My Dad died. It was awful.

[Trifleguzzler]

Hi everyone,

I just needed to get this out I am sorry if it is upsetting for anyone.

My Dad died last night. He had been ill for years with different things going on. He was so brave and so strong he always bounced back but this time he couldn't.

I was there for his final night I sat by him all night in hospital with my step mum.I had researched end of life so I could be prepared. But nothing prepared me for it.

It was awful, he was so agitated they sedate him but when it wore off he would soon become agitated again. I spent the night caring for him, doing his mouth care, putting his socks on, brushing his hair, tickling his head, warming his ears.

At one point he tore his canular out and he was covered in blood.

What was the most shocking was the state he was in. He was so so thin weighed about 6.5 stone.

When I got the call to say I had to go that he was waiting for me. I zoomed up the motorway it took 4 hours to get there and the minute I arrived he gave me his big beautiful smile, said oh hello then said I need to sleep now. He didn't really regain consciousness again.

This sounds ridiculous and I would never not cared for him. But he had family visit who got all of the lovely bedside chats and reminiscing and I got the active dying part which I think has traumatised me.

I researched it because I wanted to stay calm and reassure my step mum that what was happening was normal. And it was text book. But nothing prepared me for seeing my Dad who I loved so much be so scared. The last thing he said was hold me. He was so frightened.

I wasn't there when he passed as by that time he was on steady morphine and so peaceful, I just kissed him told him to be good and left him and my step mum alone. He died an hour later.

Sorry not sure what I am trying to gain from this maybe do you forget that part and remember the good stuff or will this haunt me? Not sure what to do.

I don't have a partner to confide in although my ex husband has been brilliant.

My mum died 40 years ago and i still see her passing clearly. It was traumatic. There was no counselling available back then. It has affected my whole life and all of my life choices. I feel that if i had someone to talk to at the time my life would have been very different. Please make sure you get counselling.

So sorry for your loss OP, it's really tough isn't it. Your part about the reality of death resonated - it really isn't lying back on a freshly-laundered pillowcase and floating off.

I remember all the emotions you're feeling, and particularly the effect of illness - cancer in his case - on his body, it's almost violent isn't it.

All of that said, I want to reassure you. Right now, those awful memories are so vivid, they fill your mind and however hard you search, the lovely memories can't be retrieved. That will change. For me, it played out in dreams; nightmares about those last few weeks, endlessly replayed every night. In the day wasn't much better. As that stage passed, whilst the replaying had stopped, I couldn't bring my happy memories to mind. Even in my dreams I couldn't see him, and that was upsetting. But you know what, gradually as the grief was being processed, the happy memories began to retutn, dreams about him were happier and I felt less haunted by the end of his life.

For now, hang on to the fact that he saw you and smiled (exactly the same happened to me) and he knew you were there. He was loved and he loved you, right you the end. I promise the awful memories will fade, and the happy memories will take up more space in your mind. It's a long and difficult process, but it will happen. Take care.

It sounds like he was suffering from terminal agitation. Its not all that common but can happen. Its more than just 'oh they are a bit unsettled'. It is the complete inability to settle at all. The first gentleman I looked after with it was the most pleasant easy going man who all of a sudden could not be satisfied, he wanted a coffee then didn't, wasnt thirsty, wanted to eat but nothing suited, wanted to stand up but didn't so just spent the whole day up and down all day. I find it quite similar to the transition phase of labour when absolutely nothing is right and everything just feels scary and unmanageable. And it's the transition phase towards death when they go from mobilising and talking to being unresponsive. It can be very difficult to manage these symptoms...even with ongoing reassurance abd medications. I'm so sorry you had to go through this.

I'm so sorry OP.

I was there for my grandmother when she died. It was similarly awful and it shocked me to the core. For a while, I couldn't see anything other than that version of her in my mind's eye. Now though, I struggle to recall how she looked that night. I remember the happy, living version of her.

Sending you love and condolences.

I'm so sorry for your loss.

There's a lovely lady called Julie the Hospice Nurse. You might not be ready for this right now but she has some videos about dying which I have found to be very comforting in the past. https://www.youtube.com/@hospicenursejulie

Thank you all so much. I am sorry I haven't responded to everyone's messages but I have been reading them and it has been comforting.

I realised I feel guilty about talking about his death with any of my family apart from my step mum (as she was there) because I don't want to shatter their illusion that he was peaceful. That I need to protect them from the true horror of it all.
My older brother wasn't there and I have only told him the nice bit where My dad thought he was fishing for Bream. It was after this it all went really awful, but I have left that bit out to save him.
I did the school run this morning and cried on about 4 people. 😔

Hi @Trifleguzzler, no need to reply if you don't feel like it, but I'm thinking of you.
I hope you are getting somewhere towards a place where you can feel more open about what happened - I know that will take time.
Just to give you my experience, when my DDad died, I spoke about it a lot, as it was pretty traumatic. I could see the shock on other people's faces, but then the sympathy and understanding came.
Don't feel you have to hold it in for the sake of anyone else. That's just my thoughts on it.
Sending you all my wishes.

Hey thank you @vipersnest1 I haven't found it in me to speak about it yet. I did to friends who didn't know my dad but not family. Infact none of my family have really been in touch. I guess they are all dealing with their own grief.
I feel a lot more calm now I think. And those really awful parts are easier to push away whereas before I was totally consumed by them.
I am back to work on Monday so will see how that goes. I don't feel ready and just want to curl up in a big ball but I have responsibilities and need to crack on.
Still no news of the funeral infact we don't even have a death certificate yet, I have tried to call my step mum but she doesn't answer and then sends a follow up message kind of shooing me away.
She did this in the last few weeks of his life too and I would really have to fight for updates. We have always had a good relationship but I have a feeling it might fizzle now. She doesn't keep in touch enough for us to maintain a relationship.
My own mum hasn't even called me to check up. Just one text in the last week.
I guess as an adult I am expected to just get on with it. It's weird though.

@Trifleguzzler I’m really sorry you feel so alone in this. It’s a real shame your step mum is keeping you at arm’s length.

My mum died of cancer during Covid and I felt very alone. Something that helped me a lot was listening to a podcast called Griefcast. It’s better than it sounds! It’s a lovely comedian called Cariad Lloyd interviewing interesting people, often other comedians, about someone they’ve lost. I used to put it on when I felt like I wanted some company in my grief, so to speak.

But what I really came on to say was to share a thought I had when my mum was dying. Parents see us into the world, and we see them out of it They do their ‘job’ and ours is at the end of their life. It doesn’t mean it’s easy or pleasant, but it helped to give me a sense of order and balance about it all.

I wish you all the best. It will get better.

@Rainallnight thank you that's actually really comforting. And I will check out that podcast thank you.

@Trifleguzzler, don't go back if you're not ready. This is a time to look after yourself and not worry about anyone that you don't need to. I had two weeks off after my dad died (his was a quick death after a diagnosis of cancer where he was given a prognosis of at least a year), but one after my mum did as I was more prepared for it, so to speak.
As far as your step mum is concerned, obviously she doesn't have any control over the death certificate (the coroner sent my dad's back to be amended so it was more accurate), but have you asked her what she / your dad want for the funeral? Sorry if you've already asked her, but it might be a way for you two to work together and maintain a bond. Regarding contact, I'm assuming that your dad was the only 'family' she had, so it will have probably hit her very hard. Reaching out to her about the funeral might help with that too. I hope so.
Keep coming back to offload if you need to. I'm certainly here if you need an ear.

Thank you @vipersnest1 she has her own family, sister, nieces parents etc. She was a bit younger than my Dad, so she has a group of friends etc. So she does have a lot of support.
She loved my dad so much but she felt he was already gone a while ago as he had Dementia so I feel like she has done her grievening a while ago.
I have said I will help her write something for the funeral, that i will help sort it all out with her but she doesn't answer my calls. I did some jobs for her the other day regarding benefits she will be entitled to.as she is disabled and sent her that over but it was all guess work as she didn't respond to my messages for info I needed.
The delay in the death cert will be because she is accusing the hospital of malpractice, so there may need to be an autopsy. I haven't had any more information than that.
It's horrible the waiting part.

I lost my dad 2 years ago, he wanted to die at home, so we fulfilled that wish. It was supposed to be hospice care at home, but he wasn’t cared for except by us. In his last few weeks, it was my name he called, I sat with him most of the time, played music to him, had little chats with him and held his hand. I can’t tell you the horrors he and I went through, before and after his death due the hospice staff not visiting him when they should. Leaving him without suitable pain relief.

He is at peace now, reunited with my mum, the love of his life, and his mother whom he was devoted to.

I know remember the good times, my children have lots of lovely memories and we talk about him often. I will always miss him.

I send you love at the very sad passing of your dad, but he waited for you, remember that smile forever xx

My dads side of the family who had so many opinions during his last few weeks about how I was dealing with it (I’m an only child so it was all on me) haven’t been in touch with me either! I can’t work out if I’m pissed off or incredibly hurt?!

it’s still really hard and some things still take me by surprise and floor me but I am starting to remember happier times as well as the sad final few weeks!

Had an update today and the coroner thinks there is a case for neglect by the hospital. There is going to be an inquest.😔

Oh wow, @Trifleguzzler, I expect that's knocked you for six.
On the face of it though, it looks like your step mum's instinct might have been right after all?
Could you reach out to her about this and maybe attend his inquest together? Personally, I'd advise that you should as it might put some of your questions to bed.
(A warning though, often there is an initial inquest and then the final one quite a bit later.)
How are you doing personally?

Yeah I will be attending. We have spoken in depth about it all. And my brother is in agreement we need to proceed with it all.
I feel gutted, the fact he mightve been saved had he been treated properly is devastating. I am struggling with it.

If necessary, the coroner will have a private conversation with you and the rest of your dad's family to explain what is going on. It's not totally heartless - they do consider the family and their feelings.

It's so hard. Just remember he waited for you to get there and gave you his big smile before he passed. Hold on to that OP.

It's my Dad funeral tomorrow and recently my SM has been not great to me. Lots of I knew him better than you type stuff, wouldn't let me send flowers, or choose any music. She didn't even tell my brother the date of the funeral. Its all very odd.
I know she is in a bad place so I am keeping my mouth shut, but I am not entirely sure I will be in touch again after this.😔