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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.

Omzlas Thu 21-Feb-19 19:20:27

So SO sorry for your loss OP, please take comfort that your DF is no longer in pain or discomfort and he can finally be at peace


LadyOfTheCanyon Thu 21-Feb-19 19:25:21

Ah Lovey. You did him proud. And we are all so proud of you for being there, honouring him and witnessing life's most challenging time. However hard it was, know that you did the right thing, the hardest thing and you faced it down.
Go and be with the living now, and celebrate his memory.

Much love to you. thanks

marvellousnightforamooncup Thu 21-Feb-19 19:32:05

I'm welling up. Be kind to yourself, you did an amazing thing staying by his side. He's at peace now. flowers

gonegnome Thu 21-Feb-19 19:37:09

I'm so sorry for your loss OP (and others too). They have moved me a lot. My dad went last summer and I spent the last couple of nights with him. That sound will never leave me, it was awful and so frightening, but I hope that my being there comforted him and brought him help when he needed it. I held dad's hand all the time as well, it was probably the first time I'd held it since I was a little girl! I'm sure you were a huge comfort to your dad too and you should be proud for doing such a difficult thing. Take care of yourself x

Chocolatedeficitdisorder Thu 21-Feb-19 19:40:16

You're a very brave lady. I hope you're getting some rest and some tlc.

daffodilbrain Thu 21-Feb-19 19:44:19

Sending you lots of love and hugs at this difficult time x

mrsdolittle Thu 21-Feb-19 20:00:05

So sorry for your loss. You are a very brave lady and a wonderful daughter.

Both your DF and DM would be so proud of you.

Be kind yourself now.


Toffeewhirl Thu 21-Feb-19 20:09:28

I'm so sorry for your loss, but also full of admiration for you. I love the fact that you got your brother to speak to your dad too. Your dad obviously loved you very much because you have shown him such love and dedication in return. I hope my children will be as loving and caring as you when I'm on my deathbed.

Get some rest now. Xx

MulticolourMophead Thu 21-Feb-19 20:26:41

I'm so sorry for the loss of your DF. thanks

You write so movingly about the love between your parents, and it's clear there's so much love between you and them also. I hope you can take some time to look after yourself now. You've been amazing for your DF, don't doubt yourself there.

SosigisAndCornflourSauce Thu 21-Feb-19 20:34:34

Gosh OP, I felt your emotion in your posts. God speed to your df x

justilou1 Thu 21-Feb-19 20:35:08

I’m both saddened that your father had passed and pleased that he has joined your DM for her birthday. So poignant. I hope you find some solace there. Please be kind to yourself and allow all of the feelings to eventuate. This is how you will heal. I know it was rough and you must be exhausted. Please take some time to really rest your body and be with those who love you most.

StripeyChina Thu 21-Feb-19 20:37:26

So sorry for your loss, Trying
I am glad your Dad has finally passed.
I hope you can get some rest now, you must be exhausted.

If you do look back in on the thread, i just read an amazing book:
'A Manual for Heartache' by Cathy Rentzenbrink. It is about sadness and loss but is hugely uplifting i found. She also wrote a book called: 'The Last Act of Love' about her brother who lived for 6 years in a PV state after an awful accident. She knows lots about loss and death and writes very movingly. Just a thought. Sending love to you, & your parents whose joyous laughter could be heard through walls smile

NotAnotherJaffaCake Thu 21-Feb-19 20:40:01

I’m so very sorry for your loss flowers

AntsDeck Thu 21-Feb-19 20:40:33

So sorry for your loss xx

BIWI Thu 21-Feb-19 20:48:17

I'm so sorry. But I'm glad that he is, finally, at peace.

Now the work you have to do is on yourself. You've had a very traumatic time, and you need to make sure that you (and your family) look after you.


PaintBySticker Thu 21-Feb-19 20:53:30

I’m sorry for your loss. I hope you can get some restful sleep tonight

Lovingit81 Thu 21-Feb-19 21:19:58

I'm so very sorry for your loss OP thanks

Dizzylin Thu 21-Feb-19 21:40:20

So very sorry for your loss flowers

OddestSock Thu 21-Feb-19 21:45:21

So sorry for your loss. Your father sounds like an amazing man xx

MrsPworkingmummy Thu 21-Feb-19 21:56:30

I'm so sorry for your loss. This post has really, really got to me. He sounded amazing.

StarJumpsandaHalf Thu 21-Feb-19 22:02:56

@TryingVeryHard take some time and be gentle and kind to yourself.

You supported your Father through such a difficult time causing distress to yourself in order to be there for him. It will have been a great comfort to him and wonderful to know how much he was loved.

As time goes on you'll process the loss of your parents and enjoy happy memories. It's hard but it comes in the end.

I'm very sorry for your loss.

Octofraughts Thu 21-Feb-19 22:07:55

Thinking of you OP. flowers

toffeeghirlinatwirl Thu 21-Feb-19 22:26:32

Oh sweetheart, so sorry for your loss. You are a wonderful daughter. Sending hugs and hope you can get some rest tonight. flowers
My mum was on palliative care this time last year with Parkinson’s (she died 3rd March). For us it was so sudden. She had a fall last January and just spiralled into mental and physical decline. Before that, apart from obvious mobility issues and swallowing, she was reasonably fine. (In hindsight, there were signs of early dementia). Nobody saw it coming. Though I sat by her side until the end and listened to the rattle, I’m thankful it didn’t go on for days.

My heart truly goes out to you.

imanoldbattleaxe Thu 21-Feb-19 22:35:18

I think he waited for you to be with him and not on your own before he went into your mums arms ❤️

burblish Thu 21-Feb-19 22:58:53

I’m so sorry for your loss. Your lovely dad and mum are together again, which I hope will bring you comfort through this awful time. flowers

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

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 🙂

Almostfifty Fri 22-Feb-19 22:02:41

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

NameWithChange Fri 22-Feb-19 22:28:35

Sorry for your loss OP. Although I know from experience how desperate the feeling can be to let them go and stop the suffering.

What a wonderful daughter you have been. I am so pleased your DF was waiting for DM's birthday! Makes perfect sense really from a man who sounds just lovely and a wonderful DF and DH.

My Grandmother died in her 90s last year and it went on too long, but she must have wanted to get past her only childs (my dad's) birthday, she died the following day. How kind of her to not take the shine off his birthday in future years.


TryingSoVeryHard Fri 22-Feb-19 23:28:02

Thank you everyone and so sorry for all the losses, some very recent. thanks
NameWithChange - what a coincidence! My DM died the day after my 50th birthday last year! I spent my 50th on a mattress in her room but I was fine with that. I felt she probably waited.

Woulditbeworth Fri 22-Feb-19 23:52:01

You are the most wonderful daughter.
I hope that if I ever find myself in your shoes, I am able to find the strength you have shown. Maybe it’s time to let people look after you now, please be gentle on yourself. x

TryingSoVeryHard Sat 23-Feb-19 00:27:02

Thank you - I do try my best to be a good daughter now BUT I was a bit wild in my younger days and caused them all sorts of headaches. Probably worse than average. I'm not saintly. I have been hugely frustrated at times, especially with DM who was mainly living in her house until a few weeks before she died. She stopped eating which led to her death.
A few months before she died she asked me if she could pay me to look after her full-time giving up my job. I had to decline - I have a well paid part time job that I couldn't afford to leave (and she couldn't have paid the salary I'd lose nor would I have wanted her to) and I have DC. She needed care 24/7 by then with no gaps. She couldn't even live with us due to stairs and lack of downstairs bathroom. And I couldn't leave the DC and move in with her. I felt terrible. I know it couldn't be done but I hate that I said no. She did so much for me. There's always guilt isn't there!
I'm privileged that I was able to be with both my parents at the end and I'll treasure that it worked out like that so I was.

NameWithChange Sat 23-Feb-19 12:49:05

There is always guilt and we have all been troublesome teenagers. Don't worry about that.

Their struggle is over, you did all you could and they had you there with them at the end - couldn't ask for more. Now they are reunited. Just lovely.

Take time for you now OP. It sounds like you have been through a hell of a lot in the last couple of years. It will take a while for that all to come out of your system 💐

Pinkyponkcustard Sat 23-Feb-19 13:22:22

So so sorry for your loss op

@inthemane Your Dad sounds like an amazing person and he’s a fighter, raging against the dying of the light. You’re doing the best, bravest and most loving thing by bearing witness to his death.

This is one of the best and most beautiful things I have ever read on Mumsnet

Alsohuman Sat 23-Feb-19 13:54:10

You were a good daughter, a very good one. The guilt is part of the grief and I hope you’ll stop feeling that part of it soon. We’re our own worst critics and judge ourselves too harshly, you did your awesome best. Nobody could have done more.

Inthemane Sat 23-Feb-19 18:22:54

I’m so sorry for your loss OP. Thinking of you now, please take time out to process what’s happened and be very kind to yourself flowers

@Pinkyponkcustard what a lovely thing to say, thank you. I was reminded of Dylan Thomas’s ‘rage, rage against the dying of the light’ in the OP’s eloquent description of her dad.

Thisnamechanger Sat 23-Feb-19 18:27:25

You poor thing OP. I remember it well when I went through it with DM.

This might sound off but I find yoga classes really trigger bad memories because of this sound because of the noisy breathing they make you do.

My heart goes out to you xx

OrdinaryGirl Sat 23-Feb-19 22:02:19

Love to you, OP. What a beautiful thing you did for your dad. ❤️

LibbyJeffries Sat 23-Feb-19 22:53:23

"good innings". Cripes, that just broke me.

So sorry for your loss.

TryingSoVeryHard Sat 23-Feb-19 22:55:51

Thank you all, I'm still returning and reading the lovely messages.
Nice things happened today. I took Dad's clothing to the lady who makes the memory bears, and I realised there was something in the pocket of his suit. It was the handwritten speech that he read at my wedding 13 years ago! I hadn't known where that went - I have a photo of him holding it and reading. Also in the pocket was an old style £10. I'll frame both. So pleased to have the speech - clearly it's the last time he wore the suit.
The other thing that happened is DH drove me to see my Dad's old shop. It's not where we live now. Found that it's still owned by the man who bought it off Dad 20 years ago but although he kept it as a greengrocers for many years more recently he's turned it into a florist. He remembered Dad and his brother very well. It's hardly changed apart from the use. I plan to get the funeral flowers from there as I love the idea of the flowers being made up in the shop he took such pride in and worked so hard for many years.

mineofuselessinformation Sat 23-Feb-19 23:00:37

God bless you, Trying, (if the religious element is ok with you).
You are doing so well, in what are very challenging circumstances.
I lost my DF just over two years ago in terrible circumstances. I truly recognise what you said about the awful death rattle.
I believe your DF is at peace now, and that you can draw some comfort from that.
I'm thinking of you. thanks

mineofuselessinformation Sat 23-Feb-19 23:01:43

X-post. Those are beautiful ideas. X

HeronLanyon Sat 23-Feb-19 23:09:57

trying so sorry. I lost my lovely ma 12 weeks ago. Mumsnet has been a tremendous place to share experience of losing someone, seek and get the most wonderful supportive advice and good wishes. So glad you have had so much real support here and irl. flowers for you and family and your dad’s friends.

TryingSoVeryHard Sat 23-Feb-19 23:12:22

So sorry to hear that Mineof - I hope you have been able to move on from what sounds like a very difficult time. I'm trying to focus that 95% of my Dad's life was good, and that the last difficult four years don't negate that.

TryingSoVeryHard Sat 23-Feb-19 23:16:01

Aw Heron glad you've also found Mumsnet helpful. 11 months since I lost my Mum. Still can't believe she's gone let alone Dad two days ago.
Take care thanks

BestIsWest Sun 24-Feb-19 10:12:31

flowers trying. You’ve brought a lump to my throat. You are clearly a lovely person and a wonderful daughter. My own parents are in their 80s and up until recently have been very independent. I can see that changing and it is so hard isn’t it.

StripeyChina Sun 24-Feb-19 11:14:30

How utterly lovely you found his handwritten speech in the suit pocket.
His love for you, reaching out to you after his passing.
Like he will have felt yours all around him (and your mum too, despite any logistical difficulties before she passed).

I have no personal experience (parents died when I was a baby) but your thread, and the responses, are very moving. The very 'best' of somewhere like MN.

The cloth bears are lovely. I have friends who have had them made from the clothes of children who have passed too. And the funeral flowers coming from his old shop couldn't be more appropriate. xxx

ThumbWitchesAbroad Sun 24-Feb-19 11:27:27

What a lovely keepsake to have found, Trying, and equally comforting that your Dad's old shop is still in good hands and you can use the services now for the funeral.

I hope people are rallying round and helping you with everything, and I hope they continue to do so after the funeral.

You're doing so well - it's a hard time but you seem to be handling it well thankswine

HeronLanyon Sun 24-Feb-19 13:22:08

Trying - how amazing to have found this !
I was clearing my lovelynold ma’s house yesterday and found her rough draft of a letter she wrote to a close friend whose wife had died. It was like she was saying those words to me. Started reading it to my sister and just broke down. She really poured her heart out to him about life and loss and love and support for him. So pleased I found it and heard her wise voice about what I am going through. Hey ho ! Hugs all.

TryingSoVeryHard Sun 24-Feb-19 22:36:59

Stripey I'm sorry you lost your parents so young. I hope you are close to other family.
Heron that's really special. These lovely things appear just when we seem to need them sometimes. How lovely to read your DM's words of comfort.
Best it is hard - even the older people with full faculties feel lost in this fast paced world. My DM was bewildered by technology and life in general. i hope your parents stay well and continue to maintain some independence.
Thumb DH is very good. My brother lives abroad and has mental health and drug issues. He can be very difficult and demanding but he can't help
It. He has very set ideas. Not really from a big family but Dad's sister in law (widow of his late brother) has been a huge support. We'd pretty much lost contact as DM fell out with her but she's been amazing. I also have offers from friends to let them know if they can do anything but I never quite know how or what to ask for!
I'm off work this coming week on compassionate leave, and I need that time.
This thread has been a huge help through a very dark time. Thank you everyone.

mineofuselessinformation Mon 25-Feb-19 22:40:22

Trying, I know it's very easy to run around looking after everything but yourself because it helps keep your mind busy, but please do remember to look after yourself too. thanks

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