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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:
LadyOfTheCanyon · 21/02/2019 19:25

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 · 21/02/2019 19:32

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

gonegnome · 21/02/2019 19:37

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 · 21/02/2019 19:40

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

daffodilbrain · 21/02/2019 19:44

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

mrsdolittle · 21/02/2019 20:00

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.

ThanksThanksThanks

Toffeewhirl · 21/02/2019 20:09

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 · 21/02/2019 20:26

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 · 21/02/2019 20:34

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

justilou1 · 21/02/2019 20:35

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 · 21/02/2019 20:37

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 :)

NotAnotherJaffaCake · 21/02/2019 20:40

I’m so very sorry for your loss Flowers

AntsDeck · 21/02/2019 20:40

So sorry for your loss xx

BIWI · 21/02/2019 20:48

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.

Flowers
PaintBySticker · 21/02/2019 20:53

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

Lovingit81 · 21/02/2019 21:19

I'm so very sorry for your loss OP Thanks

Dizzylin · 21/02/2019 21:40

So very sorry for your loss Flowers

OddestSock · 21/02/2019 21:45

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

MrsPworkingmummy · 21/02/2019 21:56

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

StarJumpsandaHalf · 21/02/2019 22:02

@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 · 21/02/2019 22:07

Thinking of you OP. Flowers

toffeeghirlinatwirl · 21/02/2019 22:26

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 · 21/02/2019 22:35

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

burblish · 21/02/2019 22:58

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 · 21/02/2019 23:01

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.

OP posts:
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