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...)

I'm so sorry for your loss op. I think it sounds like an incredibly distressing moment for all of you especially if you thought you had some more time but ultimately I don't think nurses are always going to be able to tell the exact moment.

I think your feelings are understandable even if they are a bit misplaced because you wanted more time with him. For what it's worth from what you've said I think you made it just in time and I'm really glad you were by his side. 💐

Be gentle with yourself - grief is not a rational thing nor linear and it'll be different for each of your family. It will be something you gradually grow around and you'll carry a part of him with you always. I think your dad will have known you were there and I imagine that will have given him immense comfort.

I'd been at my mother's bedside in hospital for two days, without sleeping. She had COPD. The doctor had been round and talked to me about her being transferred to a nursing home for her last days. He told me she wouldn't live for very long. But it sounded to me like days,or even weeks. I was exhausted and the nurses offered me an empty side room to have a couple of hours sleep. They woke me up an hour later to say she'd gone. One nurse sat with me and explained that me sitting by her side was what kept her hanging on. The moment I'd gone, she went.

That brought huge feelings of guilt. If I hadn't have gone for a sleep, she wouldn't have died. I should have stayed awake, and waited, and been there.
But I was weak and exhausted and emotionally drained. I thought a couple of hours sleep would see me through for what tomorrow might bring.. But she died while I slept. Massive guilt for a long time. I was there for her last hours, but not her last minutes. I was in the next room. I thought I would wake up a bit refreshed to hold her hand through it. But my human weakness made me grab that chance of some sleep. I thought she had longer. They gave me to understand that it was days not hours. I felt ok with needing sleep. to get me through the following day. I thought I could be more support if I had some rest.

It never occurred to me to blame anyone. Not the doctor or the nurses. They obviously expected her to go on for a few days at least. It wasn't their fault. They just cannot know when someone will die. However experienced they are, they just really cannot know.

Just as an addition, my father had a heart attack at 65 years old, Nowadays, he might have a fighting chance, but 40 years ago people were much more stoic and didn't have cars to drive to A&E , there was no 111 and people were reluctant to 'bother the doctor'. even if you had a telephone which a lot of people didn't it wasn't easy if you had a shared line. You would have to knock up the neighbours who you knew had a phone,.
So he suffered an agonising heart attack overnight, got ambulanced to hospital next morning and died within minutes of getting there. No time for clotbuster treatment.

I. maybe unfairly, blame my mother for that. She said he forbade her getting a doctor to visit that night. Personally I would have called and ambulance myself.
Immediately.

I'm so sorry for your loss.

But you cannot predict these things.

The day my mum died my dad said the hospice care team said she could go on like that for a few days. The call was 4.30pm.

I was going to see her next day.

He rang at 7pm to say she'd died.

It's also well documented people often die when you leave the room. It's like they hold on until you won't see their suffering.

Remember your dad for who he was to you. Anger is part of grief.

I am sorry for your loss OP

I'm so sorry about your dad OP.

My dad died recently and they were expecting him to go quickly but it was over a few days. The Dr said to me that people do often wait until they are alone, particularly parents when their children are beside them, a bit like the last protective act they can manage.
He knew you were there, that's what matters.

Firstly, I am sorry that you beloved dad has died, it is tough. As others have said it is really difficult to gauge when the moment of death will be, patients can be absolute buggers, sometimes they will hang around and others will slip away almost without you noticing.

Most common though, is waiting until friends and family are out of the room... my mum did that to my sister, then in turn, my sister did it to me. However, the thing to remember is that they will have known you were there for them, just know that they will have known that you have been there and that is why they were able to slip away.

Each death is different, like our lives, being there when they are able to go will never compare with being with them throughout their lives, laughing, loving and feeling loved by them. Let this go and focus on making them proud by how you live your life.

I agree with everyone.

My relative did that stop/start breathing for two days. Everyone in the hospice thought he was dying as in would be gone within an hour or two. He didn't, and it kept going for ages. They were sure he was doing the gasping, but it went on.

I'm so sorry, OP, it's very upsetting. The nurse could not have predicted the moment of death though, it sounds like it was minutes, though, whereas it can be days like that.

Even when people are clearly actively dying, it is impossible for anyone to say when it will happen. Like others have said, death isn't the moment breathing stops. That is just the moment breathing stops. So you were actually there when your dad slipped away. And take comfort in knowing that - to me a nurse - it sounds like it was peaceful. That is the way you want it to be.

I'm sorry for your loss.

Sorry for you loss :(

It's likely that your Dad knew he was loved and you were with him.

Nobody can really predict death. Also when I worked in a carehome it was well known that people often seem to slip away in the moments that loved ones nip off to eat or go to the loo. Almost like they are hanging on to last few moments with their family, being alone seems to allow them to let go. It’s incredibly common.

Kindly yabu but its understandable.

This.

It sounds as if you were there as he took the very last breath OP . I think he would he’s been able to hear and feel you there.
no one is at fault here.

Sorry about your Dad.

I don’t think the prediction of death is an exact science. Nor, in many cases, can a person’s death be given an exact time. They close down gradually.

Some hang on until a date, until someone has visited them, others slip away when someone’s left the room, gone home.

I’ve read that the last sense to go is hearing and so if you spoke to your Dad just after he had taken his last breath I think he may well have heard you and gained comfort from that - as you should too.

I lost my mum last December, we were told she was actively dying but it would be 3 or 4 days.

All family having spent many hours with her we went home very late to sleep and I explicitly said any change in condition call me. The only call I got 5 hours later was to say she had passed 20 minutes earlier. Whilst the fact she died alone will always haunt me no one can predict when it will happen

I am so sorry for your loss xx

I'm so sorry for your loss. Grief is terrible and I think you are bring hard on yourself and gently hard on the nurse. When my baby died last Christmas, and the life support was removed, they thought 5 mins at most because he was so sick. He lasted 45 minutes. To be honest the longer it went on, the harder it was seeing him pass. I'm so sorry for your loss bit be good to yourself. He knows you were there trust me. Xxx

I'm sending you my condolences OP. I don't think the nurse is at fault here though.

Like others have said, it is very difficult to predict a time or date of death. I've worked in healthcare since I was 18, and I'm an experienced ward nurse (I'm not a palliative nurse though), yet I still missed my Dad's passing by a few minutes (I had been sitting with him all day, and then had to collect my DC from after school club and give them a quick supper before coming back in). I knew that his prognosis was not good, but I couldn't have guessed when he was going die (he'd been on an even keel up to that point)!! Honestly, some people hang on until their loved ones go for a coffee or to the WC etc and then they will die. Others can take more time.

I have also been the nurse in your Dad's palliative nurse's situation. I was giving family an update about a patient's situation (family knew that patient was under palliative care). As I was updating them and explaining the plan, I glanced over at patient and saw the patient's breathing pattern markedly change - so I quickly prepared the family (just in case) and made sure patient was comfortable. Patient passed very peacefully soon after that.

You were with your Dad when he passed, and you told him that you loved him. Please be kind to yourself. Also remember that grief can kick up a whole range of emotions.

For other posters, please know that we do try to sit with patients who are dying as much as we can if their families are not with them.

MIL sat with FIL for 3 days solid, she left to have a shower and he passed away, they do say they go when alone sometimes
sorry for your loss

I think it's because they know you can carry on without them (even if it feels like you can't) they kind of think it's ok. I can relax. And let go.

I’m a nurse with a lot of experience in end of life care. I also lost my own Dad in January and there were several moments over the two days before he died that I thought he was taking his last breaths, but 10-15 seconds would pass and he’d start breathing again. He did have severe sleep apnoea which made it more complicated, but even I couldn’t predict that his actual last breaths were his last until there were no more, because that breathing pattern lasted two days. I didn’t sleep for longer than five minutes at a time because I didn’t know if I’d wake to see him again. I’ve seen people go five days with the same breathing pattern, and often silently willed them to let go because I know what it does to their families. Several times I told my own Dad, out loud, that it was okay to go and that we would all be alright. I wanted so much for him to stay with me forever, but I also couldn’t bear to see my strong, lovely Dad (who had been the picture of health just three weeks prior) struggle along in a body that wasn’t working because his brain hadn’t switched back on in the right places when he was resuscitated.

I think you know YABU, and I say it in the gentlest way possible, because there is nothing reasonable about grieving. Being angry with your Dad’s nurse is just misplaced grief. Anger is a normal part of this whole shitty process, and it makes us latch onto the nearest person because we look for someone, anyone, to blame when there often isn’t anybody to blame.

I wish you and your family as much peace as you can find

I’m so sorry for your loss OP, but glad this thread is bringing some comfort that your dad would have likely known you were there at the end. Also reassurance that anger is very normal- but can’t be directed at the nurse, or at yourself.

I walked this tough road with both of my parents in hospice care. With my dad, we were told several times over a couple of weeks that his death was likely imminent. We were in and out of the hospice numerous times! Eventually we were told it would be hours. It was another day and a half after that… his illness (cancer) had not affected his heart and he had been a strong and fit man until a couple of months prior to his death, so his heart just kept on going at the end. The stubbornness is almost comical now I look back on it (because I’m 11 years on now, and there are memories I can smile at now, in amongst all the painful ones). My brother and I sat with him all night. Had a beer each and listened to his favourite albums, chatting about our childhood camping holidays (dad was completely unresponsive and doing the stop/start laboured breathing). In the morning, the nurses cam in to turn him and asked that we stepoutside briefly, saying they would call us if anything changed. We were outside the room for no more than a minute or 2, when a nurse appeared at the door to tell us to come in. And he had died, just like that. I’m certain he waited for us to bugger off so he could die in peace. He was a proud man and wouldn’t have wanted sadness, pity, sentimentality or any of that.

Two months later, my mum died in the same hospice. Two days before she died, she really rallied; was sat up in bed with more energy than she’d had in months, saying she wanted to put her best earrings on and go outside 😂 This ‘rallying’ is also something that some palliative workers are familiar with. Suddenly people want to eat or chat or move about, despite being actually in their last days or even hours. On the day she died, my brother and I sat and held her hands and told her how amazing she was. She chose that moment to slip away.

I have found enormous comfort over the intervening years in the belief that they each chose the right moment for them. In time, I have come to see them as ‘good’ deaths- I really believe there can be such a thing; just as there are good births- the actual event itself rather than what comes afterwards.

Wishing you strength for the tough times ahead. Grief is all-encompassing but it is survivable. 💐

So sorry for your loss.

As others have mentioned, these things can't be predicted but it is a well reported phenomenon that people wait until they are alone/relatives not present before they pass away. So go easy on yourself and try to think of it as a demonstration of your Dad's love for you - one last act to try to protect you. He'll have known you were there.

Be kind to yourself in the days and weeks ahead.

Sorry for your loss. I’m a nurse and work with many patients at the end of their life, it is not possible to predict the exact last breath or final moments.

I’m so sorry for your loss.

I don’t think the nurse did anything wrong though.

I’m pretty sure it’s not an exact science and that she had no way of knowing whether it would be that moment or some hours later.