AIBU to be absolutely livid with this palliative nurse?

[Smallwhitebutterfly]

My dad had a massive stroke. We were in hospital for a few days before a palliative care nurse came to see us for the first time. I asked her to describe the signs when someone is dying - she said sometimes they frown if they're in pain and their breathing becomes erratic. Just as she was saying that my dad started to pause for a few seconds while breathing. We told her he had been breathing regularly before that. And she did say that was a sign he was deteriorating. Then he did this big grimace after being completely unresponsive and not moving his face at all for the past few days. We asked her about it and she said it looked like he needed to cough. But she didn't say this is it, it's happening, he's dying right now. She kept chatting to us about what the palliative care team did and gave us her contact details. Because she made it seem like this wasn't his final moments I popped out to the loo quickly. When I got back my dad had stopped breathing. Thinking I had missed his last breath I rushed to his side to tell him I loved him and he gave the tiniest gasp and didn't breathe again. AIBU to be angry that this woman experienced in death who didn't realise his final moments were happening and stole precious minutes we could have been speaking to him as a family? And also that it made me question whether I was actually there for the last breath? (I realise some of this anger may be misplaced grief...)

Thats so sad but its a difficult one. People have been known to be involved in accidents rushing to get to hospital in those circumstances so I think that generally the kind of calls to say come in because she is dying now are no longer made. Additionally there may have been no visible change in condition. People do just slip away and while patients in hospital are monitored and checked frequently, there genuinely may have been nothing to see or otherwise notice until the last breath happens. As has already been said, its anecdotally common for a person to actually appear to wait to be alone to let go. My grandmother in law was ill in hospital with heart failure. We all knew, including her, that it was touch and go. I remember the last visit. She asked after all the family, where they were and what they were doing and we had a nice gentle chat. She said to me that she was tired and would rest and told me to go and take a walk in the sunshine. I saw her settled and dozing and left and she fell asleep and just never woke again. I remain convinced that she knew at some level that she was going to die and wanted to be alone to do it.

I'm so sorry for your loss. It's a hard feeling knowing you missed the last moment but also take comfort in the fact you were there for him so much. From what I've heard it's actually quite common for people to pass when a loved one leaves the room for a minute etc. My sister was in palliative care for 2 weeks and each day we thought it may be the day. My dad was with her all evening on the day she died but she passed away when he went to the toilet. Seeing them go through palliative care is so hard and it's something I'm still finding hard to process.

Hearing is the last sense to go. He heard you.

I am sorry for your loss. I am glad that this thread is helping you with very understandable thoughts as you try and process your grief. It sounds like you loved your dad a lot.

I have learned something from your thread. I didn’t realise so many wait until their loved ones have left the room. It makes me wonder if people struggle to hold onto life when their loved ones are sitting around them in order to make every moment last. And then when they are alone, they kind of stop fighting and peacefully pass?

I’m very sorry for your loss but I don’t think you can blame the nurse for his last moments not being how you want them. It’s not uncommon for people to wait until their family have popped out for the moment of death to come. Maybe they find it easier to let go that way.

In my experience - loved ones leaving even if only for a few moments kind of gives the dying person permission to let go
Whilst you are there they are actually hanging on and struggling to leave thus world as they don’t want to leave you or other loved ones - even though it’s time to
It’s very common and you and the health professional did nothing wrong - it’s so hard to predict
People who are dying sense the love around them and know how much you care
I hope all our responses bring you peace at this incredibly difficult time x

This was my experience with my mum. There'd been someone there day and night for about a week. The nurses came in to turn her and freshen her up and we decided to go to the cafe. Got there and decided we didn't really feel like eating, so we went straight back. She was clearly dying when we went into the room, so if we hadn't come back when we did, she would have been gone.

I hear a lot of people say how their loved ones passed away when momentarily alone. I know one family who got as far as the hospital car park to go home for a change of clothes etc, when they got a call to say their loved one had passed away.

@Smallwhitebutterfly you were there with him in life, which is the most important thing xx

No one can know the last moments. Last year my grandad was nearing the end of his time and I had just got the palliative team involved for at home pain-relief as the weekend had been awful. She came over to do the assesment and said how poorly he was etc. She gave me a prescription and some notes. I kissed grandad and said I would be back in a moment. Took her to the door and popped into the front room to check on Nan. She hadnt wanted to hear the nurse talk about how ill he was. She was fine and I gave her the highlights of what was discussed. She went into the backroom to check on him and he was gone. That was it. I had been out the room for less than 3 minutes. He had been there wheezing and looking at me moments before.

So sorry for your loss.
Sadly it is a well known fact that patients often wait until their loved ones are out of the room before they take their last breath.

The palliative care nurse did her best to inform you, but dying is not a precise science.

I don't tend to comment very much on threads, I tend to lurk in the background, but I feel compelled to comment here due to the nature of a previous career.

I just wanted to reassure you that you were there for your dad's last breath, the little gasp you describe, that was it, and you were right by his side. Also, a person's hearing is the last thing to go so he knew you were there and heard you tell him you loved him.

Please don't be angry with yourself for leaving briefly, as others have said, you could have been sitting there for days and it still happened when you popped out the room. But that's irrelevant now and the important thing you need to remember is this.......you were right there with him in that last moment and he knows you loved him.

Having been with many people as they die consciousness leaves well before the last breath not after, I hope you find this equally comforting. 😞

Also be thankful that you could be there, I didn’t know either of my parents were about to die so I couldn’t be there. One had the other and the other was alone.

You’re grieving and anger is a part of the grieving process.
Please be kind to yourself and allow yourself to work through the process without acting impulsively as a reaction to it.

So sorry for your loss. My grandma did what you've described with your Dad, but for 16 days. It was horrendous. I'd say don't be angry with the nurse, she's probably seen so many situations with death taking vastly different amounts of time.
Be kind to yourself at this horribly sad time x

I believe my father 'waited' to be alone in hospital before dying. I take comfort from thinking he didn't want any of his children to find him at home.

My mother was 'any time now' for 10 days. This allowed time for friends and even far flung family to say goodbye and for each close family member to sit with her alone. She died with just my Dad and us 5 siblings all together with her. Again, I take comfort in thinking she chose that moment.

We never really know, but we have to make peace in time.
Disbelief, blame, anger...they're all very normal emotions.

I'm so sorry for your loss, OP. It sounds like you were very close to your Dad. That is something to treasure.

@Smallwhitebutterfly Death is such a mystery- People so often die when their loved one leaves the room- It's almost as if they want to slip away in private.

Our Dad had a dread of ''People mob handed, waiting around my deathbed'' - and when Dad did die , he died at night while we were all asleep in the same house {It was expected}.

Sorry for the loss of your Dad.

It's unscientific, But like to think we will be reunited on some level when we too die.

{Look out for small white butterflies, too!}

Noone knows the moment until it has happened - death can be quick or slow even with erratic breathing. It's unfortunate he died when you feel your attention was diverted with this nurse I can see that, and you trusted in her that it was just a facial grimace. But since a death occurs in seconds, it's likely that one's attention may be diverted/ may be asleep etc. sorry for the loss of your dad x

So sorry for your loss. When my dad died a few years ago the head consultant in the ICU took him off life support and said it would take around 30 mins for him to die. In fact it took seven seconds. There's no way of predicting the precise moment. I understand the misplaced grief, i wanted to strangle one of the hospital admins I had to deal with in the days after his death. On reflection she was just slightly tactless at worst. But I honestly thought she was a heinous cow at the time.

Dad died last week. Lewy body dementia. We have spent last 4 months driving over 4 hours round trips to urgently to be with him as staff thought he was close to dying on a number of occasions.
he died on his own last week…my sibling had been with him, thought he was going to fine (again) as breathing perfectly ok. Sibling got in house 2 hours later to be phoned to say dad had died “in his sleep”

it was a surprise- he was better than he had been in weeks 🤷🏼‍♀️. None of us were there, even though we all wanted to be.

everyone had warned us over last 6 months, including my own SIL who had done palliative nursing earlier in her career, that is is fairly normal people will die when relatives step out, and are no longer holding their hands or talking etc. goodness knows we’d done enough vigils at his bedside by then, to be in no doubt that he didn’t want to die when he had family about - even in his delusional state with LBD

sorry for your loss, please do look at grief pathway….it may help you a little just now to understand the anger etc. you are feeling. It’s perfectly natural to feel as you do, but please do read what others had said . Think about the times you were with her, and the things you were able to talk to her about. …

I'm so sorry for your loss, grief is hard, being angry at somebody for something small and specific is often easier than grief.
You are focussing all of your big feelings on the anger and guilt of missing "the moment"
But you were there for him, you loved him and he knew that.

I hope this thread has brought you some comfort, OP. It has me, I've always worried about a particular thing relating to my relative's death and it has been some comfort to me to see I didn't have control of it.

Thank you so much to everyone who has shared their very personal stories on this thread, it has helped me too.

I use to do a nursing role with end of life care. I agree with pp, it’s very difficult to predict. I would send those on bedside vigils home for food and showers with a promise to call if anything changed. I would warn them though that many people would go while their loved ones were away. Honestly if I had a pound for every time that happened I could have retired already. I always felt like patients knew and would think ‘I’ll just nip away now while no-one is watching’. You were there, on some level, he knew. Sorry for your loss 💐

Sorry for your loss

Active dying, the process you had described to you can go on for weeks, in my dad's case it took 2 weeks.

It is nigh on impossible to predict.

Sadly, that last tiny breath is likely post mortem movement of air, noises persist after death for a while.

The important thing to remember is that your dad would have known you loved him, I wasn't with my dad when he passed, I'd nipped out to mow the lawn, came back and he'd gone.

Grief is a difficult process, it will get better.

I agree, I think they sometimes hand on whilst we are there, then just when you step out they relax and step away.

I have to say I'm also not convinced they can hear you, in my dads last week you couldn't illicit any sort of response, he had by that stage had several strokes on top of dementia, I personally think his body was just about functioning to breath and inefficiently pump blood, and that was about it.

This is one of the reasons nurses are leaving the profession.