when you have the energy.

I've had 15 years of being at the beck and call of my parents. My mum died in 2020 after numerous hospital stays etc etc. My dad then went downhill. This year has been terrible for him but better for me as he has spent most of it either in the hospital or in a care home.
Now, we are close to the end. He's been unconscious for 8 weeks and we are on day 17 of palliative care ie no water, no tube feeding, minimal medication.
He's hanging on. How long can this go on??
Today I have to go to the hospital again (we go every day). I'm juggling this with work and my own life (ha! that's a joke).
I just want this to be over now and I need time to rest and recover myself. I am broken.
There is such a thing as carer burnout. Google it then tell your parent's social worker if you have it and they have a duty of care to you as well as your parents.

Caught the end of somebody talking on the radio about assisted dying and saying people will feel pressure to exit because of family members. They went on to say that the affect on families should NEVER be a factor. They always then go on to talk about some fantasy world were care is perfect and plentiful. I think this needs reframing. Its presented as the child wishing the parent dead. Reading some of these stories, I would never, never, never want to put my child through this much stress and think it perfectly acceptable to consider their welfare as well in any treatment decisions.

Having said all that, I know, when it comes down to it, human beings cling to life at all costs, including costs to our own children. I remember hearing a programme on R4 ages ago about human reactions in life and death situations. And regardless of what we might think we would do, in real life situations, parents abandon their own children to safe themselves. This is how strong our instinct to survive is.

I agree!
you know when you have a baby and everyone has “helpful” advice about where your going wrong with sleep/feeding/potty training etc etc…well its like that only with helpful advice for the care of the elderly, but usually from people who are of bugger all practical help! Think it helps them feel like they’re being useful…just tell them that’s a fabulous idea @MsJinks and carry on as you were!

Its also true that one of the features of approaching end of life can be more sleepiness. God i hope it's like that for me. Presumably that's why a lot of people do 'die in their sleep' in that they're sleeping 18 out of the 24 hours anyway.

@MereDintofPandiculation thank you, I will suggest that to my dad. It's the expectation people have, my mum wanted black horses and carriage, thousands lining the streets, she had set aside 3k for her funeral! The truth is, she was not a nice person, she had no friends or even acquaintances to invite, she was a narcissist. I suppose death wipes the slate clean.

@Badfurcut "Nobody, absolutely nobody gives a shit if you end up dead during this process. It is like pass the parcel. Nobody wants to deal with the sick old demented person so when you try to get help it just gets booted back into your corner. People will stand by and pat you on the back whilst you empty the tablets into your hand to commit suicide saying what a great job you are doing."

I feel every word of this.

I am so sorry for everything you've been through. I haven't had even a fraction of it, and what I have had has broken me.

I don't have children, by choice, and sometimes wonder if people can't compute the idea that their kids might feel like this one day about them, so they block it out.

I don't unburden myself to many people but the healthcare professionals have to gloss over it too, I guess.

The resource issue is ridiculous. I understand when it's about trying to prevent suffering or hospital admissions but a lot of it isn't that.

@PermanentTemporary - I'm really sorry. I would ask how you're holding up but that seems a dumb question.

@binkie163 My dad's funeral was very simple, bit of an issue with standing room only. But we kept it simple as he specifically wanted that. I wanted a private funeral but mum said people would be upset and she's right, we kind of had to do the public thing.

Even that cost about £3k.

Death does wipe the slate clean, hopefully. It did for me. Though ...I fear mum has suffered too much and too long for that to happen this time.

She has stopped saying things like "next Christmas I'll be dead". It's hard for her to compute, but her older brothers suffered well into their 90s. They were abroad and didn't access to the medicine we have.

But, yes, death wipes the slate clean mostly.

@EmmaEmerald I know 3k!
Sadly I had a lifetime of my mums alcoholism and extravagant spending, always bailed out by my dad it ruined the family and eventually his pension pot. I bailed her out, the last time over 20k and she went straight back and did it again.
My mums life was one of narcissistic delusions of grandeur she honestly believed she would have the society funeral of the decade.
I am grateful to draw a line under it and move on free of the burden. I have to say seeing such a miserable old age as mums put the fear of god in me, its no fun but at least I also do not have children to force the misery on. I knew the poem by Phillip Larkin from a very young age.

This is what my parents have requested of me. They are in their 70s and in excellent health. They are planning their funeral but won't sort a LPOA. I'm going mad as I see at work the issues it causes.
Please get your older parents to sort the legal side!!