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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:
WH1SPERS · 21/02/2019 12:48

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

This really touched me, what a lovely tribute to them both.

I hope your father is at peace soon.

KnitFastDieWarm · 21/02/2019 12:53

My FIL passed last month - he was only 70 - and DH describes it as similarly hard to bear Flowers as others have said, it’s horrible to witness but he’ll be on a morphine cloud, comforted by music and your voice nearby.
FIL had an unpleasant journey towards death but his final moments were peaceful, with his family laughing and joking at his bedside as he slipped away. DH describes the moment as utterly serene, as if time had stopped in the room and peace descended after a horrible week of waiting, witnessing and pain. You are doing a wonderful and loving thing for your father and he’ll be with your mum laughing again very soon Flowers

isthismylifenow · 21/02/2019 14:24

How are you doing Trying?

TryingSoVeryHard · 21/02/2019 14:35

My DH has been to have a cup of tea with me. The rattle is hitting me at my heart. It's not responding to the meds but he isn't distressed.
While DH here I popped into the nursing home garden for some sun as a PP suggested. Saw in reception that Dad is resident of the day.
I'm struggling tbh - I cannot even contemplate that there might be a second night like last night.
I'm holding it together but crying silently next to him and screaming inside. I just hoped that after such a long illness with such an effect on his quality of life, that his end would be quick. Instead it's turning into an endurance test for us both.
It's DM's birthday tomorrow- I can only hope he's with her by then.
It's not about me. I'm broken hearted that he can't seem to slip away.

OP posts:
CurbsideProphet · 21/02/2019 14:47

I'm so moved by this thread. I don't have anything useful say TryingSoVeryHard but lots of love to you Flowers

BestIsWest · 21/02/2019 14:51

I don’t have anything useful either but wanted to send you lots of love.

SorenLorensonsInvisibleFriend · 21/02/2019 15:03

And me, too. Really sending some of my spirit over to be with you. I loved what you wrote about the neighbour hearing them laughing through the wall. They both sound wonderful. I hope he's soon with her, especially for her birthday. You are doing the most amazing job, they've clearly been great parents having a daughter like you! Hang in there unMumsnettyhugs

Applesaregreenandred · 21/02/2019 15:14

Another one whose thoughts are with you Thanks

moolady1977 · 21/02/2019 15:15

My heart goes out to you op I sat with my dad as he was dying talking to him about when I was a child about great memories of us doing things and going places, holding his hand telling him he could go and we would be OK, I left him with my mum and younger sister by his side while I went to a midwife appointment (7month pregnant) and got a call as I came out to tell me he had passed, all my love goes to you at this painful time x

PissOffPeppa · 21/02/2019 15:28

Thinking of you today Flowers

You’re doing so well.

Girlofgold · 21/02/2019 15:41

Aw. I've just read this. It is such a hard thing to hear and contemplate the meaning of. I still think of my mums end. It's a shocking business and was not the peaceful end I found with my dad, so much so I kind of block it out. Can only add I found it difficult, so keep do what you're doing. Give him permission to go and that you'll look after everything and that you're proud of him. xxx

WingBingo · 21/02/2019 15:42

My dear dad passed away 4 weeks ago and I sat with him at the end. I remember the death rattle still so clearly.

Big hugs for you, you’re amazing to be with him through this.

Mustbetimeforachange · 21/02/2019 15:53

You poor thing. I have done this twice - once for my mum ("only" 2 days & 2 nights) & for my dad (5 days). By the end I was virtually begging him to give in. I had told him I loved him & it was time to join mum but he just hung on & hung on. Eventually he passed while I was having a sleep in a bed in another room in the nursing home. They were all so wonderful to him but it still haunts me.

MrsIronfoundersson · 21/02/2019 15:58

Flowers and thoughts to you OP.

TryingSoVeryHard · 21/02/2019 16:17

My wonderful Dad passed at 14.45 shortly after my last post. The final moments were very quick and took me by surprise as it looked like it could be longer. I was cuddling him.
I may not be back for a little while now but I will be back. Thank you so much to all of you for helping me through this.

OP posts:
myrtleWilson · 21/02/2019 16:19

Sending you love trying - so sorry for your loss Flowers

MitziK · 21/02/2019 16:25

Is there a book or poems that he loved, whether as an adult or a child? If you could read that out loud, it's something he might hear and the sound and distraction of reading might make it less noticeable.

I'd also ask if he could be seen by a doctor, just in case they are more likely to make the decision to increase doses on the offchance the grimacing and noises are pain instead what are are more likely to be - involuntary movements due to Parkinsons. He might be on a dose that is appropriate when prolonging life is the aim, but doctors are still able to prescribe higher doses in the knowledge it could reduce lifespan where they know the patient is dying (or at least they still could when I worked in a relevant position). It's not Euthanasia.

Even if they can't, talking to the staff and letting them know how you're struggling might mean they can support you more, especially at night - shift changeover could include a mention of it, for example.

You can do this. You're doing it right. And yes, it is hard for those who witness it - but you are doing the right thing. He's got a birthday party to go to tomorrow. Maybe reminding him of this could be what you need to do?

Flowers
MitziK · 21/02/2019 16:27

I'm sorry, I cross posted.

Well done and much hugs.

WitchDancer · 21/02/2019 16:32

I'm sorry for your loss, but relieved that the end came when you were cuddling and he would surely have felt loved.

Time40 · 21/02/2019 16:43

Sorry for your loss, Trying. You get some rest now, and be kind to yourself.

DowntonCrabby · 21/02/2019 16:43

So sorry for your loss FlowersFlowers

I am grateful he has found peace and is with your Mother again.

Be very very kind to yourself in the coming days and weeks FlowersBrewWineCake

SoupDragon · 21/02/2019 16:43
Flowers

Sorry for your loss.

KittensAndCake · 21/02/2019 16:46

Thanks💐

Nicecupofcoco · 21/02/2019 16:46

So sorry for your loss trying! Lovely that he was being cuddled as he passed. I bet he was so so proud of you! Hugs to you! Flowers

Lllot5 · 21/02/2019 16:48

Sorry for your loss. Flowers

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