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 wasn’t there when my mum died. She had cancer, and I remember leaving the house that night, knowing in the morning she wouldn’t be there.

i had DC age 6 and 4 and a 3 week old. I was at home when the phone rang at 7:25am. I knew.

i left DH with the kids for the morning and went to sit with mum. Then he came to see us with my baby.

it was really tough

When I was 17 I was present when my aunt was dying of cancer. She was only in her late 30s and the whole thing has traumatised me for life. She was such a happy dignified person and this was anything but.

She spent weeks writhing about on the bed in agony or completely unconcious. She constantly moaned and cried for her mother and begged everyone not to let her die. I remember the nurses trying to keep her still as her organs were prolapsing but she was allover the place pulling at the blankets and clothes she was in like she couldn’t stand them to be on. She did die of course but not one thing about it was peaceful and it lasted weeks.

I worry about getting cancer every day. I convince myself I have cancer and go and see a doctor regularly.
If I found out I had terminal cancer I would honestly commit suicide than die like that.

As a home care worker I have seen many people die and in the dying process. Many people are sent home with care packages to die. Obviously this side of my work effects me and saddens me and has at times traumatised me but I also like to think that we have enabled this person to die where they want to, we have ensured they are comfortable and reported to nurses and doctors when things need changed to suit the persons needs.

However, You never get used to it. You do come to terms with it but it does sometimes make me miserable to think we will all end up that way some day, even my children.

Having said that, nearly all of those individuals went in a peaceful setting, with their loved ones and to my knowledge, pain free. Which is all we ask for. To ensure the person is comfortable and pain free. There has been one or two that have been very difficult to watch, and as a care assistant it can have a massive impact on you as there is really not much we can do but report and report. If its not listened to or staff is short it is us in every day to witness this poor individual.

Many fall asleep and just never wake up, we know the signs to look our for and often know when our last call will be the last.
Although I have never voiced it to anyone, there has been so so many occasions where I have been given a handshake….. this handshake comes from a man or woman who knows they are dying and is actively in the process of dying. I will say “ok see you on tuesday” and it might be sunday at this point….. then you get the handshake, and you KNOW you will not see them on Tuesday, and they must know that too. ☹️

On a personal note, my own grandmother - I vividly remember her calling out and shouting for my mum to “Lift her up”. She was panicked and felt like she was sinking down into a hole. I have read somewhere that sometimes the drop in blood pressure can do this??

And as my lovely grandad said, just before his passing, “life is a flash in the pan”.

I vividly remember her calling out and shouting for my mum to “Lift her up”. She was panicked and felt like she was sinking down into a hole. I have read somewhere that sometimes the drop in blood pressure can do this

Yes, that makes sense... A drop in BP makes you feel a bit like you're falling off something I think.

Thanks for your interesting and honest reply

I'm really sorry to hear that Ithinkimightbebroken

@Eckno sorry to hear about your Dad's death. Sounds very similar to my Dad's. Once they realised there was nothing to be done for him (& he wasn't dying instantly) they had to move him out of ICU (understandably as they need those beds for people most in need of treatment.) The ward he went onto was in a siege by an unstable patient effing & blinding & throwing furniture around. It was horrendous. We didn't want much. Just a quiet spot for Dad to die peacefully. It was at that moment I realised what a terrible state the NHS is really in.

Similarly, a grieving friend had her Dad die on a ward and a staff member pitched up with a meal for him.

I've posted on previous threads with the same suggestion that just as there are birth wards there should be some to die in too.

Yes death is a daily occurence but at the moment it's like a lottery.Hospitals should have provision so there is a dignity for people when they pass.

@lameasahorse and @Baggyeye I’m so sorry you had similar experiences with your parents.

It really is a lottery isn’t it. Even from ward to ward. The staff on the first ward my dad was moved from were amazing, so compassionate. The environment still wasn’t ideal but they were supportive and kind and didn’t treat us like a massive inconvenience getting in their way.

I would seriously be interested in helping with a campaign to try to get dedicated end of life wards in hospitals, though I’ve no idea how to start. Not my Tory MP I don’t think!

I often think of the women who suffered baby loss and were subjected to the torture of having to share ordinary maternity rooms with crying babies, until they campaigned to change it. It’s not the same of course, but is comparable in the sense that an already traumatic ordeal is made so much worse when common sense should have ensured that separate provision existed from the get go.

@Eckno I know they can't change everything overnight but it's important that the strategy for the very end of people's lives provides a decent setting for the patient and their family.

I think I will send a letter to:
Professor Bee Wee - National Clinical Director for End of Life Care, NHS England and NHS Improvement.
www.england.nhs.uk/author/professor-bee-wee/

Sending a letter is at least cathartic to put down what happened to your Dad & your family when your he died and hope that it brings attention to the huge problem of what happens to patients and their families when active treatment ends in a hospital.

A heart breaking but beautifully important thread. Thank you to everyone who has contributed, and to you op. 💐

@Baggyeye Yes I agree. I do wonder how much is due to budget cuts and how much is down to the fact these procedures and facilities were simply just never there in the first place.

Thank you for these details. It will be a good start, and also cathartic as you say. It may also be worth contacting the hospital involved. It has been an eye opening experience but sadly not in a good way. I would like to help others avoid our experience.

It's quite complicated, though, surely. Not as simple as you first thing. How would you go about putting a patient in a ward like that that didn't KNOW they were dying? Some people don't, or are in denial. Some people put up a fight to the end, and know they will not recover, but want every last scrap of life they can get, no matter if it's in hospital. Some patients know they are very seriously ill but are hoping for a miracle at the last minute. Imagine being that patient and being aware they were shipping you off ot the dying ward, where you KNOW there is no coming out. Lying there and possibly hearing noises of grieving relatives every few days, or the last gasps of a patient a few doors down.

That was how it was for my Dad. He was at home with nurses coming in 3 times a day. He had been in hospital but had insisted on being discharged. He knew he was near the end and wanted to be at home with my mother. In the morning he didn't really waken, just lay breathing heavily. I was by the bed reading a book when suddenly I was aware of silence - he had slipped away.
If you have to go that's not a bad way. No

I agree with the provision of end of life spaces, not a ward but a specific corridor with dedicated private rooms, with adjoining relatives room. It would ease the burden of end of life care that is often placed on the staff operating busy wards. It would be an ideal world and most likely never happen due to NHS cuts but the difference made would be immeasurable.

We were extremely fortunate my mum passed in a cancer hospital, the staff were beyond impeccable and it made the most horrific of situations both bearable and less traumatic for the family. She had a private room and next door was a small office they turned into sleeping quarters for us as we stayed through the nights with her. I wish this was the case for everyone enduring such an ordeal because the experience is brutal enough.

@CurlyhairedAssassin as a lot of people have said here dying can takes hours and days so sometimes not long enough to discharge or go to a hospice when treatment is withdrawn but no need to be put in an active treatment ward (or whichever corridor or spare corner they can find) Dying people are often unconscious by that stage but they need somewhere for their last hours - it seems tragic that they are just shipped off to wherever the hospital can find a bed for them which is often an unsuitable setting & where the staff suddenly find a grieving family wanting to squeeze in. It's just a shit situation for the patient (thankfully often unaware of surroundings), staff and family members. I understand your point that some people don't want to know but it's not like you'd hang a sign of the grim reaper on the door of the ward!

@CurlyhairedAssassin it really wasn’t complicated in my dad’s case. He was dying. Dying can take days or weeks. Providing specific areas in hospitals for patients who reach that stage really should not be that complicated.

But of course the NHS is now a bare bones service and it’s clearly too much to expect a bit of dignity and care in your dying days in supposedly one of the wealthiest countries in the world.

Actually his treatment was shit from start to finish. They even put the wrong details on his death certificate. I dread any member of my family getting ill now and having to set foot in a hospital now.

@Neverendingdust I’m glad your mum had the best possible care which helped ease the pain for you and your family 💐 It is encouraging that these facilities do exist.