My Dad died and I'm despairing
My Dad died 48 hours ago after five weeks in hospital. Cancer. But it was more traumatic because we thought he was early stage and it turned out he was end stage, so we were working towards getting him discharged, and instead he went downhill fast just as we thought we were close to this goal. That was so hard. It's like he was snatched away from us just as we were going to get him back.
I am completely heart broken and spiralling. He and I had been distant for years and struggled to connect in my adult life because of my late diagnosed autism, and my tendencies expressing themselves more strongly as I got older. The thing is, he was autistic in some way, as well, but this didn't create common ground for us, it created friction. That is a complicated story that I won't go into, now. I will just say that over the past six months there had been a thaw in the ice and our relationship was beginning to reset. Then, when he went into hospital a month ago, it began a deeper reset and I spent a couple of weeks building him a convalescence room in the spare room, and visted for hours every day, and spent a lot of time talking to nurses and doctors to try to keep things moving and motivate progress: to advocate for him, because he was always bad at advocating for himself.
But now he's gone, and it was so hard. They never got around to taking a biopsy (which we pushed for, but mistakes were made which kept causing delays and his fitness declined too much). We were with him for his last night, right to the end, even then having to argue for him because we knew he was dying and needed the "good" drugs that only hospices use, but the staff still thought he might recover and be discharged!
He spent five weeks on a ward, in that noise and discomfort, constantly sleep deprived, constant discomfort on those horrible mattresses, dealing with infection induced by an endoscopy (whoch they did instead of the biopsy, and because of the infection, they could never go back and biopsy).
He spent all those weeks in that hell, not at home or at least in a hospice, and I feel so horrible and desperately sad for him that this was how he spent his last weeks. And I feel so guilty because I took him in to hospital, but I never brought him out! I never brought him out. And I couldn't protect him from the mistakes they were making. I tried! But every day it was a new doctor, never any continuity of care, and I had to start again with that new doctor.
He went in and he never came out, and I've lost my dad just as we were getting back together and I'm so utterly broken and frustrated and desperate. I need him more than I knew, and for so many years I pushed him away, and just as this started to change, he was stolen! He was taken away!
I need help but I don't know where to go.
Comments
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I'm so sorry to hear about the death of your Dad. I can see you were rebuilding your relationship as adults, so to lose him whilst you were getting closer is going to throw up all sorts of emotions. Remember you are at the very early stages of bereavement, so it's important to be kind to yourself and keep talking to family, friends or a bereavement organisation.
If you find it easier to write things down, as you have done here, that's okay as well. Seeing your emotions on paper or a forum helps to release a lot of stuff we are carrying.
You've reached out to this community, so you're not alone.
I was a bereavement volunteer and these organisations can offer all types of emotional support, so it might be worth contacting them.
Mind Bereavement Organisations in the UK. I've included a link to a number of organisations in the UK.
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Hi @Commanded2bwell I am so very sorry for your loss. I am sure it must feel so much worse because you do not feel he got the treatment and dignity he needed in his last days.
You took him into hospital because you thought it was the best place for him to be, please do not blame yourself for him not coming home again.
The following link might be of interest to you.
Anytime you would like to talk about how you are feeling we are here for you.
Please take care of yourself.
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Aw man I'm so sorry about your Dad! My own Dad's got Dementia and he's 77 and I'm worried about his health, plus Dementia does run in the family, my Nan had it and she's been dead 10 years in September, and my Uncle's partner died recently, she was in her late 80s.
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I'm so sorry for your loss and all you've been going through @Commanded2bwell. Please, please don't be hard on yourself. Reading your post it's clear to see that you fought for your Dad continuously throughout this really difficult time.
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not much moves me any more but i feel your pain @Commanded2bwell that was so raw and real
Remember he went knowing you loved him and cared, all the other **** doesnt matter at the end, you were there and he would have known that and loved you all the more for it
stop blaming yourself and focus on the good times and healing you got to do the last few months
it feels cruel for him to be taken when you were rebuilding, but at least you have these recent times to cherish. im still lost without my dad, the pain changes and gets easier to live with
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Sending you lots of love @Commanded2bwell, I'm so sorry you lost your dad in such difficult circumstances. It sounds like you did everything you could and were looking out for him right until the end, so please try not to blame yourself for how it happened. The community is here if you need to chat about things 💛
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Oh im so sorry for you when your dad needed you was there i felt every word you wrote in an ideal world we would have a perfect family relationships but i hope oneday you can get comfort from knowing you was his voice and spent that time with him as painful as it was you was by his side im preying for your days to be managable we are here for you
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Thank you, everyone.
I've been talking to friends...
I'm suddenly very upset again. I found a short video from a museum visit we did two years ago. Dad is talking about how to operate a particular kind of pump on the back of a fire engine (he was a seafarer and the a Firefighter and had so many stories and so much knowledge). I recorded it without telling him, because I wasn't sure if he'd be as relaxed talking if he knew, and he was never really into recording himself.
It was amazing to hear his voice again. My mum loved it. We've all been struggling to remember it because he lost his voice before he died.
But it reminded me of something... a few years ago, after sitting and listening to another story, I immediately wrote down the highlights and it occurred to me to record them in the future. I could create a small archive of his time at sea and other things, and of him describing how things work. At that time I wasn't thinking of his death, just to record the details. If only I had thought about that, because he has been extremely unwell for years, but soldiering on because he was always so strong. He always got through the next medical crisis, and maybe that made me complacent…
I never did it. I wanted to. I liked the idea. I simply didn't. Everytime I had just heard a story, I had the idea again, but everytime I left the room the idea just slipped away.
I'm autistic and probably ADHD as well. Is this something to do with it? Did it make it difficult to do something that I wanted to do? Or was it my complacency? My thinking that he'll be here for years, there' plenty of time, doesn't matter if I forgot to record him, yet.
Whatever the answer, I hate it! I'm so sick of myself for being so useless at getting things done. I'm sick of excuses like being autistic, or distracted with all the stress and strains of life (the last two years have been really hard for all of us, but there was time to do this).
I'm just sick and miserable down to my soul. Right now, that archive of stories would be exactly what I need. It would have really helped.
My maternal uncle lives abroad. For various reasons, he can't get here. He told me I could message him anytime about anything. Last night I told him about this. I wondered if he might offer insight or advice that would take the edge off. Instead, I get a forehead slapping emoji.
Last time I talk to him, I think.
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I'm so tired. And even technology is failing me. I just typed a reply but it hasn't appeared. It's gone. Now I have to do it again and I'm trying not to cry.
I can't remember what I said. Why did what I wrote disappear? I'll have to just start and hope I can remember it.
Last night I spent hours searching for a video. I think it might be the only video where I have more than a few words of my Dad's voice. It was from a museum we visited two years ago, and we stood at the back of a fire engine and he told me all about how the equipment worked. He had that knowledge and more at his fingertips. He was a seafarer and a firefighter, but was also incredibly well read and had an amazing memory. He could tell you how to do almost anything, but he also had so many stories and experiences from over the years, all fascinating and funny.
I found it. My Mum loved to hear it. We have all been struggling to remember the sound of his voice because in his last weeks he lost his voice. We never got to have the conversations we wanted, or he obviously wanted, to have. This has made everything so much harder, on top of the fact that the hospital would not support us in putting him in a hospice. They were insanely optimistic that they could help him, they kept telling us he would recover enough to go home! The consultants would not give us a referral. Many things went wrong. We may go to court, I don't know. That's another story, but it makes it all the more painful.
A few years ago, after listening to another of his stories, I wrote down the highlights so I would remember. Then it occured to me to record him the next time he started telling one. I'd have to do this quietly, just hold the phone casually, because I wasn't sure how he'd react. He was never very demonstrative that way and might feel self conscious talking casually for a recording. I just wanted to create a small archive of his stories and ideas for the future, because unlike him my memory is awful. But the stories just turned up in conversation, and everytime I listened I forgot to press record, and everytime I reminded myself to do it next time, the idea just slipped away as I left the room, and I never remembered for next time. I just walked back into the distraction of the rest of life.
I never thought about it in the context of him dying. I was a fool, because he has been incredibly sick all through his retirement, with things that would individually kill off other people. But he has always been so strong, as well, physically and mentally. He always came through each new medical problem, and I got complacent. I thought he'd always be here, that I had plenty of time.
We've had a very difficult few years, as a family. A lot has been going on. But that's no excuse, there were plenty of times we were together and talking. I'm not writing this as well as I did before. Why did my comment disappear?
So I found that one recording from the museum, and realised what I had missed out on. I could have had an archive of his stories and the sound of his voice, and right now that would be exactly what I need. I really need that. My Mum really needs that. Why didn't I do it? I'm autistic and probably ADHD, but that's no excuse for anything. I'm sick of being told it is. And if that is the reason why I couldn't remember to do it, didn't make it a priority even though I really, really wanted to do it, then no! I hate this. I hate being who and what I am. Over the years it has cost me so much and there is no upside. And maybe that's not the reason, maybe I'm just unreliable, lazy and can't remember things. Whatever, I'm kicking myself for not doing this when I had years to do it, and all it needed was half a second's thought to remember to do it.
My maternal uncle lives abroad and can't come over right now. He said I could message him anytime about anything. I told him about how I'd just realised what I'd missed out on by forgetting to do this. I thought he might have some words of wisdom or comfort that would take the edge off. Instead, I get a forehead slapping emoji. Guess I won't be talking to him, again.
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Why do my comments keep disappearing! I'm trying not to cry. I've just typed so much and it's all gone!
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I'll try again. One more time. The third time. i can't keep doing this. I can't. what's wrong with this website?
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Ok, so, last night I spent hours searching for a video that I made of my Dad from a visit to a museum two years ago. He was describing how to use the equipment at the back of an old fashioned fire engine. He knew all this stuff.
god this is bad. my brain is melting. I can't do this three times
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If you are typing a long comment then it can be useful to use the save draft button at regular intervals 🙂
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My dad was a seafarer and a firefighter and was incredibly well read. He could talk about almost anything, and knew how to do so many things. As he was talking about the old fire engine, I got my phone out and recorded him, but didn't tell him because I didn't know how he'd react. I think he'd have been fine with it, but it might have made him a bit reserved. He wasn't a demonstrative person.
He spent weeks in hospital before he died and he lost his voice. It really upset him and us. We were robbed of the conversations we could have had, we never got to say the things we wanted to say. We never heard his last stories. So when I found this video, my Mum loved it. It really helped us both to hear his voice, again. And then I remembered what I had planned to do, years ago. I had the idea that I would record him whenever he started talking, again. We never sat down specifically to hear a story. They just turned up in conversation. Or when we were visiting somewhere, he'd start talking about how this or that worked. So I would have to quietly take out my phone whenever this happened.
But I never did. Everytime I thought of it, the idea slipped away as soon as I left the room. It was something I wanted to do, to have an archive of his stories and recordings of his voice, but I could never remember to do it! Maybe I got complacent. He was sick for years, with problems that on their own would kill most other people. But he was so strong physically and mentally, and he always came through. Maybe I just thought he'd always be here, that there'd be plenty of time, I'd record him next time.
I'm kicking myself. I've been up half the night upset with it. I just cannot understand why I'm like this. I'm autistic and probably ADHD but no! I'm sick of excuses! I don't want to blame it on anything. I'm sick of being useless and forgetful and I'm sick of paying the price for it. Was I forgetful? The last few years have been very hard for all of us, including him as his health declined, and I've been distracted a lot, but wouldn't that make you think about this kind of idea even more? Wouldn't that make me think I need to do this now, spend more time with him now? Why am I like this? Why do I make myself more miserable?
My maternal uncle lives abroad and can't come over. He told me to message him about anything, anytime. Last night I asked him about this. He knew Dad and I wondered if he might have some words of wisdom or insight that would take the edge off. Instead, I get a forehead slapping emoji.
I'm sure there's things I didn't say this time. Third time and I can't remember everything. I'm tired. Why is stuff not working right?
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It still won't let me comment longer than a few words.
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My dad was a seafarer and a firefighter and was incredibly well read. He could talk about almost anything, and knew how to do so many things. As he was talking about the old fire engine, I got my phone out and recorded him, but didn't tell him because I didn't know how he'd react. I think he'd have been fine with it, but it might have made him a bit reserved. He wasn't a demonstrative person.
He spent weeks in hospital before he died and he lost his voice. It really upset him and us. We were robbed of the conversations we could have had, we never got to say the things we wanted to say. We never heard his last stories. So when I found this video, my Mum loved it. It really helped us both to hear his voice, again. And then I remembered what I had planned to do, years ago. I had the idea that I would record him whenever he started talking, again. We never sat down specifically to hear a story. They just turned up in conversation. Or when we were visiting somewhere, he'd start talking about how this or that worked. So I would have to quietly take out my phone whenever this happened.
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But I never did. Everytime I thought of it, the idea slipped away as soon as I left the room. It was something I wanted to do, to have an archive of his stories and recordings of his voice, but I could never remember to do it! Maybe I got complacent. He was sick for years, with problems that on their own would kill most other people. But he was so strong physically and mentally, and he always came through. Maybe I just thought he'd always be here, that there'd be plenty of time, I'd record him next time.
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I'm kicking myself. I've been up half the night upset with it. I just cannot understand why I'm like this. I'm autistic and probably ADHD but no! I'm sick of excuses! I don't want to blame it on anything. I'm sick of being useless and forgetful and I'm sick of paying the price for it. Was I forgetful? The last few years have been very hard for all of us, including him as his health declined, and I've been distracted a lot, but wouldn't that make you think about this kind of idea even more? Wouldn't that make me think I need to do this now, spend more time with him now? Why am I like this? Why do I make myself more miserable?
My maternal uncle lives abroad and can't come over. He told me to message him about anything, anytime. Last night I asked him about this. He knew Dad and I wondered if he might have some words of wisdom or insight that would take the edge off. Instead, I get a forehead slapping emoji.
I'm sure there's things I didn't say this time. Third time and I can't remember everything. I'm tired. Why is stuff not working right?
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Hi @Commanded2bwell I am so sorry you are suffering so much after loosing your dad.
Sometimes we are so tied up with life that things we would like to do just slip by us.
You are not useless you were there for your dad for his last few weeks and even if he could not speak he would know you were there for him.
You are in the very early days of your grief and everything is very raw. Try to remember the good times you had with him.
We are here anytime you would like to talk to us and you can post as often as you like.
Please take care of yourself.
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