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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:
thewinkingprawn · 21/02/2019 07:25

I hope you got some sleep. I just wanted to say what an amazing man your dad sounds. When I and my DH die and if my children speak half the way you have about your DF I will consider it a life very well lived.

Borntobeamum · 21/02/2019 07:26

So sorry to read this.....💕

DustyMaiden · 21/02/2019 07:27

On a practical note, can you get the Medical professional dealing with the syringe to add something to dry the mucus. Also to clean his airways.

God bless you

fizzandchips · 21/02/2019 07:28

Your dad sounds lovely and he will take such comfort knowing you are with him. I hope you managed some sleep. Thinking of you OP.

FusionChefGeoff · 21/02/2019 07:36

I really hope I can do the same for my parents when the time comes. You sound amazing OP.

I hope he leaves soon and that you can start the grieving process. Counselling sounds like a very good idea.

ThanksThanks

MrsFrankDrebin · 21/02/2019 07:40

I don't post often, OP, but like so many others who have posted before me, I'm thinking of you at this awful time.

My mum died of complications due to Parkinson's and dementia 6 months ago. It was a living hell for her - 'my mum', the one I'd known my whole life, had already gone, the 'essence' of what made my mum who she was had been stripped out by the Parkinson's. She couldn't talk, didn't know who I was sometimes, and was so thin that... well, you know.

She's out of that living hell now, and I can't be sad about that, but it's been harder than I ever thought it would be.

I'm so sorry for your situation OP. Your dad knows you're there - it won't feel like it now, maybe, but when it's all over and you have time to reflect, there will be a lot of comfort in you knowing he knew you were there too. Flowers

MorticiaAddamsIsMyStyleGuru · 21/02/2019 07:45

Sending you love and strength to get through this last stage. You have been incredible. Don't forget that. 💐

dancinfeet · 21/02/2019 09:08

Thinking of you OP, you have been so strong. Love to you and your wonderful dad Flowers , thinking of you x

MadgeMidgerson · 21/02/2019 09:12

I was with my grandfather when he died and he went through this.

It is really hard and you are doing an amazing thing

He does not need you to listen to the death rattle, just to be with him - wear earplugs or listen to music if you need to.

All love to you- it was awful but in retrospect I am glad I was with him xx

Budsbegginingspringinsight · 21/02/2019 09:17

OP, having fine the same thing myself all I can say is, we need too be able too choose when we die.

It's beyond cruel too force people too die in this way.
There's no way on this earth I want too end up so vulnerable like that for year's!!

It's awful we need to change the law,in other countries legislation is in place too facilitate civilised and humane end of life

Babyroobs · 21/02/2019 09:23

Hi Op . I have worked as a palliative care Nurse for 15 years and I know how distressing this can be. I think it is true when they say it is worse for the relatives than it is for the patient. Once all drugs have been maxed out then all that can sometimes help is gentle suction ( if they have that in the nursing home) and repositioning regularly. The suction can appear distressing but in some situations can be helpful. I'm sorry yu are going through this.

Oddsocksandmeatballs · 21/02/2019 09:25

I sat with my dad as he died and I have sat with others in my job as a paediatric hospice care worker and nothing ever prepares you for how difficult it is Flowers. I hope you have managed to get some rest and that your dear, beloved dad is soon at peace.

Hot4Holes · 21/02/2019 09:27

Just wanted to send some love op.
The best thing you can do is just focus on getting through each hour/day/week. It will become a blur but keep on stepping forward and getting through it.

Your poor dad Sad hope he finds his peace soon x

chillychicken · 21/02/2019 09:34

The death rattle is very distressing, I agree.
I thought I could cope with death - my wonderful Grandad had a long, but peaceful death. No death rattle, just a slow down in breathing until he eventually stopped.
My amazingly strong MIL died from cancer. Nothing could ever prepare me for her final 12hrs. I thought it would be like my Grandad's death but it wasn't. Instead it was harrowing. I couldn't cope with the noise at all. I had to keep leaving the room, but also had to be there for my DH, my SIL and FIL.

I'm not going to tell you to go home, I'm just going to give you a huge virtual hug because there is nothing I can say which will make this any easier on you xx

DowntonCrabby · 21/02/2019 09:43

Thinking of you this Morning OP. Reach out for any support you need for yourself, from the home staff of DH/friends.
I hope he and you have a more peaceful time today. FlowersFlowers

SinkGirl · 21/02/2019 09:47

Sending lots of love - watching my mum die was so painful. When she got sick I just wanted her to survive as long as possible, but over time that shifts to wanting their pain to be over as soon as possible. As distressing as it is for us, the medications mean they are at peace. You are doing the best thing you can by being there x

Zoflorabore · 21/02/2019 09:47

Thinking of you and your dear dad op. We're going through a similar hell with dgm
and just want her suffering to be over.
She's stubborn though so will likely decide when!

It's the hardest thing in the world to watch but I loved what a pp said that he will leave one woman he loves to join another.
Beautiful words and very trueFlowers

pinkhousesarebest · 21/02/2019 09:48

I hope this day brings you some peace OP. I sat with my Fil and DM who had Parkinson's and Dementia respectively. My Dm was quick but my Fil just hung on- he was a big, strong man with the heart of a lion. Whilst reading this, I have started to think about those nights and realized I have never processed them really. I have stuck them in a drawer somewhere ( am very good at this).
Thinking of you with all my heart.

CormoranStrike · 21/02/2019 09:50

You are not selfish at all.

Be kind to yourself.

If possible get a rota of other visitors, or give yourself time off.

CormoranStrike · 21/02/2019 09:52

Oh, and if his guttural sounds are louder then ask for his pain relief to be increased.

Is he still being fed?

Crockof · 21/02/2019 09:54

Just sending you the biggest hug. What an amazing man to have brought up such a wonderful daughter.

SoupDragon · 21/02/2019 10:00
Flowers

It sounds similar to my father last year. Truly hideous.

I hope he finds peace soon.

Nicecupofcoco · 21/02/2019 10:01

Oh op! What a wonderful daughter you are for your dad. He will know your there and will mean such alot.
Your must be feeling exhausted, be kind to your self also, try to rest if you can.
We are all thinking of you!

LilyRose88 · 21/02/2019 10:01

Sending love and hugs to you. I went through something similar when my father died two years ago. Like your father, he was on a syringe pump for morphine and other medication. They gave him something to dry up the mucus which lessened the rattle, but it was still there. He was on palliative care from Friday morning and he passed away on the Thursday evening. I took turns with my sister to make sure he always had someone with him.

It is hard to witness, but as other posters have said, the morphine will mean that he will be comfortable and will drift away without any pain.

He is lucky to have such a lovely and caring daughter.

Cosyjimjamsforautumn · 21/02/2019 10:03

Sat with DF and held him whilst he died and now, like you, waiting for same with DM. Although its so very heartbreaking to watch, i know i need to be here to support and comfort as theyve were both there for us when we were growing up.
Flowers and hug for you

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