Next of Kin: Casey Beros on Caring for Her Dad While Raising a Young Family

Hi.

Thank you so much for having me. I'm delighted to be here.

Tell me.

Oh, thank you. That means a lot to me.

Thank you. It doesn't have to be dreary and awful and this conversation won't be a problem.

My dad was one of the greatest people and he was flawed and complicated and could be difficult just like the rest of us. Very multidimensional person, a human being. And he was, you know, one of my favorite people on the planet. He was born Dennis, but was later known as Jack. Changed his name, never really identified, never.

No. And in fairness he kind of wasn't really a Dennis as soon as he told me that he had changed his name to Jack. And he played with that for a little while before he brought it to his family in some semi professional spaces and in some trusted. He used to do a lot of kind of mankind project, personal development work with men. And so for a couple of years he had been known as Jack in those circles because it was this very sort of safe place for him. And when he brought it to me.

Like 35.

Okay, no, no, no, I was an adult and I said to him, I love it, it really suits you. And look, I've got a pretty liberal relationship with those sorts of things. If you want to be Jack, be Jack, like whatever. And so I was thrilled for him and he really kind of stepped into and it really embodied that. And some people who have known him for a long time still refer to him as Dan or Dennis. And I love that that's their relationship with him. But you know, he really felt like Jack. You know, he would be the first to admit that he treated his body like a playground. He had some pretty significant addiction issues when he was younger, particularly in his twenties. And whilst he was one of probably the most intelligent person I have ever met, so articulate, so intelligent, so passionate, so clever, he was never really able to put those qualities to best use. So he was never kind of really able to stick at anything, be it study or employment. And I've got to theory about why that is. And I think it's probably a bit of a mix of poor self worth, low self esteem and some unresolved childhood trauma, as well as some pretty heavy handed self medication. And you know, even if it was just sort of nicotine and red wine and the affection of women and in his latter years, you know, nothing Too sort of heavy. I think that those things kind of hindered him from. I'm going to sound like my mother here, but like reaching his full potential.

Yes, very much so. I mean, my parents split when I was one, so I don't ever remember them being together. So I've never known anything other than them being apart. But dad had five children to four different women. There's one 10 years older than me, then me, then one 15 years younger than me.

Yes, yes. Then 20 years younger than me and then 21 years younger than me. So he was, shall we say, a free spirit. None of us were planned, but, you know, I think he showed up and was the very best dad that he could be for all of us, to varying degrees of quote, unquote, success. Really close. Really close. Really close. And, you know, from when I was very little, I split my time between my mum's house and my dad's house. And so, you know, I spent a lot of my time with him from when I was very, very little. And I suppose the upshot of him not being, you know, a career person was that he had a lot of time.

Yeah, a lot of time to invest in me. And as a result, you know, when I got to school, I was quite far ahead of the curve because he had invested quite a lot of time in me. And, yeah, we just got each other on a level that I don't know that I'll ever find with anybody else. The conversations that we had were really. They're really unique, they're really different. There's nobody better that I've come across in my lifetime who is better at unpacking something and assessing all of the parts. And I'm speaking metaphorically, you know, talking about an idea, for example, and then helping you pack it all away again in a way that makes more sense. And I'll be forever sad that I don't have that anymore. But, yeah, he was. He was a ripper, an amazing dad.

He was. Oh, that's a terrible, terrible connection. He was a wicked dad. Yeah, a really, really good dad.

Yeah. So it was a beautiful reminder of how life can be going really well, and you can still be picked up and shaken by your ankles by this thing that we call life. I just released my first book. I was sort of riding high on a bit of a wave of positive media endorsements and influencers and celebrities posting about my book. And I was so excited. It was my first book, and I'd worked so hard on it, and it was so nice to have it out in the world. And my husband had just graduated from his master's degree, so we had traveled.

Yeah. And, you know, my husband is a teacher, and I'm sort of in media, and so there are a lot more highs and lows in my career than there is in his. His is really steady. And so when he had graduated from Charles Sturt University, which is down in Wagga Wagga, he said, we're not going to go down. I'm not gonna drive down. And I was like, we are going. I'm gonna force you into a gown and. And a cap. We're all going, the whole family, and.

Yes, exactly. And I've got that fabulous family photograph. And when I look at it, it's like a window into the calm before the storm.

Yeah. Because it was hours later that I got the call from dad. And we are beaming in this photograph. Got two kids, got my husband in. In the gown, in the cat. I've watched him walk across the stage like it was a really magical day. And for both of us, you know, for one parent of small children to do a master's, that's like two, three years. Every weekend they're gone. You're solo parenting. So it felt like a milestone that we had reached together. And my dad had actually text me the night before, saying, let me know if you're around for a quick chat soon. Not a we need to talk or can we talk?

No. In the text. No. And admittedly, I am, like, if I get a message like that, I am speed dialing the source. I am not good at just waiting to see what they want to talk about. But I suppose I think we were out for dinner when I received the message, and I sort of wanting to let my husband have his moment in the sun. I said, of course. Is everything okay? And can I call you tomorrow? And when I looked back at the message later in the coming days. Once I had the news on board, I realized he didn't actually answer me as to whether everything was okay.

But he was sort of tactful enough that it didn't raise any alarm bells for me. And I thought, I think everything's okay. I'll just focus on this and then I'll call him as soon as the graduation is over.

He said, sweetheart, I have some bad news. I said, about what? And he said, about my health. And I said, what's going on? And he said, I have mesothelioma. And for people who don't know what that is, it's cancer from exposure to asbestos. And I just remember, I remember the room that I was standing in and then sitting in and then slumping on the floor in as he delivered that news to me. And I just remember the feeling of the blood like trickling from the top of my head down to my toes. And being the millennial that I am, I quickly put him on speakerphone and googled mesothelioma. Prognosis? Now, I wouldn't recommend that anybody else does that immediately, but after, at that point, 15 years as a health journalist, I knew very quickly which were the reputable sources and which I should ignore. So I just wanted to get a sense of what we were talking about so that I could kind of snap into action and get this icky feeling out of my body. And I just remember my eyes jumping from link to link and it was like 6 months, 12 months, fatal, incurable. Like I knew it was really bad news, the worst of the worst kind of news. And you know, he, on the other hand, was sounding pretty bright. He said that he felt quite blessed for the wake up call. I think he was already looking for the silver lining. And I, on the other hand, cried all night knowing that sooner rather than later I would be. I was going to lose my dad.

No.

No, because it's a very common thing.

No. And I have to be a little bit careful here, but he had been to asbestos mine on school camp and.

Never done any diy, never set foot on a building site. You know, as I said, that was not kind of part of his background. And in Western Australia, because we have such a high diagnosis rate of mesothelioma, it triggers an investigation into the case and potentially some funding for that person, which is in by no means equal to that person's life or even to their suffering. But it was able to offer Dad a little bit of comfort in his final days and I guess allow him some freedom to do some of the things that he wanted to do to take all of his kids up to the Ningaloo Reef.

Yeah. And one of the things that dad was able to deliver in his lifetime that wasn't a career per se, but delivered big impact for the community was that he was the head of the Save Ningaloo campaign. So for people who aren't familiar, in the north west of Wa, we have this beautiful big stretch of reef called the Ningaloo Reef. And it's kind of like the Great Barrier Reef, but it's never been.

Yeah, yeah, but. And it's better because it hasn't been overdeveloped within an inch of it.

Yeah, it's beautiful. You know, that's a huge impact that he was able to have. And it didn't deliver for him career stability or income per se, but it delivered this huge gift to the Western Australian community legacy. Yeah, it's like. It's like big impact stuff. So that money was able to fly all five of us kids and him up to Exmouth. And we went and stood at Maud's Landing and looked at this. We were the only people on the beach and this white sand and blue water. And we could see what he was able to prevent from happening, which was.

It was pretty early. So he was diagnosed in June 2021. And in all honesty, so we were given six to 12 months. He was given six to 12 months and we ended up getting two and a half years, a lot longer than what we were promised. And the first year of that was pretty good. Outside of, you know, him having some treatment and not reacting very well to that treatment, that really knocked him around. But before that happened, and then once he'd recovered from that, we had some real pockets of time where we were able to do things like that and.

Yes.

It's so interesting. I've been asked this a couple of times and I don't remember ever going, I'm going to become the primary caregiver. I don't know that I, I didn't use that vernacular. I don't remember it being a conscious choice.

Yes.

Yes. And I think you go into those situations almost subconsciously understanding what your family setup is. So, for example, my older sister is 10 years older than me, doesn't live in Australia. So the reality is, is that she's not coming home. And then the younger siblings are much younger than me and as they should be, are focused on their lives. And so it wasn't fair to ask them to step up and become his primary carer. He wasn't in a marriage or a long term relationship. He was in a relationship, but it was kind of on and off. And he's very lucky. Both of his parents are still alive, but they're in their 90s so it wasn't a duty. It also wasn't a really active choice. It felt just like a compulsion. Like he got the news, I'm stepping in for whatever I'm needed for and whatever he'll have me for and the rest will work itself out. And it's really only quite far into the journey that I was like, oh, I'm the primary carer here, Here I am, here I am. And I was already so in at that point.

It is.

Gosh, this is a lot, I would say. I don't remember it becoming really heavy lifting in the beginning. It felt like I was around by choice, just by wanting to be around. Take him to all of his apartments, appointments. But he was fine if I was to leave him for even a day or a day and a night. And then probably it was sort of in the last year that things started to escalate and we ended up, you know, with a 24 hour schedule and somebody there all the time because it was just too dangerous to leave him in case something went wrong. And I think also, you know, mesothelioma you can have in a few different places, but the most common place is in the pleura. So the lining of the lungs and it's called mesothelioma because the, it occurs in the mesothelium. So the lining of Catholic. Obviously a doctor, I wish one day.

I do, but I'm not. But a non clinician, I've just been a health journalist.

One day medicine is on the cards for me. I'm sure of it. One day. So it occurs in the mesothelium. So the lining of the organs. So for him that was his lungs. And so if you imagine somebody's lungs with a fishnet stocking wrapped around it, that's kind of like what the mesothelium is like. And so if you imagine little tumors growing through, through the pieces of fishnet stocking that get bigger and bigger, what tends to happen is that the lung capacity is decreased and decreased. So it's a very cruel disease. Essentially somebody's lung capacity is limited, limited, limited, limited, limited until there's very little left. And so for dad that meant breathlessness and panic. Anybody listening to this is probably starting to feel a bit panicked just hearing me describe it.

Yes. And people who have asthma would probably understand if you've ever been dumped by a wave at the beach and not being able, winded, not being able to come up and get your breath back, you know, you can only imagine how awful that must be, knowing that it's going to get progressively Worse. But outside of when he tried to have some treatment and that really didn't work for him, that made him very ill and made him really not feel like himself. He had chemotherapy, immunotherapy, and some radiation on some tumors near his rib cage, and none of it worked for him. So he stopped that very, very quickly. But outside of that, the first, probably year and a half, he was pretty good. It was. So it was probably in the last year, when we had about a year to go, I was already at that point saying to people, can you give me a sense of how long he's got? Because none of the healthcare professionals that we were talking to were saying any of the D words.

They didn't say death, dying, dead, none of it. And so I would say quietly, dad wasn't asking. It's not my place to ask how long he's got in front of him, but I would grab them in the corridor and say, I have two small children and four siblings and aging grandparents, his parents. I need to prepare these people. I need a sense to come of.

And nobody could answer me, which I found really surprising. And I could ask two doctors on the same day, and one would say two months and the other would say two weeks. And I was like, how do we not have a better sense of this? Like, isn't it just a process? Now, on the other side of it, I understand better because people can rally and they can come back. And so we. Dad really was on his last months and last week for a year, and every time I would think, how much sicker can he get?

And the answer was much, much sicker than this. You know, it shocked me even, you.

Yes.

Yes.

Yes.

It is. And I have to say, the person who saved my life in this situation was our. Doula we had a doula, a death doula. We brought her in to help with sort of the administration side of things so that it was less of a burden and also to kind of work with dad spiritually on like, what could a good death look like? Dad really wasn't willing to go there with her on any of that. He just couldn't go there. I think probably out of fear, just wasn't willing. So she turned her attention to me, making sure that I was capable of surviving with two small children and caring for dad. And I just. I can't sing her praises highly enough. She was an absolute godsend to me. And people listening might be familiar with the term doula from birth. You know, it's essentially a support person and advocates non clinical, non clinical. Just there to provide support and guidance and advice. That said, our doula had been a palliative care nurse for 25 years. So she had the clinical experience and was able to help me navigate. So if I was confused about medications or I wasn't sure whether something was serious enough for us, have to go to the emergency department or you've got.

Totally. And I think I thought that there would be some magical administration, death fairy that would flutter down from the sky.

What would that look like? I think I was just like, somebody must be in charge. There must be somebody who's going to tell me the exact process. They're going to connect all the services. Like we'll be guided through this because he's going through the worst time of his life. That's the point.

Yes.

That's right.

Exactly.

I found that the fairy was me.

Which sucked to learn. I was like, I don't have these skills. I don't know what I'm doing. I don't know the process. I don't know anything about this, never been through this before. And so the doula was the closest thing I could find to a fairy tale. And look, it's a powerful lesson to learn is that in health care and death care and aged care, no one is coming to sort it out for you. You are in charge, you are in the driver's seat. And that's why the services that Violet provides, for example, are so valuable, because it helps guide.

Oh yeah.

Yes.

Yes.

Yes, that's right. We all need a fairy. If you were going through anything else in your life, starting a new business, buying a house, any of those big.

Chapters, you would have all of this support, all of this knowledge, all of this education, heaps of services available to help guide you. And then you get to the other end of life and it feels like you are completely on your own. And I was walking around the hospital wards and, and I was looking at all of these other presumably next of kin bumbling around the same halls as I was probably calling the same services, asking the same questions. You'll be hold for 46 minutes. It's like, this is wild to me that we don't do a better job of talking about this, that nobody seems to be really helping guide us through it. And you're right, there's some really well intentioned services out there who do really brilliant work. And when you're in crisis, it feels so hard to engage with them. You're right. None of it feels human.

Yes.

Will say that like a good hospital, so. Or hospice social worker can be worth their weight in gold on that front. They really, really can. They are masterful connectors to services. And when you're in it and you're so overwhelmed with everything that's coming at you, I have no doubt that I had really great conversations with hospital social workers, for example, and I didn't action any of the things that they told me to do because I was so gobsmacked at the situation that I was in.

Yes, many, many. I remember my dad lived in an apartment and it had no lift. And he was on the top floor just of three floors.

Three flights of stairs.

A respiratory degenerative lung condition. Totally. And so I was in a position whereby. And he was renting, and I was in a position whereby I was trying to be prospective about what the decline might look like.

Forecasting. Yes, yes. The stairs started to get harder. And you don't know whether or not with any condition, but particularly with mesothelioma, you know, it's not sort of a slow and steady decline. It can be, but it can also look like this, and then like this, have a really.

Exactly. And I. And I was thinking to myself, if things go bad quickly and he can't get up the stairs to his apartment, no matter how many jokes we can crack about hauling him up on a surfboard and what have you, the reality is, is if I can't get him up to his apartment, I can't get him up to his apartment. Luckily, my house is single level, so I was putting in place all these sorts of contingencies. And I had to have a conversation with him and say, dad, like, I think we're gonna have to move you to a place where we at least have a lift. I had offered for him to move in with me. My. I have two small children. They're very loud. He understandably doesn't want to be around them all the time. And Whilst I would have done it and we all would have survived, there was probably a part of me that was worried about what they would see in having a sick person.

Yes.

My memory is so bad.

Maybe for the last year. Yeah. And it got progressively, you know, in the beginning it was only occasional. In the mornings in particular, he was quite bad. And then maybe later in the evening and then it started coming out with us and then it was like, oh no, we've forgotten it. And it was a big deal. And then it was all the time. So that was probably a slow and kind of steady decline to him needing it more and more. I remember at that moment when I had said to him, we're going to have to move you. We're going to need to find another apartment. I remember him saying to me, well, maybe I should just go into hospice now. Like, maybe this is too much for you to find another apartment.

Not at that moment.

Yeah.

Yes. And you as the carer, as the daughter, as the person who cares about them, you're left in this awful position whereby you're saying, I can see that you're deteriorating and I'm worried about you. And at the end of the day, they're in charge. It's their body, it's their life, it's their death. You can sing till you're blue in the face about what you think they should do or what would make your life easier in terms of caring for them. But if they're hell bent on staying in the apartment with the three sets of stairs, so be it. And so we did secure another apartment. It was just around the corner, which was great. And had a lift. First floor. Wonderful. We're really happy with that. And then as it neared moving day, I realized that he was incapable of packing anything, even overseeing packing anything. So my husband and I packed up the entire apartment.

It was both. Yeah.

And. And I remember rocking up on moving day and he had assured me that the day prior that he would have it all done by the time we were there. And I'd been doing it for two weeks, you know, a few boxes every day, like we'll get there and there was a bit left to do and I said, if you haven't got through it, don't worry, we'll finish it off on the morning. And I remember coming and nothing was done. Not only was he not capable of packing it up, he wasn't even capable of being part of the move. And I'm not for a second would I have been expecting him to be lugging boxes up and down. But he wasn't even well enough or capable emotionally, physically to sit there and direct people say this goes there, that goes there, pick this up. He just had to. I can't remember what he did. I think he stayed in the bedroom and we'd moved everything out or he went to my house or something. I can't remember.

Yes, I did.

Has to be done. And I remember it was early on a Saturday morning, I want to say, and my husband and I and my children were supposed to be going away that afternoon and I remember we were supposed to leave at 3:00'. Clock. That's what we'd agreed that we were going to go over to dad's, move all of his stuff. I think a couple of people came and helped us for an hour or two but really it was my husband and I all day. We got there at like 8am and I remember as the day worn on and it just felt like we hadn't even put a dent in how much we had to do.

And I remember it shifting got to three and we still had so much to do and because we were going away we had to get everything out. And then it was four and then it was five and then it was six and then it was seven and we were still going. I just remember feeling, A, so grateful for my husband, so grateful, and B, feeling really guilty that this was this holiday that we were supposed to be going on. My children were so excited. And then I think we ended up leaving at 7pm I think we made the call.

We got in the car and we drove and we were like, the kids will fall asleep in the car. At least then we get to wake up down there. Because I suppose we're only going for a few days or. And we didn't want the trip to be cut short. And I remember for weeks after that dad getting grumpy with me because he couldn't find certain things, even though I tried to meticulously label every box. Usually when he asked me, I knew the answer to what box it was in. But you know what moving house is like. You often can't find things for ages. And so he would be asking me and he would get really cranky because he couldn't find these scissors or whatever it might have been. And I remember him being angry. Kind of made me angry. It felt really thankless. And that's probably a bit silly, but in the moment I was like, I packed up your whole apartment and moved you and would do it again in a heartbeat, of course, because it's what you need and I'm so happy that you're here, but just like, give me some grace.

Yes, I did, I did. I remember being at Dad's house and dad had this red bucket that lived beside his bed and it was just like a standard run of the mill. Bunnings, lip handle, bucket.

You can see it in your head. Ours was black. Do you have a white handled one? Perhaps. Exciting.

So he had this bucket. And so what would happen though is the fluid would kind of build up overnight because dad was lying horizontally and when he would wake up he would feel kind of full of fluid and it would make him breathless and panicky. So he would go through this sort of 40 minute process of clearing that fluid and a lot of that fluid would need to be spat into a tissue and put beside his bed. And because of the volume of scrunch tissues, the bucket would fill up quite quickly. And so I would empty it every day because I didn't like it sitting next to dad. It didn't feel very hygienic, but it also kind of felt like a reminder to him of how sick he was. And I'll never forget being at his apartment, the new apartment, and I took it downstairs to empty it into one of those big bins downstairs and I tipped it upside down and went to tip them out and there was one tissue left. And so I tap, tap, tapped the rim of the bucket in the hope that it would dislodge and it didn't. So I tapped it a bit harder and it did dislodge this time. But instead of going into the bin, it kind of hit the rim of the bin and then me and then the floor. And it was one of those like, oh moments, like, and it's over a stupid tissue. So I reached down, picked up the tissue, threw it into the bin with more force than was probably necessary for a tissue. And then I turned to go back upstairs and I caught the bucket between my body and the big garbage bin and it kind of knocked me off course and the bucket just sort of fell to the ground and tumbled and then rolled into the middle of the driveway. And look, I've got fairly poor spatial awareness on my best days, but like on my crippling exhaustion days it was even worse. And so we'll never forget staring at the bucket and thinking, I am so angry. I am angry at any and all gods and the universe. I'm angry at cancer. I'm angry at asbestos. I'm angry at his source. I'm angry at the doctors for not understanding that to them he is just patient number 462, but to me he is my dad. I am angry at myself that I can't find a way out of this. This I've usually got someone I can call, something I can do. I've spent 15 years as a health journalist at that point. Usually someone knows someone who knows someone who can get me appointment, who can do something. And this was one of these settings where there was nothing that I could do, I could grind my way out of it. And so I did what any self respecting adult would do and I lined that bucket up like I was David Beckham and I kicked it as hard as I could into the wall that was sitting opposite. And I remember it hit the Wall with a real crack. And then it completely failed to crumple under duress, even though I had given it a red hot kit.

Exactly right. And then it just kind of rolled, like playfully back into the middle of the driveway, like taunting me with its superior resilience and its stupid handle. And it was one of those moments that I was like, God, I really hope nobody saw that. But I just had to let that.

I did. It was like my version of a rage room. I just needed to kick something.

So my answer is yes. Yes. I felt angry sometimes. And I will say for people listening, I think that in when we are faced with our biggest challenges, it's like putting our personalities under a microscope. So if you were private before you become more private, if you were emotional before, you become more emotional, and that might not be the rule, but that would certainly fit our experience.

Yes.

Yes.

Yes. And so dad and I had always had a really good relationship, but dad had had a strained relationship with his self and with his place in the world. And that was magnified. So I'll never forget interviewing Zenith Virago. You've had her on the podcast, haven't you?

So she is, for anybody who doesn't know who's listening, probably Australia's most famous death educator. Wonderful woman. And I'll never forget her saying to me, when someone is dying, they either expand into love or contract into fear. Fear. And when she said it, I was like, when people use language with me.

And I have really limited capacity for woo.

And then I got there and I.

She was right. When he was grateful and showering me with love and affection and open and adventurous, that was. He was pure love. And when he was short and Grumpy and second guessy and mistrusting. That was pure.

Annoyed about the scissors. Exactly. That was pure fear. And I. I suppose we think that when the hardest thing in the world is happening to us, that these little grievances will become. Doesn't matter. And evidently they're just pressure valves. They don't.

And so certainly there were moments between, you know, we didn't fight, but certainly there were moments. Dad had always been in real favor of sort of raw truth and generosity of spirit and didn't always love when the raw truth was brought to him about anything. And I still felt like that was my job to bring it to him anyway when he said that that's what he wanted.

Yeah. So, as I said earlier, nobody was saying the D words to him. Nobody was saying death, dying, none of that. I'll never forget one night we were at the hospice. So dad did manage to die at home, but we did put him into hospice for two weeks to get his symptoms under control. Then he came home for two weeks, and then he passed away, which was what he wanted. And that's amazing. But I remember being in hospice and dad had a really extended period of what's called terminal restlessness. So his body needed to move and move at all times. So we would walk. Slash shuffle is probably a better term for him because his feet were so swollen with fluid at that point that they didn't fit in shoes or slippers. So we would kind of shuffle around the hospital grounds for hours and hours. He just. It was like his body just had to keep moving.

Same. Same thing. And I.

Yes.

Yes.

Moving, gotta keep moving, and couldn't fall asleep. I remember watching him and he would go to fall asleep in his chair and then his body would jolt awake as though that if he let his body go to sleep, that the universe would take him. So it was a really tricky time of trying to manage that with medications and what have you. And the doula said to me, I need you to understand, Casey. I have never seen this terminal restlessness go on for this long like this.

No. He.

So I think so. But I remember us walking through, shuffling through the hospice grounds, and he said to me, be honest with me, do you think I'm getting out of here? As in, out of the hospice? And I said, I remember distinctly I had this moment between his question and my response and I really breathed into it because I didn't know, was it kinder to tell a white lie? Was it a white lie being perhaps. Yes, I do, full stop.

Exactly. And what he was asking me for, which was the truth. So I remember breathing into the space between the question and my response and saying something along the lines of, I do, dad, but I think you think that you're going home for a bunch of good weeks. And it was, you know, I chose my words terribly, but I think what I was trying to say to him was, yes, I do think you're getting out of here, I do. But I think that you have sort of fooling yourself into thinking that you're going home to have an extended period of good time. And I don't think that that's coming.

If I had a go again, I would probably say to him, I think your care needs have changed whilst you've been in here. And yes, I absolutely think that you're getting out of here and you'll be going home. And I should have just left it at that. And I have spent hours and hours replaying that conversation again and again and again and beating myself up about it. And now I'm trying really hard to look at that girl, that woman, with total compassion, and give her the respect that she deserves, because he was coming to me for the truth, because he wasn't getting it from his healthcare professionals, but he didn't like it when I said it, so.

Yes.

With a lot of other people who.

Yes. And I understand that for people listening, as I was in that moment, you're thinking on your feet, you're in conversation, you don't have time to say, can we just park that? And I'll circle back once I've done taken some counsel on this. So I guess I would say you're not always going to get it right. I don't feel like I got it right in that moment. And I remember his reaction was, he said, oh, well, that's giving it to me straight. I thought I'd give it a good fist. That's what he said. And I remember it hurt me so much because I felt like I had let him down. He had asked me for the truth.

I had given him the truth and he didn't like it. And so I guess, you know, you know your person best equally. So, you know, I watched my mother care for her partner, her long term partner, and she would often get on the phone to me and he had esophageal cancer. So again, very poor prognosis. Caught late, as it often is. His prognosis was very poor. It was quite clear that he was going to die. And I remember she would often get on the phone to me and she would be sort of cheerleading him with. I call them pom poms of false hope, which, you know, if somebody says to you, I'm scared, I think I'm going to die, I don't think it's fair to say to them, no, you're not. Don't think like that. I think as the carer, we need to be able to hold space for those fears and not cheer them away because I don't think that they are promises that we are allowed to make.

Did it at all. Yes.

Yes. And I will say that the element that is completely out of your control is them. At the end of the day, this is their rodeo. This is their journey. This is their prognosis, diagnosis, death, disability, disease, whatever it might be. So here we are talking about how we get it right for them. And some people will never get there. We'd like to think that they get to this level of acceptance and that they expand into love, as Zenith would say.

That's right.

Yes, it's true. And you know, I will say this. Where my dad was willing to go was we had lots of really tough conversations, really beautiful conversations, and I kept really detailed notes. And whenever he would say something that I didn't want to forget, I'd put them in quotation marks so that when I was looking back, I could hear his voice saying those words specifically. And I'm so glad that I did that because I think it's easy to think when someone has just said something really beautiful to you. It's easy to think. I'll never forget them saying that.

You do. And so the fact that.

Yeah. It's incredibly helpful. That was also very cool. Yeah. But now, you know, when I'm having a bad day, I can read back and read all of these beautiful cheering on messages from my dad to me, which is such a gift. I feel so glad that I was able to keep those notes. So I've got all these beautiful moments captured between us that I don't have to forget because they're right there in print for me.

Yes. And I'll tell you this, this was. Has been a really heartening glimpse into what's possible for me lately with AI is that a friend of mine, her husband has been diagnosed with motor neurone disease. He's 42. They have three little kids, 2, 4 and 6. And he has unfortunately the most rapidly progressing worst type, and has already, you know, lost some of his physicality and to a large extent his voice. And we did a big fundraising event for them, trivia night for them a few months ago. And he, because his voice has now gone, he was able to use AI and he typed, I think with his wife, typed out a speech, used AI federate all of his videos and things of his voice. Previously, I think he'd done a podcast interview for work or something.

Exactly. And AI read us out the speech and he just stood at the front and looked at all of us. There were 200, 300 people in the room. And it was so moving and so beautiful that he was still able to. Makes me feel emotional just talking about it, that he was able to communicate that for a little bit longer he will be able to continue to communicate with his children and with his wife and with his family and how beautiful that that now exists. And I'm sure it will be used in all sorts of the wrong ways.

Sure.

I thought was just a really great.

I called it next of kin because when I was taking dad to these medical appointments, I would be frequently filling them out for him and writing down either his next of kin or his emergency contact, which was me. And I found myself equally so when I would take my children to the doctor or when I would go to the doctor, we write down who is the person that they call when things go wrong. And I found myself thinking about the fact that we write that name down, that phone number down, and we never expect the phone to ring. We write it down for emergencies, but we never think that we're going to get the call. And so I started asking myself, like, what does it really mean to be next of kin? And what do you do when the phone rings and you answer and you are the next of kin or you are the emergency contact and things have gone wrong? What does that look like? And why don't we have a better guide to be able to help us through some of those really, truly awful, awful times? And so it just stuck. I just loved it.

I started writing it as a blog and was able to work on some of those blogs with him, which was so nice. And I mean, the book really is based on so many conversations that dad and I had. We're very analytical people. So we would leave every appointment and start dissecting it. Did we like that doctor? Did we not? What could they have done? What should they have done? What was the administration process like? It still boggles my mind that we were getting physical appointment reminders to his apartment, Letters printed out, letters saying, your next appointment is on this date at this time. And the phone number at the bottom. Whenever we would ring, it was seemingly unmanned. I don't know what phone that was. But when we would go to the clinic, there was four receptionists sitting behind the very phones. I assumed that we were ringing, but none of them ever seemed to be answered. Sometimes the appointment reminders would show up.

Well, it's like, how can it be 2022 at that point, I'm still waiting on a hard copy letter. Like, what happens if we move house or it gets lost or. It just didn't make any sense to me. I was like, surely we could move on to email or text for that. That is just shocking, shocking to me. So the administration side of things, we would really pick that apart. And I suppose it gave us something to focus on. Right? Like if we were in charge for a day, this is what we would do. This is how we would do it better. And so, so many of those conversations are what has formed the bones of this book.

I think it was the sense making in the beginning. But that said, I have long. I'm a health journalist, a career health journalist. It's all I've ever wanted to write and speak about. I've never done sport, politics, news, current affairs. Not interested in any of them. I consume them, not interested in being a part of producing them. Health is where it's at for me. It's where it has always been for me. I don't want to write or speak about anything else, and so I'm just deeply interested. And this is sort of what I was alluding to earlier about these conversations that dad and I would have. You know, we would pick things apart and really analyze the pieces and put it all out on the table and stand back and look at it from a different perspective. And I don't have anyone else in my life that I can do that with in that exact way. And so he was brilliant at those types of things. He was so present and so clever and so capable of being able to hold competing standpoints and being able to really look at something holistically and maybe offer you a way of looking at something that perhaps you hadn't considered. And always kind of looking at things from the other person's perspective.

Journalist, I would anticipate. Indeed. But really hard to apply to oneself.

So to have somebody to unpack and to do those things with was such a joy. You know, I didn't have the book deal when he passed, but I. He did know that I was writing as a book and that that was the intention. And I remember him saying to me, I'm so delighted that our story will be out there and I hope it's a bestseller.

Yeah. And I will say dad was in favor of two things. One was raw truth.

And the other was generosity of spirit. And so I actually say in the introduction, dad is obviously not here to approve this manuscript. However, what I can tell you is that he trusted me and my writing implicitly and that he was in favour of those two things and that this book is chockers with both. So I have to believe that he would absolutely be in favour of everything that's in there. And I will say that I gave it to a couple of people in my family who are very trusted, knowledgeable, kind people who are close enough to our family to have really been on the inside, but not so close that their judgment could be clouded by their experience or emotion. And I gave it to them and specifically said, I need you to be brutally honest with me. If this doesn't feel fair or reflective of dad or of our experience in this, you need to tell me. And when I got their word back, saying, like, I think you've done a beautiful job of really nailing exactly what the experience. Experience was like. And in fact, I think you've been very, very kind in some areas. That's good enough for me. I'm mindful of the fact that dad lived 66 full years before disease kind of upended his life. And so this book really is focused on the last two and a half years of his life and then the aftermath of him passing away. And I'm mindful that the subject material of that doesn't always allow him to. To be seen in his best light. So I am grateful that I had that counsel to be able to say, yes, this is very fair and reflective. That felt important to me.

Yes.

That's right. And I said, I had my Perth launch the other night. My siblings were there and my grandparents. And I said to them, I need to thank you all for being so generous of spirit to allow me to tell my version of this story. And I'm mindful that this is only my version of this story. I gave it to all of them to read before it went to print. I was like, here are all of the pages that you are mentioned on. Here are any bits that I think are sticky. Can you please have a look? If you've got any issues, tell me now so that I can fix it before I go to prayer.

Yes. And so I said to all of them, I'm grateful, I appreciate that you have your version of these stories, but the fact that you would be so generous of spirit to allow me to step up and tell my story and Dad's story in a very public way like this, I think is a real credit to them.

Yes.

I would say when you get the call, step up if you can. And not everybody can for a whole range of reasons. Maybe they geographically don't live in the same location and they can't leave where they are and go home. Maybe they work full time and they have to to afford their mortgage because that's the way that they've set up their lives. Maybe they've got children with high needs who mean that they don't have additional care to be able to give. There's a whole range of reasons why somebody wouldn't be able to. But if you can, my advice would be to take the chance and step up. Because whilst caring for dad was the hardest, most challenging, some of the most awful times of my life, it was also the most rewarding and rich and personally transformative time of my life with this person that I love dearly that I will never get back, never ever. And I tried really hard with my younger siblings to say to them, you're not there yet. You're still at the like, oh, my friends and my family, the world is so big and exciting. You haven't gone through the pace where you've circled back to your parents yet, so go all in. Do it so that you've got no regret. And one of the things that I think I did really well is because I didn't leave anything on the TABLE I went all in. My grief now is quite uncomplicated. I don't have regret or shame or disappointment or any of those other layers of complexity that I think we often have in grief.

Yes. And it just. Yeah. So my advice would be if you can step up as much as you can, because I really believe that you are forever changed for the experience in all of the very best ways. You know, being with somebody while they're dying is a very profound experience. Not at all unlike birth. And you will never. How could you be the same after an experience like that? I will also say that not all relationships are good and straightforward and they feel complicated and clunky and I get all of that.

I definitely sweat the small stuff before way more. You know, I've got a tendency for anxiety. I have adhd. I can be a little bit all over the place in terms of my life sometimes and that can really bring about lots of anxiety in me. I'm much more self compassionate. I'm much kinder to myself now. I have my moments. Don't get me wrong, we all do. Yeah, I still shout and scream and curse when I kick my toe on the couch.

Yes, I do indeed have to kick the bucket sometimes, but it's like it opened the aperture of my lens a little bit. Like, first of all, that life is so short and can be taken from us at any moment. Which, of course, that was a lesson that I was going to learn. But also that the time that we get with our people, no matter how long we get, it really, truly is the most precious thing to us. Like, I guarantee you, dad was not laying there on his deathbed thinking, God, I wish I got a real job. I really wish I slayed in my career in the same way that I will not be laying there thinking, God, that was such a great day when I did all those podcast interviews and like, my book was number one on Amazon, Amazon. I will not be thinking about any of those things. Yeah, I will be thinking about my babies and my husband and probably my mom and my dad and those moments where I went for a swim and held my baby on my hip or ate that great strawberry in Paris or whatever. But like, those little teeny tiny moments, I think it brought all of that into really sharp focus and it doesn't mean that I don't get caught up in the crap that we all get caught up in. But I'd like to think that I'm quicker at processing it now because I think once you get the worst news, the worst news for dad, it's like, okay, well, everything else is a doll.

Yeah, it does. It does. And I'm mindful that, you know, heaven forbid, should my husband get a bad diagnosis or myself or one of my children, that would be a whole nother level of that, of that experience. Of course. Course. Right.

Yes.

Yes. And, and the two core skills that I'm trying to land in the book are how to navigate the healthcare system better and how to advocate for yourself and the people that you love within it. And those skills apply regardless of whether or not you're caring for someone with a terminal illness, a chronic or complex condition, an addiction or mental illness, a particularly neurodivergent child. I'm dealing with that at the moment. Disability, it doesn't matter. The core skills are the same. It's getting good at using the system that's available to us. We've got one of the best healthcare systems in the world, and it's challenging and complicated and difficult to navigate, and you fall through the cracks all the time, even when you are very health literate. Got some really handy contacts. I still fell through the cracks all the time. Absolutely.

Totally. And I think about people who don't speak English as their first language, or don't have a support system, or can't read and write. You know, we have a real equity problem in healthcare in this country. What's available to you and I is not available to everybody.

So I'm super mindful of, of that. However, those two skills, anybody can acquire them, advocacy in particular, they're higher order executive function skills, Good communication, good negotiation and relationship building.

That's right as well. I'm holding my. My copy of the book in my hand and it is marked. It's much loved to buggery because I will use it forever. I'm going through it with my daughter at the moment. She's neurodivergent. So now I'm navigating that whole world. You know, I had to call 11 psychiatrists to find a psychiatrist that even had their books open that I could even get an appointment with. We waited nine months for an appointment. This is privately. Publicly is a whole different kettle of fish. We waited nine months for our appointment. Our first appointment was $1,000. We got $200 back from Medicare. I'm mindful that the majority of people will not be able to do that. And that breaks my heart. But this book will teach people the skills to get what you need out of the healthcare system. And I always say our healthcare system is like Lego. It is designed for the pieces to fit together. Primary health, so GPs, allied health, so pharmacists, psychologists and the like, physiotherapists. And then acute or tertiary care, so hospitals and specialists, they're all designed to fit together. But you are the person playing with the colorful blocks. It's your design, it's your diagnosis, it's your journey, it's your geographical location. You have to learn to work with what you've got and then know that you are the one that's in charge. Nobody's coming.

Yes.

No. Good bookstore.

Yes, it came out in paperback on the 27th of August, so it's in all good bookstores. Amazon, Booktopia. In the airport. Sorry, in the airport. Yes. Very exciting. And then it comes out. New Zealand, Canada, UK and US in the next month or so, which is very exciting.

Thank you.

Me too.

I hope so. Thank you so much for having me.