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!!)

Thank you for this thread. Two of my relatives died this year and talking about their deaths seems taboo but I need to. My mum had dementia so the last 1-2 years were horrific and her eventful death was a blessing. I feel so angry about the two years of suffering before her death. I am absolutely certain I want to take my own life rather than go through that. The other death was dreadful. Hospice nurses had refused any palliative drugs because in their view she didn't need it. I hate them for their arrogant decision. By the time she died they couldn't get the drugs in fast enough. They didn't attend for hours and when they did all he'll broke loose and the midazolam was finally administered 20 minutes before she died. Hours and hours I'd listened to her struggling, panicking, in pain and I will never ever give another penny to a hospice again. I don't trust palliative nurses at all.

I have seen people die and it isnt always some lovely journey. Pain management is a huge thing and in truth due to modern medicine people can be sedated and allowed to drift into death. My dad however had an audience of folks watching him struggle and gasp for his last breath. I am glad to have missed that as he would be horrified to think he was a spectacle for those around him. We should enusre we ask people there wants and wishes around death and ensure they are respected

I've seen hundreds die ( 15 years as a palliative care Nurse). Most were peaceful with symptoms well controlled, some as you describe your mum dying, some awful where people had acute episodes/ deterioration with no time to do much and some really horrible ones with catastrophic bleeds when a tumour has eroded through an artery or major blood vessel.

I was there when my father passed 2 years ago. He basically went to sleep and after several hours his breathing became more shallow and eventually stopped altogether. It was a longer process than you might expect, several times over the last hour or two we thought he'd taken his last but then he'd take another very shallow breath.
From being fine to becoming unwell, to ending up in hospital, was only a matter of days so in that respect it was all very quick, but from falling asleep for the last time it was around 18 hours which was a very long time to wait for the inevitable if that makes sense?

I’m (generally) all for honesty but not sure the nurse should have said that (or at least expressed it in that manner)

My grandma had been mainly sleeping for a week then the day before she dies she was unexpectedly hungry and wanted to eat eels - which luckily my mum knew how to prepare, we didn’t expect her to eat them but she did.
then she kept looking on top of the wardrobe and suddenly said “all right Jim, I’m coming” Jim was her deceased younger brother. She went back to sleep then and quietly stopped breathing the next day.
my dad died I. A hospice, my mum and brother had been with him all night, I walked in at about 7am and he died within 5 minutes - I think he’d been waiting for me to get there.

Watching my grandad die was peaceful, he took slower and shallower breaths til took one last one in, we all held our breath waiting, but that was it. The 3 weeks prior were an intense hell of suffering, but those final hours were peaceful and almost serene. His wife however, was much younger when she passed away, late 60s. She was unconscious for a good ten hours, then sat bolt upright and tried to climb out of the bed she had been in for weeks, then she settled back down and drifted off over the next 5 or so hours in a similar way to Grandad.
Point being, I truly think it depends, and I do think a lot of it is a physiological reaction and they've not got the panic that we around them feel and see.
Sending you lots of strength to get through this thread and the memories of losing your mum. And well done for 'talking' about it here as that can't have been easy for you x

I haven’t had any experience like that yet

This is an interesting thread. Thank you, all. As someone with cancer, and barely 50, death is something that I think about a lot. I’m very frightened of unbearable pain. I’ve never seen anyone die. My parents are hale and hearty in their late 80s. Until there is an assisted dying law passed - I wish there was one -I have wondered why general anaesthetic isn’t used for those with uncontrolled pain or those with extreme mental anguish. For a long time, I thought the “sedation” mentioned in end-of-life care meant general anaesthetic. But that is not the case. They have it in some countries by right - France, I think, does.

My parents passed recently both 75.
Mum at home after 2.5 years with Motor Neurone Disease, lock down killed her spirit, no family allowed in (I was allowed to visit as I did medications and some Therapy for mum and dad.)
Mum told me on my Friday visit that she was done. Spoke to my brother as it was his daughters birthday on Saturday and suggested they should come to see her, brother agreed. They also visited on Sunday. Mum got to say her good byes. She had a small vomit about 10am and just stopped breathing about 2:30am with us there.

My brother died at 13 but he was in hospital, OP had gone well but went down hill fast but went quietly.

Dad was in a hospice he hadn’t been awake for 6 days, would drink if we put a straw in his mouth and slight pressure if we held his hand but never opened his eyes. Got a call at 3am and we held his hands and again he just stopped rearming.

Mums sister died a year after mum and she went in her sleep as did their mum.

My partner died having bitten his tongue during an epileptic fit, suffocated on his own blood. I didn’t see it but found him.

No won knows how it is going to happen. We just have to hope that they are now at peace.

@HangingOver I think CBT could really help you. I see lots of people OCD and that exaggerated sense of responsibility and belief in intrusive thoughts as facts is very typical. Compulsions can be external (for example hand washing in response to obsessions about contamination) but very often they are not visible and are internal (mental bargaining, thought stopping, thinking a “good” thought to counteract “bad” thought, for example). You might be able to find a BABCP accredited CBT therapist on www.cbtregisteruk.com . You might also find this book really helpful www.amazon.co.uk/Break-Free-OCD-Overcoming-Compulsive/dp/0091939690/ref=asc_df_0091939690/?tag=googshopuk-21&linkCode=df0&hvadid=310834580283&hvpos=&hvnetw=g&hvrand=1866983414652751619&hvpone=&hvptwo=&hvqmt=&hvdev=m&hvdvcmdl=&hvlocint=&hvlocphy=1006976&hvtargid=pla-491535612382&psc=1&th=1&psc=1

My sister died from a brain Tumour 9 years ago, after she had been made palliative I decided that I would stay with her overnight. One night when the nurse had come to turn her she opened her eyes and reached out to me and pulled me into her arms. She had been unconscious for days before and after that she didn't open her eyes again. She died a few days later surrounded by the family.

I am also a nurse and have been present at several deaths. Everyone different but I have seen people waking up briefly. Breathing is often laboured or noisy due to secretions.

My mums breathing just got longer and longer between each breath, she died quietly and peacefully knowing myself and my dad were there, her pain was over, while mine had only begun my heart still hurts with the loss.

OP, thankyou so much for starting this thread. It is really important for people to make themselves aware of death and how it can be. Death is the one certainty of life - it comes to us all and it doesn't benefit anyone to try and sweep it under the carpet. The more we discuss it the better IMO.

I am still reading through the thread, only up to page 3. For the people who are troubled by witnessing loved ones who had previously been asleep, suddenly sitting up and gasping for breath or looking terrified etc, I like to imagine it's like what I do in my sleep. Apparently I do all sorts of things in my sleep: get up out of bed and thrash about, seeming terrified, shouting and screaming. I've written things down before, put entries into my iphone calendar etc. I scare the absolute bejeesus out of DH. Often I've clawed at his arm to try and wake him up so that he's left with scratches . 95% of the time I have no recollection of this until my DH asks me next morning if I can remember doing x,y or z, and then I have a vague recollection of a distant conversation with him in the middle of the night. DH tells me it's horrible - really terrifying - being woken up by a screaming banshee when he's in a deep sleep, bless him, so I know how awful it is for him to witness, but I honestly have no recollection of what I did or how I felt. As a result of this, I now think of thrashing about etc during death, especially when someone had been peaceful prior to this, as not necessarily an indication of physical suffering. It literally could be their subconscious playing out some dream or other in their head, and their body acting it out. That gives me some comfort to think that when I do witness someone dying, how they act may not necessarily be what they are feeling/thinking.

My father had a heart problem he’d lived with for years, but one evening it came for him and he fell down dead. Great way to go, in that he can’t have known anything about it. My mum found him & fetched me. We called an ambulance but really knew there was nothing to be done.

The aftermath, for various reasons was traumatic, my mother isn’t always a very nice person.

My DM died of Mesothelioma 11 years ago, she was cared for in a hospice for the last two weeks, she was not alone for a minute, we had a 24 hour rota to sit with her, the last 3 days she stopped eating and drinking, and several times looked as if she was going to slip away, it was just before 2pm each time. Her best friend was there two of the days, and sat and talked, the last time she visited they said the Lords Prayer together.
the day before she died, my father, brother, my niece and my 3 children were all there with mum, the hospice were amazing, they made cot beds up for the kids.
we were all sat in the room the next day, chatting, and my brother put mums favourite Neil Diamond album on. Mum was very peaceful and basically just went to sleep, she slipped away so quietly.
Afterwards we all sat for a while, my 3 sat with her for a bit, they were 11,14 and 16 at the time, some people said I was wrong to let them be there, but, it made them realise that death is not a scary thing.
Sadly I am facing the same thing, as my father has been diagnosed with the same cancer. All I can do is hope that he passes as peacefully when his time comes x

My lovely Granny died shortly before her 99th birthday of old age. They put her on the Liverpool Pathway when this was a thing and it was truly horrible. She literally shrank to a tiny skeleton over two weeks, no pain relief, no syringe driver just nothing, she literally starved and died of dehydration. I was not there at the end having visited to say goodbye a few days before when we knew the end was coming, but my Mum and Dad were with her and they told me it was peaceful. I have never been able to understand why they felt that the Liverpool Pathway was humane.

@greenflamingo just wanted to say, an injection to make a dying person more comfortable will be quite a powerful sedative generally so it will really relax and calm them rather than just incapacitating them. I hope that's useful or comforting information for you. I also lost my mum to cancer.

I was in the room with my whole family when my grandad died when I was 15. It was expected - he’d been ill for a long time and was in his 80’s. Was just like seeing someone fall asleep. It was very peaceful.
I’ve also experienced the other end of the spectrum through my previous line of work. I was 18 and working as part of a medical evacuation team when I first saw a colleague die. We’d patched up what we could, then he died en route to proper medical help. It went from incredibly scary, a lot of screaming to very quiet and chilled - it was like he had a moment of clarity right before and asked us to make sure his brother got his letter that was in his bedside drawer at home. Then all went quiet and off he went.
I experienced one more work-related death which was equally as horrible, but that first one hit me like a bus. I think it changed me forever - in both good and bad ways.

~@Bloomingdelightful how utterly heartbreaking this is to read, i hope that you've received counseling to help you

Sending my love to all of you who have been the greatest support to those who have passed. I was with my Grandfather and have almost lost my baby son.

I am very spiritual and a friend of mine who is a Shamanic Healer gave me a treatment for past-life soul retrieval. I actually experienced 'death'! One of my past-lives was of being hung. I could feel the noose around my neck and the extreme fear, then all of a sudden the most beautiful, ethereal and euphoric feeling of extreme bliss and joy. It was honestly stunning. I knew I was 'in heaven'. The Healer somehow talked me back to the real life moment. I will never fear 'death' now.

I hope this experience will help those who have witnessed their loved ones pass. Even though some were seen to be horrific ends, their experience as they passed over, would have been peaceful and heavenly.

Love to you all x

Thank you for this thread.

I'm losing my Mum to cancer and Im scared for her, and for me the unknown as I'm used to trying to prepare for things.

It's important to me to hear these stories and I hadn't realised how much until I started reading them.

My landlord's mother lived in the shared house and I would often smile and chat to her. Then she became ill and the Macmillan nurses would visit. Then towards the end the landlord and her partner took over her care.

Over several nights I was woken up by the haunted sound of a wounded animal . I had no idea what it was. It did not sound human. It was hugely distressing.

After a few nights of this I couldn't stand the howling any longer and cycled off in the middle of the night and knocked on the door of a friend. Luckily she woke and offered me a bed for the night.

I thought I can't go on like this and what was this awful haunting sound ?

The landlord apologised profusely and said they never thought it would happen like this, that in retrospect they should have kept the Macmillan nurses, they hadn't got the morpho e dose correct, had 'forgotten' I was upstairs and was able to hear and did I want to see her for the last time as she had passed away a couple of hours before?

I had never seen a dead person before and the little old lady was curled in a fetal position, her skin completely translucent and her face sallow and sunken but at least she was now at peace.

It was absolutely horrendous, utterly traumatic and the suffering she went through for days beforehand unimaginable.

I left that house thinking perhaps the landlord had hated her mother to allow that to happen? Or was it their botched attempt to do the right thing?

I will never know. I haven't ever really got over it. It was over 30 years ago. I have never talked about it to anyone else.