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!!)

My nan was unconscious in hospital when dying and then suddenly she sat up bolt upright and gasping. Felt so bad as I decided after I couldn't watch her die. I do regret it :(

I was in the room when both my grandparents died, they were elderly and we were expecting both.

They went peacefully with all their family around them talking about better times and that brings me a lot of comfort.

In terms of what actually happened they both were unconscious in bed, they gradually got greyer and their breathing became shallower and then it stopped. Nothing frightening or unpleasant.

My grandmother didn't 'wake up' as such, but there were distinct changes and signs that she was on the way out and some of them were not enjoyable to watch. I wouldn't say it was horrific, though. Personally.

But then I've never thought of death as anything other than traumatic for the person involved. Newborn babies experience trauma being born, people go through trauma dying. I see it as the price we pay for life, I suppose.

I saw my dad die. I was told he was ill so I rushed. Eight hour trip on five trains. I'm still glad I didn't stop to buy flowers for my mum or I'd have missed him.

He was breathing shallowly. I held his hand. It was cold. I told him I was there and that I loved him and he made a noise so I think he could hear me. Then his knee jerked and his breath sounded a bit deeper for a couple of breaths then appeared to stop. That was it. His mouth was open like a baby bird's. I know this sounds odd - but it was peaceful. Then I had a dream about him that night,. He was on a warm beach, looking really fit and tanned, doing what he loved most in the world and he turned and smiled at me then turned back to what he was doing. I like to think that's where he his now, enjoying infinity, doing what he loves, in peak health on a sunny beach.

My experience of death with both my Mum and Gran was exactly as you’ve described it in your post. (Both died of bowel cancer). I often wonder the same things as you. I don’t know if they were just unlucky. They didn’t get the “pain free, peaceful death” the media loves to talk about but I do know it does happen for many people.

I hear you, OP. With my dad in the last hours there was a lot of agitation, grabbing at himself and objects, seemingly fighting, gasping for breath with open mouth, etc. But immediately after the moment of death I had a very strange and wonderful experience—totally unexpected as I am not the sort of person that feels or sees unusual or spiritual things. I had a sort of vision of him as he looked in his prime of life, tall, handsome and strong. This is not how I had thought of him consciously since around the 1960s when he actually looked like that. And I have a poor memory so I did not actually remember him looking like that if you see what I mean. It was the closest thing to a sort of resurrection or a vision of some sort of continuation of his consciousness after death that I can imagine.

I am aware this isn’t really what you are asking about but to me it was something wonderful and blissful after all that suffering I had seen him go through. My take home message was that I am no longer scared of death but I am somewhat terrified of what leads up to it!

I'm a student nurse. While I was on my first placement a gentleman died, my first experience of human death. He was very elderly and I'd been caring for him all day. He wasn't uncomfortable, he wasn't on a syringe driver or any serious meds, he was just quietly dying. I'd gone in to do mouth care and I could hear him breathing across the room, but while I was chatting to him and washing my hands I became aware it had stopped. It did give me a moment!! I got my supervisor who checked for life signs and he had just slipped away. I sat with him for an hour until his family arrived (with the window open of course!) but honestly it was the calmest, most lovely death I would think anyone would wish for.
As an introduction to death it was a wonderful event, and I will always remember him. I did cry on the way home and have a bloody large whiskey when I got in!

My grandparents both had the drifting off experience described by others. But my Mum died younger of cancer and it was utterly horrible. I remember feeling like such a fraud when the funeral director insisted that she'd died peacefully - she hadn't. It was like drowning, there was a lot of blackish browny fluid coming up. Then the doctors gave her an injection to make her feel more comfortable but I always wonder if it was actually just making her lie still and not struggle but she could feel it. Sorry if this upsets anyone.

@VintageGibbon Ah that dream sounds so lovely, I believe your dad is on that sunny beach too.

I am sorry for everyone’s losses, hope you find peace op

I was with my sister when she died and it was peaceful.
Have you had any therapy OP? It sounds as though you need to work through this to give you some peace.
Your mum would have been so grateful to have you there with her and it would have given her so much comfort.
Hugs OP 💐

Thing is, it must vary depending on how the person died and what from. DF died from pneumonia after a fall. He was unconscious at the end, breathing more and more slow, classic throaty rattling breath, then slowly stopped. No disturbance at all. DM died from lung cancer, she had a huge bleed (I wasn't there, she was in hospital and it was sudden) so can't have been very easy.
Hospice care very much tries for the peaceful end but there are, sadly, no guarantees. Sorry OP.

I have been with 2 people at the moment of death, both were very peaceful, as they died I felt a huge kind of calmness in the room, a very definate feeling of them leaving it iyswim? Both times I felt that after death their bodies were just empty vessels, the essence of the person had just gone, it was not a sad feeling, more of a realisation of their having no more use for it. I still miss them but not as much as I have missed people whose death I was not present for, its a very strange feeling.

My Grandma died peacefully at 99, having had a chance to see & say goodbye to everyone. It was the very definite of a 'good death' - she was fully cogent to the end, on no medication, just old.

A year later my DF died (much too young) from a complicated and awful medical condition. His death was awful. While the palliative care kicked in in the very last few hours, his pain was poorly managed till then & he was in deep distress. It has absolutely traumatised me & I don't think I have dealt with it properly at all, 4 years later.

Both times I felt that after death their bodies were just empty vessels,

Me too, specially with my dad. It was so .. final, an absolute moment of clarity that he had died & his soul had left him.

The other unfortunate and unexpected thing that happened was I lost my faith (Irish, Catholic) at the moment my dad died. It felt like there was nothing else. I didn't want to feel this way, I still go to Mass occasionally but all my belief is gone.

We’ve had two close family members pass in the last 8 months. Both had cancer and both had hospice at home care.

My Grandad passed last July. He had pancreatic cancer and it was an expected death.
He had a turn and a syringe drive was put in place at approximately 4pm.
We were sat with him holding his hand and left the room to quickly eat tea. After 20 minutes we went back in and found he had passed in his sleep.
He seemed very peaceful and I believe he waited for us to leave.
We sat with him for quite a few hours afterwards and the room felt very still and calm.
I had an image in my minds eye of him and my Nanny in their younger days back together which brought comfort.

My Stepdad died in January. We knew he was coming to the end and had a night carer sit with him. We were woken at 4am and advised he was close.
By the time we got to him he had passed.
His face softened within a few minutes and his mouth closed after an hour and he developed a smirk expression which made us laugh as he had a wicked sense of humour.

I didn’t find either death scary and our worst experiences were in the days leading up when loved ones were getting agitated, upset, trying to get out of bed, in pain.

I can understand your upset at what must have been distressing to see with your Mum.Hugs.

I also have OCD and entirely relate to your thoughts about this. I think it's quite common amongst OCD sufferers, but no one talks about it because, as you say, it feels like that will cause something to happen.

I have watched two people die. For my grandmother, I found it worse as she was non-verbal from dementia and it looked less comfortable. My grandad had a reasonably peaceful death and I was with him for 24 hours leading up to it. In both cases, I'm grateful that they had pain relief and other medications to make the process calmer.

Someone had a heart attack and died, I was young and working on the checkout he had come to. Awfully sad

Two years ago my OH died - he had had Parkinsons for a decade, and had fallen and fractured his hip, after which he never really recovered, and 9 months later he died.

At the point where I decided not to treat his pneumonia he gradually stopped eating and drinking and was asleep peacefully most of the time. But, quite suddenly he woke up and asked for something to eat. We sat him up on his pillows and I gently fed him a slice of fruit flan, bit by tiny bit and he clearly enjoyed it. All his DDs were there and we stayed by his side as he talked about how he loved us all and we found favourite pieces of music to play to him - he even hummed along to one of them.

After that he slipped into sleep and stayed that way for several days. At the merest hint of any distress I asked the nurses to give him a dose of Midazolam which they did straight away. He just got sleepier and sleepier and towards the very end quite grey with sunken cheeks - but he was peaceful. I missed the end of his life by minutes - I had gone to have a wash - but was there within a moment when they came for me. They had been gently washing him when he stopped breathing. It was a peaceful end.

It was a huge relief for us all as his illness had caused the most distressing paranoia and he believed that terrible things were happening around him and being done to him - it was a joy to know that at last his terror had stopped.

when we found my grandma she also had this fluid - did anyone ever tell you what it was? We couldn’t get a straight answer and it distresses my mum to this day.

I was there when my dad died at home (cancer). He was in a coma like state for most of the day, laboured breathing, very pale. We called the doctor and family members to come visit if they wanted. Then at about 1:30am he was sitting up in bed, right as rain, wanting a cup of coffee and having a chat. At about 5:30am I was called back up as he wanted help going to the toilet. He was sat at the end of the bed and just said “I’m weeing” and then just fell back. Called the ambulance who asked me to tell them each time he was taking a breath (don’t know if this was just to keep me occupied). He was dead by the time the ambulance arrived.
His dog, who usually was very happy to see visitors, never bothered the paramedics or funeral directors that came to collect him (as he died at home and had seen the dr in the 24 hrs before his death so he didn’t need an autopsy and got taken straight to the funeral home). I swear that dog was depressed for weeks.

I've witnessed two. One a few days ago. The first had his eyes open and they just glazed over. No suffering. The recent one was breathing less and less and because he had an oxygen mask on we didn't realise he had gone until we noticed that his throat wasn't moving.

I missed my dad's death as I didn't get there in time. The nurse told me that it was terrible and it was a good thing I wasn't there.

I saw somebody have a second stroke. She was propped up against extra pillows, looked alarmed, made a choking noise and then I can only describe it as the light left her eyes. I held her hand until the nurse came, who moved the extra pillows and laid her down gently as her body seemed to relax.

Others have also had that last brief awakening - one who had breast cancer, gave her full name very clearly and spelled the surname as though she was registering or checking in somewhere and then relaxed as her breathing became more erratic. My grandfather asked his wife to take him home (but she died a few years before - my mother thought he'd mistaken her for Grandma) and then his breathing slowed and stopped, having been rattly for the previous couple of days.

My brother had the brain function tests carried out where they disconnect the ventilator and check response to stimuli. He didn't react at all, but that was following a catastrophic brain injury - there wasn't anything left to respond, but he had been lashing out immediately after resuscitation at the time of the injury, which he would never have done consciously.

It can be traumatic to see, but I think that if any pain is as well controlled as possible, a lot of this is due to a last burst of 'energy' going to the brain and muscles where organs have shut down and it's almost always reflexes or a dream state where the brain is trying to make sense of what is happening, rather than awareness.

You could still access bereavement counselling. It may help because needing to talk about something not as many people see these days is a normal thing.

The moment of death was peaceful for my mum but the days leading up to that moment at the cancer hospital watching and waiting for her to die was very difficult. I distinctly remember speaking with one of the Macmillan nurses saying those booklets they hand out about ‘end of life care’ and ‘dealing with death’ don’t ever mention the devastation that comes at this stage, not just for the patient but for their loved ones. Thankfully we had several family members to do shifts by her bedside, god knows how anyone on their own would manage, it was mentally and physically exhausting and we were all fit and healthy people.

I was delirious most of the time, numb with sadness and guilt watching her succumb to the disease she had battled against for so many years. I like to believe she was pain free and at ease but there were points where I feared she was acutely aware of what was happening despite the various drugs being pumped into her. The rollercoaster of emotions you go through when a cancer patient is nearing the end is immense, you’re caught between a rock and a hard place because you don’t want to lose them but you also don’t want them to suffer any longer so you sit there almost wishing them to pass quicker.

Her tired frail worn out cancer riddled body no longer had the look of anguish and pain once she had passed. The struggle was over for her and for us.

I’ve seen a friend die of cancer - it was relatively peaceful - she just quietly stopped breathing.

OTOH I was with my mother, who was 97 with advanced dementia. One of us had sat with her constantly during the previous 36 hours when we knew she was on the way out, and all that time she’d apparently been unconscious - no sign that she knew we were there, not that she’d been at all responsive for quite a long time anyway.

But just before she died her eyes suddenly shot open, and her face contorted most terribly, as if she was in pain. It lasted only a second or so, and then she was gone.

It was horrible - I’d fully expected that she’d just quietly stop breathing. I have since asked relatives who are doctors what could have caused it - they couldn’t tell me. I can only assume that it must have been a heart attack.

It was some time before I told my siblings. TBH it was largely a relief to us that she was finally released from a most pitiful and undignified existence, so I didn’t want to give them any distressing details.