Tough conversations and anticipatory grief: being a carer

When Casey Beros' dad was diagnosed with mesothelioma, she knew her entire world would change. More than three million Australians are carers — a role people are often thrust into without any kind of map. So based on her own experience, Casey wrote one. On All in the Mind this week, what it takes to be a carer for a loved one. How to get through the tough conversations and difficult moments — from giving bad news to talking about voluntary assisted dying — and still come out the other end in one piece. Guest: Casey BerosHealth journalistAuthor, Next of Kin https://www.caseyberos.com/nok-book Credits: Presenter/producer: Sana QadarSenior producer: James BullenProducer: Rose KerrSound engineer: Roi HubermanYou can catch up on more episodes of the All in the Mind podcast with journalist and presenter Sana Qadar, exploring the psychology of topics like stress, memory, communication and relationships on ABC Listen or wherever you get your podcasts.

• 0:00Speaker 00

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• 0:38Speaker 02

  It was one of those calls that I think we all live in fear of. And I can tell you in explicit detail where I was, which is kind of strange because I was in a completely unfamiliar Airbnb. And yeah, I don't think you ever forget where you are when you receive one of those calls. This is health journalist Casey Barrows. I remember that the carpet was like flecks of, I want to say, pink and blue. And there were two single beds in this kind of guest room. And I just remember sort of standing for the first part and then sitting on the edge of the bed and then kind of slumping. And I kind of felt the blood trickle from the top of my head out through my toes is what it felt like.

• 1:23Speaker 02

  You know, I realised very, very quickly that this was really genuinely terrible news to be receiving. And what was the news? The news was that my dad had been diagnosed with a disease called mesothelioma.

• 1:37Speaker 02

  So for anybody who has, is not familiar, mesothelioma is cancer from exposure to asbestos. And being the good millennial I am, I very quickly put him on speakerphone and then had a very quick top-line look at what he was looking at by way of prognosis. Now, please bear in mind that at that point, I had been a health journalist for 15 years. So this is not something that I would recommend. But I was able to look very quickly and gather just a couple of really reputable sources to get a sense of what it was that he was looking at. And I will never forget my eyes just kind of darting from link to link, seeing, you know, six months, eight months, 12 months, words like fatal and incurable and rapidly progressing.

• 2:23Speaker 03

  This was a life-changing call for Casey. She packed up her life in Sydney and moved to Perth with her husband and kids to be closer to her dad. And she took on a completely new role within her family: carer. It's a role that more than 3 million people in Australia occupy, about 12% of the population, and it can take a major toll.

• 2:46Speaker 02

  There were certainly times where I was reaching out to my family and saying, like, "Guys, I haven't got this. I have two small children, I have a husband, I'm trying to keep some money coming in the door. I can't be with him 24/7 and I need you guys to step up." Drill Sergeant Casey was my nickname amidst my family, which let me tell you, really ruffled my feathers when I first heard it. And then I sort of realised, like, actually, this is the reality of it. Somebody does need to be in charge.

• 3:14Speaker 03

  Casey's experience inspired her to write a book, one that explores both her experience and her dad's.

• 3:21Speaker 02

  The name of my book is Next of Kin. So it is a what-to-expect-when-you're-expecting-for-the-other-end-of-life. You know, it is equal parts story and compassionate, practical guide. And I feel so lucky that I get to share him with the world.

• 3:41Speaker 03

  This is All in the Mind from ABC Radio National. I'm Sana Qadar. Today, what it takes to be a carer for a loved one, how to get through the hardest moments and toughest conversations and still come out the other side in one piece.

• 4:05Speaker 03

  How close were you and your dad?

• 4:07Speaker 02

  Dad and I had always been very, very close. My parents split up when I was very, very young, and so I lived with dad half the week, mum half the week. And so I had lots of this, you know, really deep and meaningful one-on-one time with him from when I was very little. And so I think for that reason and a bunch of others, we were really, really close.

• 4:26Speaker 03

  And how would you describe your dad? What kind of person was he like?

• 4:30Speaker 02

  I would describe him as a free spirit. His name was Jack.

• 4:36Speaker 03

  Right.

• 4:37Speaker 02

  He actually changed his name about a decade before he passed away. His name was originally Dennis and he just had never felt like that had fit him. And so he had changed his name to Jack. And to be honest, it was actually a much better name for him. It really, really suited him. You know, he, there were five of us to four different women and he never married any of those, but he married a couple of others. So if I'm painting a bit of a picture.

• 5:02Speaker 03

  Yes.

• 5:02Speaker 02

  You know, I, I still viscerally remember women's reaction to him when he would come and pick me up from school, wearing a sarong and a T-shirt. Like, he really was a really beautiful man, six foot three and beautiful dark skin and, and, and the most intelligent person, I still think to this day. He was kind of the apple of my eye, I think. And yeah, I just adored him.

• 5:26Speaker 03

  And when you describe him like that, yeah, Dennis feels like a very straight laced kind of name. Jack feels more appropriate.

• 5:31Speaker 02

  Yeah, it does.

• 5:35Speaker 03

  So to come back to that call, you get this awful news. Do you remember what you said in response?

• 5:42Speaker 02

  Yes. Look, I think one of my superpowers, and whether this is just my neurodivergent nature or whatever, I'm very, very good in a crisis, even when it kind of directly relates to me. And so I, I remember getting very, very calm. I remember thanking him for delivering that information to me and acknowledging how hard that must have been. And, you know, telling him that we would kind of work it out together. All of that said, he clearly had done some work to get to that point, to be able to deliver that news to me. I think there was only one or two people who knew at that point. And mesothelioma is one of those sort of trickier diagnoses where it's not pretty quick to diagnose. It takes some time.

• 6:26Speaker 03

  Your response towards hearing that news, that sounds like a very mature way to handle such bad news. You give some advice in the book as well about how to both deliver bad news and receive it. And part of that advice comes from, directly from your dad and part of it's from you. Can you talk about, um, yeah, some of this advice for how to deliver bad news? And then we'll flip to receiving.

• 6:46Speaker 02

  Yeah, sure. And I will just say that I I'm painting a picture of myself that that does sound quite mature and level headed. Rest assured that when I hung up from that phone call, I completely fell apart. So I'm not sort of uh being promotive of like ultimate stoicism. I just, in those moments when there's somebody else who is having to be big and brave and deliver this incredibly difficult information to you, it felt, I don't know, respectful or um kind to be able to catch, you know, this steaming hot ball of lava that he has just thrown at me in a way that doesn't cause further distress

• 7:28Speaker 03

  Right.

• 7:29Speaker 02

  on him.

• 7:30Speaker 03

  That isn't so incredible. Like I that stands out to me as maturity as well because it just makes me think of a time in my own life when I um became a carer. I was much younger when this happened. I was twenty two and it was my partner who was diagnosed with cancer. But I I remember when I got that call, I did none of the things that you did. I burst into tears on the phone and I don't think it was very helpful. So it's incredible to hear how you handled that.

• 7:53Speaker 02

  Look, and that's really, really kind of you to say. And I will say that that is the benefit of getting a call like that when you are thirty six.

• 7:59Speaker 03

  Yeah.

• 8:00Speaker 02

  Or forty six or fifty six. You know, you've got some life behind you. But I think that that actually really beautifully outlines, I guess, what my advice would be. And I will premise this by saying that, you know, our bodies will jump into fight or flight and do what they do. And I don't want anybody who's listening to this to have had an experience like the one that you just shared and feel bad. But I guess that's why conversations like these are so important, because it allows us to plant these seeds in ourselves so that when these calls come.

• 8:30Speaker 03

  Hmm.

• 8:30Speaker 02

  And they're coming for all of us at some point in our lives, that we do have some tools to be able to deal with them. And I think that, you know, Dad thanked me later for being able to catch that information and not make it about the impending loss and and also to not make it about me.

• 8:52Speaker 02

  And so I guess from the deliverer's perspective, from in this case dad's perspective, one of the things that he shared with me was that he had done some work with a psychologist. He had reached out to somebody before he went and shared that news to get some tips from him. And one of the things that that psychologist shared with him was, in the beginning, really keep the news very close, because, and I love this term, he said, there is a very ghoulish aspect of humanity where people are naturally drawn to bad news. And what that does is it sort of detracts your energy from being able to focus on yourself and navigating through this and your healing. Now, I say in the book, I think when you

• 9:36Speaker 02

  go through these types of things, it's not time to be private, it's time to be human. But I think that that advice is actually really powerful, because I think you need to think really clearly through who you want to share it with and why, and then how you share it with them. For example, his parents, we told together, so him and I, me there for support to him, and them there for support for each other, because they live in each other's pockets, they're in their 90s, they deserved to have that experience together. However, his other children, he told individually, because they were much younger and they deserved to have their own experience of having that land on them in whatever way it did, all

• 10:20Speaker 02

  of which was appropriate and welcome, and their own flaw to be able to ask questions of him. So I think just really thinking critically about who you're delivering it to and how you would deliver it to them. The other piece of advice that he got that I think is really powerful is, don't beat around the bush, don't use euphemisms or nice language, don't bury the lead, as we would say in journalism, just give it to them straight.

• 10:45Speaker 03

  And then in terms of tips on how to receive bad news, you've covered some of it very helpfully already. Is there anything else that you think would be worthwhile to share?

• 10:54Speaker 02

  For the receiver, you know, just bear in mind that there is a huge amount of courage that has had to take place in order to have this conversation with you. And you're well within your rights to say things like, Can you hold on a second? I just want to get a pen. I just want to write this down. I'm nervous that I'm going to forget some of the details. Do you mind if I take some of the details down? And thank them explicitly for telling you. Acknowledge how difficult that must have been. And it's okay to say, do you mind if I take some time to digest this? And then can we have another conversation about it? You know, you might not feel ready to have an in-depth conversation about it at that exact point in time. You might want to go away and work out how you feel about it. And then come back with a series of questions.

• 11:39Speaker 02

  And all of that is okay.

• 11:41Speaker 03

  That is such a helpful and beautiful script.

• 11:44Speaker 02

  Thank you.

• 11:47Speaker 03

  Casey's father was diagnosed with cancer in June 2021, which, if you cast your mind back, you'll remember that was a time when interstate borders were closing unpredictably, especially in Western Australia.

• 12:02Speaker 02

  We landed in Perth at midday to a press conference saying that at midnight that night, so 12 hours later, they were shutting the borders behind us indefinitely.

• 12:11Speaker 03

  Wow.

• 12:12Speaker 02

  So we had inadvertently moved back to Perth.

• 12:16Speaker 03

  Yeah, that is such a like quick and stark flip over to carer mode.

• 12:21Speaker 02

  Yeah, although I will just say, you know, he didn't really need that much quote unquote care in the beginning. Really, it was about being a second set of eyes and ears.

• 12:30Speaker 03

  Right.

• 12:31Speaker 02

  And we were told that he would have six to 12 months. And we were so lucky, we got two and a half years with dad. You know, it really extended the amount of time that I was able to have with him. And probably the last six months of that were when things really stepped up from a care perspective.

• 12:47Speaker 03

  Yeah, I was going to ask, because a moment ago you said you didn't really realise that you were stepping into this carer role specifically, until much later. At what point were you kind of really in the thick of it and realising, okay, I am the carer?

• 13:01Speaker 02

  I reckon I realised that maybe sort of 18 months into away from his diagnosis, just when things started escalating a little bit, it started to become really apparent that I was in charge. And it's not a great realisation when you realise that it's up to you to coordinate a lot of this stuff.

• 13:21Speaker 02

  One of the things about terminal illness is that, or in my experience anyway, is that I could ask four doctors for his prognosis. Help me prepare myself and my family. What is your best estimate here? Are we talking months? Are we talking weeks? Are we talking days? And you would get four completely different answers. Like, it really struck me in that time that they have no idea. And I think that that is not at all about their level of expertise. It's about the human spirit. And the human spirit can rally like you would not believe. I can't tell you how many times we were told, it's weeks now.

• 14:05Speaker 03

  Oh, wow.

• 14:05Speaker 02

  And then he'd live months.

• 14:06Speaker 03

  Wow.

• 14:09Speaker 02

  I think when you're in the position of being somebody's primary carer, maybe it's for your partner or for a parent or whatever, when you hear they've got weeks, you go, okay, these are going to be some of the roughest weeks of my life and evidently theirs. But I can do anything for a few weeks. And so you are probably, especially if you are in that sandwich generation, have small children, aging parents, you're probably already white knuckling through. And then when it goes on for months, and then more months, and then more months, you're so exhausted, but so grateful that they're still here. It is the strangest feeling.

• 14:56Speaker 03

  You're listening to All in the Mind from ABC Radio National. I'm Sana Qadar. I'm talking today to health journalist and author of Next of Kin, What to Expect When You're Expecting to Care for Someone You Love, Casey Barrows. And luckily for Casey, her friends and family were able to rally around her and help support her while she cared for her dad.

• 15:19Speaker 02

  My husband and I had open dialogue. My mum was being incredibly helpful. I let the teachers at my children's school know what was going on so that they could form

• 15:28Speaker 03

  Right.

• 15:28Speaker 02

  another layer of protection around my children. If none of those people, your boss at work, your dearest friends, you know, if those people don't know what's going on for you, then they can't support you.

• 15:41Speaker 03

  And in terms of advice, there is one thing she suggests or strongly advises you don't say to someone who's going through a difficult time, like she was.

• 15:50Speaker 02

  And it is, let me know if there's anything I can do.

• 15:52Speaker 03

  Hmm, right.

• 15:54Speaker 02

  Because they don't know what their name is or what day it is. You know, when you're really in the trenches, you've got no idea what they can do for you. You've given them another job to you.

• 16:04Speaker 03

  Yeah.

• 16:05Speaker 02

  Please, you think about what I could do for you and then, and then you need to come to me and tell me what that thing is.

• 16:11Speaker 03

  Yeah.

• 16:12Speaker 02

  They're just, you know, then I can't tell you the number of people that said that to me and, but I can tell you how many of them I circled back to and said, actually, I've thought of something and here's what it is, because that number is zero.

• 16:24Speaker 03

  Yeah.

• 16:24Speaker 02

  I'm never, ever circling back, so don't make them do it either.

• 16:27Speaker 03

  It also feels like a bit of a platitude. Like, I know when I've had that said to me, in my head, I've thought, are you just being nice and saying something because you have to say something, but you don't really mean it and that's why you've given me such a vague example of what you can do?

• 16:40Speaker 02

  Yes. And so, for example, one of my friends, rather than saying, hey, I'd like to gift you a massage, here is a voucher, or you organise it and I'll pay for it. If somebody had said that to me, I'd be like, that is so kind, thank you so much. I'm never, ever doing that because A, a massage feels way too luxurious for my current situation.

• 17:02Speaker 03

  Right.

• 17:02Speaker 02

  But B, there's three steps that I have to go through. I have to find the place, I have to look it up, I have to look at my diary, I have to find a time, then I have to actually contact them to book it in and then I have to go, which sounds like a giant first world moan, but I suppose what my friend did that was so beautiful was this, she messaged me and said, I'm booking you a massage, it's on me. This place, named X, round the corner from your house, has a spot on Tuesday at 10 or Thursday at 6. I will come and look after your children. So give them like really solid, concrete options as to what would be genuinely helpful.

• 17:39Speaker 03

  One of the things I did want to ask, because Obviously, being a carer is emotionally difficult, but it's deeply meaningful, as you've touched on. But there are also times where it's not necessarily meaningful, it's really difficult. And the person you're caring for isn't being the easiest because they're going through a lot of stuff, obviously, themselves. I wanted to ask about that because when the person you are supporting is being difficult, perhaps being a jerk, it can be very difficult as a carer to know how to deal with that because the normal rules of engagement are sort of out of the window. Can you talk about that at all? Were there times where your father was being a bit difficult and you had to kind of deal with it?

• 18:20Speaker 02

  No, Sana, it was just all roses, like absolute perfection, you know? I wish, I wish, of course, you know, he's only human. There were absolutely times where he was not his best self, many of them, and for me too. You're exhausted and you're stressed and you're worried and like, these are the highest stakes that there are, right? So we were not always our best selves. And I guess what I would say is, I think our first port of call needs to be compassion, compassion for them, but also compassion for ourselves. I think there can be a tendency in this relationship between patient and carer that patient trumps carer because patient is the one going through the thing.

• 19:04Speaker 03

  Yep.

• 19:05Speaker 02

  And I don't think that that's fair, actually. I think the same rules of combat apply. You know, we'll always give somebody that we love a bit of a longer leash when they're going through something. Perhaps they've been made redundant or they've had a hard day at school or they're feeling anxious or depressed. Like, we'll often be quite kind, additionally kind to the people who are going through those things.

• 19:26Speaker 03

  Yep.

• 19:26Speaker 02

  And then there will come a point where you're like, do you know what? You are allowed to go through this experience, and I actually said this to Dad at one point. You know, you are allowed to go through this experience and experience it with your full humanity. And I don't for a second pretend to know what it feels like, to be staring down my mortality. But you don't get to inflict damage on me in the process.

• 19:54Speaker 03

  You said that.

• 19:54Speaker 02

  Because, yeah, because, you know, I think that there can be a lot of collateral damage from these experiences, particularly for carers. And, and, and I don't think that that's fair. And I had a conversation with a few psychologists about this. I think you're allowed to say, hey, I can see that you're really struggling here. But you don't get to speak to me like that or behave towards me like that because you're doing damage to me in this process and I'm here purely to support you. So, you know, we had a couple of those conversations and they always, even if they weren't immediately received, he always circled back and said, I know I was being difficult, I'm really sorry.

• 20:39Speaker 03

  For a time, Casey's father was considering voluntary assisted dying. It was a choice that sent her on a roller coaster of emotions.

• 20:48Speaker 02

  So dad signed up successfully for voluntary assisted dying. And I remember at the time when he told me that it was something that he was interested in. I remember feeling really heartened by the fact that he had this like exit card in his pocket. I believe for him, there was a level of fear around mesothelioma. Breathing towards the end becomes really difficult. And I can only imagine how much fear

• 21:16Speaker 03

  Yeah.

• 21:17Speaker 02

  that put in him. And I remember him going through the process and getting that all in place. And then when you are ready, so when you are kind of nearing the point where you would like to use it, the voluntary assisted dying team comes over to your house with these two, in our case, they were kind of two red, they look like toolboxes that you would pick up at Bunnings.

• 21:36Speaker 03

  Wow, okay.

• 21:37Speaker 02

  And they come over with these two boxes. And in these boxes are a dummy kit of. The voluntary assisted dying substance. Mm hmm. And the real thing. And you essentially go through a rehearsal of what you would go through on the day. And the reason that they do that is because the person who is taking the substance has to be able to mix it themselves. Right. And then consume the liquid. And towards the end of people's lives, they can tend to lose their swallow reflex. And so they have to check that you're still capable of consuming that amount of liquid. And I just remember them coming over and us going through that experience and watching my dad use the dummy kit.

• 22:17Speaker 02

  It is the strangest rehearsal of all time, watching him pretend that this is the substance that is going to end his life. Mm hmm. And I remember after they left, dad passed the test, they left the real kit with us. But I remember after that thinking, you know, what I'm, what I'm describing there is what's called self administered. So you are going to take the medication yourself at any time of your choosing. But the other option is sort of physician assisted. So that you can have a doctor usually come over and administer the medication by way of an injection. So it doesn't really matter if your swallow reflex is gone. But what a lot of people don't realise is that you, you kind of have to choose your pathway. Right.

• 23:00Speaker 02

  In that process. And so what he had signed up for was self administered. But towards the end of that process, I was really nervous that his choice was being taken away from him. I was noticing that when he would have a sip of water, it would make him cough. And I would think to myself, well, it's one thing for it to happen with water. What if it's happening with the substance that is designed to end your life? What if you have a coughing fit and you only consume a quarter of it or a third of it? Like, what happens then? Yeah. And so I, you know, and that was some of the hardest conversations that I have ever had to have. Was saying to him, dad, I'm nervous that you're not going to get what you want here.

• 23:40Speaker 02

  And you've communicated to me really clearly that you want to go out, to use his words, with your full faculties. You want to be awake, you want it to be an active choice. And so we kind of had to go back through part of the process in order to switch to practitioner administered. And then, as the universe does, it sort of took it into its own hands. And we didn't end up using the voluntary assisted dying medication. We didn't do that. And I'm so glad now that we didn't. I know plenty of people who've had a really beautiful experience with that. But for me, having a day and time in my diary at which my dad was going to die,

• 24:25Speaker 02

  that felt so anxiety inducing to me. And I would never say that to him because I was like, you get what you want.

• 24:35Speaker 03

  Yeah.

• 24:35Speaker 02

  You're the one doing the dying and I'll keep all of those fears to myself.

• 24:41Speaker 02

  And I'm so glad that for us, it didn't play out like that. And it happened at a time that wasn't chosen by us and a doctor's schedule. It just happened when it happened.

• 24:57Speaker 03

  Casey's father died in November 2023.

• 25:03Speaker 03

  One question I'm wondering, this might be slightly odd, but I'm wondering, because you had such a long period of this kind of anticipatory preemptive grief, when he did die, do you feel like the quality of your grief changed at all in the aftermath? Like, or just, you know, it's a different version of complicated. You feel like, can you quantify that at all?

• 25:23Speaker 02

  It's a really good question. I, I, what I realised or what I noticed was, bearing in mind that when you're somebody's primary carer, a huge proportion of your time is taken up in caring for them. And so one of the things that I noticed is how much time. Came back into my life and I don't know whether that was for better or for worse. You know, it probably left me to my own devices a little bit too much and really created space for that grief. I remember distinctly saying in the first six months after he passed away, when people would ask me how I was doing, I would say I was doing really well and I really felt like I was doing really well.

• 26:05Speaker 02

  I felt like I had done a lot of the work to get myself to that point. And I suppose that's the silver lining of having time is that you have time to coach yourself through it. And then I remember about six months in, I had sort of stopped being able to do really rudimentary things like, I would still get up and get my kids to school, albeit, you know, usually on the bell or after it. I was still doing the things, but I wasn't doing any of them well.

• 26:33Speaker 03

  Hmm.

• 26:33Speaker 02

  And I would really struggle to remember to take medication, to dress myself. I remember would stand in my wardrobe and just stare at my clothes going like, I actually don't know. There's too many elements here. Like, I don't understand what the weather is. I don't understand what I'm doing because I haven't looked at my diary. This is too hard for me. And I remember thinking to myself, I think something's wrong with me. I think I might be depressed. Uh, maybe I've got a brain tumor. You know, brain tumors can change people's personalities. I was like, maybe I'm deficient in something. I need some therapy. Like, I was hunting for these reasons. And I remember standing in my wardrobe, in my underwear, yet again, staring at my clothes

• 27:16Speaker 02

  and realizing that what I was experiencing was grief.

• 27:19Speaker 03

  Hmm.

• 27:19Speaker 02

  And it hit me in the face like a sad, wet fish. And I remember thinking, oh my God, you idiot. Like, you do this for a living. You've had been a health journalist for 20 years. You've interviewed plenty of psychologists about grief. Like, you idiot. How could you have not put those two things together? But once I had that, I was like, oh my God, I'm grieving. That's what this is. Okay, I probably don't have a brain tumor. I think everything's gonna be okay because I'm grieving. And so I guess what I learned is that, you know, grief doesn't follow anybody's rules or anybody's timeframe. It does what it does and we are simply along for the ride. And I say in the book,

• 28:04Speaker 02

  Fresh grief can make you cry in the supermarket on a Tuesday, and so can 25-year-old grief. Like, it just rises up and hits you out of nowhere. And, and all of that is okay.

• 28:17Speaker 03

  Yeah.

• 28:17Speaker 02

  And so I've just, I've learned to, to surf the waves, so to speak.

• 28:24Speaker 03

  That is health journalist and author Casey Barrows. Thanks to producer Rose Kerr, senior producer James Bullen, and sound engineer Roi Huberman. I'm Sana Qadar. Thanks for listening to All in the Mind. If you like what you're hearing, feel free to leave us a review wherever you get your podcasts. That really helps people find the podcasts. And if you have any feedback, you can also contact us on [email protected]. We read everything that comes through that inbox, although we don't always have time to respond to everything. Um, there's just too few of us and too many of you, but we read everything. So if you have a message, we will definitely see it. All right. Thanks again for listening.

• 29:09Speaker 03

  I'll catch you next week.