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Trigger warning * death rattle - please talk to me

(274 Posts)
TryingSoVeryHard Thu 21-Feb-19 01:06:21

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.

TryingSoVeryHard Thu 21-Feb-19 23:01:04

Hello everyone, I've read every message and loved them all. I'm really touched that you all haven't met me but are so kind.
I've popped the manual for heartache in my Amazon shopping list and will return to buy it.
It was a privilege to be with my DF and DM at the end. I was fortunate to have this chance with both parents as you can't always plan this, and understanding employers who are ok with my vanishing act!
For the PP who felt guilty about not being there for her DM thanksThere's nothing to feel guilty about. I'd feel guilty too if I'd popped off for a cup of tea but over the last few days I came up decide that if I had popped out when he passed that was how it was meant to be.
So sorry to hear of other losses, some very recent.
I love that he's DM's birthday present. I'm not religious but I love to think there's something after death and that my parents are together. On Sunday there were some very odd events that make no sense whatsoever, straight after I was philosophising that surely if there was life after death DM would've given me a sign. I like to think DM was in the room.

PissOffPeppa Thu 21-Feb-19 23:26:22

I’m so very sorry flowers

SapphireSeptember Thu 21-Feb-19 23:31:52

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 Fri 22-Feb-19 01:37:47

Sorry for your loss, OP flowers Look after yourself.

ThumbWitchesAbroad Fri 22-Feb-19 02:30:19

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 Fri 22-Feb-19 04:23:37

Oh OP flowers and the biggest, warmest and most comforting of hugs.

Your DF is at peace, with your DM. I really hope that you feel some peace too. You have your all, you really did. You need to rest, spend a lot of time with your family and REALLY look after yourself (that sort of stress can really take it out of you.

Take care flowers

mathanxiety Fri 22-Feb-19 05:26:43

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 Fri 22-Feb-19 05:29:32

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 Fri 22-Feb-19 06:05:26

So sorry for your loss OP thanks

BoringPerson Fri 22-Feb-19 13:04:58

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 Fri 22-Feb-19 13:59:38

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 Fri 22-Feb-19 14:02:24

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 Fri 22-Feb-19 15:24:04

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 Fri 22-Feb-19 15:30:46

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.

TryingSoVeryHard Fri 22-Feb-19 19:52:22

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.

TryingSoVeryHard Fri 22-Feb-19 19:57:45

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.

BoringPerson Fri 22-Feb-19 20:04:45

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

WitchDancer Fri 22-Feb-19 20:18:53

That's a lovely idea, the bear

pearldeodorant Fri 22-Feb-19 20:31:01

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 Fri 22-Feb-19 20:37:36

That bear is lovely

2018SoFarSoGreat Fri 22-Feb-19 20:39:28

that bear is beautiful. Lovely idea. flowers

Alsohuman Fri 22-Feb-19 20:47:07

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

Nicecupofcoco Fri 22-Feb-19 20:53:43

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

lumpybumpylooloo Fri 22-Feb-19 21:19:28

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 Fri 22-Feb-19 21:25:11

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 🙂

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