Struggling after witnessing a death/end of life care

[penguinxoxo]

I lost a relative 2 weeks ago after a sudden illness. They were put on end of life care after a few days in a hospital and survived for 7 days on end of life care- I stayed with them all through this time.

The doctors came and spoke to us and told us what to expect which was essentially that they would start her on a syringe driver to keep her comfortable and she’d gradually become less alert/aware to the point she would be unconscious and then she would slip away.

Only it wasn’t like that at all, she was restless and agitated, crying out, grabbing at blankets and despite various concoctions of medications nothing seemed to fully get on top of things. In the end, she didn’t pass away peacefully. There was no drifting into unconsciousness and slowly slipping away it was like she had this horrible rattle and she sounded like she was choking/struggling to breathe but was still conscious and fairly alert until the very end.

Despite spending a week at her bedside, she died alone when I popped out to go to the toilet.

I feel terrible, like I failed her and didn’t advocate for her well enough. It wasn’t the peaceful experience that the doctors made out it would be or how you see on TV. It was traumatic watching her like that and not knowing how to help.

I can’t sleep because every time I close my eyes I can see how uncomfortable she was and I can’t stop thinking about the fact she died alone. I can’t get over the guilt that I let her down.

I’ve never witnessed anyone pass away before or be on end of life care so I don’t even know how to begin to process everything 😔

No advice OP but here for a handhold – you haven’t let anyone down, you were there and this person did not die alone – thanks to you. Be gentle with yourself x

What an awful experience for you, on top of the already sad time of losing your relative. None of that sounds uncommon (it can be like in the movies, but often isn't), but is obviously dreadful for poor family members to have to witness. Please don't feel like you let them down - quite the opposite, you gave your relative company and familiarity at the end of their life which is a very lovely thing. I'm sure that whatever they went through, your presence will have made it better and less frightening experience than it would have been otherwise.

I’m so sorry you had to Witness that.

I have heard people say in the past that that dying person waits until loved ones leave the room to pass?

Have you got anyone in RL who you could talk to to process what happened? Such an awful thing to go through.

I’m so sorry for your loss xx

I'm so sorry you've had this awful experience OP there's nothing anyone can say to remove the terrible memories you now have of losing your loved one.
I think it's not uncommon for death to be this way, the rattling is common I know that.
I was with my grandmother in her last days and your experience sounds very similar to mine.
All I know is death is rather much like a birth but in the opposite direction. It's a traumatic experience to witness but it's a privilege to be there with them. The fact you popped out and they passed away, doesn't mean you weren't with them, they were most likely unaware of anyones presence at that point.
I would recommend watching some near death experience stories on YouTube. Whether you're religious or a nonbeliever in that type of thing or not, watching these brought me comfort so may help you too.

OP, I'm so sorry for your loss and that it was a difficult ending for your relative. The rattle that you describe is a common occurrence and, for reasons that we don't understand, it's also common for the end to come when relatives are briefly away from the bedside. I'm sorry it was distressing but please don't blame yourself, you gave everything you could.

When you feel up to it try listening to Analisa Barbieri podcast "what to expect when someone is dying". A lovely palliative care doctor explains everything and it might be of some comfort

Listen sweetheart, you were there for her, and she would have known that. She didn't want you to witness her passing so she went when she was alone.

You did not fail her - she passed away in her own good time.

My mum was on end of life care and my sister and I were with her. We went to get something to eat, but in the end neither of us felt like eating, so we went back. She was clearly dying when we got back to her (the nurses had been turning her/refreshing her mouth etc when we left) and we were told that she had waited for us. I like to believe that.

By my reckoning, your relative wanted to pass on her own without you having to witness it. Please don't feel bad!

I have been there. I found my father after he suffered a brain haemorrhage and we were told that another bleed could take him at any minute. I spent every day with him for weeks and I went to bed every night wondering if it was going to be his last night.

I thought that he would eventually slip away in his sleep but that wasn’t the case.

I received a phone call during the night to say that he was actively dying. On my way in I thought he would be unconscious and slipping away peacefully but what I saw when I arrived was completely traumatic. He struggled for a few hours, I prayed to God to take him, it was heartbreaking. I will never forget it, there was absolutely nothing I could do for him only try and comfort him in any way I could. I was with him when he took his last breath and I thanked God when he finally took him. Even though I felt it was a privilege to be with him at his last breath, it was very very tough to see someone you loved more than anything in the world suffer on the way out.

I could not make sense of it afterwards as to why a good man like him could have a difficult death. But then, I knew nothing about the dying process until I came across a palliative care nurse’s stories on Tk Tok one night by accident. She explained the different processes of dying and the stages involved, the process of their body shutting down, what to expect but mainly that it was a painless process for them. I wish I had known all this so that I could be prepared but it definitely helped me deal with Dad’s death.

I really do think that there should be more awareness and information available to us as a society regarding end of life matters.

Please don’t feel bad about missing your loved one’s passing, it is quite possible that they might have wanted to slip away on their own and held out until they were alone, I’ve heard of this so many times but I do understand your hurt. I’m sure your relative wouldn’t want you feeling bad xx

Am so sorry for your experience.

It is a big part of our culture that people should not die alone.

However many years experience in end of life care has taught me that a lot of patients do appear to want to die alone. your experience of being there 24/7 for days and your loved one dying in the few minutes you were out of the room is very very common.

It happens so often that most people in palliative care believe the dying person somehow chooses that moment

The portrayal of natural death on TV is universally unrealistic which doesn't help as for many people that is their only knowledge of what it might be like.

I've worked in elderly care and have witnessed many pass and the way I look at it is this... I would personally prefer to wait until I'm alone to pass away ( if I had that choice) because I know that it would be really upsetting and possibly traumatic for my family to witness that and know from my step dads passing many years ago that it's an image that's hard to forget. Your loved one knew you were there and wanted to spare you the sadness of seeing them go. Also working in elderly care I know that no one ever truly passes alone as very often they see family members who have passed away in days/hours before passing which is a huge comfort to them.

I'm so sorry that it happened like this for you and your relative. You did something very special for them and I hope that in time you'll come to be glad of that.

Here's another short video that might help you start to see it differently. Dr Mannix is a kind and very experienced palliative care consultant and I found her books enormously helpful when my DH died.

Be kind to yourself.

I'd also recommend the book by Dr Mannix, When The End Is Near I think it's called. I found that so helpful to understand the process.

I'm so sorry you have had this experience, it truly is traumatic. However, as pp have said - waiting until you'd left for her to pass is far.from uncommon or you letting her down. It's so common that when a friend was waiting for her mother to pass aftera long, drawn out illness her hospice carer actually suggested she went and got a cup of water down the corridor in the hope that it would 'prompt it' - it did. She died in the 5 minutes of absence despite having been under 24 hour watch for the past 10days or so. No one knows why, but perhaps try to think of you popping out as being her permission to get peace from her struggles.
The death rattle, also, is so common it has the name. None of that stops it being truly awful to witness but please be kind to yourself, it doesn't sound like you could have done any more.

My Dad died in January this year, he had liver cancer and he ended his days in a nursing home that managed his care very poorly - so much so that we ended up with the palliative care specialist nurse and Consultant having to be on board to direct medication/doses. Dad's last 7 days were truly horrific - as his liver was failing, he wasn't metabolising the medication and he was agitated, trying to get out of bed, and never properly settled. He hadn't had food or drink for the last 2 weeks of his life.

I sat with him for about 4 hours on the morning he died, I went to see DH at work 15 minutes away and the moment I arrived, my mobile rang to say he'd died. I've beaten myself up for months over it, but the consultant told me that people often wait until their relatives leave the room. And I now feel a bit comforted because I don't think Dad would have wanted me there. As it was, I went straight back and sat with him quietly for an hour - that's a treasured memory because at last, he was peaceful.

It does get easier, I promise, but end of life care isn't like it's shown on TV. It's brutal - go easy on yourself, there's nothing you could have done different

You didn't fail. You were there. They say people wait to be alone to actually die.

May I suggest counciling to help you process this. Lots of love to you.

I completely agree.
OP, what you witnessed is a perfectly normal death. Listen to the podcast - it will put your mind at rest x
https://podcasts.apple.com/gb/podcast/conversations-with-annalisa-barbieri/id1567190358?i=1000524036065

I found this very reassuring after I was with my mum when she died. It explained/put things into context for me.

I have been there too. I watched my dad die, a process that took about a week of being constantly at his bedside. The experience of watching his body shut down was extremely traumatic. So many things no-one warned me about (and I’d seen my grandmother shortly before and after death, and it was nothing like what happened to dad). The main horror (sorry if tmi) was that different parts of his body were further along the death process than others. Of course he couldn’t eat and then he couldn’t drink, so his lips cracked and his whole mouth was so sore. His skin started to die. He got huge ulcers that smelt dreadful. He was intermittently awake and in pain, and then not. He had dementia so his mind was gone long before this.
Being in vigil for him was agonising, slow, and awful. When myself and my brothers went home on day 7 for a break, he died. There was a huge amount of relief that it was finally over (and then of course guilt about that too).
I can only echo others’ responses that you aren’t alone in what you experienced, and that counselling is very important so you can process this. No-one prepared me for this part of a very complex grief that, 5 years on, I am still grappling with. I wish I’d taken more proactive steps to process it.

Thank you for all the supportive messages, I’ll have a look over the videos, podcasts and books. I can access counselling through work so can ask my manager to put in a referral

The nurses and the doctors were lovely but I guess I wish I’d been more prepared.

I haven’t really got anyone to talk to in real life. My family blame me for prolonging her suffering. They say if I’d left her alone sooner she would have passed away then rather than suffering and being in pain for a week.

Your family are not helping you, shitty thing to say to you.

I'd think of getting some specialist trauma/bereavement counselling, when you're ready.

That's an awful thing to say

That is such an odd thing for your family to say. Makes me wonder why they weren’t more involved themselves and what would motivate them to say something like that?

(If it were your parent or your child or your best friend – would you really want them to be left alone to die by themselves ‘so they die quicker’??? Doubtful.)

I am really sorry for what you have been through. Just over 3 years ago I went through this with my dad. It was pure hell and something I will never get over but you learn to move on for your own sake. If you need to chat about anything just send me a message, happy to help.

I'm so sorry to read this. I have been through similar this week with my own relative. I'm not strong enough to talk or write about it in detail just yet.

The palliative care team and district nurse teams that came to the house were amazing. But in between times, we were just totally on our own. I was told that the system to access them out of hours was to phone 111 and that my relatives record would be flagged as being needed to sent directly to the local palliative team, bypassing the standard 111 triage system.

This just didn't happen. I begged the call handler to seek advice from their supervisor if they hadn't come across this before and weren't sure what to do. The response was that the NHS was very busy and I couldn't expect special treatment. My relative was screaming out in the background as I made 14 calls to try and find someone who would just follow the process we had been promised.

I would not advocate hospice at home for anyone, especially if it transpires your local palliative team involve 111 in any way for the call handling side.

I think it's going to take a long time to come to terms with the events of my relatives last few days. Their pain and suffering is not something that will ever leave me.

@111arentfitforpurpose I'm so sorry to hear that. I had a similar experience. In the end one of the hospice nurses gave me a special number that connected directly to a 111 person. She took my address and said she would send an emergency team. 20 minutes later she rang back and said that we were out of area (we live near a county boundary and the hospice is the other side of the boundary) and there wasn't a team covering our area. I had to go back to the standard 111.

I mention this to make people aware that there are special systems for hospice patients but they seem to vary from area to area. If you're going to rely on them you need to question how it works in your area very very carefully.