A friend of mine sent me a link to Cariad Lloyd’s podcast, Griefcast, the other week. I would highly recommend it to anyone who is either a part of this weird club (Cariad’s words, not mine!) or is possibly supporting someone who is in the club. I’ve put a link at the end of this article. After having a listen to the first episode, it’s made me really look over my experience of losing both my mum and dad. I carry this around with me, it’s a major part of who I am, but the truth is I don’t really see it like that on a day to day basis. My parents are dead and its my reality. I don’t walk around thinking “oh God, my parents are dead, poor me, this is really hard!”. That would be exhausting! But every now and then something happens to bring that reality home. I remember listening to a Jeremy Vine show a couple of years ago, he was talking about people who had lost parents in their twenties and thirties…I think the idea was that these people weren’t children, but they weren’t middle aged either (when one is supposedly meant to start having their parents die on them). This one women called in and said she’d lost her dad when she was twenty-something, cue sympathetic noises from Jeremy, and then she went on to say that her mum died when she was thirty-something. Well, the silence was deafening. Jeremy didn’t know what to say. The women started crying, saying how she’d had a total breakdown after her mother died, deep, dark depression had ensued. Finally Jeremy said something about how awful it must be to have lost both parents at such a young age, and I’m thinking “I don’t get it, what’s the big deal?” and I remember feeling a bit shocked by my response and to Jeremy’s reaction to this woman’s loss of both parents. He was (I think) genuinely speechless that this person had experienced the loss of both parents already, when he had the luxury of having so much more time with his own parents. This is my reality and I’ve gotten on with the business of living. Fast forward to today and I’m listening to Caraid’s very first podcast and she is very clear in her descriptions of her experiences with her own grief at losing her dad at the age of 15 and how long it has taken her to be able to express this grief. And it helps to hear how her guest has experienced their very recent grief at losing their dad (at 74) too. I think I’m only now coming into a space where I can really express what it feels like to have lost my parents at a young age and what that means to me now at the age of 40. So, after all that preamble, I wanted to talk about my dad first (as he died first, it only seems right that he gets the honours) and what happened to him and us. It’s important for me to remember and I think others could benefit from hearing about the nuggets of real life wisdom in experiencing someone you love dying.

I was 18 3/4 when my dad was diagnosed with Non-Hodgkin Lymphoma, a type of blood cancer. I think it may have taken him awhile to take himself to the doctor to investigate the lumps he found in his groin. Side note: please, if you ever find lumps on your body, that weren’t there before, go to the doctor immediately. In fact, anything that wasn’t there before, go to the doctor immediately. I think it was my mum that made him go in the end. Anyway, he went eventually, he had tests and they came back to say cancer. I can fairly clearly remember being told by my dad (that was brave of him). I’d just come home from work, he was standing in the kitchen – sort of in the doorway. he had on jeans and a blue, long-sleeved T-shirt and a checkered flannel button up shirt over the top. It was late August/early September, it must have been a cooler day. I still have that blue T-shirt of his. When he told me, I burst into tears, “Will you be Okay? What do the doctors say?”. Well, what could he really say to that? What would most parents say? He told me he thought he would be alright, but would be on treatment for awhile. He probably wouldn’t lose his hair, he’d be taking his chemotherapy in tablet form. I guess I thought this meant that he wasn’t in serious danger. If they were giving treatment by tablet, rather than intravenously, it’s not as serious, right? The truth is, I don’t know if that was the case. I knew nothing then and I didn’t know to ask. I was 18 and for me it just wasn’t possible that my dad would die anytime soon. He started the treatment straight away and it seemed to be working, nothing much changed. Dad continued to work. He didn’t lose his hair, although he did go very grey, very quickly. He had regular hospital appointments and I think they may have even stopped his treatment – or – it ran it’s course and he was deemed to not need further treatment. This all took place over the course of a year. I can’t really remember much about it. I know I would have been working at the swimming pool, I was a lifeguard and swimming instructor. I had taken the year after graduating from high school to earn some money to put myself through college. I had a boyfriend. I was just living my life.

About three or four months after he had stopped receiving treatment, possibly at one of his regular check ups, they found it had come back. My memory around this is extremely hazy. I’m sure the fact that it was 20 years ago doesn’t help! He definitely went back onto treatment, but I don’t remember what sort (tablets again or intravenously). I can remember he was still working. He was a bus driver for the big transport company in Toronto, the equivalent of TFL. Then one day, I came home and dad was home too. This was unusual on a weekday. He worked shifts and wasn’t home in the evenings until around 7:30 at night. Something happened to him at work, some altercation with a member of the public. My dad was not afraid to stand up for himself, or others, if he saw some wrong-doing being committed. Or if he felt someone was plain rude, he’d tell them. I can imagine something happening along these lines, but rather than rising above it, as he would normally have done (he’d tell you what he thought, but he wouldn’t resort to blows, he’d walk away long before it had a chance to get to that), he must have lost it. Whatever it was, his work suggested to him that he take sick leave and concentrate on getting better. He was on full pay, he had worked there for nearly 25 years, he didn’t need to worry about his job. So he stopped working. Then something else happened and he ended up in hospital. Again, very very hazy. He got sicker, but I can’t remember the circumstances around this. I can remember visiting him in hospital, it must have been sometime in February or March. It was sunny outside. He was sitting up in bed. He looked tired. My half sister got married at some point during this time he just checked himself out, against doctors wishes, telling them “I WILL be at my daughters wedding”. We all went to the wedding, he was so sick. He looked like the walking dead. During the dinner he literally put his face in his food on the table. He’d passed out. We cleaned him up and took him home shortly after that and he went back to hospital the next day.

I had planned to go to England in April. I was going to be staying with family and my aunt and uncle were going to take me to Italy with them. I wasn’t sure I should leave with dad in hospital. He was insistent that I go, he would be there when I got back, I was only going for a month. So I did go. I spoke to him nearly everyday. I wish I could remember those conversations, but again, blank. I’m pretty sure I spoke to him when he did get released from hospital and was back home. He said he felt better. I got back from my travels in May. I’d had a great time and it was from this trip that I really caught the bug to travel more. College was finished long ago, I managed somehow to get through the year. When dad went into hospital, I think we knew then that he may not have very long to live, I have an “up to two year life expectancy” from somewhere. I remember that last three months or so of college being really hard. There was one teacher that was really compassionate towards me, gave me lots of time with assignments. He made it easier to keep going with it and finish out the year. I can’t remember his name. I can remember his face though. He taught psychology, so no surprise he was empathetic and compassionate then. I got on with working at the outdoor swimming pool for the summer months. I couldn’t have been there very long when one day I got back home from work, it must have been very late in May or early in June and dad was home. I remember him saying he felt tired and was going to lie on the sofa for a little while. I’m not sure how long he was there for, but he never really settled and he got back up again. He said he felt a bit strange. At this point, my first aid skills kicked in. I started paying close attention to him as he was talking to me. I noticed his eyes, his pupils to be exact, one was very small. The other was very large. This is not a good thing. I managed to get him to an armchair and sat down, thank goodness, as within seconds he began to convulse and foam at the mouth. His eyes had rolled into the back of his head, he was ridged and he was choking on his own tongue. All hell broke lose. I shouted for my boyfriend (thankfully, I wasn’t alone) to call 911. My brother had come running downstairs after hearing the commotion, I shouted for him to help me get dad on the floor safely, protect his head. I just dragged him by his feet, and he slid off the chair and onto the floor. We rolled him into the recovery position as best we could, put a blanket over him and I got his head back to clear his airway. All this time I was yelling instructions and updates at my boyfriend to relay to the 911 operator. The ambulance was quick, we lived close to the hospital. One of the attendants was the sister of a friend of mine from junior school, but I didn’t realise this until later. She did say to me, as my dad was lying on the floor (the convulsing had stopped, but he was still unconscious) that I’d done the right things, the only things I could have done, to make sure he was safe and breathing. And again, I go blank. What happened next, I can’t remember. It’s all blurry…like a dream that is fading away from you after you wake up. They obviously got my dad onto a stretcher and into the ambulance. I can’t remember if I went with them in the ambulance, or followed behind. I can’t remember being in the hospital. I can’t remember where my mum was, maybe work. Just…blank. Memory is an odd thing.

I think the next clear thing I can remember is my dad in a hospital bed, a different one to last time. Someone has told us what has happened to him, a doctor most likely, the cancer had spread. It had managed to cross into the spinal fluid and get into his brain. He had several small tumors all over his brain. He’d had several more seizures while at hospital, while they were trying to figure out what was going on. At this point he was stable, they must have been giving him something to block the seizures. Operating wasn’t an option. We were in damage control mode now. It was very very serious. I can’t remember if the doctors gave an estimate of how long they thought dad had to live at this point, but they weren’t giving up, or dad wasn’t. He was put onto a much stronger regime of chemotherapy, this time definitely intravenously. It had to be powerful enough to also cross into the spinal fluid and get into his brain, at least this is what I remember. Dad was 49 years old, he was young and had much to live for. I think it must have been his decision to keep fighting.

The next couple of weeks saw us visiting the hospital every single day, taking turns. I still went to work at the pool. How I did that, I’m not sure. I think it was just for some sense of normalcy…I mean I really couldn’t stay at the hospital all day, every day. Dad was very ill and out of it most of the time. The drugs, the pain meds, the fact that his brain had tumors pressing on all sorts of things made everything confusing for him. If you asked him what his telephone number was, he gave one from 20 years previously. He talked about people he hadn’t seen or spoken to in years, like he had just seen them yesterday. Laying in a bed for days and weeks caused other problems, which I won’t go into detail here, but it made him very uncomfortable. It was distressing and immensely painful to see my once extremely capable, funny, protective, loving dad – confused, in pain and weak. I can remember one night the phone ringing, it was dad from the hospital. He was begging mum to bring him home, he didn’t want to be in hospital anymore. You can imagine how upsetting this would have been, for everyone. Mum felt he was best looked after in the hospital, where he had 24 hour care available. She just didn’t think we could cope. She may have been right. After that, I think mum had them take the phone out of his room (he’d made a few similar phone calls previously) so he couldn’t call us anymore. It breaks my heart. I have to honestly say this is one of my biggest regrets – that we didn’t give him what he wanted at what turned out to be the end of his life. On top of this, his telephone was taken away so he couldn’t call us when he wanted to. I’m sitting here with big, fat tears rolling down my face at the thought of it all. We were still in denial though, all of us. We still thought they’d get him a bit better and then he could come home.

I remember going to visit him one afternoon, I was there by myself. He was confused and fairly out of it the whole time I was there. Fitfully dozing. I kind of lost it and stormed out of his room. I couldn’t really handle it anymore. One of the nurses saw me run and came after me. She asked me how I was doing, horrible was the answer. I practically shouted at her that I didn’t think I could keep seeing dad like this, he wasn’t getting any better, when was he going to get better? “Honey,” she said, “He’s not going to get better.” and there it was. What nobody had dared to tell us, but what I think we all secretly knew. Surprisingly, I didn’t start screaming and shouting, I went very quiet instead and asked, “Does he know?”. Apparently, he did. He was more lucid at night, like in the dead of night. When we were asleep and dreaming, he would be awake, talking to the nurses and the one I was speaking to was his favourite. She sat with him and listened as he went through all of his affairs that he’d put in order, how the mortgage would be paid off automatically upon his death and that he had several life insurance policies that would pay out. That we would be okay financially after he was gone, not lose our home or anything like that. I listened to this nurse say all these things to me, what my dad told her in the middle of the black night, and I then asked, “So why is he still here then? Why hasn’t he died yet? If he knows all this stuff is in place?”. Lets just hit the pause button here for a moment. I want to clarify something. I wasn’t wishing my dad would die, I was wishing for the pain and suffering to end, his mostly, but mine too. The pain of seeing him in the state he was and my helplessness to do anything about it needed to end. Do you know what her response was? “He’s not going because he doesn’t think you’re ready for him to leave. He’s holding on because he’s worried what it will do to you. He needs to know you’ll be okay. You need to tell him it’s okay for him to go, and then he will go.”. We had been standing at the end of the corridor, looking out of the window onto the hospital carpark below. I thought about what she said for a moment, it made sense. “Alright. Will he be able to understand and hear me the way he is now?” “Yes, he will.”. I walked back down the corridor and into my dads room, sat on the hospital bed beside him, took his hand in mine and told him it was okay for him to die. That he could let go if he wanted to. If he was in too much pain to keep fighting to stay alive, that it was okay to stop. We would be okay, we would miss him and love him always, but if it was too much and it was time for him to go then that was alright. Of course, it wasn’t alright. If there was somehow going to be a miraculous recovery, that’s what I would have wanted. I told him these things, despite not knowing if I would be okay.

Not long after that, a couple of days maybe, mum got a phone call saying he was going to die that day/evening. We all went immediately to the hospital. They had moved him to ICU – why, I don’t know. ICU is for people they are trying to save, not people who have a DNR (do not resuscitate) order. I remember mum and I talking about it, whether to resuscitate dad or not. I was firmly against it, mum listened to me, she knew dad wouldn’t want bringing back into this. It was time to let him go. We each went into the room he was in. It was terrible, all bright lights, lots of equipment hooked up, other patients around – why were we in there? It doesn’t make any sense. I still to this day, don’t know what was going on there. If I’d known what I know now, then I would have insisted he was moved back to his hospital room, or the hospice, or better still, home. But I didn’t, so I couldn’t. When I went in to see him, he couldn’t talk, his eyes were sad and imploring, he wanted to communicate but couldn’t. When I was close enough, he reached up to my face and pulled me towards him, sort of hugging me. I was just telling him I loved him and then my first aid skills kicked in once again, I didn’t know what else to do. I took his hand and said “Dad, if you can hear me, squeeze my hand.” and he did, really hard! I was shocked at the amount of strength he had, I thought for a moment they had it all wrong, he wasn’t going to die today. I told him that I loved him, but that not to worry, I would be okay, we would be okay. I asked him to squeeze my hand again, he did, but not as strong as before. I lay my head on his chest, hugging him, telling him I loved him. I asked him to squeeze my hand again. He heard me, he tried to squeeze, but it was weak. Just a small movement of his hand in mine. Then he gasped. The machines started to go a bit wild, beeping and making their announcement of the eminent arrival of death. I asked him to squeeze my hand, still a little, teeny, tiny movement. I felt this urge to scream at the nurses and doctors there to DO SOMETHING. But I didn’t, I told him I loved him again (never too many times). He breathed again, another big gulp of air and the machines started to show a flat line. The vital signs they were monitoring were fading away. The air was slowly released out of dads lungs, his eyes were half closed. I asked him to squeeze my hand, nothing. I asked again, still nothing. I just threw myself on him really, hugging him, crying, telling him I loved him. The noise was unbelievable. Wailing and crying, the high pitched whine of the machines telling everyone that “Hey, look everybody, this guys dead!”. Nurses talking, checking dads pulse, someone writing on a clipboard. Finally, someone switched off the damn machines, there was less wailing coming from us. The nurses asked me to step away from dad. We went to a little waiting room, they cleaned dad up, unhooked everything. When we went back in to see him, his eyes were fully closed now, his arms neatly tucked at his sides. He was cool to touch. I remember being amazed at how quickly he became cold. We stayed with him a little bit, but then it felt like we should go. We were all still in the ICU, it’s not a place to try and be with your dead loved one. I realise that’s a strange sounding sentence! If you’ve experienced the death of a loved one, you’ll likely know what I mean. If you haven’t, well, one day you will. Dad died sometime on the evening of the 23rd June 1999. He was 49 years old. My mum was 42, I was 20 and my brother was 15, our half sister was 26.

After that, gosh, what happened? We went home. I went into full blown planning mode (my natural resting point in times of raw grief, I’ve come to understand). We planned dads funeral, it was a packed house, with people having to stand out in the corridor of the funeral home. We scattered his ashes in a forest near our home, somewhere we went to a lot as a family. I didn’t go back to college that September. I worked at the swimming pool instead and changed diploma’s, starting my Interior Design course the following September at a different college, one that could now be afforded thanks to dad’s insurance policies and the house being paid off. As a family, we did kind of implode after he died. I’m not going to pretend that we managed, because we really, really didn’t. Dad was our family glue and we became unstuck after he died. We eventually found our way back though. Lots of life has happened between then and now. And this 23rd of June marks 20 years since that day. I’ll have lived exactly 20 years with my dad in my life and 20 years without him. I miss him everyday. I think about him, in some way, most days…probably everyday. The grief of losing him hasn’t gone anywhere. While writing this, I have cried and cried and cried (and I may still be crying now!). That’s because I still love him, of course I do, love doesn’t die with the person. It stays right where it is and can even still grow, especially if you nurture it. Which is why I wanted to start this blog really, to nurture my love for those I have lost and to somehow keep them a part of my life now. Actually, here’s the REALLY odd, messed up thing: I wouldn’t be here now, if my dad hadn’t gone and died on me when I was 20 years old. That event is a very clear marker in time where life took another direction for me. And that direction, led to here. Lots more stuff happened to nudge, push, shove, pull, cajole, tempt and harass me to where I am now, good and bad…but it really started there. Dad dying gave me the opportunity to put in place all the things he tried to teach and impart on me, and crucially to see what his love for me could do. It made me grow up faster, yes, but he left behind a good legacy and I survived. It turns out I wasn’t lying when I said I would be okay after he died, I got there and I’m still getting there all at the same time.

Some helpful links:

https://play.acast.com/s/griefcast

https://childbereavementuk.org/

5 thoughts on “When dad died

  1. Thank you for sharing this. I’m in training to be an end of life care doula and every time I read about a person’s illness and death, I gain something that helps me understand the whole process better. Your dad sounds like he was an amazing person. I really enjoyed all your photos too. 20 years is so long and yet so short! It always boggles my mind when I think about the time past in my own losses.

    1. Thanks Lael & thanks for reading. I’m doing this, not just to help me & remember those I’ve lost, but hopefully others can get something out of it too, so I’m pleased it’s helped you! I think it’s amazing if you can help people to have the death they want and support their families throughout as well.
      And time, well, when it comes to grief, time doesn’t have the same linear quality we are so used to in our lives….ooo, I’m getting all metaphysical! πŸ˜‚

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