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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 02:06:22

Thank you PissOffPeppa - I've had to leave the room a few times to get tea, food etc, including tonight and I always tell him in case he wants that opportunity but when I come back I can hear the rattle from the corridor.
Just found diazepam in my bag so have taken one of those - they were prescribed just before DM died but I've still got most. I hope they'll help me get through tonight.
Zero chance of sleep - nothing blocks this noise so wondering now how I'll get through tomorrow.
For the PP who asked what death rattle is, it's terminal secretions. Dad has a serious chest infection anyway, probably pneumonia, and the secretions are saliva, mucus, etc and each breath sounds like liquid being sucked down a drain very very noisily. But it's constant gurgling, bubbling, crackling, and it's on a human. Think of the nastiest wettest cough you've heard and think of that every breath. It's utterly heartbreaking.

Hidingtonothing Thu 21-Feb-19 02:12:07

Another hand hold here OP, I hope it makes you feel a little less alone. Wishing you and your DF peace flowers

TryingSoVeryHard Thu 21-Feb-19 02:13:57

Nine hours now of the death rattle. I coped at first.

bethandfreyaruby Thu 21-Feb-19 02:20:21

I am so sorry for your difficult situation. Hoping your Dad finds his peace soon, and you have all the support you need to get through these next few days. Sending you love OP thanks

mathanxiety Thu 21-Feb-19 02:22:31

Just sending you ((((xxx)))) and hoping you will get through today ok.

flowers

TryingSoVeryHard Thu 21-Feb-19 02:31:41

Thank you everyone - you've no idea how much it all helps to feel less alone tonight.
There's a spare empty room here I've been offered so I might go in there once the day staff are on to sleep a little. They'd check Dad v regularly so
I'd feel reassured they'd fetch me if anything changed.

wheresthehope Thu 21-Feb-19 02:31:48

I am so sorry flowers

KavvLar Thu 21-Feb-19 02:32:22

You are doing brilliantly. It must be so hard and I’m sorry.

If it gets too much there is no shame in stepping out for a bit, you don’t have to do this all yourself in what is turning out to be an unusually distressing situation even in the circumstances. You can always return.

If it helps, would you like to speak about your dad and any good memories you have?

adrienneJ Thu 21-Feb-19 02:34:29

Its a horrible sound that is difficult to bear, I know exactly what you're going through, and it seems to last forever. Thankfully it is an indication that it's nearly over, and although terrible to witness now you will probably be thankful you spent this time with him at the end.

Also the nurses should have told you that it is the morphine that causes the worsening of this noise in the throat and that although it sounds far from peaceful, for those suffering from it, it isn't considered a painful or particularly uncomfortable way to go and its usually more painful to be the ones watching than those dying. I hope you take some comfort from this as its never an easy position to be in. Best wishes.

ohtheholidays Thu 21-Feb-19 02:35:48

Another one offering a hand to hold if you want it TryingI've lost my Mum and then my Dad,my Mum was in hospital when she passed and she was very ill like your DF,I'd never heard of the death rattle but it sounds bloody heart breaking,my Mum really wasn't with it near the end and was on the same medication as your DF but a couple of days before she passed I sang her some of Ave Maria,she loved that song and I'd never sung it to her before but her eyelids fluttered and she had a small smile fill her face so I agree with the PP about music sometimes it can bring comfort to you both.

I'm so sorry for what your both going through,it's not fair but your DF is very lucky to have you there with him you are being extraordinarily brave and I hope you know that.

I bet both of your parents,your DH and your DC all feel very lucky to have you in they're lifes.

I hope you manage to get some rest,love and best wishes being sent your way from me flowers

RomanyQueen1 Thu 21-Feb-19 02:38:07

I'm so sorry and I hope the end comes soon as he is ready, bless him.
You are such a lovely person and you couldn't have done anymore.
My parents went within a short space of each other and when I was with Dad at the end I went for a break and he took that time to die.
The nurses said it was quite common, so please if it does happen if you pop out, it's out of your control.
Sending you hugs at such a difficult time thanks

LittleMissEngineer Thu 21-Feb-19 02:40:56

Hang in there OP. You are doing amazingly.

I lost my Mum in August. I wasn’t there in the end - she kept rallying and it wasn’t obvious - but she suffered horribly for much of the 10 months before she died. You are doing everything possible and I hope that brings you comfort.

Sending many hugs.

Historydweeb Thu 21-Feb-19 02:41:44

Tell us about your Dad OP, I'm sure he is so proud of you. What can you remember that sticks out? Can we help you celebrate his life? flowers

TryingSoVeryHard Thu 21-Feb-19 02:44:05

I have so many good memories Kavlarr - he's my hero. He's got a fabulous sense of humour. We're very fortunate that the dementia hasn't changed his personality - he's stayed kind and polite - sadly not everyone does as dementia can change personalities. Dad was a peacemaker and a fixer. Very modest - for years I didn't know he was selected for the British Olympic team for Melbourne in (I think) 1956. He was a waterpolo player. Due to very serious injury he couldn't go. Him and Mum had the happiest marriage - when she passed their old neighbour wrote to say that of an evening him and his wife would sit and listen to my parents laughing all night together through the wall.
So they both had happy lives which they're very fortunate in. Sadly what dementia has taken from him was his absolute worst nightmare when he was fine. This has gone on way way too long. And now his death is long. Although I realise the death rattle does not signify pain, he has had periods of significant pain. He never shows pain if he can help it. But he's been grimacing, gritting his teeth and making inhuman noises. It's devastating. I hope he can be released soon with all my heart.

redcaryellowcar Thu 21-Feb-19 02:51:23

What an amazing daughter you are, your df is blessed to have you with him. I'm sorry you are going through this and that you can't even rest properly. Will keep you in my thoughts.

KavvLar Thu 21-Feb-19 02:58:04

He sounds like a really good guy.

Am praying hard that he finds peace soon and there’s no pain in between.

Please don’t be hard on yourself. You sound lovely and you are doing the best you can.

TryingSoVeryHard Thu 21-Feb-19 03:01:30

Thank you so much and sending love to those who've gone through difficult losses.
The last 3 nights I've been on the floor on a mattress next to his bed. My bed is made tonight but it's not possible to sleep. I have slept the other nights, aware that I might wake up and he'd have passed.
They've just given another injection to try to help.

TryingSoVeryHard Thu 21-Feb-19 03:04:32

He's aware I'm here - if I move away he holds tighter onto my hand. And when I leaned across him twice with my face next to his he tried to kiss my cheek.

Alsohuman Thu 21-Feb-19 03:09:51

I really feel for you. I sat with my mum for days and it's so draining. In the end both my son and I told her it was time to go, that we'd be fine without her and would look after one another. She slipped away about an hour later. I hope your dad finds peace very soon. 💐

Time40 Thu 21-Feb-19 03:33:18

Haven't grieved properly for DM as I've tried to stay strong for DF

Me neither. It's tough. Hang on in there, OP. My thoughts are with you, and I hope it's over soon.

TryingSoVeryHard Thu 21-Feb-19 03:40:53

I've told him several times that it's fine to go.
Thank you all. The second injection hasn't helped at all. He seems comfortable now though so I think the upset is in what I know it signifies.
With a diazepam, earplugs and a fan pointing at my ears (white noise) I'm going to try and get a snooze in. Or I'll be useless tomorrow to him.
Thank you so much, I am so grateful to you all for every word helping me get through this night. I will update.

Alsohuman Thu 21-Feb-19 03:50:36

Hope you manage some sleep. You must need rest very badly. 💐

KavvLar Thu 21-Feb-19 04:03:59

Yes I hope you can get a little bit of rest. Thinking of you.

OnceUponAGiraffe Thu 21-Feb-19 04:07:50

Joining in the night watch x I hope you can rest.

Triglesoffy Thu 21-Feb-19 04:08:39

flowers

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