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Original poster

End of life - A handhold and experiences please

202 replies

WhenRobinsAreNear · 11/10/2023 21:51

My beloved grandmother is reaching the end of life stage now. Advanced dementia, multiple health issues, severe weightless, Bed bound, mostly sleeping, minimum fluid intake. We always knew this was coming but the deterioration has happened so fast.
We have had such a struggle to with DNS in terms of getting her the correct pain relief, a fight at every corner and her pain is still not controlled. It's heartbreaking and draining.

I don't know how long we have but I don't think it will be very long. I have found many of the end of life stories on here comforting and helpful for preparing me for all that is to come, so if anyone would like to share their story it would be really appreciated, I'm not asking you to sugar coat it, I know the experiences vary massively.

Thankyou

OP posts:
TheShellBeach · 19/10/2023 19:48

With any luck the syringe driver will be put in situ.
I hope so anyway.

Mischance · 19/10/2023 22:12

Hoping that the syringe driver will be with her soon.

Original poster
WhenRobinsAreNear · 20/10/2023 10:35

So.. They came out before the carers, then rang my dad, told him to give some oramorph, didn't give her an injection and left again....

I wish I was joking

OP posts:
SurelyNot22 · 20/10/2023 10:46

OP I am so sorry you're going through this. I have only experienced end of life care with my FIL and that was distressing enough even though it was sensitively managed.
I'm so angry on your behalf at the lack of inaction on the part of the DN. Is there any way you can escalate this? Somewhere you or a family member can physically go, and refuse to leave, until you are taken seriously?
I recall you mentioning GP; perhaps visiting the surgery in person might demonstrate the severity of the lack of care?
Again so so sorry

Original poster
WhenRobinsAreNear · 20/10/2023 11:03

SurelyNot22 · 20/10/2023 10:46

OP I am so sorry you're going through this. I have only experienced end of life care with my FIL and that was distressing enough even though it was sensitively managed.
I'm so angry on your behalf at the lack of inaction on the part of the DN. Is there any way you can escalate this? Somewhere you or a family member can physically go, and refuse to leave, until you are taken seriously?
I recall you mentioning GP; perhaps visiting the surgery in person might demonstrate the severity of the lack of care?
Again so so sorry

Thankyou, yes I am going to do this I think.
Someone needs to go over their heads now because honestly this is bordering neglect.
I do not want to be forced to put her in a care home because of the lack of support.
They are saying because she's alone they don't want to do a syringe driver because she might get distressed, they have said this to the carers only though. They need to be telling us this and when we are asking for extra support then point us in the right direction. I would love nothing more than for her to have more people around but no ones telling us how to go about this. I'm going to try ringing macmillan as the gp receptionist suggested and try and get in touch with nans adult social worker because she was fab. I will also be asking how to make a complaint, I've held off doing it because it's yet another thing to deal with but it needs to be done now. It can't go on like this.

OP posts:
SurelyNot22 · 20/10/2023 11:55

I am thinking of you. Stay strong and keep pushing. Don't give up.

Spencer0220 · 21/10/2023 06:07

Sending huge hugs and love 🤗

Original poster
WhenRobinsAreNear · 21/10/2023 23:16

CrotchetyQuaver · 18/10/2023 10:52

My dad went downhill very quick, august 2021 he was up gallivanting in London on his own at 96 with a day at Lords Cricket ground with one group of friends, followed by a dinner with a load of people he'd never met before and a night away. Thoroughly enjoyed himself after all the lockdown times. He died 19/10 (so 2 years tomorrow) from advanced pancreatic cancer which was only diagnosed 12 days before he died.
He was a pleasure to look after in his final days, he was very open in his communication so we could ask anything and he'd tell us the answer.

Very frightening to see such a rapid decline happen in front of my eyes, but I was well supported by my own family who after I moved in to look after dad came over every night to feed me and spend time with dad and one of dads friends who was a similar age to me and came and helped a huge amount. It all happened so quickly we couldn't organise help in time, but the local hospice who had really been our only support on this brief journey by checking on the phone in most days, offered dad a bed and he died there very peacefully 48 hours after he was admitted. My first experience of a hospice and it was awesome. 1 doctor, countless nurses, support staff and volunteers to 10 inpatient beds, modern en-suite rooms like a private hospital.... a beautiful place with kind gentle people on hand to make one's final journey as "easy" as possible. I can't describe how wonderful it was for dad and such a relief for me and dad that he ended up surrounded by people who knew what they were doing rather than the blind leading the blind which is how we had muddled through! He died peacefully and with dignity which is all I had wanted for him

I am so happy to hear your lovely dad had a peaceful and dignified death, and that you had so much loving support. I am so sorry for your loss, it's unimaginable to me to lose a parent and especially as quickly as you did. I'm so glad you has some precious moments at the end too,it really does make it slightly easier. Big hugs 💐

OP posts:
Original poster
WhenRobinsAreNear · 21/10/2023 23:19

Daffyyellow · 18/10/2023 18:37

I am sorry you are facing this. I understand the district nurses’ issues. Just a thought - could you record your gran in the times of distress to show the district nurses as they miss it during their visits? So that they can see her levels of pain and discomfort.

I hope your gran is peaceful and I hope the knowledge that you are protecting her, advocating and caring so much for her will bring you peace. 💐

The carers did try this the other day, recorded with our permission, it didn't make the blindest bit of difference to the district nurses that came out as 'that wasn't the current situation'
I'm beyond exhausted with this fight. I'm gearing myself up for Monday and then I'm going to move some mountains and set off a few volcanoes (how I haven't yet decided)

OP posts:
Original poster
WhenRobinsAreNear · 21/10/2023 23:20

TheShellBeach · 18/10/2023 18:47

That's such a good idea.
Record her when she's distressed. More than once.

I'm sure it'll help if the nurses can see her when she isn't fast asleep.

Edited

We tried this on the last time we called them, still refused. Can only assess the current situation apparently...

OP posts:
Original poster
WhenRobinsAreNear · 21/10/2023 23:24

Woman2023 · 18/10/2023 18:48

So sorry for you OP. I've been through similar recently and felt very let down at the end as the district nurses just didn't see the urgency.

It was about 3 days after she stopped swallowing consistently that she died.

The only way I got through it was deep breaths each morning and force myself to do my best to care for her when basically just wanting to hide.

Thankyou, deep breaths is definitley a constant thing right now.
I am so sorry you've been through this too and we're also let down. This is one of the hardest things we have to go through in seeing the slow death of a loved one and when the support isn't there it just makes it so much harder. I've been at breaking point over this more than I have at the fact I'm losing her, I don't think I've even truly processed whats happening but I know no matter what I've fought my hardest for her and I will continue to do so.

OP posts:
Branleuse · 21/10/2023 23:38

Is she living alone with palliative care team going in or is someone staying with her?
If she's living alone and her pain isn't being managed because of this, then I don't think being cared for at home is the best thing. I know lots of people want to stay in their home to die at home, but I think it sounds like she needs to be in the hospice.

Spencer0220 · 24/10/2023 01:09

Hope everything is okay @WhenRobinsAreNear We are still here. 🤗

TheShellBeach · 24/10/2023 09:42

How are things now?
Any further forward with the syringe driver?

Original poster
WhenRobinsAreNear · 24/10/2023 19:05

Thankyou @Spencer0220 and @TheShellBeach anf of course everyone else.
We aren't really much closer to a solution. DNS are still (insert whatever swear word you see fit here).
We've managed to control her pain for now, the Dr has given her apparently the strongest morphine patch they can and it seems to be doing the trick now. No agitation either.
Waiting on a call back from a few places including her adult social worker to discuss more care and options with that.
She's still drinking less than 500ml and probably consuming the same amount in things like yogurt and soup. It's mad how someone can survive on so little.
She's kind of just plateud and appears stable currently. It's kind of exhausting but I'm starting to relax a little that I don't think death is imminent but I know there's no telling for sure. I just keep reminding myself this is a marathon and not a sprint and most of all she's only going to go when she's ready. We have got to just cherish the time we have, however long or short that is.

OP posts:
BettyPhuckzer · 24/10/2023 19:14

Oh @minmooch 😔

Sending you so much love ❤️

KindaDefinitelyMaybe · 24/10/2023 19:20

Sending you love and I'm glad she's slightly more peaceful. And yes, they will go on their own timeline - that's definitely what I'm finding with DM. So little sustenance in her body and yet she continues to live.

TheShellBeach · 24/10/2023 19:37

I'm very glad that she's more comfortable.

Spencer0220 · 24/10/2023 19:58

Good news that you finally have pain medicine that works

TheShellBeach · 29/10/2023 11:51

How's your mum, OP?

Original poster
WhenRobinsAreNear · 02/11/2023 14:12

Sorry for the silence all.

She's stable not much has changed. Pain is managed through highest pain patches the doctor could give so we hope this stays this way.
I think the saddest update is that she doesn't seem to recognise me anymore. I don't get a smile or a hello like I used to. I knew this would happen, I hoped it never would and thought I was prepared for it but it turns out I'm not.

OP posts:
TheShellBeach · 02/11/2023 15:37

@WhenRobinsAreNear

Oh my dear.
That is such a sad update.
In glad your mum's pain is being managed now, but very sorry to see that you're distressed because she doesn't recognise you any more.

At least she is peaceful. It's very hard to cope with the end of a life.

I'm thinking of you.

Daleksatemyshed · 02/11/2023 16:35

I'm so sorry @WhenRobinsAreNear that your DM doesn't know you now, nothing prepares you for this day.

INTERNETEXPL0RER · 03/11/2023 18:29
Flowers
Ellemeg82 · 04/11/2023 08:09

Sorry you're going through this OP.

As a family were in a similar position as my father in law is also approaching end of life. He is in hospital, not eating and barely sipping liquid. He's now not talking or recognising us. Sleeping most of the time.
It's been like this for a few weeks and I don't know how much longer there is. So hard seeing loved ones like this struggling on.
Daffodil