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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.

Shadow01 Thu 21-Feb-19 01:11:53

I have no idea what I can do to help but I couldn’t read and run.
Hand hold & flowers for you x

AlrightBabby Thu 21-Feb-19 01:15:31

I haven't got any suggestions for you my lovely, but I have got a whole load of empathy. Stay strong, safe in the knowledge that you cared right till the very end thanks

Dreamzcancometrue Thu 21-Feb-19 01:15:38

Excuse my ignorance, but what is a death rattle??

Changedmename1234 Thu 21-Feb-19 01:17:10

I’m so sorry you are losing your df. I sat with mine at the end of dementia too, and his passing was genuinely a release, I could not mourn him being free of that terrible disease and all it had robbed him of.
With regard to what you are hearing, I took this from a website that helped me, I find comfort in science, the message is very clearly that the rattle is not distressing to him.
I hope the end is peaceful for you both. I told dad it was ok to go, that seemed to help him 💐💐

While the death rattle can be very hard for family members to listen to, it is a normal end-of-life event that is not uncomfortable for those who are dying. It may be hard to believe that the death rattle is not uncomfortable for a person, especially when it occurs in a person who is awake or semi-conscious. Studies have found repeatedly, however, that the death rattle is not uncomfortable Studies have found that people who experience a death rattle while dying do not have any difference in respiratory distress than those who do not have a death rattle. Likewise, the severity of the death rattle (how loud and uncomfortable it sounds) does not correlate with the amount of respiratory distress a dying person is experiencing.

In contrast to the dying person, however, the death rattle can be very uncomfortable for loved ones who are present. In one study, at least 66 percent of loved ones of a person dying found that listening to the death rattle is highly distressing.

If family members are distressed, there are medications that can be used to dry up some of the excess secretions that contribute to the death rattle. It's important to state again that research has concluded that the death rattle is not something which is uncomfortable or frightening for the person who is dying. It is a normal and common part of the dying process, and your loved one does not feel like she is suffocating when she breathes this way. In addition, the antisecretory agents that are prescribed for the death rattle do not often decrease the sounds. Having an awareness that the death rattle is common and not uncomfortable is probably the best treatment.

YouBumder Thu 21-Feb-19 01:18:24

I pray that his - and your - suffering is eased soon x

flowers

Toffeewhirl Thu 21-Feb-19 01:19:22

Another handhold. I sat with my grandmother whilst she was dying and it was really hard not to run away. I don't think you can do anymore than you're doing already, which is being there for your dad and showing how much you love him. I'm so sorry you're going through this.

Ookmybanana Thu 21-Feb-19 01:21:27

I'm so sorry for you and for your DF. Like pps, I can't really offer anything in the way of a practical suggestions for lessening what must be a heartbreaking sound for you.

Ookmybanana Thu 21-Feb-19 01:22:44

Sorry, posted too soon.
But I want to reach out and give you a hug. X

Floralnomad Thu 21-Feb-19 01:23:03

You have my deepest sympathy , we lost our mum on Saturday very suddenly after a short illness and I’m very grateful that she had, what I considered , a peaceful death . I hope your dad finds his ending soon , stay strong 💐

myrtleWilson Thu 21-Feb-19 01:24:23

I'm so sorry OP - its a horrible situation - I've been in it twice with my mom and one of my younger sisters.

But the "death rattle" was really excellently explained on this weeks podcast by YouMeandtheBigC - a palliative expert explained how actually the patient is such a deep sleep - almost a coma - that the secretions are lying in their throat, but because of the coma state there is no desire to cough and clear. So there is no distress to the patient.

When my sister was dying she seemed agitated/distressed. In reality she wasn't but the hospice staff took on board the impact this was having on her family and changed meds accordingly.

IfOnlyOurEyesSawSouls Thu 21-Feb-19 01:26:12

@Changedmename1234 what a truly compassionate post x

@TryingSoVeryHard use your breath to anchor you ... this will pass and you will both be relieved of your suffering.

To echo @Changedmename1234 your DF will not be in any pain when his time comes, the brain floods the body with endorphins.

Hand holding with you thanks

Spartak Thu 21-Feb-19 01:28:47

I worked in elderly care for a while and the death rattle is the most awful sound. I agree with the information that 1234 has posted - it is much more distressing for loved ones than the person who is dying.

Can you maybe play some of your Dad's favourite music to block out some of the noise? He may still be able to hear things around him.

You are so strong for staying with him these past few days, I'm not sure that I could do it. He knows that you are there for him x

myrtleWilson Thu 21-Feb-19 01:29:55

Sorry OP - posted too soon.

But it is distressing to hear but please do reassure yourself that its not causing them distress.

If you want to listen to Kathryn talking about this - its on this podcast from about 1 hour and 6 minutes in. if you decide to listen I hope it gives you some comfort
www.bbc.co.uk/sounds/play/p070s3z1

But hugs and flowers to you regardless - it is a really hard thing to experience but I hope that you know you're giving your DF such devoted care.

Hollywhiskey Thu 21-Feb-19 01:29:58

My mum is a palliative care nurse and she's seen many deaths. If he's on a syringe driver and morphine he won't be frightened or uncomfortable. He'll be floating on a cloud that'll just take him away. She describes his experience as that he'll just forget to breathe at the end.
Sorry it's so awful for you but honestly your dad won't be aware of it. My sympathies to you x

Inthemane Thu 21-Feb-19 01:33:23

I’m so sorry you have to go through this. This happened when my Mum died, it is a terrible sound. I had not been warned about it and it was very distressing at the time. Afterwards having read about it, something someone wrote suck with me - the body is an engine and as it prepares to let go it enters an automatic state.

The information that Changedmename1234 posted above should also be helpful (I wish I had known this at the time).

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.

ThumbWitchesAbroad Thu 21-Feb-19 01:43:26

huge ((((hugs)))) for you, it is a very distressing sound indeed.
I heard my paternal grandmother on her last day, but as it was taking her a lot longer to pass than the hospital originally thought (they called us at 5am), my father sent me away again until she actually did pass (about 6pm). And that's nothing in comparison with the length of time that you have been there already.

We were spared it with my mother because she was ventilated; but they did give her a large bolus of morphine in the early hours to try and ease her passage - which it did, I'm thankful to say, as she was in pain and suffering too.

I hope that your father passes quickly now for you and him both - but I hope also that the information given above has at least relieved your mind in terms of his suffering just now.

Much love and strength to you - it's a very rough time for you, and I hope you have support outside when things come to an end. thanks xxx

NoShitHemlock Thu 21-Feb-19 01:45:50

Another hand hold here from me OP. I lost my dad just over 3 years ago and he had the death rattle just for a few hours. We have a huge family and everyone just wanted to be with him, but he remained private to the end - he waited until he was alone to leave us (he died at home, so family were all in the house). I often think about him being on his own when he passed, and I wish I had been in the room with him, but the stubborn bugger just wanted peace and quiet to go (he had been looking for peace and quiet for most of his life - this is what happens when you have a family of daughters!).

Yes, this is hard. It is one of the hardest things you have ever had to do. But you are doing this last thing for your dad and he knows and loves you for it. flowers

Nofilter Thu 21-Feb-19 01:49:50

Nothing to offer but hugs. You can and will get through this. Xxx

TryingSoVeryHard Thu 21-Feb-19 01:56:42

Thank you so much for all your kindness. Changedmename that was very helpful to read. As have been everyone's comments. Floral I am so sorry you've so recently lost your DM. So sorry for everyone who's experienced this difficult end and any end. I appreciate all the kind words as I'm so alone here.
I am here on my own - my DH is at home as we have DC 10 and 12. During the day the carers take care of me too and sit with us when they can (one even stayed 2.5 hours after her shift ended earlier this week as she's so fond of Dad), but at night they don't - I guess they're on low staff ratios and they don't know me like the day staff. I'm here at least 5 times a week usually and now I've moved in since Sunday. In a lighter moment as I was roaming the corridor in my PJs earlier while DF was being repositioned I heard a carer ask the nurse if they had a new resident while looking at me. I'm 50.
I don't think I can possibly sleep tonight - the sound is unbelievably loud and I know what it represents. I've popped a fan on for white noise but it barely muffles it and really I want to hear if things change.
For his sake I seriously hope he can let go soon. I've told him he can go, I've encouraged him to go to Mum but he's fighting and fighting.
I was with both my Nana and DM when they passed - it was nothing like my poor DF is enduring.

PissOffPeppa Thu 21-Feb-19 01:57:23

Oh OP I’m so sorry flowers My grandma had dementia and the last 18 months of her life were exactly as you describe- skeletal, unable to talk, unable to move at all, unable to eat or drink. It’s horrific to go through for everyone involved.

Trust that you’re doing the right thing. Please don’t feel guilty about your emotions- it’s completely normal to feel this way. Don’t forget yourself in all of this. I know you’re trying to do the right thing by him but you need to think of yourself too.

I was talking about this exact thing with somebody yesterday who sat with her mother at the end of her life. She told her mum that it was ok to go, that she didn’t need to hang on. She also told her that she was going to leave the room to get a cup of tea for 20 mins. When she came back, her mother had passed. It’s often the way- as a PP said above (and in my own experience)- that people wait until they’re alone. Of course you know what your dad would want, but don’t be afraid to take a few minutes to yourself if you need to.

Hearing is the last sense to go. Keep telling him you love him, keep talking. When my grandma was dying, I read her favourite book to her. If you do need some time away, tell him where you’re going and how long you’ll be. You’re doing so well.

Sending you all my love xx

TryingSoVeryHard Thu 21-Feb-19 01:59:03

P.s I will seek counselling when this is over. This is traumatic and I think such an ending adds to my feelings. I'm feeling frustrated that he's not able to let go. Haven't grieved properly for DM as I've tried to stay strong for DF.

Changedmename1234 Thu 21-Feb-19 02:01:43

What Hemlock said really resonates with me too. I was so tired with my dad that I was sat kind of to the side of him with my head on his bed next to his back just listening like you are now and I dropped off to sleep. It was like he was waiting, as soon as I fell asleep, he went. I read afterwards and there’s lots of similar stories. I really believe my dad was trying to protect me right to the end. Perhaps if you can, give him 5 minutes alone, tell him you understand if he is waiting for you to go, that you love him and that it’s ok to go, then go for a breather 💐💐

Myfoolishboatisleaning Thu 21-Feb-19 02:02:14

New resident 😁you haven’t lost your sense of humour and that will help you in the coming days. So very very sorry for you, but will echo what a pp said, it does sound distressing, but he will not be distressed. I hope you both find peace.

LuckyLou7 Thu 21-Feb-19 02:03:30

Oh you poor woman. My heart goes out to you and I pray your dad will soon be at peace. Look after yourself. flowers

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