Lauren: 0:01

Why do kids bully me at school? What do you mean when a body dies? How does it actually die? Why do I feel tired all the time? Or why can't I sleep? Or why am I so sleepy? Or why is my tummy sore? Or how do I come across as normal to other people? How do you handle the big feelings? Those kinds of things. And then the bigger existential questions. So what is the meaning of life or what is even the point of living if you just have to die? Why do some people who are sick get better and other people who are sick don't get better and they die? So ... Read More

Lauren: 0:01

Why do kids bully me at school? What do you mean when a body dies? How does it actually die? Why do I feel tired all the time? Or why can't I sleep? Or why am I so sleepy? Or why is my tummy sore? Or how do I come across as normal to other people? How do you handle the big feelings? Those kinds of things. And then the bigger existential questions. So what is the meaning of life or what is even the point of living if you just have to die? Why do some people who are sick get better and other people who are sick don't get better and they die? So really big sophisticated questions. So what we learned was that the questions overall were quite sophisticated and it also shows that The breadth and depth of the questions that grieving children can have and the importance of then creating an environment around them where they are encouraged to ask those questions and maybe helping the parents or caregivers around them to feel more comfortable in trying to answer those questions.

Catherine: 1:08

Welcome to Don't Be Caught Dead, a podcast encouraging open conversations about dying and the death of a loved one. I'm your host, Katherine Ashton, founder of Critical Info, and I'm helping to bring your stories of death back to life. Because while you may not be ready to die, At least you can be prepared. Don't be caught dead acknowledges the lands of the Kulin nations and recognizes their connection to land, sea, and community. We pay our respects to their elders past, present, and emerging, and extend that respect to all Aboriginal and Torres Strait Islander and First Nation peoples around the globe. Described as the beating heart of Lionheart Camp for Kids, founding director and. CEO Shelly Skinner's vision is to make sure all children are provided with the support and care they need after losing someone close. Lauren Breen is a professor at Curtin University specializing in the psychology of grief and loss. Her research focuses on understanding grief experiences, improving palliative and end of life care, developing interventions, and promoting grief literacy. Together, they published What Bereaved Children Want to Know About Death and Grief in the Journal of Child and Family Studies last year. Learn Let's see what they learned. Thank you for joining us, Shelley and Lauren.

Lauren: 2:39

Thanks for

Catherine: 2:39

having us. Shelley, can you please tell me where you got the idea for Lionheart Camp for Kids?

Shelly: 2:48

Sure. As a social worker, I worked in palliative care and end of life for adults at a veteran hospital here in Western Australia. And through that work, I found that all of the stories that the veterans would tell me were always about their family or about their life or their time in the war would very often center around when someone had died. Or there had been a loss for them, whether that's a parent who died when they were young, or a child of theirs who died, or a spouse, and When they recap their whole life story, that was a really focused and really important and life changing moment for them. I then moved to work in pediatrics at Princess Margaret Hospital and then Perth Children's Hospital. And I could see kind of happening in real time. The impacts for children, teens and families when somebody had a sick child for a long period of time or somebody's child had died, I could really see that life altering experience play out for them. As the veterans had described had happened for them 50 or 60 or 70 years ago and working in WA I noticed that in we have a lot of really good Charities and supports for children if your family member dies from cancer And there should be those great supports, and at Lionheart we work very closely with them. However, before Lionheart, if your family member died of something that was not cancer related, there was very little support for children and teens, and particularly families as a whole. To navigate their grief and as someone who my mom died when I was 20 and like all good families are a really quirky family. And, and I know that my sister and I would have very, very different lives now. Uh, had my mom died when I was six and it would be my dad's sole responsibility to take care of us. There would just be no way that. Our lives would have turned out in any way looking like they have today. So I decided that it was really important that we provided support for children and teens in WA if they'd experienced the death of someone in their life, uh, through, regardless of how. Regardless of who in their life, regardless of where they live, they were in a very, very large state, and regardless of how much money they had to pay for services. We really wanted to normalize the grief experience and really help kids and teens know that regardless of who you are in this world, Grief and loss will happen for you, and it's a normal and healthy response of your body. And so to make sure that we knew, we know it's normal and that we have some really strong, healthy coping strategies, knowing how to manage it when it does happen time and time again through life.

Catherine: 6:01

Yeah, wow. That is really insightful that you, it's something simple to recognize, but at the same time, obviously, as you said, you know, you didn't start low in heart and foot two 2015 and prior to that time, there was no camp for kids that weren't affected by a loss through cancer. Like, it's amazing that it took that long to recognize that that support was required outside that, that, that illness.

Shelly: 6:31

Absolutely. And certainly there was some fabulous programs again in the cancer space. You know, Renita said who did this fabulous camp called Camp Onwards for siblings of children with cancer, but that real normalizing that, you know, the universal part of your, any kind of triangle that you, you have in a public health model, that normalizing peer connectedness, community connectedness, psychoeducation, uh, just the. Providing support and education to the whole family as well. Uh, we certainly noticed when we started that we were providing support to the children, kind of a five to 12 year old age group, and they would go home to their families and their families would report back to us that those new skills and strategies were fantastic, but they weren't sustainable in the family home because nobody else knew what they were talking about. All right. So our model. Yeah, so our model evolved into 5 to 12 year olds, 12 to 17 year olds and adults all at the same time learning the same stuff.

Catherine: 7:34

Yeah, right. So is that how sort of the programs evolved during that period is that you realize that there was a need to, I suppose, provide everyone with the same language in the household then?

Shelly: 7:47

Absolutely. Yeah, make sure everyone understood the same information, knew the same language, had the same strategies, and also just being able to help families have those really sensitive, tender, tricky, uncomfortable conversations, because certainly without some guidance in our family, we wouldn't have trouble doing it. And I teach people to do it for a living. So I can only imagine for people who don't do it regularly, uh, that those kind of sticky, tricky, sticky conversations are hard to have. So being able to teach all family members to just lean into those, I think it's been really helpful.

Catherine: 8:24

So tell me a little bit about the programs that you do offer. Uh, so it's a camp that the kids come away to. Tell me a little bit about it all.

Shelly: 8:34

For our new families camp, we call them camp. And we are trying to think of a better word. We haven't thought of a better word yet because it's not an overnight experience. Uh, so you come, it's a two day program. So you come along for one day and then you go home and you practice the things you learned and then come back the next day and and feedback on on how that went and continue the process. Really, camps are, our new family camp is our foundation and our core program to date. And with that, it's about bringing all children, teens and families together in one place to normalize what's going on. So most kids who come to camp will say they felt like they were the only one in their class or the only one in their school. They didn't know anyone else in their social circle. Who experienced a mom, dad, brother, sister who died, which is really interesting given that 1 in 20 children will experience the death of a parent during childhood up until age of 16. So in WA, that's about 30, 000 kids. So it's always really interesting to us that. given those really high numbers. And I guess that doesn't even include those children and teens that experience the death of a sibling or another really close family member that when they come to camp often say, I just don't know anyone else and I feel really alone. And no matter how much people try to help, um, unless you've lived the experience, you don't quite have that That ability to know and so kids, they, I mean, it's a terrifying proposition. The idea of saying to a child, let's go and talk on the school holidays for two days with a complete strangers about the saddest thing in our whole life. No one's going to say that sounds amazing. So they, upon arrival, everybody looks terrified and we'd be worried if they didn't, but within half an hour of being together in the group. The kids have all made friends and it's like they've known each other forever. Uh, so we start with some really fun games, which breaks the ice, and after everyone's gone off into their, their separate spaces. And then we all bring a photo of the special person in our life who died, and we, in our small groups, tell our story. So my story is always, I take a photo of my mum and say, this is my mum, her name is Marina, she was in the Navy, and she was a chef. And I would say she died when I was 26 and they used to use her scones. We used to joke, she's very, very good at making savory dishes, not sweet dishes. So we used to joke that they would use her scones as like rocket launches in the Navy instead of missiles because they were so hard and terrible. And then some and, and then everyone goes around and tells their story about their person and immediately that's the this connection. And people often say, but don't kids say, oh, but. Your dad died, but my brother died and see the difference. So make a comparison and we never say that kids just feel really connected by the fact that someone important in your lifetime and so an important in my lifetime and so that sets the scene for the day. Um, and let them know that we're going to be really open and upfront and they can participate and contribute as much as they would like to. And we look at the relationship they had with the person who died, what they know, what their memories are, what their feelings are, really connecting that thoughts, feelings, actions, exploring for kids. A lot of the, I have a headache or my tummy hurts. Both of to say, I feel really jealous about, or I feel really ashamed because. And we work really closely with them to help them work out what their story is going to be moving forward and how they continue to keep the relationship with the person who's died in their life and how you harness that and what does that look like and how do you do that in a really safe way.

Catherine: 12:47

Wow. Like they're amazing skills that. I don't think I actually learned until my 20s or early 30s to be perfectly honest.

Shelly: 12:57

Yeah. Absolutely. And we really hope that if by teaching kids these skills early, that they'll have this whole skill set to use repeatedly over the course of life, because then what we know for this cohort of kids is that they're far more susceptible to risk taking behavior, drug and alcohol misuse. Increased mental health issues in adolescence and in adulthood, you know, increased likelihood to attempt suicide during adolescence, whole raft of things, and really by introducing these skills, normalizing grief, and creating this peer support around them, and this community around them, we're really hoping to reduce those negative impacts that we know exist.

Catherine: 13:42

It's really amazing when you say that talking about like the fact that the grief and the emotions that they're feeling can manifest in physical pain. Like, I know when my son was at primary school and he was always complaining of a tummy ache and we realized that it was associated with the bullying that he was feeling and that he went through at that time. So it's really amazing that you can give them the skills to understand that what they're feeling can manifest in a physical way. Cause like that's super powerful that they can actually be able to recognize that from a young age.

Shelly: 14:20

Yeah, it's amazing. And I think Those types of feedbacks from people and wanting to know more about that is really the basis of the work we do with Curtin University and with Lauren in the research, because there's not a lot of research out there, Australian research, and there's more and more all the time because Lauren's doing it, but about the impact for children and what that looks like holistically for them.

Catherine: 14:48

Yeah, and I think that's a good time to segue over to you, Lauren. So, you're a leading expert in grief, and as Shelley just mentioned, you know, and I mentioned earlier, you're a professor at Curtin University. But not only that, you're also on the board of Grief Australia and Lionhearts board as well. What was it that initially attracted you to focus your research on this area of expertise?

Lauren: 15:13

Yeah, so I'm a psychologist as well, and I have no idea what psychology was when I applied for university. I just thought it sort of sounds interesting. So I have no idea why I put that down on my preferences. And yeah, in terms of the research that I do, I guess a lot of researchers often get inspiration from their, their own lives. So I know colleagues, for example, who do research around physical activity, getting people to be physically active, and it's because they love all that, or maybe they study stuff to do with disability, for example, because they have a sibling with disability. So for me, when I was about 20, I had a, there was a death in my family from a road traffic crash. And so a couple of years later, when I was looking for something to study for my PhD, and I'd gone to the literature and thought, this, this isn't answering my question. My questions, this doesn't really fit with what I'm seeing and I guess in that naivety of you thinking, Oh, well, maybe I can make a difference and I can answer these questions. So I ended up doing my PhD on experiences of people when they've had a family member die in a road traffic crash. And so ever since then, the bulk of my research has been around all kinds of things to do with grief and loss across the lifespan.

Catherine: 16:32

I don't think that we should ever apologize for that naivety of thinking that we can change the world. I think that, you know, if people didn't, you know, have that thought in the first place, we'd be a lot worse off. So I'm very pleased you had that, that thought at that younger age. And, you know, the work that you do, especially in the road traffic space, obviously is quite. dear to me when after my car accident that I had five years ago, and just the difference that that can make one incident. And fortunately, I didn't obviously die in that. But yeah, it can truly change your life and those around you in an instant. So

Lauren: 17:09

yeah, absolutely. And part of the research that I did eventually led to the establishment of an organization called Road Trauma Support Western Australia. So, yeah, and as you said, I'm on the board of Lionheart Camp for Kids, and I was on the board for, of Grief Australia for nine years, but just recently stepped down from that, was spreading myself a little bit too thin, I guess, and trying to consolidate my time a little better.

Catherine: 17:36

Ah, the, the naivety's turned into wisdom now, and you've said it before.

Lauren: 17:42

Yeah, exactly. Wisdom, cynicism, laziness. I don't know.

Catherine: 17:48

Tell me how did you meet Shelley?

Lauren: 17:51

That's a good question. I think we met at a conference in maybe Like a palliative care conference, maybe around 2016, 20, something like that. And then when Shelley, this is my story, so it might be slightly different from her memory, but she then phoned me one day at, when I was at university and saying, you know, I'm, I'm establishing this charity, this organization, we want to do this. We want to make sure we get, we have this as much evidence based and evidence informed as we can. Is this something, you know, you and I could work together on? And so, yeah, we started on a research project evaluating the very first camp that Lionheart Camp for Kids ran. And then after that was published, Shelley invited me to join the board of Lionheart. And so that's my memory of it, but I'm not sure, Shelley, if, if that's kind of correct or, um, uh, matches your memory of it.

Shelly: 18:47

No, no, it's a very similar memory, but I do remember before making the call, I was trying not to fangirl too much because obviously I'd read all these articles over the years that Lauren had published and I was like, oh, will she take my call? So, yeah, no, and it's been such a lovely experience. Partnership and a lovely connection because I see things on the ground and kind of in the cancer in the programs. Um, and Lauren's obviously working in the academic world. Um, and so being able to really marry those 2 has been lovely.

Lauren: 19:24

Yeah, absolutely. And it's not that one is more important than the other, or it's not just that, you know, I do the research and then Shelley enacts it in practice. The practical sides of things, or those questions actually inform the research. So it really works together so beautifully, I think.

Catherine: 20:48

But it really does. Like I, I think that this is the research paper. Oh, there we go. You can't even see on, there we go. The research paper that we're referring to. So it's, you know, what bereaved children want to know about death and grief. And, you know, what were learnings that you, you had come out of this? Because for me, like, to have Australian research in grief and, you know, normally I'm used to reading papers from the UK or, so to have something that's here about our children is fantastic. So, so congratulations to both of you. So, so what did you find out?

Lauren: 21:24

Yeah, so the way we went around this study or went about it was so Shelly and the team had done multiple camps and as one of the activities that the children do in the camps is they get to write questions and submit them in a box and then in the afternoon on the second day, I believe, Those questions then are answered in a session by Shelly as a social worker and also a medical doctor. And so they get to ask any kind of question that they've always maybe wanted to ask, but never maybe had the opportunity to ask or felt brave enough to ask or that they had, or that it was okay to ask this question. And so Shelly and the team had collected those questions over many, many camps. And yeah, so we decided let's see what those questions are. What are kids who are five to 12 years of age? Who have experienced grief, the death of someone close to them, and what, what kind of questions do they have? And there were, I guess, five different kinds of questions that they asked. So the first one was about a lot of curiosity to do with the. Causes and processes of death, they wanted to really understand, but like, what do you mean when a body dies? Like, how does it actually die? They had questions to do with those kinds of mechanisms. The next set of questions were very much about managing grief. So, you know, why do I feel tired all the time or why can't I sleep or why am I so sleepy? Why is my tummy sore or how do I act? How do I come across as normal to other people or yeah, those kinds of questions. How do you handle the big feelings? Why do kids bully me at school? Those kinds of things. And then the next set of questions were about human intervention. So understanding, you know, the role of, say, doctors and nurses, or what resuscitation is, or the role of hospitals, things like that. And then the fourth one was, I guess, bigger, philosophical, existential questions. That are really about the meaning of life and death. So what is the meaning of life or what is even the point of living? If you just have to die, why do some people who are sick get better? And other people who are sick, don't get better and they die. So really big. Sophisticated questions. And then the fifth one was around the questions about after death. So, you know, where do you go when you die? Is heaven real? Will my uncle see my pet dog in the afterlife? So those kinds of questions there. So I think what we learned was that the questions overall were quite interesting. Alright. Sophisticated and it also shows the breadth and depth of the questions that grieving children can have and the importance of then creating an environment around them where they are encouraged to ask those questions and maybe helping the parents or caregivers around them to feel more comfortable in trying to answer those questions. So, how can we develop that language or those skills for the adults in those children's lives?

Catherine: 24:31

Some of those questions are huge, you know, there's been novels and many of them written about what is the meaning of life and why are we living it? So it's amazing to think that that a question like that is going on in a five to 12 year old's little mind. You know, that's huge because perhaps. You know, I have had experience with my own son, so I know there's some curveballs you can get, but, you know, like, that's, that's really insightful. And so, from the learnings from that research, Are you looking at modifying or adapting certain things that you're offering in the, the, the camps or the two day workshop, Shelley?

Shelly: 25:14

Yeah, for the questions, the question and answer session does form a base, I guess, for some of the activities that we run. Many of the questions are, you know, things like, if my dad died of a heart attack, does that mean I'll die of a heart attack too? Or why would someone choose to end their own life? Um, and one of the big ones that kind of gets asked every single time is, uh, if my dad has died, what will happen to me if my mom dies also? And so these types of questions really form some of the content, um, yes, in with the children's programs, but often more with the teen programs and the adult session. So these questions really help us say to adults, these are the things that children are repeatedly asking us. So over the 10 programs that we. Captured these questions. I think there was over 270 questions, and there was a lot of repeated same questions. So we're able to then create the content for the adults to say, lots of kids asked this question, and particularly if you think about a question like, what will happen to me if my mom dies as well? My dad has already died for a lot of parents. The idea of having that conversation to say, if I die too, then this is what's going to happen. You're going to go and stay with blah, blah, blah, parents will say, I don't want to say that. Because what if they haven't thought about it? And what if they're not worried about it? And me introducing this concept suddenly makes them really worried about it. And we're able to say, we almost guarantee you That your child has thought about this, you know, the idea of death and dying and grief and has kind of been introduced into their life much earlier than we would have liked, but now that it's there. They have the questions and sometimes instead of laying in bed at night worrying, if you just have that conversation with them now, it'll be a tricky kind of 8 minutes of your life, but that will hopefully mean that they can put that to the side and say, okay, at least we know what the plan is and kind of move forward. My husband and I redid our will recently because we recently got married and didn't know that when you get married, the will that you had done previously is no longer valid. So anyway, we know this now. So we redid our will, and our, we said, and the kids are really interested, because we obviously talk about this at home all the time. The kids are really interested. What happens to us if you die? And we said, you go and stay with, and we explained to, and they said, well, what if she dies too? And I said, that's okay, because then you go and stay with auntie such and such and uncle blah, blah, blah. And, and the nine year old was like, But where did they die? And I said, how, like, how many steps down the chain do we need to go? And she said, well, what if you're on a party bus and you will die at the same time? And I said, okay, like, let's go one further step. And so who, like, who do you think? And they were able to say, you know, our friend's mom and dad. And so we then had that conversation with the friend's mom and dad, and they were able to say, yes, if such and such dies and auntie and uncle such and such die, yes, you can come and stay with us. But if mommy was going out to a party, we'll probably be on the party bus with her. But it's really interesting. So my nine year old, that's how many steps it needed to take for her to feel really comfortable with, okay, there's a plan. And she hasn't mentioned it since. But even being able to have that conversation, I think was really nice. And I think it demonstrated to her that there's no topic that's off limits. Like you can talk to me about anything that's kind of confronting or uncomfortable or whatever, which is, you know, I guess a good thing to role model. In your family life as well.

Catherine: 28:52

Yeah. And it gave that scenario that you were just talking about gives so much power back to the kids being involved in that and thinking about like, as far as they want to take it, you know what I mean? Like you said that your nine year old needed some pretty, pretty good rich reassurance there. And I liked the fact that she thought of the party bus scenario.

Shelly: 29:15

I don't think I've ever been on a party bus in my life, my whole life.

Catherine: 29:20

I know. I was thinking the only time I've ever been on a party bus was probably my hen's day and I won't be having another one of those anytime soon. Oh, that's great. That's really fantastic. And so tell me, what do you think with, with what you've seen and the conversations you've had, what do you think are the most significant challenges that families face after a loved one has died? Did you want to go Shelly?

Shelly: 29:52

I was doing the long pause to see what you wanted to say. However, uh, I think given how program is broken into 3 bits, the challenges are really different depending on children, teens and adults. And I think the challenges, While some are very similar, some are a little bit different, depending on if you experience the death of a dad or a spouse, uh, versus a child in your family. So, the majority of families that come to our camp have experienced the death of a parent. We do have all sorts of family members who have died, but the majority is parent. And certainly what we see, For the adult in our adult group is they talk about, I guess, the things you would expect. So things like financial challenges, navigating navigating wheels, those types of things like dealing with it in laws, all the kind of things, the conflict, the things that go with it. But I think the other thing that they really talk a lot about is that sense of, I now have twice as many jobs to do. Thank you. around the house. And I have, I feel like I have half as much time and half as much energy. And there's probably a reason I wasn't doing it in the first place, because I'm not good at them. I don't like them. I don't know how to do them. But because I'm so busy with all my energy in that direction now, I don't have as much time to just delight in my children. We don't have as much time to, like, watch movies or hang out or go do fun things. So I think, you know, time is really challenging for adults. They, a lot of adults report, you know, a real sense of isolation. Like their friends don't know what to say, so they either don't say anything, Or, you know, it's really interesting. One thing that a lot of women who come to the program say that every single time they said, I'm so surprised is my, my women friends don't want to hang out with me anymore because they're worried that I'm going to steal their husband. And I was like, what do you mean? They're like, I really liked my own husband. I don't want theirs. But there's this real sense for women in the community that We just, we're so vulnerable that we will attach ourselves. And so that's always really striking for me. So what I love about our campus is that they bring these things together. Groups of people together, and it's not just women, it's men as well, but it's the women who say a lot of people with similar life experience and can be really connected. And so there, I guess, some of the challenges for the adults, and I guess for the kids, the challenges we see mostly around memories, so not feeling like they have enough memories of their own, wanting to hear more stories. From the adults in their life because that's how they form the memories in their life. That's how they work out their own memories and particularly for kids who perhaps are born after someone in their life dies. So, they never had a relationship with that person and I feel like there's this whole family that existed before them that they didn't belong to. And so being able to ensure a sense of belonging by telling stories and helping them build their memories and being able to, um, be connected in that way. Um, and I think the other thing for siblings, um, and Lauren talks about this all the time, is that your sibling is often your first kind of playmate, the person you learn how to have conflict with, the person you learn how to share or not share with, um, and who's always there. And if your sibling is to die, then often mum and dad still have each other, but you kind of have lost your person. And so you're feeling quite isolated, um, and if they've been sick for a really long time, and life was hard, and you know, they're at the hospital all the time, and you didn't have a lot of attention from mum and dad, or a lot of consistency. After they die, you might be feeling like things got a little bit easier. And you've got a little bit of attention back and so then you'd be feeling some guilt and shame around having those feelings and you know the times when perhaps if it was an older sibling suddenly you turn an age that means you're older than they ever got to be and those types of challenges for siblings. So, yeah, and I guess for teenagers, the other thing is that this is a time when they're supposed to be individuating. This is the time when they are supposed to not want to hang out with their parents and you don't know anything and your friends know everything and trying to work out who they are in the world. And so experiencing the death of someone in their family, they still on one. Kind of 1 part of them really wants to still individually and push everyone away. But the other part of them. Feels like the world is a bit of an unsafe place and they feel a bit vulnerable and they're wanting to kind of keep that connection with the people in their life, which is kind of contrary. To what's going on, so this is push and pull dynamic that is just kind of out of balance. Right? And so it makes everyone feel uncomfortable and angry and sad and cross. And so it's a bit of a perfect storm for teenagers. What do you think, Lauren?

Lauren: 34:56

Couldn't have said that any way, not even half as good as what you just said, Shelley.

Catherine: 35:03

It's really insightful how you're describing the challenges at each age group because they are very unique at each age group, aren't they? The things that they may be experiencing and also depending on who is their loved one that they've lost in that relationship. So it's, it's very insightful given, given the fact that there is so much complexity and I'm, I'm going to put you on the spot here. So my apologies. Do you think that communication is the key regardless of what level they're at? Like is, is that the thing? Like what's, what is there one magic thing or a bag of them?

Lauren: 35:46

Oh, I think communication is really important, but of course, how you might communicate to a five year old is going to be. Extraordinarily different to a 17 year old or a 12 year old and, you know, and I think that's one of the great things with Lionheart is that it gets, um, people to be able to talk about it in a way, you know, using their words and helps, and Lionheart helps them to develop that language and those words and that way in the family to talk about things because it's not something that necessarily families talk about well before. hand or that they've, even when there is a death, that they do talk about it well now. And so having that and having some of that practice and developing some of those skills and that it's okay to kind of for it to be an uncomfortable discussion or to have a tricky conversation, but it's much better to have that conversation than to not have it. So that's one of the amazing things that I think Lionheart does offer to the families.

Shelly: 36:46

We offer this idea of a follow up question, so if we wanted to talk about anything uncomfortable right now, as the adult, I would provide the information and say, if at any point you have a follow up question, You can just come and say, Hey, mom, I have a follow up question, as opposed to saying, remember that thing you talked to me about last week? And I just, like, they can just come and say, I have a follow up question. My question is such and such. And then I can answer that as best I can. I'll go away and have a think about that and come back. Because 1 of the things we definitely note with kids is that they're much better at grief than adults. And they're much better at talking about death and dying because for them it's just another thing that happened on a Tuesday. They haven't learnt to be awkward about it yet. And so they're really happy to, like, tell you lots of details that perhaps adults wouldn't tell you about. They're happy to tell you about how they're feeling about it, what they're wearing, who's there. So it's, it's lovely to be able to harness that. But the other thing they're really good at is, and I can't remember who recently just put out a really good video, a little YouTube video about this, but it talks about how children can jump in and out of puddles of grief. So they kind of can visit their grief for a little while, and then they just go off and play, or visit their grief for a little while, and say, what's for dinner? And adults will often say to us, like, I don't know if they understand, because they cried for half a second, and then they were out the back kicking the ball. Whereas as adults, we kind of get in our grief boat, and we're very committed to our grief boat, and we will like row that boat for, you know, a very long time. But kids just kind of dip in and out, which is such a healthy kind of way to live your life when you're grieving.

Catherine: 38:33

Just to even know that is, is amazing. And I like the analogy that you use that you've seen of the puddles, like that's great that they can kind of like jump in and out of it. And yet, yeah, as adults, I have been guilty of being in a grief boat once in a while, so I do, I do understand that one as well. So yeah, that's, that's really lovely imagery that you've used there, Shelley. Now, Lauren, you've delivered a TEDx talk. Uh, Kings Park talk where you spoke about the six myths about grief to bust for yourself and your loved ones. And you did this in 2022. What are some of the myths that we might have about grief?

Lauren: 39:16

Yeah, there's certainly a lot more than six, but obviously to keep it to a short talk, we just sort of, I focused on six. I think there's. A lot of myths about grief or a lot of things that people assume about grief that are not necessarily right, or in fact that there could be much more evidence that those things are completely wrong. I think one idea is that, you know, grief is the same for everyone. Grief is grief because I grieve this way. You must grieve that way as well. And instead of. Thinking that grief is actually quite unique. Each of us is unique. So, and each loss we experience or each death we experience is unique. So, the way we will experience it is unique and it doesn't have to be exactly the same as everyone else and that's all completely fine. So, there's no one way or one right way that we then have to do things. You have to do it this way or you have to do it that way or you're doing it wrong. I think another big one is that people think of grief as an emotion or as a single emotion instead of it being a bunch of different emotions. Emotions across a whole spectrum, obviously things like sadness and guilt, but also it could be relief. It could be, you know, it could be so many things, but it also affects us in so many other ways. It can affect us physically. It can affect the way we think. It can affect us, you know, financially, socially, it's not just an emotion or an emotional reaction. Another big one is that this idea there are distinct stages to grief and we have to go through each stage in and achieve each stage and then move on to the next stage in this sort of very linear step wise fashion and that's not the case either. It's sort of a bit all over the place. Most people when they're talking about grief will say, They might, instead of saying it in this step kind of way, they'll say, well, it comes in waves, or it's like a roller coaster. They sort of evoke those kinds of images instead. Another one is the timeline of grief. There's this idea that grief should be done within a certain number of days or a certain number of weeks. And any kind of grief that hangs around after that is obviously hugely abnormal. And, and that's not true either. Grief is part of who we are, and we're part of. We're the product of our entire histories of losses and successes and challenges and all the things that have come to us. And it's perfectly fine that particularly it could be uncertain days or certain memories or certain pieces of music. And then it reminds us of who, who has died. And that's perfectly fine and normal. We don't, that doesn't mean something's wrong with us and that we're going crazy. So I don't really like words like, Closure, move on, letting go, you know, recovery from grief. I don't tend to use words like that, that imply that there is an end point to grief. I think of it more of as a process and experience and as part of who we are. There's also the idea that, you know, I suppose one of the myths is that grief is always really hard, and of course it is hard, but there's also can be, there also can be things where we can experience personal growth or become more compassionate or value things differently in life. And there's those kinds of things that happen as well. And there's many, many other myths, things like, you know, young children don't grieve. So we don't need to worry about that. them. They're resilient anyway, so who cares? Or really old people, who cares about them? Or I don't know that women always grieve much more than men. I think women grieve in general in ways that might be a little bit different to men, but I don't think they necessarily grieve more or that men grieve less. It's just differently. Yeah, there's a whole host of different kinds of myths. And so what I try and do and Shelley as well is to dismantle Those, those myths of grief, because I do think they can be quite dangerous with people are judging themselves to this supposed standard that they think is real. And they think therefore, you know, that they're going crazy or something's wrong with them. And yeah, so that's why it can be really powerful to provide that psychoeducation or that information to children and to families about grief, that this is actually what it's like. Ignore those things you've heard. They're probably not right. Instead, know this kind of stuff, and that's really important.

Catherine: 43:39

Yeah, there's some, some big ones that you, uh, certainly, uh, tackled there, so I really appreciate that, Lauren. One thing that I'd like your, your opinion on is children attending funerals. Historically, some people have, you know, been told in the past not to have children attend. What's your thoughts?

Lauren: 44:00

So my thoughts are based on, there's a charity in the UK called Winston's Wish and they're a bereavement charity and they, many years ago, surveyed several hundred children who had gone through their services and asked them about the funeral and none said that they regretted going. But many of them were very upset still or regretful still that they hadn't had the opportunity to go if they wanted to go. So the general advice that I would give, and obviously Shelley might clarify or add or negate what I would say, but I would say, explain to the child what it is. So, who's going to be there? Where is it going to be? What are people going to be wearing? How might they be behaving? So, they're not going in without having some understanding. And then give them the opportunity to say, Yeah, I do want to go. Or actually, I'd prefer to stay home. Is that okay? And give them that option. If you're talking about very young children, If there's someone at the funeral who you're quite close to, maybe see if, is there someone else, like a close friend or someone else a little bit, maybe a further distance away from the person who has died, who can help you look after that child. So if that child wants to go for a walk around or whatever, someone can be there to do that so you don't miss out on the funeral yourself. Because you need to be there for you, for someone who's very close to you. So I think that's another consideration as well. But yeah, just explain it to the kids. And I think in the past people like to protect children from these topics understandably, because they do think it's kind of tricky and challenging. But yeah, the, the best advice that I, from my understanding is to explain it and just say, would you like to go? And that's okay. Michelle, what would you say?

Shelly: 45:51

Yeah, I agree. I think that's great advice and the feedback we've had from children and the children who understand kind of the funeral experience the best tends to be kids who've actually been involved in the funeral in some way, involved in the planning, or, you know, Have written a card that's gone into the coffin or written a note that's been read aloud, you know, in a way that they felt they've meaningfully contributed to it as something that they were able to do for their brother or sister or their mum or dad. I imagine from what I have, from my experience, the only time that it's. Kind of not encouraged for children to, to attend funerals is if there's, you know, an expected high level of like drug and alcohol issues in the family or family violence, or if there's expected to be conflict or if it's in, if there's expected that in that ritual, that the child will be negatively impacted in any way that might impact them into the future and their future experiences of attending funerals. Then I would say just have an extra think about it, and I guess have a few more people in the family talk about it before making a decision. But overall, I think, you know, as Lauren said, I've never, I think I've once at camp heard a child say they wish they hadn't been to the funeral, they wish they hadn't been involved.

Catherine: 47:12

Thank you for giving your insight on, on that

Shelly: 47:14

topic. But, sorry, what I should say though, is do what's right for your family. Like if that's not right for your family, and that doesn't fit right for you, that's okay. So I guess the other thing is. Every family is so different, and every ritual is so different. So if our advice and what we've seen in WA doesn't fit for you, that's okay as well. You're not going to damage your child by not taking them to the funeral. And there, you know, there's probably a whole bunch of really good reasons why families decide otherwise.

Catherine: 47:43

Now you've mentioned that you've just recently rewritten your wills. Lauren, have you done anything to prepare for your own death?

Lauren: 47:52

So I did write a will, but it was a long time ago, and I probably should update it now. I guess the main thing is in my family, so I have two children who are now 19 and 14. So they've grown up with me talking about these issues all the time. And you know, the older one, obviously, if something happened to me tomorrow, and I died tomorrow, they're still quite young, but yeah, they, they know. We've had that discussion as Shelly was mentioning before in her family about, well, if something happened to me or something happened to dad, you know, where would you go? Who would look after you? So I think, yeah, it's more about talking to them about not so much me preparing for say my dying or my death, but preparing for my absence in, in the world and the impact on the people who it would have the biggest impact on. And, you know, I'm, I feel, I'm privileged in a way that I'm in a situation where, unlike a lot of families, where something like that happens and then they also have to, you know, sell the house or move, move houses and move schools and so on. I know that my, my kids wouldn't have to move house. They wouldn't have that. So a bit, you know, huge, there would be huge number of changes in their life, but not everything would change. So I think, yeah, I feel quite, happy about that. And I know not everyone is in that situation. Yeah. So I think that's probably the main thing. I don't think I've done anything more. I mean, I do love to walk around cemeteries and sort of imagine what I might like to have. What kind of, you know, would I like to have this kind of burial or would I like to have this instead? And I think they're lovely places to go and lovely places to walk around with kids and look at the headstones and see the stories that Maybe not all mums do that, but probably Shelley and I are the type of mums who Who do these kinds of things? That's right. Okay. Yeah, that's probably it. I don't think I've done anything more, anything that's a lot more than what a lot of people might do.

Catherine: 49:54

Well, given the, the stats are around about 46 percent not having wills, I'd say that you two have done a lot more than probably quite a few people. So, but I, I have to say, yes, I am also, uh, one of those people that drag their family about around, uh, either church yards or cemeteries in Milan actually most recently. And that was amazing. Uh, so yes, I, I too am guilty of that. Given your, your experiences both personally and professionally, do you have anything that you'd like to provide as encouragement or advice to, to families that have children and, and in dealing with a loved one? I think

Shelly: 50:42

I would just say just be gentle with yourself and be gentle with others because As Lauren said before, no two people grieve the same way, and I don't think I've ever met a family where, so say it was my family, so there's myself, my husband, and we have three kids, nine, six, and three, and everybody grieves in a different rhythm, and everybody has a good day and a bad day at a different time. So, to have five grieving people in one fishbowl of a house is really challenging. And you know, the stats for kind of relationship breakdowns and all sorts of things are high. So I think I would just say, be really kind to yourself and be really kind with others. And do what's right for your family. You're going to hear a lot of shoulda, coulda, woulda, why didn't you. You know, we're a really judgy society and we are judgy around grief as well. You either, you know, you got over it too quickly or you hung on to it too long or you were too, you cried too much or you didn't cry enough or you talked to your kids about it too much or you didn't tell them enough. Like no one's happy with, you know, how, how we do things. But, and also there's no manual. Like once you become a parent, there's no, If you ever experience really acute traumatic grief. This is how you manage your grief while you're tending to the grief of your children and equally for grandparents. So we feel really strongly for grandparents because once you're a grandparent, you're kind of not in that power position anymore. You don't get to be the decision maker that you were when you were the parent. And so you're watching all of these things unfold and you might be able to contribute to the discussion, but ultimately you don't get to make the decisions. And so. If someone was to die, you know, your heart breaks for yourself, and then your heart breaks for your child, and then breaks for your grandchild, and you feel a little disenfranchised in that grief because you're not in the power position. So I think just. Accept that everyone is doing the very best they can, and if they could be doing better, they would be doing better. And just kind of, yeah, approach it with as much grace as you can, would be my advice.

Lauren: 52:56

Yeah, I really like that, and I would probably just add on that if, if you don't already have it as a topic of conversation in your family, maybe just talk about it sometimes, just like we talk about what's happening in sports or fashion or finances or the environment You know, all the things that we talk about, why not also have this as just a normal topic of conversation in the family? That's what I would, I would like everyone to have.

Shelly: 53:27

My kids last night, Lauren, so it was my, we had a birthday party and my son Almost seven year old got lots of Barbie and she was so cross at her three year old sister that she said to her, if I die, I am not leaving you my Barbies and you do not have permission to play with them. Exactly. Fantastic. I was so proud of her. I was like, got it. I'm writing it down.

Catherine: 53:51

Now, Shelly, I understand you have a new program called ROAR. And I believe that's w, that's RAW to ROAR. Can you tell me a little bit about it, please?

Shelly: 54:09

Absolutely. Uh, Roar to Roar is really special to us at Lionheart. Our programs to date, so our new family camp, our returning family camp, our online lounge and our drumbeat program have always been for families at least six months after time of death. Because these programs are peer support, um, and you hear other people's stories, and you're expected to be able to tell your own story to a certain degree, then we think that anything before six months is a bit too soon. And so when families come to Lionheart, they're always so appreciative to join the family, and being part of the Lionheart family means they receive support. Forever after that. However, so many families say, I wish we'd had this support before. I wish that we'd had someone to talk to at the time of death, or if it's an expected death before death to know that we could have these conversations, or we could do this planning, or we could prepare in some way. And so after receiving that feedback time and time and time and time again, since we started, we started to have a look around and see what other organizations provide this type of psychoeducation support for parents, for teens, for grandparents, for schools, and we found that there was no one organization that kind of And Addresses grief for everyone. So, you know, the palliative care WA provides a wonderful support in the palliative care space and silver chain and hospitals. And, but what we're finding, what we found was that families, particularly if they've been in a hospital, involved with a hospital setting for a long time, the day after their loved one had died, they kind of found themselves standing in their lounge room without their person, without their role, without a purpose, not really knowing what to do with themselves. And as a social worker who works in hospital as well, I know that you can't be that person you're, you're having to get tend to and deal with the people you're working with on that day, the very next day, and the next people who come through the hospital, you can't be in the lounge room with those people that you've been working for sometimes for years. And so, Raw to Raw, Lionheart, Grief Pathway, was developed by myself and Lauren and Kristy Felsi, who's also a psychologist, clinical psychologist, and we developed a program from time of death, if it's an unexpected death, or prior to death, if someone has a terminal illness, that we walk through with families, And help them through psychoeducation, uh, to what's important to your family in making memories. How are you going talking to the children in your families? How are the grandparents going? What about your workplace? Do you have a plan with your workplace? In my family, if my husband was someone with a terminal illness, I'd be saying, I don't know where your superannuation is, and I don't know who all our insurances are through. And he would say to me, I don't know what after school care I got girls go to, and I don't know what dentist the girls go to. And so making sure that everybody is aware of. all of the things and can be as prepared and planned as they want to be or feel they need to be. And then from time of death, people can dip in and out of that service as much as they'd like to. And what's great about this raw to raw program is say, for example, talking about children, we can talk with parents and grandparents about when's the right time to go back to school. Should children attend funerals? How to involve children in the process? What, what might they be thinking, um, at the moment? What questions might they have? And we can also go into the school. So we can go into the school and say either a child has died in your school community or a teacher. Or somebody else apparent as a school community. How do you want to manage this? How can we support your teachers? How can we support your chaplains? How can we support your students? What kind of rituals would you might like to do? And even further to that, we've been working with workplaces. So, if my husband had died, they might say, Shelly's coming back to work. How's everyone feeling about that? Would you like Lionheart to come in and give an info session to the team or work with the manager to talk about a return to work kind of plan? Because certainly I know, and even though I work in this space, certainly as a colleague, you know that do I say nothing. Or do I ask questions? And when do I do that? What does that look like? So this Raw to Raw program is really about supporting the entire community around the death of someone in their community. Uh, so primarily with the next of kin, yes, but also with the teenagers, the children, the grandparents, schools, uh, and the workplaces. And

Catherine: 59:07

how is this, um, program delivered? Is it online or how does it work, Shelley?

Shelly: 59:12

Yeah, so we, we've received some pilot funding through Telethon and the Stan Perrin Foundation and with that funding, we've been able to bring on two grief coaches, because we're being very clear, this is not therapy, that this is psychoeducation, so our grief coaches, uh, are both social workers at the moment, we had one social worker and one psychologist and currently they're both social workers and, um, This is done via telephone, via video conference, via email, some people refer just email, and then also face to face from time to time as well. WA is very geographically large. And we want to make sure that we provide support to everyone in WA, regardless of where they live. Um, and so hence the kind of online nature and platform. But certainly there is space for one to one. And then the other, in the future post pilot, we'd like to do some group work and do some more of that peer support as well.

Catherine: 1:00:12

And if enough funding, perhaps expand further from Western Australia?

Shelly: 1:00:17

Yeah, we would love that we definitely have had contact from a couple of different organizations in the eastern states to say, are you interested in packaging this up and and selling it on words? And I was able to say, the pilot's been going for less than a month, and we have about 21 families registered at the moment. And we definitely will let you know when we kind of a bit further down the pilot as to what we're going to do. But we found that there's just been this really great need and people have said. We want to be able to dip in and out of support as we need it. We don't want it to be prescribed. We don't want it to be for a certain period of time. And so, yeah, I'm really hoping that the WA community feels supported and feel like they understand grief for their whole family. Better by being part of this project.

Catherine: 1:01:08

And what I love about this program is offering those specialized skills in grief to organizations that don't normally have those skill sets. So, you know, going into your schools, going into your workplaces where the teachers and the HR people, it's not their, their, you know, wheelhouse to deal with this. So to be able to actually call on your services as required is just brilliant. So, yeah, I can see that there's a real need for it.

Shelly: 1:01:40

I'm so excited for teachers because I just think, you know, when they go to teacher school, they don't learn. There's a front line of everything to do with our children, so they don't learn about mental health and they don't learn about what happens to mom and dad divorce and what happens when you have a different cultural kind of faith than the other person in class. And, you know, they, they expected to kind of know a little bit about everything. Um, because they're just on the call, like, call face kind of day in day out. So anything we can do to support teachers, we're all on board for.

Catherine: 1:02:16

No, that sounds like an absolutely amazing program. And I really hope that you get the support and funding that you need. And, you know, I, I personally being a Eastern state person, we'd love to see that rolled out nationally. I'll stay tuned. And how can people support the work that you're doing at Lionheart?

Shelly: 1:02:39

Yeah, so I guess, you know, overall our mission is to create a society where grief is not Is seen as a really normal and healthy response to loss. So if you would all talk about it in your family from time to time and consider writing a will or consider discussing it at the dinner table, that would go a long way to helping us with our mission. Obviously, as a not for profit, we're always looking for donations and money. So, you know, if you have any rich aunties or uncles or win the lotto, like, please think of us. We're always, we're very, uh, have a very strong volunteer base. So if you do live in WA and are looking for volunteer experience, whether that's at camps or behind the scenes or at an event, we would love to hear from you, even just going onto our website or our social media and commenting or sharing any of our social media things would be great. And, oh, we also, we wrote a book, we wrote a children's book called Finding Fwebbers. So if you do have any children in your life who you would like to be able to explain death and grief to in, in a storybook fashion written by Australian authors, then jump on our website and have a look for Finding Fwebbers as well.

Catherine: 1:03:54

That's wonderful. Well, look, I can't thank you both enough for your time today. Thanks for being with us.

Lauren: 1:04:00

Thank you

Catherine: 1:04:00

so much. Thanks so much for having us. We hope you enjoyed today's episode of Don't Be Caught Dead, brought to you by Critical Info. If you liked the episode, learnt something new, or were touched by a story you heard, we'd love for you to let us know. Send us an email, even tell your friends, subscribe so you don't miss out on new episodes. If you can spare a few moments. Please rate and review us as it helps other people to find the show. Are you dying to know more? Stay up to date with. Don't be caught dead by signing up to our newsletter and follow us on social media Head to Don't Be Caught dead.com for more information and loads of resources.

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