So bloody exhausted waiting for someone to die 2

@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.

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.

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.

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.

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 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.

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.

@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.

@MsJinks
All the drugs used in end of life care have sedating effects.
That's really why they're used.
If your mum is agitated she needs the medication. Can you explain to her friend that your mum needs the pain relief and it will naturally make her drowsy, and that's a good thing.

My mum has deteriorated quite quickly - she is on anti emetics and small pain relief on a syringe driver now. She has a long standing friend, who knew her better than I really for many reasons. Leaving aside any debate on an afterlife please, my mum’s friend tells me she would want to be alert when passing over - and I guess she would know that more than me - all I see is my mum may like discussing afterlife on earth but is not keen at all to get there herself, and whilst I know she believes in some sort of afterlife she’s never discussed her wishes like that with me, but perhaps as she planned to live to 200.
Anyway the friend was concerned that she is now confused, and thinks it’s drugs, and asked some medics she knows, and is told that you can have drugs to alleviate discomfort that also let you be alert, and I can ask for that. The drugs my ma is on knock her out and confuse her maybe, or maybe just her deteriorating self is confused anyway, I’m not sure. She’s quite agitated when they wear off a bit (prior to driver) but is that as she’s on them in the first place?
I am worried I haven’t like pushed these wishes with the care team and so letting her down with no second chance.
Are there drugs that don’t knock you out particularly at EOL does anyone know?
Any thoughts on it altogether? I feel like I’m just screwing up something very important for her.

I agree the title is just right! Harsh but fair!

I lost my mum recently after 10 awful years. Double incontinence, needing to be fed, washed, dressed, in and out of hospital. She was not a nice person and it has broken our family. She had carers 3 times a day but my dad was on his knees at 92 years old. I was emotionally and physically exhausted by it, I am so relieved it is now over. She died peacefully. None of the family want a funeral we just don't have the energy.

Thanks for starting the new thread. If you don't mind I'm keeping watching the thread and contributing where I can as it was a life saver for me when I went through this with my dad. I really feel for you all going through it and I think it's an important discussion to be had and kept on the table.

As for the title of the thread, the original title is what attracted me to open it and reply to it as when I saw it I thought 'THIS!!! THIS IS HOW I FEEL!'

Hope you're doing OK @Poochypaws, not seen you on the thread for a while

Having been there with my father, I’m just sending love and strength you all, especially over the festivities.

Thanks for new thread. I also agree v important to keep this going

I’ve read more posts now. Wow so much suffering all round.

The long grief of ten years, then the actual grief when it ends. Oh and then the regrets and grief over what could have or should have been.

@popularinthe80s not Pollyanna at all. I unfortunately am not alone.

So many familiar feelings in this thread. I feel seen at last, but sad others are experiencing it all too.

@JaffaCake24 'death is the [only] prize - perfectly put. Yes. I'm dreading the emptiness as much as I'm dreading the loss of my mother (and longing for it, for all the reasons we have been discussing).
@Lovethatforyouhun I hear your sense of emptiness. As if you've been scraped out. I'm so sorry. The sense of losing the burden, but also losing the purpose.
I wonder if it's too Pollyanna to say, the act of speaking the truth and validating others' feelings could become that elusive purpose we are seeking?

@Poochypaws was the first OP.

I have only read post 1 in the first thread.

Sending everyone strength, including the strength to live life for themselves.

It broke my body and soul and I shall never be the same. I lost so much. My youth and joy.

Its over now, but the resentments I feel for other so called family members who stood back and watched me sink is still strong.

Does the OP from the first thread know about this one?

Ah, I see. Sorry.

I do agree that the mental load carried by women who care for elderly relatives is immense though. It can definitely break you - it almost did me.

I wondered if thread 2 would be given a less... provocative title. Not that I think we should but it might not tempt the ill informed out. By that I mean those who believe that all the elderly are sweet and smiling, living with a wonderful quality of life, fully continent and just suffering from a little forgetfulness or mild tremors.

And thanks for starting the new thread.

Strangely once again I find MN is the only place I can voice my feelings on a subject I cannot talk about in the real world to anyone.

I have another area of my life that again MN is an outlet that helps validate what no one else sees or knows.

UnMumsNetty hugs to you. I hope you feel more positive soon. I had a day grieving DM yesterday. Felt wretched and sobbed and sobbed. Thankfully at the moment at least I feel better than yesterday so take heart, it does lift and go in waves I think?

Im still hanging out here despite DM’s passing three weeks ago as traumatised from 2.8 years of sadness and worry/anxiety and an awful final 2 weeks.

I’m finding although the physical burden eases up somewhat the mental side of things is very very hard still.

You long for the relief of knowing your loved one is at peace. You long for some imagined freedom you’ll gain. You long for there to be no more shoes to drop. But after all that effort, death is the prize. It’s just an emptiness now and I feel very alone, despite having DC around on holiday now. No Xmas at my mums this year like it’s been for so long. A lot to get used to.

It’s such a conflicting bundle of feelings.