Episode Three - What Do We Tell The Kids?

This episode offers honest insights into one of the most challenging aspects of palliative care - communicating with children about terminal diagnosis and a rapidly progressing condition. Aron shares how he and Angela navigated conversations with their children, and Kathrin, Creative Arts Therapist at Hospice West Auckland, offers professional insights and guidance on supporting children during these difficult times.

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Transcript

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On October 17, 2023 the bright more family's world was turned upside down when at the age of just 44 a tumor was found in Angela's brain. One month later, they were introduced to the world that is hospice. This is Angela's story, walking the final path together a hospice West Auckland podcast. Hello and welcome to episode three. In the last episode, we spoke with Charlie, who was Angela's primary nurse, and we learned about the first admission for Angela two hospice. And today, we have another special guest from the team. We're joined by Catherine, who's our creative arts therapist. Welcome Catherine, thanks for joining us. Hello. Good to be here. Tell me before we crack into things, what is the role? What does a creative arts therapist do? All sorts of things, and I think it is one of those roles that is just a little bit nebulous for people. I do various things in my role overall. Maybe an easy way to explain it is that a creative arts therapist lives in the realm of counseling and psychotherapy. So some of that work that a counselor or psychotherapist would do, and I bring in a lot of creative expression, could be painting, movement, sand tray, all sorts of things. And it can be a way of, kind of exploring what is happening for a person, kind of that deeper work. And it can also be a place to just have fun, a little bit of lightness, and play with the art materials and let them do their magical something. So it's, it's kind of a big umbrella of offerings that I have, yeah, and I'm guessing it's, you don't have to be good at art to do arts therapy. Not at all. It is primarily about the process of just playing with the materials, seeing what arrives. It's not so much about the product. Can be important what sits in front of us at the end. But you don't have to be good at it. I'm not good at art. So it's really, it's hopefully quite non threatening for people. And I can imagine using the creative mediums and the non threatening approach means that the work is quite good with children, which is why we've got you here today. Yeah, it's, it's actually good with any age. But yeah, I do also I love working with little people and going into those playful spaces with them, and speaking their language, creativity, art, making, play, that's their language, and meeting them where they're at absolutely and so, Aaron, I know that you, your family, had a little bit of input from Catherine. We did in your journey, particularly with with young Taylor, yep, yep. So about the same time that that I started coming to auspice forum for counseling. Taylor came along too, and got to meet, got to meet Catherine. Taylor is a Taylor loves that, you know, the arts and crafts kinds of things as well. So it was really good, good for her. The only downside was that she would come out covered in glitter. Taylor loves glitter and and Catherine was a big fan of encouraging her love for glitter so that the drive home, you know, would involve, once we got home, would involve vacuuming the car, and Taylor and 10 and Taylor, but yeah, she, she really, really enjoyed it. And did lots of, you know, lots of fun things that she, that she really enjoyed. So, yeah, it's cool. I remember going into a few of into your room, Catherine, after you've had some sessions, and it's, it starts off so nice with all of the creative supplies. And I just love it, because you go in and it's, there's everything there for you to pick and choose from. And after a session, when you go in, sometimes it's just chaos and their hate, yeah, it goes against everything for, like, I would literally come out covering covered in glitter, and like you say, like, the room would just be chaos, and I'd be like, This is not for me at all. Like, there's no organization here, but Taylor's had a great time. And yeah, that's yeah, not for me. And that's exactly part of the magic that, you know, people experience stuff in their life that they don't have control over that feels chaotic. And to actually put those that that chaos into the room and be like, Okay, here it is. And how can we learn to contain that? Yeah, and how can maybe the glitter? Glitter is very specific for people. Yeah, it brings that bit of magic in really dark spaces. It brings that sense of lightness. I've had kids really, we put it on our head. Oh, I know before we started or left as a sense of protection. And sometimes people really say that themselves, it's we need this specific litter to protect ourselves, to be safe. And I just draw with it, yeah, sorry not for it. Yeah. And. Absolutely I know Catherine, a lot of your support of Taylor in particular, was in the bereavement side. But one thing we've started to touch base on in the last couple of episodes has been how Aaron and Angela were able to support their kids through this journey. Aaron, I think we touched base very quickly last episode about When Angela was diagnosed. How did you tell the kids? Or what did you tell the kids? What happened there? Yeah, so, so the day that we that we very first found out that there was a that there was a mess. It. There was obviously the initial part where Angela and I are at the hospital and, and my, my first thought was, okay, I've, I've got to let the kids know, we have to tell the kids. And, and there wasn't, there wasn't a discussion like, there was just kind of, you know, this, this thing between the two of us, where it was like, yeah, that's, that's what has to happen next. And so that, you know, there was no kind of, at the time, there was no kind of deep thought that went into it, you know, around Okay, well, what do I tell them? Why am I telling them? It was just like, that's just, that's just the natural step is, is to tell them, and Angela obviously had to stay in, not in hospital overnight. So it was, it was left, left to me. And, you know, our kids at the time were 916, and 19 at the time, and so I had to sit them all down in the lounge. And you know, they're kind of like, well, what the hell is going on here? Kind of situation. And at the time, it was, I'm just going to tell you what I know, and you know. And all that was at the time was the, you know, they found a mess in mum's brain and, you know, and, but they're gonna look after her, she's gonna have to have some scans and things like that. And, but my focus was just tell them what you know, you know. And no, at no stage did I that I think I can't tell them this, or I can't tell them that it was they got to know. And so that was, you know. So that was that very first night. And then, you know, Angela was then going to, in two weeks, she was going to have a biopsy, and, and then two weeks after that, she was going to have a she, we were going to get those results, and and again, when, when, when that came around, it was like, Well, again, we they just have to know. They know that these things are they know that these things are happening and, you know, and they need to be in and they need to be included. And I remember, you know, it's kind of the same as some of the, you know, some of the stuff around, you know, Angela planning a funeral and stuff like that. People were, people were kind of taken back. What do you what do you mean you've told the children, or, you know, or what are you going to tell them? And to us, it was like we're just going to tell you everything, and we if we can tell them the truth? Yeah, I imagine that would have been tricky the different ages. Is there a balance as well around telling the truth but also knowing that their kids, and how do we protect them? In a sense, what was going through your your mind? Yeah, it was just, it was just tell them the truth, like, I can't, I can't protect them from this, you know, like, like, it's gonna happen and and and they're gonna be a part of it. And, like, I can't, I can't shield things from them. Like, you know, you know, Dad, why are you not at work today? Well, because I'm not taking, you know, I'm not taking mum to the hospital so she can have brain surgery. And, you know, like, it's almost like it it just would become, for me, it would have just become more complicated. And then the the two weeks after with the kids, all knew that we had an appointment at the hospital and we were going to get the results of the biopsy. They all knew when that date was. They were all they were waiting at home, and we we just got this devastating news. So we drive home in silence. There's there's no radio, there's no talking, there's nothing. We just drive home in silence and we and we go inside, and the kids are all there. Now we we go in and we go and we go to our bedroom. We just kind of, we're there for probably half an hour. Maybe it just to kind of get our heads around what's going on. And Taylor, you know, was nine at the time, came in and said, Why is dad sad? I feel like you're not telling me something, and I and I want to know what's going on. I mean, what do you know? Like the how do you not do anything else, but, but tell them? And and again, I was just honest with her. I said, I said, I'm not We're not hiding anything from you. We're just trying to get our our head around what, what's happened, and we're going to come and talk to you soon. Fine, off, you know, off she went. She was okay with that. And, and again, we, we sat them all down, and, and we and we told them, and we said, look, you know, Mum, obviously, mum's had her surgery, and they've got the results back. And, and this is, this is the outcome, you know, mum now has, you know, 18 months, potentially, you know, and, but we're going to do everything that we can. And so it was delivering that news. And then, you know, almost like a, like, a positivity sandwich, right? Like, here's this really terrible news, but, but here's some positives that we can kind of do, and that was, you know, we're going to spend lots of time with mum, and we're going to make memories, and we're going to do all of those things. And, yeah, and they just, they just, they just took it in this ride, you know, and, and, and then as things progress, you know, like a hospital bed, you know, is now, is now in the lounge, you know. And it's like if we hadn't done that in the beginning, how do you then do that explain, you know, explain, like, now there's a hospital bed, and why is mum not going to work, and why does mum need a wheelchair and all of those kinds of things? And I said, like, just from the very beginning, just being completely honest and upfront with them, and I think that, I think that just made them better prepared for what was going to happen. Because nothing, nothing was a surprise, you know? And so, yeah, like it was, it was a shock for lots of people, you know, they just didn't. What do you mean? You've told the kids? Well, well, surely you haven't told them everything. It's like they they know everything you know. And I remember someone coming to me. I can't remember. Well, it might have even been, it might have even been Charlie and and I said, Well, what, you know, what have you told the children? I said, Well, told them everything. And I said, like, it's a great thing to do, because if you don't, you know, like, if we like, let's say we just told the bigger kids, because we thought they were able to handle it, yeah, and Bobby didn't tell Taylor, you know, does she potentially have feelings like, Well, I'm not allowed to know important things. So am I actually part of this family? So now she's kind of got this whole dynamic going on, right where I'm not part of the family, but also my mum's really sick, I think, you know, and all of this change and stuff was going on. So, yeah, it's no real deep thought went into it. It was just to us. It was the right thing to do. Yeah, and Kevin, this must be an area that you work in, a space that you work in a lot. I know that we get a lot of inquiries coming through for parents that are maybe trying to figure out, what's your take on this. Is there a right way to tell the kids, or what can we and Can't we tell them? I think there are certainly right and wrong right ways, but there is a lot of you know, so much gray in between, and it's amazing that you that you had that gut instinct, actually, we gotta tell them we, like you said you can, we can't hide it, yeah, and it often comes from that space of, I want to protect the kids, in not telling them, in trying to, you know, sugar coat things for a while, and at the end of the day, it's, it's gonna bite you, yeah, it, it's not going to work out if you do that. And I think one of the things you you said that before, there are, you know, there are different ages. And sometimes with different ages come different developmental, you know, yeah, things that you have to consider. And it's a nine year old and a 16 year old, they're in very different places. And you might go into more details with the 16 and 19 year olds, because they have the brain capacity to understand intricate details, and with younger ones, you might be like, okay, here is the gist of it, but I'll wait for more questions. I'll take your lead. I think that's something that's really important. I'll give you. I'll give you the news. I'll take your lead. I write the emotions that arrive. And you would have seen that that, yeah, and the reactions weren't, you know, the reactions weren't what I expected, you know. And totally, and obviously, you know, we have a blended family, so there's that dynamic as well. Right where the where the two boys, Angela is their step mom, and they've grown up with her, but, and then you've got Jamie and Taylor, that's their mum, you know. And so there was so there was that side of it as well. And then I said, you know, before this happened, if someone had said, how do you think, you know, each child will react to this news, I think, you know, I would have said, What would Taylor? Will Taylor cry? And Taylor will be the one that gets upset, and the others will kind of support her. And it was actually, you know, was actually the other way around, you know. And so I think we kind of have this perception of what we think is going to happen, but actually it was the complete opposite, you know. And Taylor was the, was the supportive one, and, you know, and was there to give everyone cuddles and things like that, whereas I said you would have thought it was the other way around. Yeah. Do you think in our protective mode as well we, we don't give kids credit sometimes for the amount that they get pick up on and understand, yeah, yeah. And it's never coming from a bad place. It's coming from that protection and love totally. But I'm sure, with you not telling Taylor she she was already picking up on what was something's going on, and maybe what's going on in her head, or what she's starting to ruminate on, is completely different to to the actual Max, totally. And like you said, it could be that she then feels like, Oh, I'm not part of this family, you know, I don't deserve to know the big stuff. Or it could be resentment further down the track, like but I wanted to make more memories with mom. You took that away from me, or stuff like that. And I think overall, we live in a death phobic society, right? We don't like to say the D word of someone who slips away or sleeps eternally or whatnot. Say the D word is a very brave thing. And then kids are really kind of they're too young to know. And actually they they know that, they know that that's gonna happen, then do need to know it's part of life. Yeah, it's the way how we do that, and with care and love and honesty and that titrated, gradual stuff, and I think a bit a big part of it. And this is, and this is obviously in hindsight and didn't have a bearing on why we told them what we told them, but in hindsight, we had a three month period, you know, and if we it's nothing, it's absolutely nothing, right? And so if we hadn't told them, what, would they have missed out on? It was hard. You couldn't have hidden it, because Angela was in our house, and that's where she wanted to be, and that's where we wanted her to be by telling them we gave them every opportunity to spend as much time as possible, and and because, and the prime example of that is we have a week on, week off, arrangement with, with, with Jamie, um, Angela's daughter, My stepdaughter. And for the for the first couple of weeks after Angela was diagnosed, she was still, she was still doing that, and while and as Angela's kind of condition deteriorated, Angela would, would say, Where's Jamie? Where's Jamie? I say, well, she's, she's not here, my love, she's, she's at her dad's Okay, where's Jamie, you know, and so, so, and then Jamie made the decision herself to go to her dad and say, Actually, I'm gonna go and stay at Mom's and and she did it. She stayed there for the, you know, for pretty much the whole three month period. If Jamie hadn't known that, you know, like I said before, she wouldn't have been, she wouldn't have had the information to make that decision. And, you know, and then also make a pretty grown up decision to say, Hey, I'm for the next however long I'm I'm going to go and and live here. Yeah, so again, just another benefit of just being completely honest. So I'm wondering, as you're going through the journey with Angela, Her condition is changing. So throughout, I imagine you're having to keep the kids up to date with things, and having to have some probably quite tough and scary conversations with them. Catherine, are there any tips or tools or resources that that you could that you give people to help them through that? I. Yeah, it's such a hard question, right? Because it feels like I always talk from that more theoretical standpoint, and being in the in the midst of it is, it's so much more messy than me looking in from the outside. We could apply a theory Exactly. So here follow these steps, and it's, it's not as simple as that, and you did all you could. And I think there is no perfect way of doing that. I think one of the things that I do is I send through a few resources generally around, what can you tell the kids? How do you speak to the kids, and how do you pick up on the different way people grieve? You know it might be different than you expected. Taylor grieved in her own way. She she took it up on herself to I protect my heart, yeah, and I'm there for others. And that's something that you might not have expected. It's not how grief looks like. Well, that's my next question is, what is you know for kids? How do we know that they're coping okay? Because they're going to respond differently totally, and I think, and you know, the things to look out for are really the extremes. Do they completely lose interest in anything that they had interest in before? Does their mood really plummet to a point that I'm getting really nervous about them? Are they riddled with anxiety and have nightmares all the time, are they becoming really clingy or very avoidant? Are they becoming really angry? Is their behavior regressing? So it's, I think we're looking more for the extremes, because knowing that someone they love so dearly is going to die and not going to be there anymore, can cause, you know, some separation anxiety. It can cause people to be like, Oh, I'm not coping with the world, because it is literally shattering. So it's the real extreme stuff. And that was, and that was, obviously the kids are at different ages, but yeah, the you know, one is kind of moving in from, you know, from a child to kind of pre teen, yeah, others kind of moving into adulthood and and the other two kind of stuck right in the middle of of teenagers. So someone says, you know, someone says to you, what, how are the kids? Which I don't, I don't know how they are at the best of times, you know what I mean, because they're, because they're teenagers, because they're, you know, because they're pre teen, or, you know, and all of that kind of stuff. So and, like, I think they're okay, like, Yeah, but, you know, do I base it on? Oh, they're a bit moody today. They're moody anyway, you know who, you know, and all those fluctuations. So, yeah, I think that was what I looked for as well. Was okay. Is there anything extreme happening, you know? And thankfully, the, thankfully, the there wasn't. But, yeah, you're right. It's so hard to it's so hard to judge, you know, what's normal behavior and what you know, and how are they coping? Because I say to the kids now, how was school good? Yeah, what'd you do? Nothing, you know. And it's like, okay, well, thanks. Thanks for that overwhelming response. And it's, you know, and I would say to I would say to them, especially in the weeks after, you know, how are you? Are you? Are you okay? And, you know, yep, okay. Like, I Yeah, what do you? What do you do with that? But yeah, I think you're looking for those extremes. Is, is really important. Yes, I can imagine the worry, you know they're not talking to me. Well, they're teenagers. They do to me. It's, and even, and even, you know, we it's, it's been over a year and stuff, and it's, and it's still like, Okay, well, how are we doing? What are we, you know, are we? Are we okay with this? And, yeah, it's an everyday thing. And thankfully, you know, touch wood, there's still, you know, I think, I think we're okay, but yeah, you just, you never know what's the impact on you and Angela. Because I imagine you're worried about Angela and caring for her and supporting her. But the two of you must also be have the kids in your mind, I think, and and whether this was what they did or not, I guess I'll never know, but they, they just, they just got on with it, you know, like, in that initial period, they were still going to school, and, you know, we had people coming to drop them off and and things like that. But they just, they just got on with it, you know, and, and they're really good kids anyway, when it comes to helping around the house and things like that. So, like, you know, they do the dishes and stuff after school, and, you know, sorry after dinner. And they, and they, you know, they do housework and stuff like that. And so they just, they just got on with it, you know, and, and I think, you know, without, without asking them, they. They were just like they almost just took on these roles of at the moment, we've got to, we've got to look after them, you know. And Dad's looking after mum and, you know. And Mum needs all the help and support that she can get. So whatever we can do is, is what we're going to do. And so you almost, you always didn't worry about them, you know, they just, they just kept going and I, and I think again, because they knew everything, you know, we haven't, we haven't touched on it before, but Angela, Angela didn't want us to see her suffer. So she she wanted to go through the assisted dying process. The kids knew about that, you know, that they you know. We sat them down again and we said, hey, this is what mum's decided, you know. And this is what that means. And so, you know, like, and you know, do you have any questions about that and and all of that kind of stuff, like, nothing was was hidden from them, you know. And ultimately, you know, she didn't, she didn't go through with the assisted diet process. But they, but they, but they knew everything you know and and when it you know when. So when it came time to for when it came time for Angela passing away, like, I think, potentially, that lessened the that that blow you know, of you know, it wasn't, it wasn't a surprise, you know, it was okay. That's what we expected. Because we've known all the way along that this is what was going to happen, you know. And we, you know, one of the last times we went to the oncologist and he said, I'm really sorry, guys, it's, it's probably six months. Now, it's not 18 months. Guys that, you know, this is the, this is the bad news, you know. And you know, it's not what we wanted. But this is, you know, this is what's happening, you know. And so they were, again, they were just part of it the whole way, yeah, Catherine, there must be situations you've been in where it's not quite so open. How do you navigate that in your role? I think for me, it's it's, well, look at the end of the day, what I sometimes think, as a professional, certainly as a person myself, is it's not as important as where the family is at. So if a family decides, for whatever reason, we are not in a position where we want to voice that this is about life and death here and how the story is going to unfold, it's not my it's not my role to say you are wrong in doing this. I will roll with that. I might speak to. You know, what else can you say when someone you know, when they deteriorate, and when are you ready to tell them? I haven't fully had that conversation yet. That hasn't really I've had that with adults, but not when there were children involved. But it is complicated, because, like you said, at some point you cannot hide it anymore. Yeah, and then what anymore? But sometimes people, you know in I'm thinking about Asian cultures, or some cultures you just you don't talk about death, it is within their cultural framing to to not name that, to to protect people from that. And I know that I have my own framing and my own ideas around that. But at the end of the day, I have to respect what, how people, you know, live their life and enroll with that, enroll with theirs. You can totally and I'm also thinking, as you talked about, you know, they got on with it. They they did this stuff at home. I think that's something that is really important. Like their world is falling apart, they will find themselves in a world that they never anticipated. And to keep some sort of routine going, the more routine you can keep going. That sense of normalcy is really important, and that can sometimes be like, what do we tell the schools? What do we tell their friends? And sometimes it's like, actually, let's keep that for now, because I want to go to school and feel like I'm just me. Nobody knows. Nobody looks at me as that kid. Yeah? And for others, it's like, oh, it's really important for me that teachers or my class knows so but it feels like they had that sense of normalcy. They were still going to school. Yeah, there is still dishes. Thank you very much. Yeah, you know that that can feel like, ah, the house is still stable enough. It something is still holding me enough, in your throat that's falling apart, yeah, and it's and, and, like, I remember when I was 11, and my and my grandmother passed away. Me too and wouldn't but. No one talked about it, yeah, you know, like, and, yeah. And it wasn't a cultural thing or anything like that. And, but it was just to your point earlier, you don't talk about, you don't talk about death and stuff like that. And I remember, and maybe, maybe this is why I ended up telling them. But I remember we got, we got shipped off, you know, we got shipped off to my mum's friend's house for two weeks. You know, we were like, Why are we here? Do you know what I mean? And they don't understand, yeah, and I think, and then we, we got taken to the hospital to why are we going to the hospital? Oh, we're going to see Grandma. Why is grandma in the hospital? And then going to going to see her. And this was the first person I'd ever you know, had had passed away, and I walk into a hotel, hotel, hospital room, sorry. And, you know, and my, my grandmother, doesn't have any here, and I'm like, hang on a minute. I found out you're in hospital 20 minutes ago, and now you don't have any here. And that's that's always sat with me, and then, and then we never saw her again, because we were, you know, it was, we were shipped off, and, you know, and that will, you know, that that will always stick with me. So, so we missed out on those, you know, on those moments Angela being sick was, was over Christmas, and things like that. So it made, you know, what moments we did get. It made them special, and it made you appreciate them more. And I think, you know, from the kids side of things as well, because they just knew, you know, yeah. And, like you said, it's each their own of these culture things, yeah and stuff like that. But you know, I, when I look back, I just think we, we just made the right choice, you know, to just tell them anything and everything. And I think, you know, and that carried on after she, after she passed away, and you know, we, we had, you know, we had Angela at home and things like that. And, like I said, it just listened the blow, you know, that it didn't, it didn't make them, you know, any easier. I guess it's just, you know, it just lessened that impact of, yeah, well, what the hell just happened? Yeah, yeah. They were involved. They were they were allowed to be a part of it, yeah, yeah, yeah, absolutely. And part of that is, I think also making memories. Like you said, you know, I miss out on those moments with grandma. I would have loved to make some memories with you, but I can't, and I've done some of that in the past, I remember one session where we sat around the kitchen table, 10 of us, and the granddad, in that case was, you know, the one with the terminal diagnosis, and they were all the grandchildren and some adults. And we made canvases together and talked about the there's a beautiful book the invisible string, that I often recommend, you know, the invisible string that will still be there even once he's died. And it was really special to have that time of sitting together and or making hand prints and putting them on canvases. And the young person can go back to, ah, there is grandmas, moms, dads, whatever, handprint still there, you know, to to make memories like that. Yeah, and I think, and I think this, we've got loads of nieces and nephews and, you know, no, I don't think they were told as much detail, but, but they still knew that only Angela sick. Now, Angela adores all of them like, you know, for the first Christmas after she passed away, I was like, I'm gonna get them something I'm gonna, you know, to that they can keep. And so I thought, I'm going to get them all, a photo of Angela with them by themselves. I don't have to look very far. There was just all of these photos of her with with every single niece and nephew. There's, I'm pretty sure there's, like 14 or 15 of them and but there's, there's a photo of them, and you can just see in these photos, how much she loves them and how much they love her, but you know, they would, they would come over and they would, you know, and they would give her, they would give her hugs, and you know she's in a hospital bed, and you know, and and she's not, you know, She's obviously not the auntie angel that they know. And so, again, you know, some of them are a lot younger, so they, you know, there wasn't great detail, I'm sure, but they were still aware of what was, you know, what was going on. It wasn't, it wasn't hidden from them either. Yeah, the other question I have, I hear a lot around. But you know, if we're going to be open and honest with the kids, the terminology that we use, yeah, because we do tend to maybe soften things for kids, mum's gone somewhere else, mum's asleep. What's your thoughts on that? Oh, I I get very icky around the term of sleep, yeah, a lot of people still say that. And it can come, you know, with with a real risk that kids, at the extreme end, then feel like, Oh, what if I go to sleep? Am I never gonna wake up again? Or, what if you go to sleep? Yeah, you're not gonna wake up again. So you kind of have to stay with a as hard as it is use the correct terminology at a child appropriate level, yeah, death, they understand. They've always seen an animal die outside somewhere. They've they've seen dead animals or plants die, things die, but explaining what is happening medically, I think that terminology, you have to be careful to not make it too complicated. But you know that invitation, let's say that someone's died, yeah, that there is a death, that there is a funeral, a celebration of life, and to normalize that stuff, yeah, I think that's really important. Yeah. I liked your your reflection earlier around inviting them to ask questions too, all the time so you can short answers. Yeah, wait, yeah, answer. Wait, it's not one conversation. It's, it's, as you would know, it's, it's a series of conversations, as they process, as they make sense of what's going on. Yeah? Is that something that happened? I'm gonna guess, maybe more with Taylor. No again, like she just, she just kind of got on with it, and she just, you know, she just kind of almost just accepted what we were, what we were saying to her and and, you know, in terms of terminology, you know, we weren't using terms like glioblastoma and stuff like that, you know. But you know, it was finding that balance between using terms that she can understand without, you know, without babying it down, or on the on the flip side of that, over complicating it and say, Well, do you know what a glioblastoma is, and, you know, and all that kind of stuff at that, you know, it was, it was just kept really simple, and, you know, and at the end, I would just say, you know, has anyone got any questions? And, you know, and you know, so they were kind of, you know, okay, well, what will happen next kind of thing and, and stuff like that. But because we just kept it really simple, because I didn't understand it, you know, like, up until she got diagnosed, I didn't know what a glioblastoma was, you know, so I had to keep it simple for myself as well. It was just kept really straightforward. And, you know, if they did have any questions, and again, it's asking. They don't like to, it's not cool to put your hand up at school or anything like that, right? So it was kind of, Have we got any questions? Generally, it was, you know, unless it was a really obvious one, like, Okay, well, what happens next? But, you know, there would be other times where, you know, they might just come along and be like, hey, what? What is? What is that for? You know, why is this happening, or whatever? So, yeah, and it's so hard, hey, because you just finding out, you're trying to understand it. You're writing your own emotions. You've never walked this journey before, and then you're trying to, how do I explain that to the kids? Yeah, it's so hard, because it's not like, Oh, you can just bracket yourself and you're still in it. And it was the same, like, throughout the whole throughout the whole journey. And that's why, like, when we would have, like, when we had our first meeting with hospice, it was four people there, you know, include about, you know, plus Angela and and that kind of happened every time we had an interaction with someone else, or a doctor or whatever, because, I because you're being told this kind of, you're being told this information that you know, and it's pretty traumatic at the time, you don't take it all in. You take you take bits you know, and then, and the good thing was, is that when we had, we had a kind of group of people, and we would all take bits and put all those bits together, you kind of got the whole story at the end. Because it is just, yeah, it's, it's overwhelming. And yeah, I think, you know, I remember going when we got given the diagnosis by the brain surgeon that was given to us in technical terms, you know. And it was like, hang on a minute. What is that talking about, you know? And then it's like, oh, okay, this and so, yeah, it was very conscious of that, talking to the kids, keeping it simple, you. But also making sure that you know it's actually meaningful, for lack of a better term, yeah, yeah, yeah. What about showing emotions? Because there must have been times Aaron, where you were really feeling it for yourself. Is it okay to show those emotions, or do we need to be the strong parent that holds everything together? That's, yeah, look, I It's, that's, that's a hard one, because on one point, I'm like, 100% you, you know, like, I wanted them to know that it was that it was okay for them to cry, and it was okay for them to be upset. But I would go to my bedroom, and I would shut the door, and I would and I would cry, and then, and then I would come out. But the thing was, every time I came out of the door, guess who was waiting for me? Taylor. Taylor was there every time. And then, you know, almost by default, became this, like, Dad's gone to his bedroom and shut the door. He's gonna, he's gonna need me in a minute. So she would, you know, she would just come up and she would wait by the door. And, yeah, but so I, you know, like it wasn't a case. I didn't want to hide it from them, but it was like, I actually just need a minute, you know, you're Yeah, yeah. And it's not like, I wouldn't then come out of the room and be like, right, okay, well, I don't, well, you know, and try and carry on the, you know, the day, like it was obvious that I, you know, that I was upset. And I think there was at first Christmas Jamie. Jamie got Taylor, and I gave the Taylor, and I these teddy bears. And I was like, oh, it's weird. That's nice. Okay, he got us a teddy bear and and then she said, press it. Oh, gosh, so I press my teddy bear. Oh, and the teddy bear is Angela's voice, telling, like saying, I love you. That was it like no time to this? No, I'm not kind of the bedroom, like just, you know, and there was, and then Taylor presses her one, and her one says, Taylor, I love you. I don't know anyone that's holding up to that, you know, I don't care who you are. And, you know, like, again, I wasn't gonna hide that, Deb. And then there was lots around that, right? It was like, That is the most amazing, thoughtful gift ever that's come from a 17 year old girl. And, you know, traditionally, teenagers don't think about anybody but themselves. And she's gone and she's she hasn't, she hasn't just bought these beers and put the recording in. She has gone and got all the individual bits, and she's un sewed the back of the beer, and she's put the voice thing in it, and she's done put all of this effort into these, into these things and and like, it was just like, this is the most amazing thing, you know. So, yeah, it wasn't a case of hiding it. It was, you know, sometimes you just, actually just need a minute. But yeah, 100% and you know, the textbooks says that you should, it's good if you show your emotions, but please don't show too much of your emotions. So it's like, but how do you do that in reality? So it is good to show, hey, I need a minute, and I can have that in front of you. Like, it's okay to see your dad is also having a cry and ah, so it might be okay to cry, and at the same time, they can then become really protective of their own, like, Oh, if that goes too far, are you enough to hold my emotions? And then they can really withdraw. And sometimes it's easier for them to talk to someone else be it doesn't have to be a therapist. It can be someone else in the family or another adult that they can go to when they feel like, oh, you're a pretender at the moment, I have someone else. So it's, again, it's such a tightrope balance, and it's really, and that's really interesting that you touch on that, because that was a really big thing for me, because, because I was, you know, because I was so emotional. I what I didn't want was the kids to then be like, well, we can't say anything, and we can't do anything. What does we don't want dad to get upset and, you know, and all that kind of stuff, and then them suppress their feelings, you know? And, yeah, you know. So you had to be very, very mindful of that. So, you know, it's that finding that, trying to find a balance possible, yeah, 100% and then. The flip side of that is, you know, and there was a couple of times where, you know, I would find Taylor in her room and she would be crying, I'm not, I'm not not crying, if she's crying, you know what I mean. And so then she's like, Oh, I cried. And he cried again. I don't really want him to cry. And it's, you know, it just became this, like, this whole complex thing. It was like, Oh, what do we do here? Yeah, is it recognizing as well their kids, they're facing that they're about to lose their mum? Yeah, it's a crap time, you know, and let's acknowledge that and not try to sweep it under or make it okay, because it's it's not okay. It's not okay. And you can find these joyful, beautiful, treasured moments in this awful period, but at the end of the day, it's okay to have your moments. And for you, Aaron, maybe the kids are learning that. You know he's emotional, but he's this is his way of managing. Goes to his room, and he comes out, and that's okay as well. And whatever my way is of dealing with it is okay as well. And it's not an awful period, right? Yeah, it's awful full stop. And especially for kids, as they grow older, they finish school, they get into serious relationships, they might become a parent themselves. They graduate from uni or whatnot. So all these milestones, it where's mom? So it is. It's an ongoing journey. It's not just an episode or an IT. It's awful and it's crap. You do a little bit of work around sort of legacy. Is that something that maybe can can can help with that, totally, totally like stuff like recording voice, having, having, writing letters. I've supported parents. I remember one parent who was also someone with a global stowa in her 20s writing letters for her young, young son because she wasn't able to do the writing as much anymore canvases or other creative things, memory boxes. It's a really beautiful way of doing that together, or afterwards, to come together as a family as you are now. Yeah, yeah. And, and I think carrying on from that like Angela is. Angela is, is is everywhere in our in our house, awesome. We have, we have photos of her above, above her chair where she sits. And Taylor has photos of her on, on the on her wall in her room, Jamie went out herself, and Jamie has one side of her room is just all of these photos of Angela all framed, all put on proper frames. And so, you know, Angela's Ashes are in a woven basket, and that's there in the lounge and, you know. And so she's everywhere, yeah, and Taylor and I have every night since Angela passed away, and when she goes to school, we have a thing where we don't say goodbye anymore. We say, See you later, and so and so, when I tuck when I tuck her in at night, say, love you, good night, see you later. And then she says, love you, good night, see you later, Mama. And we, we blow kisses to Angela's photos, lovely, you know. And that if we don't do that, oh boy, you know, like if I get in trouble for that every morning, you know the you have to, you have to say it then, oh, sorry, yep, no, you're right, you know. And so, so she, she is everywhere, and we, you know. And, and while she's not here physically, it's definitely here, you know, emotionally. And we don't know what lies beyond anyway, right? We don't know. And it's so beautiful to do, you know, continue the relationship in that way. Yeah, and one of and touching on that, one of the, one of the really, really lovely things is, you know, the the nieces and nephews, they they all have their own little story about where, where, aunty Andrews, you know. And so, as scarlet, who is, who is for it, Arnie Andrew is the one that brings the moon up, you know. And so they go out and, you know, and they'll see the moon, honey. And just bought them, yeah, and, you know. And you know, and they've all got their own little story about, you know, where is only ant now, that's really nice. Yeah, I think we'll wrap it up there. Catherine, thank you so much for joining us today. Your insight has been so, so helpful. I'm sure that this is a very common issue and questions, these questions must come up so much we are looking at how we can support our children through these kind of circumstances. Join us next episode where we talk about the future on Angela's terms. Thanks for joining us. You.