Struggling with horrible final hours

[Needtochangethings]

I'm hoping this isn't triggering for anyone else but it's something I'm struggling to comprehend.

A week ago my lovely father passed away at home. He had been diagnosed with very late stage cancer two months prior and it had made its way to his brain.

He was keen to stay at home and so, we did everything we could to make this happen. We adapted the house - including hospital bed and over the final few days he deteriorated quickly, mostly unconscious, with a driver delivering pain relief and a relaxant.

All was going 'well', while he wasn't awake/alert, we'd play his favourite music, chat to him, friends and family visited.

We had all presumed he would drift off peacefully in his sleep, as everyone seems to say in these situations.

However a couple of hours before he died, he suddenly started crying out in pain. It was the middle of the night and while we had a care worker with us and a neighbour who's a doctor came round, neither were able to administer any pain relief.

It took an hour for help (nurses) to arrive and give him extra morphine. He then did calm down but then about an hour later he died.

It was incredibly traumatic for me and my mum and siblings to witness, and we are struggling to process what happened.

How can I come to terms with what happened? I never thought his life would end like this.

My condolences.
That sounds like a really difficult and traumatic situation, but it also sounds like you all did everything you could for your father.
It's only been a week since it happened, so it's still very very recent. You are in chock, and you are grieving.
Your father's wish was to die at home, and you were able to arrange that.
Can you sit down and talk with your family, or with the other persons who were there when he died? Talk about your feelings and what happened.
Perhaps talk to a grief counselor?
Again, my condolences.

So sorry for your loss, I would also suggest a grief counsellor.

Thank you both for replying. I think you are both right and a grief counselor is the way forward.
Within the family have spoken about what happened, and I think we are all traumatised by it but are handling it in different ways.

It might help to think of it like this. By having him at home you managed to give him what he wanted, a mostly pain controlled end in the place he wanted to be, with the people he wanted to be with. That one hour is a very short time out of the two months.

My condolences, its a difficult thing to witness and the aftermath is wierd and traumatic. You did the very best you could for your father right through to the end.

The traumatic aspects fade in time, although I still get occasional flashbacks to my mother's death nearly eight years on, the details are not as painful now.

Try contacting https://www.cruse.org.uk/ if you need some support.

@helpfulperson thank you, this is what I keep trying to tell myself. I just wish it hadn't of been right at the end.

@unsync that's very helpful, thank you. I'm sorry you have also been through similar.

I've been something similar, grandad has a short term but out of control illness and they called us in unexpectedly and said today was the day.

We knew he had hours so we all turned up at the hospital, he was conscious, away and talking to us. He asked for us to have pictures together and we got to say nice things, all very peaceful, but then the last 10 minutes came around and it was awful. He starting convulsing and fluids were coming out of his mouth etc.

It traumatised the feck out of me, and took a long time to not think about it constantly, but I kept telling myself that I couldn't let someones memory who I love very much be tarnished by those last traumatic minutes.

You did a wonderful thing being with your dad, it's a really difficult thing to do but he would have known you were there and he wouldn't want you to dwell on it. Your presence would have brought him a huge amount of comfort, try and focus on that for now and as time passes by, you'll be able to smile when you think of the good times.

You'll get there OP, seek some grief counselling if you need to, it really helped my mum. Be kind to yourself in the meantime, it's still so recent 💐

Apologies for the million typos, Im at the vets (for the cat not me).

I am so sorry to hear about your loss.

I was in my early 20s when my grandmother died in a nursing home. I was called in to see her by the home manager and I sat with her for a while although she wasn't really awake. Towards the end the matron suggested I say my goodbye and go to the lounge area. I was surprised and asked why so she told me that the end isn't always as pleasant as we would like and that it is much better for me to remember her the peaceful way she was. I duly took her advice and and went to the lounge. The matron came to see me a while later to say my grandmother had died.

More recently I have suffered another loss and it was not so easy. I am now much more understanding and very grateful that the matron in the nursing home ushered me out of the room that day. Unfortunately it can be hard if someone dies in a lot of pain, but please remember that it was unlikely that they were fully conscious at this final stage and try to remember them as they were before.

I went through very much the same thing at home with my mum. Serious mistakes made by the utterly useless district nurses meant my dm suffered near the end. I was so distraught and it was so terrible that I threatened to take certain actions myself if they didn't help us. They just told me they would call the police and I would be arrested. We were treated terribly by the people who were supposed to be caring for my mum, including the hospice who had been visiting her. Yet two days later they all suddenly had time for me and were all blaming each other and they wanted to hold an inquiry in my house where my dm had just died. They seemed shocked when I told them all never to set foot in my house again. The result of the inquiry was they implemented new procedures for district nurses when first visiting patients like my mum, so they didn't make the same mistake again. Too bloody late for my family. I'd never have someone at home who was dying ever again. No one tells you that not everyone slips peacefully away in their sleep. I am sorry for your loss and I hope you can find some professional help to assist you in coming to terms with your experience. I didn't and 8 years later it haunts me every day.

I'm sorry OP. I too had a similar traumatic experience when my dad died. He was in dreadful pain which got worse over a number of days. The pain management wasn't properly administered until the final hours when he was finally peaceful.

It hasn't left me I'm afraid, I continue to feel quite traumatised several years later. I'd been with other close family members when they died, but they were peaceful.

Counselling might help but I didn't do this (despite having counselling for another purpose). I didn't feel it was useful for this situation.

I'm really sorry for your loss 💐

I’m so sorry for your loss, and that you and your family went through this very traumatic experience.

I had a couple of similar moments with my parents when they were dying.

My Dad had multiple brain tumours caused by melanoma. Towards the end, he was in a bad way in hospital and non-verbal. It was unclear how much he could understand by this point, but we and the staff caring for him felt that he was not really capable of any normal thought or comprehension. At one point, the staff were moving him and (sorry if this is too much) it became clear he had emptied his bowels and so the staff said they would change him. I readied myself to step out of the ward for a moment and Dad began thrashing about and grimacing. I don’t think he was in pain but rather had a moment of lucidity and couldn’t bear what was happening to him. This once proud, capable and fiercely intelligent man reduced to being changed like a baby because his brain didn’t work any more. I think he felt humiliated and it was unbearable to witness

When my Mum was dying of stomach cancer, she was in a hospice and her pain was mostly very well managed, but very close to the end she became more lucid and cried and wailed in pain like a small child. She was also alarmingly thin by this point.
It was incredibly distressing to see. More pain relief was then administered but it took some time to take effect.

Those moments and those images stayed with me for a long time. I am 10 years on now and can still recall those moments more clearly than I would like to. But for the most part, I remember my parents as they were before they were ill. I remember the good times and the great times and just the ordinary, every day times more than those short moments of horror.

Bereavement counselling helped me a lot and gave me a space in which to talk about those awful moments. Those are not the sorts of things we tend to offload on our friends when they ask how we’re doing so it can be enormously cathartic to pour it out to a professional. I hope, in time, you will find ways to process what you have been through. 💐

I'm so sorry for your loss.
We had a similar situation with my dad.

I know a few people have mentioned grief/bereavement counselling but this isn't usually offered for the first 6 months after losing your loved one as you have to go through the grieving process.

Take comfort in the fact your dad is now pain free and at peace.

I was sitting next to my dad in his last days when he suddenly sat up, grabbed my arm and cried out 'help me please'
There was nothing I could do, the most horrendous and heartbreaking thing I've ever experienced.

@ScoobyDoNot

I got a lump in my throat reading that line about your dad. 💐I had similar & it haunts me - hours of him moaning pitifully about the pain. It's nearly too hard to type.

The last day I was with him where he was properly conscious he had to be transferred via ambulance to another hospital. The screams as they moved him.

I had never known such things were possible.

I hope you are doing ok now.

I’m still traumatised. My dad insisted in dying at home from melanoma cancer. It also haunted my daughter who helped care for both him and for my son with ASD. He has blood pouring from his eyes and jaw. My siblings and I were doing lengthy 6 or 7 hour shifts at his. People who don’t advocate euthanise have never nursed a dying parent - I don’t want to live like that. Although the trauma becomes less painful with time honestly, I don’t think that I will ever get over it and forget. Perhaps that why death used to be in cottage hospitals before cost saving initiatives and those small hospitals were shut down. The only saving Grace was the end of life morphine pack the hospice gave us - thank god. The worst thing was he died after the toilet whilst with a carer but nine if his children or grandchildren. That day I had just seen a paediatrician and my son was diagnosed likely ASD ( there was a subsequent MDT ADOS to confirm). I had been with him for several hours but went home exhausted from everything.

I feel your pain op. My Dad died 5 weeks ago after being admitted to hospital. The care was utterly shit and he died after having a cardiac arrest on ITU, he had sepsis from a wound he had on his foot. I had tried for a few days prior to get him admitted and nobody would listen. We got that awful call at 5am to say get there but he had already gone. I am traumatised by his death and made far worse that I am a nurse and tried to get him admitted in the 3 days prior to his death but no fucker would listen. I always say that a person only dies once and the family have to live with memory of their loved ones death forever, I couldnt even give my Dad a 'good' death I feel so guilty. I have meetings coming up with two NHS trusts that dismissed me/him which I am dreading. I know this won't make things any better for you but please know you are not alone x

Oh OP that sounds awful.I didn't want to read and run.
I lost both parents in 21 and my dad had the same situation at home as yours while my mum was in macmillan. I and they were very lucky that they both seemed to pass very peacefully when the time came.
Try to focus on the fact that he is at peace now and I'm sure he would say he doesn't want you dwelling on something you couldn't possibly of controlled, you bring with him was the main thing.
Speak to someone and be kind to yourself.

I really am so very grateful to everyone who has taken the time to reply. Though, it's slightly bittersweet because while there is comfort in knowing other people have experienced similar and have overcome the experience, I feel great sympathy for anyone who has had to go through this.

I must say, that I don't feel resentful/frustrated towards the nurses who came. They were on another call when we reached them and came to us as soon as they could. It was sheer bad luck that it was a busy night. If it had happened the night before or even 20 minutes before, perhaps they would have got to us sooner. Of course, I wish they were better resourced so it wasn't a situation where there had to be queues of people awaiting them.

@Fedupofdiets I'm so sorry, this must be so incredibly sad for you, especially given how hard you worked on trying to get him care.
You did all you could and he would be so incredibly proud of you for fighting for him.

@Oaktree1233 I'm so sorry for your experience and how it has impacted you and your children. I really do hope that as the years pass you are all able to forget the pain. Please don't focus on how you had to go home exhausted, you can only run on tiny amounts of sleep for so long and when you have other responsibilities, there is no one-size-fits-all solution.

@EarringsandLipstick @ScoobyDoNot it sounds like we had very similar experiences. I'm so sorry for you both

@Needtochangethings Thank you. The worst thing of all is that we were not with him, he had all this love (my Mum and 3 brothers) and yet he was alone, we had waited in the relatives room until midnight after he had been to theatre and got sent home. God I miss him. I used to be a District Nurse and have been with many families in those last days and hours and it is mostly peaceful but utterly brutal when it isnt. It is horrible to have traumatic memories and I hope that both of ours fade and we can look at back at who they were not how they died. Sending hugs your way x

I’m so sorry for your loss, my dad died in similar circumstances and the final hours were horrific. Be kind to yourself and get counselling when you are ready - it took a year for me to talk about it and I wept and wept. I kept it buried for a year which didn’t do me or anyone around any favours x

I had similar experience with someone very dear. I wish the law would change. It's awful for the person going throught it, and awful for those with them. Just awful. Nobody wants this.