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Trigger warning * death rattle - please talk to me

273 replies

TryingSoVeryHard · 21/02/2019 01:06

NC'd for this as details are identifying. Please be kind. I've gone down a route that I know many wouldn't have chosen. Please don't tell me to go home. This is the most horrific night of my life.
My DF has been ill in a nursing home for four years with Parkinson's and dementia. A year ago DM with exactly the same conditions moved to the same nursing home after a few months of refusing to eat. DF was rapidly declining and she found it unbearable. She died 3 weeks later last March - we knew the day before that she was in the end of life stage and I stayed in her room overnight at the nursing home and was there when she died. I am very close to both parents so obviously it was extremely upsetting but I was glad I was able to be there and comfort her in her final moments.
By any standard DF should have died 18 months ago. His condition is heartbreaking. He's skeletal, cannot move, cannot communicate, bed bound, etc. Many times we've been told he's probably only got a few days but every time he shocks everyone.
As of last Sunday there is no doubt. He's at end of life. I've wanted this - he's suffered so very much and has zero quality- it's 100% what he'd want. He is the most lovely man - the staff all adore him. I hoped that after four years of suffering that his end would be peaceful and comfortable. I've been here since Sunday, staying in his room to comfort him. It's the least I can do for such a wonderful DF.
It is the absolute opposite of peaceful. He's got a syringe driver since Monday delivering end of life comfort meds - for secretions, sedative and morphine.
Since this afternoon he has the death rattle. He is distressed. That SOUND. Until you've heard it you have no idea. It's utterly horrific. I can't bear it. He's had top up injections. Nothing is touching the death rattle. I feel so selfish in saying I am sat here with earplugs in and music trying to drown out the death rattle but I can hear every rattle non stop. I am holding his hand and talking to him. He's clutching my hand tightly. I don't know what to do. I can't leave him and I won't leave him but I am so traumatised. This is Day 4 and the other days have had their moments but generally been ok and suffering has calmed. This is not improving. The rattle is horrific - I simply don't know what to do with myself while watching someone I love so much die in this terrible state. I need to find a way to cope. The nurse can't help - he's at max of all meds and is just one of the unfortunates whose end of life symptoms aren't controlled.
It's the sound. Without the sound I could cope. Please, any suggestions to help me stay strong.

OP posts:
PissOffPeppa · 21/02/2019 23:26

I’m so very sorry Flowers

SapphireSeptember · 21/02/2019 23:31

I'm so sorry OP. Flowers Your father went knowing how loved he was, I think that's the greatest gift anyone can have.

SomethingOnce · 22/02/2019 01:37

Sorry for your loss, OP Flowers Look after yourself.

ThumbWitchesAbroad · 22/02/2019 02:30

I am sorry for your loss, but relieved for you too that he is now at peace and with your mum.
I think only people who have been through this can truly understand the dichotomy of grief at the loss and yet relief that it's all over - it's a very strange mix of feelings to have, but very normal. Actually, the grief can sometimes hit harder than expected as well because often you feel like you've been grieving a long time already, as the person you knew had all but disappeared - but the final passing can still be very difficult to deal with.

I'm glad that you have your DH as support and I hope that things are easily dealt with now your Dad has gone.

Thanks and xxx

LittleMissEngineer · 22/02/2019 04:23

This reply has been withdrawn

This has been withdrawn by MNHQ at the poster's request.

mathanxiety · 22/02/2019 05:26

Flowers So sorry for your loss.

It really is wonderful that your mum and dad are together now on her birthday, and forever.

You are a brilliant daughter and a credit to them both.

Empathy56 · 22/02/2019 05:29

So sorry for your loss.Try to get some rest now,it has been such a tragic time for you.Thinking of you.Flowers

whataremyoption · 22/02/2019 06:05

So sorry for your loss OP Thanks

BoringPerson · 22/02/2019 13:04

Wow, what a heart wrenching thread. There have been some amazingly insightful and poignient posts.

So, so sorry for your loss. You sound like a wonderful daughter and your Dad sounds like he was a wonderful Dad.

It's heartening to hear that he had such good care in his final years.

💐💐💐

MakeItAmazing · 22/02/2019 13:59

Trying your latest post has made me well up again but I also wanted to say I'm glad I didn't offend with what I said Flowers.

SirVixofVixHall · 22/02/2019 14:02

I had to wait a day before reading all your posts, it was too raw for me, my Mum died two years ago.
My Dad died in an ambulance, being moved from one hospital to another, and I still find that very hard to deal with, six years later.
I was with my Mum for her final days, and holding her hand as she died. It was the hardest thing I have ever done but I am so glad that I was there, that she knew I was there, could hear me, felt loved.
Op this takes time to process, but over time you will be glad you went through this alongside your Dad. Be gently with yourself now.
❤️🌺

spiderlight · 22/02/2019 15:24

So very sorry for your loss, OP. He's at peace now, and hopefully back with your DM. Look after yourself now - these next few days and weeks will be hard work, albeit not in the same way. Flowers

Alsohuman · 22/02/2019 15:30

Your last post really resonated with me, @Trying. My parents died within six months of one another, Dad first, then Mum. The morning after Mum died, this was outside our kitchen window - two for joy. Never seen another one there before or since. I truly believe your parents were in each others’ arms for her birthday.

I keep thinking of you and wishing you well.

Trigger warning * death rattle - please talk to me
TryingSoVeryHard · 22/02/2019 19:52

I'm quite zombified today. Have done practical things like collecting the Dr's certificate, taking some items from Dad's room at nursing home, etc.
Thank you all for the lovely comments. It is indeed a strange mix of feelings. I am devastated but also relieved Dad is gone, for his sake. But I feel guilty about that even though I know it's what he'd have wanted.
Dad wasn't afraid of dying. He and Mum both had pre-paid funeral plans to spare me the organisation etc. They often said in recent years not to be sad when they're gone as they've had "good innings". The thing that Dad dreaded and was terrified of was a long illness with loss of physical or mental faculties. The bit I'm struggling with is that he had both, with bells on. Four years of declining health, incontinence (heartbreakingly he was always apologising to staff who changed his pads as despite dementia he had some awareness), loss of mobility, loss of communication, frequent skin injuries (tears or sores) and so on. For the last year he was skeletal pretty much in a foetal position. Also for the last 11 months he didn't have Mum. However he was always polite, pleasant and compliant. He was hugely popular at the nursing home staff - one carer was in floods of tears yesterday and I saw two others tearful. Many of them tell me he's everyone's favourite. He always tried to hide discomfort and put on a brave face, and he had a terrific sense of humour. He was giving cheeky smiles almost to the end but really inside I know he was broken. A few times I saw him crying though not recently.
All of this was his worst nightmare and he was such a lovely hardworking kind man. No one deserves to be like that.
Currently that's very hard for me, how he suffered, and how he had awareness of his dire situation. Maybe a dementia with oblivion would've been kinder for him. The loss of quality of life is v hard.
You don't get to choose how you go but I can see how a short illness at a late age seems attractive.
Four years ago would've been right for him I feel. 10 years ago and my DC were just babies and they meant the world to him. And people lose loved ones who are way too young so I know it's swings and roundabouts. You don't get to choose and few get a well timed easy passing with quality of life to the end.
I feel like I want to show everyone a photo of my parents which would identify me to anyone who knows me though the whole post does that anyway! I don't think it's allowed though.
I'll post a pic of something I had made just after a Mum died.

OP posts:
TryingSoVeryHard · 22/02/2019 19:57

This is a teddy bear made out of 14 items of Mum's clothing - tops, trousers, pjs and the dress she wore to my wedding. I treasure it. I'm currently sorting my favourite 14 items of Dad's for the same.

Trigger warning * death rattle - please talk to me
Trigger warning * death rattle - please talk to me
OP posts:
BoringPerson · 22/02/2019 20:04

Thanks for posting the photo. It’s a lovely little bear.

WitchDancer · 22/02/2019 20:18

That's a lovely idea, the bear

pearldeodorant · 22/02/2019 20:31

The bear is a lovely idea.

Thinking of you today. And your lovely family. Your parents were lucky to have such a wonderful daughter Thanks

ineedaholidaynow · 22/02/2019 20:37

That bear is lovely

2018SoFarSoGreat · 22/02/2019 20:39

that bear is beautiful. Lovely idea. Flowers

Alsohuman · 22/02/2019 20:47

Such a cute bear, it's a lovely idea.

Nicecupofcoco · 22/02/2019 20:53

Love the bear! Lovely idea for your mum and dad too.

lumpybumpylooloo · 22/02/2019 21:19

I’m so very sorry for your loss but also incredibly touched by the very obvious love and affection that you and your dad clearly had for each other. It sounds like you were blessed with an incredibly loving and happy family and will have many, many beautiful memories.... as will your lovely Dad. Take care of yourself. Xxx

IM0GEN · 22/02/2019 21:25

I like the colours in the bear, looks like your mum was quite a stylish lady who liked a bit of pattern and colour. No beige there 🙂

Almostfifty · 22/02/2019 22:02

I've just read the whole thread. I'm so glad you were there, I was there for my DM, missed my DF dying (he decided to trick the entire nursing team) and still feel guilty about it, though I can remember seeing his wee face with a twinkle in his eye when I saw him last.

You've been a fabulous daughter, and what happened to your DF is just horrid, but he's at rest now and you have to be glad of that and move on from the past four years. Try and have some time to yourself over the next few days. Flowers

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