My Dad died and I'm despairing

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  • Catherine21
    Catherine21 Online Community Member Posts: 9,796 Championing

    For me ADHD does get in the way of my life i have so many thoughts a million flooding my mind overwelming me constantly it never stops and when someone we love passes it stops and you start thinking of them and with any grief comes the thought what of i did this and i could of done more but in reality we are dealing with life presents us i have a very complect relationship with my dad as you stated your sure yoir dad was adhd autustic and they can have thier ways that make connecting hard at times i think its amazing that you did start building a realtionship and totally feel your sorrow but be proud that you was with him at the end of his life journey however painful that was for you made sure he knew how much you loved him that takes strenght you say your dad is incredibly strong he would have passed that on to you your no way useless we feel so so so deeply and grief is so painful try not to use your grief to hurt yourself more take day by day as for your uncle we love people to show us warmth and care but hes probley dealing with it his own way i hope you manage to eat and sleep much love

  • Rachel_Scope
    Rachel_Scope Posts: 3,382 Scope Online Community Coordinator

    Hi @Commanded2bwell I'm so sorry for your loss. I can't imagine how difficult it is for you. I've sent you a private message, but just in case you don't see it, your posts were caught by our filter which can happen when they are particularly long. I released your comments as soon as I could this morning, but I'm so sorry this happened when you were struggling.

  • nikih17
    nikih17 Online Community Member Posts: 26 Listener

    I’m so sorry for your loss.
    Just know he went surrounded by love and that’s all anyone can ask for.
    You supported him and advocated for him, so hold on to that.
    Please be gentle with yourself. ❤️

  • Wibbles
    Wibbles Online Community Member Posts: 3,444 Championing

    @Commanded2bwell Hi a little advice - when typing a long paragraph - type it into a doc or txt file and save it regularly - then cut and paste it in to the resource that you are using - this saves a lot of heartache from lost txt…..

  • Commanded2bwell
    Commanded2bwell Online Community Member Posts: 112 Contributor

    I slept properly part of last night. I think it was exhaustion. There's been a lot going on, including before he died, that kept me up late. And afterwards, I couldn't rest because in those moments before sleep it was when I've got nothing to distract me from the memory, and when I've felt so guilty that every night, for all the weeks he was stuck on that noisy, brightly lit ward in that uncomfortable bed, I was coming home to my own bed, in comfort and privacy. I'm fairly sure he was also autistic, just better at masking it, and I can't imagine myself surviving in that environment for a few days, never mind weeks! It must have been torture.

    But I finally slept last night and found relief from the reality. I had some dreams and while he wasn't in them, they were in a world in which he hadn't died... if you know what I mean. Waking up was painful, again. My first thought was why couldn't this be the dream... a nightmare... and why can't the dream be reality?

    Now the sadness is pressing down like a heavy weight. The world is changing and moving on, leaving him further behind, and I have more and more things I want to tell him, every day, and questions I want to ask him. He knew so much, and sometimes when the news was scary, as it often is, he knew how to be a calming voice of reason. I never realised how much I valued that.

    I'm very worried about my Mum and sister. Mum is being too strong. My sister had a very close relationship with Dad and is broken. I have not done a good job helping them because I was blinded by my own shock and grief, and because I'm not good at that kind of thing, anyway. Dad always knew what they needed, and had the capacity to provide it just by being there, by being that calm voice, or giving my sister a bear hug. I'm too much of a drama queen to fill that role.

    He was failed by the medics. They mismanaged his case, lies to us about the severity of his condition and refused to acknowledge he was dying in time to get him into a hospice. This made his final weeks an unnecessary torture, robbed him and us of the chance to say goodbye, and left us shocked and traumatised. I think this is making the grief even worse.

  • Holly_Scope
    Holly_Scope Posts: 5,253 Scope Online Community Coordinator

    Morning @Commanded2bwell I’m glad you’ve had a better sleep. I can't begin to imagine how difficult things are right now.

    It sounds like you’re a really close family and you care about your mum and sister a lot. You might not be one for bear hugs etc. but I bet you’ve supported them in ways you don’t even realise. Take for example finding the video and watching that with your Mum which brought back some fond memories for her.

    I hope you’re doing ok this morning.

  • Commanded2bwell
    Commanded2bwell Online Community Member Posts: 112 Contributor

    Thanks everyone for the replies. I think I've worn out the people around me. I've now got a GP appointment next week that might lead to therapy. Seems that we might all have PTSD from the trauma of Dad's death. Yes, it was that bad and the hospital made mistakes. The coroner is now involved.

    I have another question I can't now ask anyone else. Dad and I had many common interests, and he had many advanced skills because of his background and career. Take one example, tying knots. I never had any luck learning it from books and Dad always showed me whenever we were doing something that needed it... but most of it didn't stick.

    I had the thought that I'd make a knot tying board and we'd sit down and he'd teach me properly, rather than just occassionally showing me whenever a knot tying job turned up.

    But I never did. That distance we had between us, which I've mentioned, must have had something to do with it, perhaps made me reluctant to initiate the idea. But recently he helped me fix the car, sat on a chair on the driveway and told me how to do it while I had the car up on jacks, and that was fine. I actually enjoyed doing it!

    So if I enjoyed that, what stopped me finding other reasons to do things with him? I've also mentioned about recording his stories, and how I just completely forgot to do it ten minutes after having the idea, how it slipped away as I left the room and got distracted.

    So, I guess what I'm asking is whether the fact I thought about doing things but never got around to doing them, either felt reluctant or just forgot to make time, is because of the unnecessary distance that still existed between us, or because my weird AuDHD brain can't hold on to things for five minutes if I'm not looking at them.

    You might think this answer can't help, but if I were to try knot tying again now, I'd feel bad that I missed the chance to learn it properly from him, and wouldn't want to do it. But there are jobs in my future that will need it, jobs I'll have to do that he would have done, you see. And I just need to know why I missed this, and similar, opportunities so that maybe I can find a way to do these jobs without breaking down emotionally... which is what I'm doing right now.

  • Kimi87
    Kimi87 Online Community Member Posts: 8,721 Championing
    edited April 2

    When we lose someone, especially a parent there are always thoughts of "why didn't I" and "what if I".

    It's human nature even without an ADHD brain to always think there will be another opportunity to do those things.

    I lost my Mum 5 weeks ago after a catalogue of failures on the Hospitals part and she also had to have coroner involvement.

    I can relate to so much of what you've written 🫂

    I had for my own physical & mental health needed to pull back from Mum in the last months of her life. I wouldn't be human if I wasn't now beating myself up about that occasionally, but I also realise that I absolutely needed to do that at the time, and that was okay.

    You are very recently bereaved and need to be kind on yourself. Take one day at a time, and when that is too difficult take things one hour at a time.

  • Commanded2bwell
    Commanded2bwell Online Community Member Posts: 112 Contributor

    I'm so sorry Kimi. I wouldn't wish this on anyone. The hardest times right now are first thing in the morning, when the reality comes back, and in the evening when I run out of things to be busy over. Or any time I see something we would have talked about, like the NASA launch or finding that ship wreck in Denmark, or seeing our local Nuthatch or Woodpecker in the garden. We did talk, but it had to be under certain circumstances that I imposed, and that limited my ability to approach him.

    I know why I pulled back, kept some distance, but I also think I kept it up too long. Dad was going through his own problems, but was coming out of it. My sister was close to him, again, after also distancing herself. She called it a "reset". Looking back, it was my turn to reset next… but I ran out of time.

    Five weeks is almost exactly the same time Dad was trapped in there... yes, trapped, because that's how it felt. Was that how it was for you? I began to feel so guilty that every night I could go home to a comfortable, private bed while he was stuck in there. We're discovering new things all the time, like the fact that he didn't have a "chest infection" but instead it was full blown pneumonia! They treated us like children and were not honest. I want answers... even though they won't bring him back, Dad would want me to try to stop it happening again.

  • Kimi87
    Kimi87 Online Community Member Posts: 8,721 Championing
    edited April 2

    Mum had been in for another 4 weeks before she died, I say another because she was in Hospital more than home during 2025.

    Yes I certainly felt guilty every time I got to leave and she couldn't.

    Likewise certain information only came to light after her death, information had I known would have changed how I dealt with the Hospital staff and probably Mum's care & quality of life especially after she lost capacity.

    I still don't have all the answers I need to guide the further action I intend to take, but right now although that's very important, it is bottom of the list after working through my grief, administering her estate, planning her wake, clearing her home and continuing to battle with two banks to release her money.

    I'm discovering after the death certificate was delayed they are in no hurry to settle her accounts!

    Basically anything that isn't time sensitive right now, has to wait.

    I took the maximum time allowed by her landlord to give myself breathing room, even though initially I didn't think I'd need that much time/wanted to rush through & complete ASAP.

    I'm very glad I took that time because doing it any other way wouldn't have been right for me.

  • Catherine21
    Catherine21 Online Community Member Posts: 9,796 Championing

    Oh kimi im so sprry to hear this and your still taking time to help people with benefit questions im sending much love xxx

  • Commanded2bwell
    Commanded2bwell Online Community Member Posts: 112 Contributor

    Since reading Kimi's comment on here, I have also spoken to another person who had a very similar story, in which an older relative went into hospital for four to five weeks and never came out. This happened a year ago, and he is still raging about it. He describes how he was effectively lied to by the staff because they didn't properly explain what had happened. I was lied to, as well, when they kept saying that Dad had a "slight chest infection" when, in reality, he had pneumonia!

    The parrallels between my story, Kimi's and this other story are frightening. And then it got worse, because I went to the GP and while discussing the situation and what kind of help might be available, the GP very candidly observed that there was almost nothing I could have done to change this outcome: I had been talking about wanting to go back in time and pay closer attention to certain details, to take more forceful action, to have demanded more accurate feedback and involvement from the senior doctors… but the GP just looked at me and said "The system wouldn't have let you do any of that. Nothing would have changed. It's designed that way."

    I don't know how to process this. She said it with sympathy. She was trying to help. She was also choosing to be very honest (I think she's past the point in her career where they can do anything to her, and she basically sees the patients she wants for as long as she wants). I don't imagine most GP's would be this honest.

    Is this happening everywhere? Three different people, me, Kimi and this other fella, all from different parts of the country, all with almost identical stories about the outcome for their relatives and the way they were treated by the doctors.

    What the hell is happening and what are we supposed to do about it?

  • PracticeWotUPreach
    PracticeWotUPreach Online Community Member Posts: 109 Empowering

    I’m so sorry you’re going through this. Something very similar happened to my dad too. He was in hospital for 4–5 weeks, and we were told it was bronchitis. He seemed to be getting better, and then almost overnight things took a turn for the worse. His foot became infected — we still don’t know how — and it led to an amputation of his foot and lower leg. He passed away two days later.

    This was a few years ago, and we’re still trying to get answers, often feeling like we’re being passed from pillar to post.

    I just wanted to say you’re not alone in how you’re feeling. Take things one day at a time, and be kind to yourself. It does become a little easier to carry with time, even though the pain doesn’t fully go away. For me, it’s always there in the background, but I’ve learned to live alongside it.

    Sending you @Commanded2bwell & @Kimi87 strength and thinking of you.

  • Santosha12
    Santosha12 Posts: 4,147 Connected

    Hello @Commanded2bwell, I did not know if I could reply to your post; I am firstly, very, deeply sorry for the loss of your dad, for your shock and trauma and feelings of guilt and deep sadness. And for the despair you have felt. What happened to your dad and the impact on your family has struck a deep chord in my heart. I share my story in case even any tiny aspect of it can lead you to getting answers you so very much deserve. 'Dad would want me to try to stop it happening again', I can so very much relate to that.

    For me, getting answers was at the very heart of being able to process any of what happened to my dad. And to only then, be able to grieve. It lay like a strand running through my grief that needed completely unravelling to make sense of any of it. And for the sheer injustice of my dad's loss. I never fully got those answers but my grief was perhaps so long-lasting because of that. I lost my dad on Friday 24th March 2000, I think one day less off 26 years before you lost your dad.

    I will put a TRIGGER WARNING despite the reason of your thread.

    My situation was different as dad wasn't in hospital but at home. I should have been there in Manchester but was living in London and had just changed my holiday plans and returned from the US five days before he died. I rang him at 1300hrs that day, chatted and I was going home and would see him the following week. I can recall exactly that conversation, he seemed ok. The pharmacist rang my mum at c 1400hrs and instructed her not to give dad any more (prescribed) potassium supplements as he should have been having regular blood tests for the last two weeks, he'd not been sent for any. He had a cardiac arrest at 1500 and died at 1715hrs. He had hyperkalaemia (high potassium) which caused the arrest. It was a Locum GP and a Locum Pharmacist who, between them, well, caused my dad to die. The return on that Friday of his regular Pharmacist spotted the error.

    I was not a nurse then but found, through a lot of probing and researching in the weeks and months after, that because he was also on ACE Inhibitors and potassium-sparing diuretics, which were both contraindicated with potassium supplements, he needed daily or every two days, bloods checks. I reported it to the MHRA (Medicines and Health Products Regulatory Agency) but my, very 'schoolgirl error' was to not get dad's records from the GP surgery or the local Primary Healthcare Trust. I never got those, I don't know why, I really don't. Maybe the grief I don't know.

    I accessed my dad's medical (hospital) records via the 'Consent to Health Records Act 1990' from the hospital (they tried for two hours to save him and really tried so hard to save him, very evident from his hospital notes so it wasn't them at fault at all). My mum didn't then want to pursue it further so I had to respect that. So I sort of got my answers, to an extent, but not fully and certainly no accountability from the GP/Pharmacist error. The GP even put the wrong cause of death on dad's death certificate. Talk about 'covering your own back'. My sister who was not close to dad said there's no point looking for someone to blame. Wasn't about 'blame' necessarily, but there was every point - to hold to account as dad's life was important, he was important and very much, deeply loved and missed, even 26 years later. But also importantly, my dad would have wanted me to try to not let it happen again. I didn't get the chance to really do that, nor to say goodbye to the most special, loved person in my world, my dad.

    I hope that you are able to get the answers you need. I am truly touched by your experience and am so saddened at your dad's experiences in his last weeks. I am so glad you were there for him though and that he knew and felt your love. Please, look after yourself. These are hard days and hours to get through.

    @Kimi87 I am so very sorry for the loss of your mum too - your comment 'Take it one day at a time and when that is too difficult, one hour at a time' - that exactly is what I had to do. @PracticeWotUPreach I am so sorry too for the loss of your dad 'For me it's always there in the background but I've learned to live alongside it'. I do too, 26 years on.

    Very much love to each of you xx

  • SheffieldMan1976
    SheffieldMan1976 Posts: 1,304 Connected

    So sorry for the loss of your Dad @Commanded2bwell 😓

    I have worries about my own Dad, he's still alive but he's in his late 70s and has Alzheimer's/Dementia, which runs in the Family, Auntie Irene now has it (Dad's twin sister), it'll be 10 years in September since Nan Rhodes died of it (Mum's mother) and a couple of months ago my Uncle's partner died (she was 90 odd)