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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.

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.

💐 RIP

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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