If you've seen someone die, what happened? (TW: trauma, loss, death, terminal illness)

[HangingOver]

This is quite difficult to write, as I have OCD and, ever since I was small, it has relentlessly latched on to the idea that if I talk about the idea of a loved one dying, write it, or even think the words, that it will somehow cause it to happen and it will be my fault. Therefore, like a lot of people, I imagine, I try to completely avoid talking or thinking about it at all, and if you have similar issues, I'm warning you in advance this thread will upset you.

But here goes, inspired by all the talk about dear Deborah James and her latest news, I wanted to try to talk about it becasue I really, really fear death and never talk about it with anyone IRL.

The thing that got me thinking this morning was a very clever and kind sounding palliative care doctor on Radio Five Live this morning talking about what generally happens at the end of someone's life in a hospice. She made it sound quite gentle, slow and peaceful and made sure to point out that physiological changes, such as changes in breathing patterns etc. aren't signs of distress, they're more involuntary noises of unconsciousness that the person doesn't know they're making (like when you snore, I guess).

I know she's generalising and of course this is what most people want to hear...and perhaps it is what happens for a lot of people...but that wasn't my experience of losing my Mum AT ALL. At least, it was up to a point, but at the actual moment of death, having been unconscious for many many days, she bloody 'woke up', for about 30 seconds. She appeared to be crying (or at least her eyes were heavily watering) and basically suffocated in front of us while seeming to stare at me with a terrified look in her eyes.

It was so, so, so bloody awful and I will never get over it. I can still see it in my mind's eye with absolute clarity. I feel so so sorry for what she must have been feeling in that moment. I've spoken to two friends who also lost a parent who was about the same age (60-ish) and they have said the same thing; and also said that they weren't aware this was a thing that happened and it was an awful shock.

So what gives? Were our relatives just unlucky or is this actually more common than people realise? Or is it actually all purely physical and she wouldn't have know anything clutching at straws-

I've googled it but most people seem to refer to a 'non-peaceful death' as one where the person was very upset towards/about the end of their life, rather than this 'waking up' thing.

Sorry in advance for starting possibly the most depressing and awful thread imaginable! I just find it so difficult to talk to anyone IRL about becasue of aforementioned problems (this has taken a long time to write as you can imagine!!)

I've always been scared of death too, I think it was because I was taken to see my 185 year old Great Grandma as she was dying (seriously, she looked ooollllld). It actually terrified me.
4 years ago though I sat with my dad as he died from cancer, and I'm so glad I was there.
it was hard realising another breath wasn't going to come after the last one, but it seemed peaceful 🙏

These stories are amazing.

Oh and the smell of a dying person - aye, I remember this. I never really stopped to think but OF COURSE you can't get a person who is paralysed and doubly incontinent properly clean just using bed baths. Her hands always seemed to smell awful no matter how much they were cleaned and she had grime under her fingernails. I always could smell it after I'd been holding her hand and it made me shudder.

185? Is that a typo because if not thats incredible.

Here's another interesting thought - what did you say to your dying loved one? I was too scared to say anything "final" to here (like Goodbye) in case she could hear me and it panicked her; thinking I knew something she didn't about how long was left.

So I just babbled away in the days leading up to her death. I would put strictly on in her room and chat about the contestants (aided by wine, I have to add!). I'd play her favourite songs and tunes from Evita and Les Mis. I was really careful to not talk about her like she wasn't there when she was with the staff. I'd say things like, "Could my Mum possibly have...." etc.

Then at the very end during her 'waking up' I stood right in her line of vision and sort of hugged her head and looked into her eyes, smiling, and saying quietly "It's okay, you're absolutely ok, you're safe, you're totally safe here etc. etc.". I've no idea why those words came out but I felt so sure she was panicking and that's what I'd say to someone having a panic attack I guess.

Ha no she was actually 2 weeks shy of her 100th birthday, she looked so incredibly old though to my 4 year old eyes.
I can remember being made to give her a kiss and crying my eyes out, I really didn't want to 😑

I was with my grandmother when she died. It was peaceful. She was largely unconscious but had said 'I love you' in return to me saying it a few hours before (proof that she could hear us and feel our presence I hope). Her breathing just became more and more spaced out until it just stopped. We waited a while to make sure because it had got that spaced out we'd had a couple of false alarms, but when we were sure she's gone we opened the windows and all had a cry and one last kiss and cuddle. She just looked like she was asleep. It wasn't scary, just sad but also loving too. If I died the way she did, surrounded by family and peaceful, I would be happy.

My mum looked to be relatively 'peaceful' when she died. She seemed to react to being talked to and there was quick, shallow breathing before she just became still. It was bloody awful though, I didn't know who Deborah James was until recently but bless her heart.

With my dad, my siblings and mum were there too, we held his hand and stroked his arm/leg. He was unconscious for the last 24 hours, so we just talked amongst ourselves about old times and tried not to cry, hoping my dad could still hear us 💔

We held dd1 as she died peacefully in our arms. She went from ok to life support being removed within 36 hours. It was 3 years ago now but I still remember the overwhelming feeling of peace when the life support was removed and that brings me so much comfort even now.

The previous 6 hours had seen her go from unwell but stable to multiple cardiac arrests and traumatic, invasive attempts to save her. What followed was calm and peaceful. We are not religious but it felt important to have her christened right at the end, and DH, the hospital vicar, the PICU consultant and the poor nurse on shift were there. It was a humbling moment.

Hearing is the last to go. I was there when my DF died, of cancer, but it was peaceful. He seemed unconscious, but I well remember my DM talking to him just a couple of hours before he died, and his incredibly faint response.

I did talk to my DM when she was dying but there was no sign at all that she heard or understood. However that was probably down to the advanced dementia, which had meant that we had ‘lost’ her long before she actually died.

I'm so sorry you had such a traumatic experience with your mum's death, OP. I wouldn't wish it on anyone witnessing a loved one pass like that.

I used to work in a residential home so witnessed death quite frequently and what you're describing is more common than you think. Although, I've seen them pass in a similar way, there are also peaceful ones. My most humbling moment was holding a 96 yo woman's hand as she passed because her daughter wasn't able to get to us in time. I was glad she wasn't on her own, as so many were when we would find them during our nightly checks. We even had a resident die while eating his dinner!

My little sister passed away eight years ago now, and my mum swears she heard her call out for her before she found her in bed. Our little brother performed CPR on her, but to no avail. Both him and my mum have had PTSD and a lot of therapy - I will never fully understand what they both went through that morning because I wasn't there. Part of me regrets not being there, as the eldest, I should have taken that burden of trying to revive our sister and not my little brother. It royally fucked him up for a while.

I don't fear death, for this reason. Perhaps because I've been so exposed to it.

My mum died from cancer at a hospice, during covid times in 2020. We could only have two named visitors, masks, gloves, etc. Dad had been the one with her most of the time. I was a couple of hours away and had a call basically saying it would be soon, she'd only been in the hospice two days but had evidently decided it was time to get a move on. I drove straight there to find due to miscommunication my dad had gone back to the house, thinking I would meet him there. I went in to mum's room and it was very quiet and peaceful with Classic FM on the radio, I'd only seen her the weekend before but she was very different looking already. Clearly near death, nothing of "her" really left. Just lying there, unaware and breathing, I sat by her bed for ten minutes or so, as dad was making his way back. A doctor popped in and her breath stuttered and paused but went again - the doctor said is your dad going to be quick! And a minute or two later she just stopped breathing, that was it. Dad turned up a couple of minutes after that, he'd just missed it. Part of me thinks she waited till he briefly left.

It wasn't a distressing experience but it's stuck with me. I feel bad sometimes wondering if my dad and sister both regret not being there, or have mental images they'd rather not from wondering what it was like.

I was with my mum while she died. She was very heavily medicated, and so drifted in and out of sleep for about a week (I stayed with her most of the time, they brought a cot into the room for me) and she died very peacefully, her breaths just coming at longer and longer intervals. I stayed with her about 15 minutes after her breath stopped, then went to fetch the nurse. My mum had been having such an awful time that this last week of heavy drugs and pain relief, with her emerging into consciousness only rarely and finally being able to rest before she died, was a blessing.

I saw another friend before she died. I'd known her all my life, and it was strange, this last visit, I knew I wouldn't see her again. She really did seem like she had already moved on and wasn't really concerned with this world any more. It was the strangest thing.

@BonjourCrisette watch this. I found it hugely comforting and I wish I'd seen it before my father died. I watched it a couple of weeks afterwards and it pretty much matched my experience of being with him when he died (although I know this isn't always the case, as shown on this thread). I'm wishing you peace during your parent's journey through death.

I definitely agree that death needs to be talked about more. It is a part of life, and I for one have two beliefs:

Firstly, I think there is such a thing as a "good death." Prior to the moment of passing, your body naturally releases endorphins into your bloodstream, and hopefully surrounded by friends/family and with the right levels of professional intervention, death can be a calm and peaceful experience. Hearing the voices of loved ones, surrounded by kindness and compassion - this is what I hope for when my time comes.

Secondly I think the "soul" is quite happy once it leaves the body behind. It's not trapped anymore and can go to a place that makes it happy, whether that's on a beautiful beach like a PP mentioned or a sunlit, grassy hill. I am not a religious person, but I firmly believe that the death of the mortal body is not the end for the soul, and it's entirely possible that we are sometimes greeted just before the moment of death by other loved ones who have passed and who have come to guide us through our own passing.

I don't believe death is the end of our souls' experience, rather the beginning.

Love and hugs xxx

Thank you very much. I will definitely watch.

My dad died very peacefully in hospital. He had a moment of agitation a few hours before - we were with him for about five -six hours - but we held his hand and he calmed down. I don’t believe in ghosts but he visits me from
time to time and that’s very special when it happens.

My dad had a bleed on the brain very suddenly. Super young (51). They said he was effectively brain dead so we needed to turn the machines off. Happened over a matter of hours, not days.

Beforehand, my sister and i were taking his hand prints and he suddenly, out of nowhere, sat up and vomited all over himself then slumped over.

It was traumatic to see. I'll never forget it.

We were told it was purely a bodily function and he felt nothing.

I left his room and told my mum he'd had enough and it was time to switch off.

When we did it took ages for his heart to stop. He'd had maybe 2 or 3 breaths by himself and that was it. I had my hand on his wrist feeling his slowing pulse. I cant remember exactly how long but we're talking over 10 mins. With no oxygen intake, just a faint pulse. He appeared to twitch a few times but his eyes stayed closed

He went grey/yellow/blue ish quite quickly until I finally felt no more pulse.

It was the most traumatic thing in my life. Caused panic attacks and anxiety that id never had before. I ended up on propranolol for about a year afterwards.

Didn't help that it was so sudden. I'd spoken to him that day and arranged to see him 2 days later then POW, collapsed in work and that was that.

I just wanted to extend my sincere sympathy for what you experienced. Just reading your post brought it all back and it felt as raw as it did at the time. I'm sorry that you're struggling with the memories of that.

If it helps in any way, its been 8 years this year since it happened and I can honestly say that since maybe the last 3 years I now think more of the best dad I knew than I do of his final day, at long last.

When Mum died right at the end it was very peaceful. My Dad, sister and I were with her and then she just stopped breathing. We all thought she was dead but then she took another big breath and Dad said “Mum” you just had to have the last word. That day was awful though she was writhing in agony saying that she wanted to die. It was a relief she passed on peacefully.

I saw a friend passing away. She had some involuntary gasping before she passed but this is normal. It was peaceful for her. I am also a vet vet and usually passing of animals is peaceful but some have that involuntary gasping( like heavy breathing....a few heavy gasps) but they wouldn't know about it as they would already be almost gone/ in a deep coma. Its not nice to see but it is part of passing away for some .

I got home from a dog walk to find my husband face down on our front lawn. Someone had stopped and called an ambulance, but hadn't tried CPR. When I turned him over his eyes were open and his skin was dark red and blotchy. He had died instantly from a cardiac arrest, the coroner said it would have been instant. I will always wonder if he'd have been one of the 1% of survivors if the person had tried CPR.

When my DH died my ds2 aged 4 found him and couldn't wake up. My sister arrived and tried CPR but he had gone.
When my DP died I was meant to have been spending the night by his bed at the hospice... He didn't seem too bad so I decided to go home..The nurse rang me at 3am to say he had gone. I was very upset that I hadn't been with him.. The previous afternoon when we were with him along with his his brother and sister in law he must have been dreaming of fishing as he was lying in bed and we could see him winding in a fish he had landed in his dream...💙

My aunt died at 55 with early onset dementia. I went to the hospital when she was dying but I couldn't go into the room (lots of other family were with her, she wasn't on her own). I'm glad I don't have that image of her as my last memory of her but still feel cowardly for not being able to go in and see her. Turned out I was pregnant at the time so I'm not sure if that made me more emotional or not.

I'm so grateful for this thread because it's given me some time to cry for you all, & my quite recent, and very recent, bereavements. I do think I'm having trouble & so have been trying to access counselling after helping care for someone at home in the last few days, it does still cause trauma memories.

I would recommend hospice rather than home, as for one, not having knowledge or skills needed to care for a dying person, no one tells you what to prepare for, & the levels of denial are just heartbreaking (don't people have such radically different ideas on how much honestly about death there should be)

Also towards the end, staff weren't available for 24 hours to do the morphine driver which was desperately needed, and is of course, the worst thing I've ever experienced to see your loved one struggle so much (they appeared to, because of agitation, but I'm trying to reframe that in my mind).

Also at times, needing support from nursing etc, both NHS & hospice at home charity nurses, who at times got defensive & spiky when they were understaffed, stressed, & unable to get out. Also at times other staff were wonderful of course.

I'll add this as it's something I've always support but am now even more passionate about.

Thank you everyone on here for being so open about experiences.

www.dignityindying.org.uk/

I think there are some things that one can say, that happen “often” in death, and other things that are unique. My Dad died when I was 22. He had lung cancer, and fought his death, the end was traumatic, very painful for his family. He could speak until a couple of hours before his death. I had a friend at uni who slashed his wrists, and desperately confused and scared, stumbled around his flat covering everything in blood. When I found him , he’d collapsed in the hall, and was still conscious, and didn’t want to die, he was begging me, well anyone really to help him. He died. My nephew died at 37 from glioblastoma. His death was peaceful, how you’d want death to be…..death is essentially like life I think - some factors are consistent, others different. In many ways, I think it’s almost impossible to prepare for death. These days , with modern medicine, most people die without feeling pain…but this is a best guess….because no one can tell us what happens. I think OP, having OCD , must make things like death, very hard to “compartmentalise”…and I think the best way forward is to try and focus on calming yourself, and telling yourself there is “no plan”. Death , a bit like life, is about living “in the moment”, and as hard as it is for you, I think you have to just try and “expect the unexpected”. Perhaps try some books for help - Elizabeth Kubler Ross “on death and dying” is a good one, but there are lots of others, that help to prepare you for the inevitability of death. I do hope you find this board helpful. Death is the hardest thing about living, and it hurts to be the people left behind, and It’s awful that death is the high price we pay for living