Episode Four - The Future on Angela's Terms

In this episode, Aron opens up about honouring Angela’s care wishes and planning her farewell. Joined by Trish Fleming, Social Worker and Community Liaison Manager at Hospice West Auckland, they unpack what it really means to take control of future care decisions. From navigating difficult conversations to finding peace of mind in clear choices, this discussion offers practical and gentle guidance for anyone facing life’s toughest moments.

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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 back to Episode Four. Last episode, we explored how Aaron and Angela supported their children and their families through this journey. And this week, we're going to talk about future care planning, how you had discussions and worked through all the things you needed to work through at this part of your journey. Today, we are joined by Trish Fleming, who is one of our social workers by trade, but you also have multiple hats in this workplace. Welcome Trish, thank you for joining us. Thanks for inviting me, and thanks for having me be part of this story tonight. Yeah, what is your title here? It's community engagement. And as Esther said, as you said, I'm a social worker, and I've been in the palliative care space for nearly 20 years talking with people about the myriad of things that need to be considered when families are facing a journey such as you did with enduring your children. Yeah, yeah. And Trish, you've been with hospice West Auckland for a number of years, and had your role as a social worker and then worked into these different roles as well, haven't you? Yeah, so helping people to think about the things and put some plans in place, things like advance care planning, perhaps things like wills, things like what our future goals and wishes are going to be, you know, and thinking of all of that from a holistic sense, and guiding people to walk through that process, not things that people generally want to be thinking about. A No, yeah, and, and there's a lot of stuff comes up, yeah, yeah, yeah, there's, and you're exactly right, and it's, and it's stuff that you you don't want to think about. But was there stuff you've never thought about before? Like, you know, there's so many people out there that, you know they, they know that you should have a will, yeah, but no idea how to, how to get one, or what's actually involved in things like that. And then, like you said, before I can advance care plan. Like, what is that? What is that, you know? Like, what does that even mean? Yeah, so there was lots of stuff that, you know, and especially for Andrew and I would like with a blended family, you know, in wills and things like that. Like, what? What happens with all of that stuff? Yeah, it's a it's a lot that's a lot to take on while this other massive thing is kind of happening as well. It's like, Oh, great. So we're dealing, you know, we're dealing with, with this illness and the outcome of that. And then, hey, also, there's a lot of admin that you, you know, that that we need you to kind of manage as well. So yeah, and a lot of the admin is things that you, like you said, you haven't thought about, but also you might not want to think about at the time when you're going through it, but it's equally just as important. Yeah, Trish, can you talk to us? You've mentioned, Aaron, what a Advance Care you've mentioned the word advanced care plan. What on earth is that, yeah, look, it's a holistic document that helps a person to think about what they would like to have happen for their care as their illness progresses, and not something that we want to sit it's a confronting thing to sit down and do, right? I do, I have had, have developed a respect for the process more than the outcome. I think that actually being together and being able to have the confronting conversations, but also to share this is what I really wish for, which might be a surprise sometimes, right? Yeah, and, and to go through that process and almost journey together. A little lady I met recently in a care home was telling me that she didn't want to sit down and do that. Why did you give me that book? But then she said she's been getting up each morning, just in the quiet before the care home gets busy. She has a cup of tea, and she has a little bit more of a look and a little bit more of a think. And then when her daughter comes to visit in the weekend, she shares, you know, where she's got to So, yeah, there is a thing about the process, yeah, and I mean, like, I mean, it was confronting enough for me. And. And, and, you know, I wasn't the one with the weird, terminal illness, so can only imagine, you know what, what it was like for Angela or anyone in that kind of situation, because you, you're kind of pre empting this, this future that you know doesn't have a good outcome. Yeah, you know, you know, you don't know when that is, but you're, you know, you're kind of expressing your your final wishes. And I, I remember having a conversation with Angela very, very early on. And I think we just finished watching afterlife, the Ricky Gervais series were amazing. And in a lot of that story is his, his wife, obviously has has cancer. But before she passes away, she's made him videos, and she's she's talking to him, and you know about what, what she wants for him, and all of those kinds of things. And so Angela and I had watched that long before her her diagnosis, but when it kind of came around, I you have to be careful how you bring this up, you know, because you don't want to be like, hey, like, you're going to die soon. Like, you know, let's talk about this, yeah, so, you know. So I kind of said to her, like, you know, is there, is there anything that you'd like to do for the, you know, for the kids, for me, you'll, you know, for anybody. And you know, we, we've seen the videos that that Ricky Gervais, his wife, made, and she said that that's that. That's a great idea. I would like to do that. And so into that's cool. We'll, we'll leave that there. And you just let me know, you know when, where you want to, kind of when you want to do that. And then as it kind of progressed, and as I could kind of see, you know that actually things are changing. And I and I said to her again, I said, Have you, have you had a chance to think about what you want to do and what you want to what you want to say, especially because the, you know, the Taylor, our youngest, you know, was nine at the at the time, so you know what, what do you want to say? And, and I think, you know, she did lots of things, you know, funeral planning and things like that were, you know, like the, I would struggle to do those things, but I think actually having to talk about, you know, and make a video to say goodbye, you know, which is what she's doing, yeah, you know, there she found, she found that really, really hard. And then obviously the decline kind of limited her and what she and she wasn't able to do that, but just yeah, just to be confronted with that and be like, I'm saying goodbye in these, you know, and even with the care plan, like I'm writing down all the things that I need to happen for, and in some cases, that I'm not even going To be here for you know, and that that's, yeah, that's, that's full on, yeah, I can imagine, on one hand, it's really confronting to think and address the inevitable, but on the other hand, it could bring you a sense of empowerment being able to have that say, I mean, what's important to you what matters, what you would and wouldn't like, maybe some peace of mind for Angela's family as well, in terms of you being able to see what she's written and know, yep, under and the right thing, because Angela's written that this is important to me, and I think that's what that lovely lady was saying in the care home, that you Know, she's able to put her voice into that and, and, and have her say about what she wants to have happen. There's also been other situations where I've worked with families that there's been quite a difference of opinion. And so the advanced care plan or, and it doesn't mean it doesn't need to be that document, right? And, and you had advanced care planning conversations with her your own way, right? Yeah, because you felt it was important to elicit from her what she wanted so that you could support that. And I think it does help people. If there is a difference of opinion or misunderstandings, it's like, Oh, yeah. Oh, that's what mum wants to have happy, yeah, yeah, yeah. And so the big, the big thing for us, well, the big thing for Angela, actually, is, was when it and especially when it came to, when it came to her funeral, right? So we were very lucky that a very good friend of ours is a funeral director, so we were able to approach her and have some conversations with her very early on and and this was all. This was guided by Angela and her, and so she would have those discussions. And when, when people found out that she was that she was having those discussions and she was planning her funeral, some people were just like, we. What are you doing? Yeah, why are you doing that you should be, you should be living life. You should be. And she'd be. And I remember being part of one of those conversations, and she said to the person, she said, Hey, like, this is my life. This is my life now, like, and, and what am I going to do? Not plan any of this. And and leave Aaron, who now has, you know, four kids, and has just lost his wife. I'm gonna let it sort it out. Like, how, how was that fear, right? And so, so that, that was her, that was her driving goal. Did she want to do it? Maybe not right. Because, again, like it's quite confronting, but the but the outcome of that, and for me as a for me as a person, I was so conscious of, of making sure that everything was right and the way and everything was the way that she wanted it to be, that like it was one of the best things that that she did for us, and not only for her, because literally, everything that happened at her funeral was what Angela wanted, the music the you know, we one of her favorite karaoke songs was Adele. We sang Adele, you know, the whole congregation, I guess you call it, whatever you call it, sang a Deb, awkwardly at first, but then, you know, got into it. But that's what she wanted. And, you know, and so that I remember, you know, I thought I had it all, you know, like what she was, you know, she chose what she was dressed in. Now, I wouldn't have chosen that for her, but that's what she wanted. And so, like, I was like, Oh, that's good, you know. Okay, yeah, that's that. That's that sorted. And I remember getting to she was at the she was she'd passed away, and she was at the funeral home and and our funeral director said, well, Aaron, what, what lipstick Do you want? Do you what color lipstick Do you want her to wear? No idea, she didn't write that. She didn't she didn't write that down. And so that was me going, what if I choose the wrong one? What if? What am I going to do? You know, in this state of, you know, it's a few days after she's she's passed away, not wanting to get it wrong, not wanting to get it wrong, you know, but, but she had, like I said, the music, the just, you know, the casket. Now she'd always said, I just want a plain pine casket. I want all my friends and family and all the kids to, you know, paint their hands and stamp their hands on it and write a message. So that's what we did. And and that meant that for kind of three, four days after she passed away, our house was just full of of people that just wanted to come and be part of that, be part of it. So you had, you know. So there was kind of almost this, this support during this really awful time, you know, and so, so we got all of those benefits, but that was perhaps because that's what she wanted to, you know, and she didn't, she didn't want to see the casket. So when we went to, you know, when we went to to see where she was, was going to to lie, we went and looked at the it was called the cottage. And we went there when, when she was still here, and she was like, Yeah, this is nice, and I'm okay with that. And then remember the the funeral director saying to us, do you want to see the casket? She was like, nope, yeah. But this is what I want. And and after that, then we went to the we went to the, the chapel, let me call it. We went there. And I said to do you? Do you want to come inside? Nope, you know. So she did have, she did have boundaries of, you know, like, No, I don't need to see that, but this is where I want it. This is how I want it to pan out. But I don't want to, but I don't want to see it. But was it for you as Angela's husband, going through that once you passed away, and having almost like a road map, a road map that she put together for you, right? Just all of this, there was just no once there was no stress, because obviously, you still, you know, you still have to execute her plan, and you still want it to be right. But I don't have to think about it. Wasn't a whole lot of choices, because she'd made to she'd she'd done it. So, you know, I had, she together, we had come up with all the playlists. So when you know, and you know, we both love music, so she had chosen songs and when they were going to happen and things like that, you know, there was a there was there was photo slide shows, and she'd been a part of that, you know, she, she had had, you know. The eulogy had had been read to her so she knew what was going to be said. I read my speech to her. I had a quiet before everyone got up in the morning, and I went and sat with her, and I said, Do you want do you want to hear what I'm going to say? And it's one of the hardest things, yeah, ever to do, but, but I wanted her, I wanted her to know, to know, yeah, and, you know, down the track, I've kind of thought about it now, and I always think, like, why don't we do it when they're here? Do you know what I mean, like this, this celebration that they that they can be a part of, like, I think you know, and get to hear this, the the amazing tributes that people, they didn't, people know. How would they are to say, Yeah, and we do it after they're gone, yeah? But no, it was a it was a massive relief. And I think ultimately, she did that, you know, said, like, it's confronting, you know, and that's where she had her limits. No, I don't want to see the casket that I'm going to be in, but this is, you know, this is, I'm taking you this far. I'm taking you this far, but I'm but ultimately, I think she was, she was doing it for me, you know, because she knew that there was already enough going on. I don't you know if I can plan this and also have it the way I want it to be. Then, that's then, that's what I'll do. Yeah, I'm thinking as well around it sounds like you and Angela were able to have these open conversations and talk as difficult and confronting as they were. You had the opportunity to do that. Trish, I imagine there are lots of scenarios where maybe it's not as open a conversation, or there are differing opinions. Yeah. How do you manage that when you're going in to support whanau? I mean, that's an excellent question, particularly for those people who may not have someone to represent them, but but also, like Aaron, you mentioned you have a blended family. You and Angela, some people have blended families where there is a lot of difference of opinion, and so being able to not necessarily get things down in a document, but at least facilitate conversations where you can represent the voice of the person doesn't always go according to plan. But you know, another situation Esther that you know it needs to be talked about, really, is if somebody hasn't got capacity for their own decision making, you know, and towards the end of somebody's life from illness, they usually will lose that ability. And so it is. It's desirable to have someone that you trust to represent your wishes and to speak for you really. And often, people will do that as an EPA, enduring power of attorney, and it would be with that person that you would share your advanced care plan if you'd completed it, or at least what you've written on the back of the survey. What it is that you want, the conversations the back of the survey, yeah, this is what I want. This is what's important. Yeah. And we, you know, we were before this all happened, we were those people that were like, oh yeah, we kind of have an idea of what's going to happen, you know. Like, you know, what will happen with the kids will, you know? Like, they're probably going to be, you know, they're probably going to be adult. And what does it really matter? And then when she got, when she got diagnosed, it was like, Oh no, actually, what are we? Can we? What are we going to do? And so we kind of had the bones of of a will and, and so these were all of the, you know, I said the admin things that now we had to go and get wills, and we had to go and we had to go and get letters signed that said, Angela is of sound mind to make these decisions. And while we didn't know it at the time, the clock was ticking, right? Because it was only going to be a few more weeks from when that was done, that actually she wasn't going to be able to do that. You know, not that she wasn't. It was sound mind, but she she wasn't able to communicate or in medications and people's thinking and frailty and fatigue and and all sorts of things, you know. And the the added complication for Angela was the time frame, yeah, and how things progressed for her, yeah. And it makes me think around, you know, I, I personally should be making these plans, or at least thinking about the and setting up a power of attorney now so that, if God forbid that happens, we've got things set up. Yeah, that did Angela have a power of attorney? Yep, yep. So all of that was set up. So I was, I was power of attorney, and I. You know, and thankfully, like it all just went, you know, according to plan, and everything is kind of carrying on as, you know, as it should be. We're quite lucky. We didn't have those, you know, that does the bumps and the disagreements, and, you know, this is mine, and that's yours, and all of those kinds of things. So we don't, you know, make it. We kind of don't have that. And I think that's probably due to the age we are and, you know, but, but, yeah, so, so we had to go through all of that. We're very lucky that, that we have a family member that is, that is a lawyer, so we were able to kind of get that stuff done quite, quite quickly, because that's a really complex minefield for people, and it's pretty anxiety invoking, well also because, because we have a family member who is our who is our lawyer, they were able to say, hey, you need to do this. And you need to do this otherwise, if that was just me and Angela by ourselves, without that, you know, inside knowledge, I guess those things wouldn't have happened, who just wouldn't have known and and again, they're kind of things that get because Angela's illness is, yeah, is the core focus. Those things would have just gone, forgotten about. So we were, we were really lucky that there was, we had someone that was able to go, hey guys, we need to do this. You know the sound of the document to say that she's of sound mind, I would never have thought of that, you know. And so actually, no, we need to do this, and we need to do this. And, you know, so we were really, really lucky there. Obviously, not everyone is, is that lucky? But the other side of it is people, you just don't, you don't know what you don't know, no, and it is, you know, when you sort of map out that kind of legal, medical, financial journey, admin requirements, I think you talked about, you know, in the first instance, Aaron, there's a lot. There is a lot to navigate and and people don't know because they're not, you know, they don't need to know when they don't need to know exactly. And we had, you know, we had some, I don't know if they're complexities, but Angela, very early on, wanted to donate. She wanted to donate her brain, as you know, she wanted to donate organs and things like that. She didn't get to, because it's still quite a complex process, but we had to manage that as well and get our heads around, okay, well, how does that happen? Who, you know, who do you contact, and and all of those kinds of things. So, yeah, it just becomes like a an administrative minefield, and, you know, you're trying to respect this person's wish is, and, and do the best that you can for them. Well, you know, these two big trains are kind of rumbling on. There's the admin side and, and we've talked before about the normal life carrying on as well. So you're going left blows in there. And, yeah, it's, it's very formative. Comes that whole another facet of this really complicated care, medical family light and how you're adjusting is you keep moving along the trains, right? Yeah, with that continual change. Aaron, we've when we talked with Charlie, we talked about that kind of care, planning and finding out in Charlie's first few visits, what was important to Angela, what was important to you, and how can you know we make sure that we help with that, but also for you to know what's important to Angela, and I think that relates quite closely to the advanced care plan. All those discussions around you know, what does Angela want if something changes to her medically, and does she want to go to hospital? Does she want to remain at home and move to comfort? Cares? Did you have those conversations with Angela and how did they go? So I think when it came to, when it came to practical, the practical side of things, Angela was very, was very open. And, you know, and you know, talking about her funeral and things like that, she was very open about persons, the emotion sides, and talking about the kids and things, yeah, that she found quite hard. But in terms of practical stuff, let's talk about that, because that needs to, you know, that needs to be talked about. And so, you know, her big thing was, is I want, I want to be looked after at home. Yeah, I don't. I don't want to go to hospital and, you know, and from my point of view, that was, that was, that was just never an option, you know. And I never thought of an alternative. Do you know what I mean? Like, it was like, well, she'll just, she'll just be here, you know? And I think, you know, when we, we talked with Charlie and, and I said, like, I just, you kind of, kind of shift from husband mode to carer mode. And, and this is what I did. There was no like, Okay, well, what? Happens later on, when, you know, if she gets really, really bad, like, and you can't look after her, that just wasn't even a, just wasn't even a thought. It was like, she wants to stay at home, that that's what's going to happen. And I'll do everything that I can to make sure that, then, you know, to make sure that that happens. But yeah, we were pretty, you know, she was pretty, like I said, when it comes to practical conversations about what do I want and how do I want things to happen, you know, there was, there was no issues, you know. And she was more than happy to more than happy is probably not the right term, but you know, she was comfortable having those conversations, which, you know, for me, like I can, like, just can't thank her enough for, you know, for that, because it, you know, I'm a kind of logistics, kind of brain type person where I just, I need, we've got a plan, and we've got these steps, and we're going to go through them all. And, you know who, recognizing that and being able to go, this is what, this is what I want you to do, and this is what we can this is what I need you to do for me was, you know, was massive, and people often do talk about that. It's like, you know, thank you, Mum, you left us a plan. Thank you, you know, whoever, yeah, for, for letting us know what you want, giving us a plan. It's good. We use that term roadmap before, you know, steering you through. I think it's, you know, the comment that you made about much more difficult to have done, perhaps the legacy stuff for the kids, for the future. And you know, that's wonderful that you had that conversation about that. Yeah, yeah, yeah, yeah. In the in the end, we didn't, we didn't get videos, but we Cherie was actually meant to sit down with her. Unfortunately, when they were about to do it, Sheree got covered and had to go home. So a friend of mine sat with Angela for a good couple of hours, and and and wrote cards, notes for the for the children. Angela obviously couldn't write and and my friend had to kind of decipher what she was trying to communicate. But we, you know, but we do have, we have cards. So the so I have a card, my boys, Angela's stepsons, they each have a card. And the girls have and they they had a next birthday card. They've got a 21st card. They've got a first baby card, they've got a marriage a first wedding card, and things like that. And they're thankfully to Charlie, they're locked away in a fireproof box because I told Charlie about these cards, and she said, where are they? And I said, I've just got them at home in a plastic bag. She said, What if the house catches fine. I was like, Well, great. Chad, yeah, I hadn't thought about that. So I went straight away and bought this fireproof box, and so now they sit in there, but nurses think of everything, yeah, really, um, you know, they look, I like to say that problem focus, because they look for what could potentially go wrong, and then put the solution. And, yeah, yeah, so, so, yeah, I am very thankful that she, the timing was a little off, but, you know, but that's okay, but, yeah, but the girls and the boys and myself now have, you know, we now have these, these cards of, you know, that Angela has, has written for us. So that was, you know, so that, again, she's, she's written these four events that she's not here for, you know, and she knows that she's not going so to to write those things must have just been incredibly hard, yeah, but, but all so there must have been something for her about this is what I've got to give now for the Future, and it will be a lasting gift day, yeah, yeah, absolutely. But a sweet moment, yeah, yeah, but a sweet moment. And another facet, in the midst of all of this, I'm thinking, Angela's in her 40s. You're both working professionals raising a young family. All of a sudden, Angela can't work anymore? Yeah, you're probably having to think about, you know, pulling back from work or giving up so that you can care from her. So how do you manage suddenly going from potentially two incomes to whatever happened next? So I think, I think I've mentioned previously, so obviously, we went to the hospital that that day, where we very first found out that she had a mass in her brain. That morning she was getting ready for work because she never went to work again from that day on, you know. And early on, there were conversations of, oh, well, you know, two weeks after, after the biopsy. Well, you know, you could probably go back part time, and, you know, after two weeks, and we'll see how you go. But no, she, she never went back from, from from that day. I didn't go back for three and a half months. And. Yeah, I and I said this to Charlie when we spoke to her, what, what my my work, basically just said, may you you do what you need to do, and we're here for you, and we'll just see you when we see you, and, you know, like, and to my to my boss and his boss, that's, you know, it's probably not that big a deal. You know, it didn't take a lot of kind of thought. They just, you know, they might have signed a piece of paper to say, yep, that's okay, but, but to us, and I remember getting the phone call from, from my boss's boss, to say, Look, you will see you when we see you. And and I remembered just wanting to, and I said this to Charlie again, like I just wanted to take the feeling that that was and just give it to him, yeah, just be like, This is what, this is what that means to us, yeah. And yet what, and what that meant was that she didn't have to go to hospital, she didn't have to go somewhere else. We didn't have to we didn't have to get kind of carers to look after her and things like that, because it meant that I didn't have to worry about money or or going to work, or any of those things she could her and the kids could just be my focus. And, you know, and I'll forever be be thankful to, you know, to those, to those goals for that you know, as it's a wonderful way that employers and organizations can contribute like you've described, that you wanted to just make him know what that feeling was, how much it meant, you know, that's such a significant way that they can provide support. Yeah, I'm not needing to do very much. Yeah, 100% Yeah. And at the time, like, it's not like I I'd been there for years, you know, I think I'd been there 18 months, you know. So in the grand scheme of things, did they owe me that not, not at all good on them, you know, but again, just like a small gesture that actually had just this wide ranging impact, yeah, that allowed us to spend, you know, in the grand scheme of things, was a very small amount of time, but we, we got to spend as much time possible with her because of, you know, because of what they did. So, yeah, because that job insecurity, or the financial insecurity, or the financial strain, because you've had to give up work, or you're balancing, like you said, do I work to pay the bills or spend my time with my loved one. Well, something we say often, hey, yeah, how? What's your role in that truck? Well, I guess our role in that is to help people. Well, first, I think if we talk about that whole admin journey, right, the planning journey is how you save money by actually getting your head around what all of that is, as you're coming down that train track towards that space. And, you know, people, if people have not accessed maybe Work and Income support ever in their lives before, that's another arena to navigate, yeah, and to factor in and, and, you know, just that $5 part charge on a prescription for some whanau that can really tip things over the edge. And so we do see people who are needing to maintain, you know, as active a work life as they can, particularly if they've lost income from the home. Yeah, yeah. Continence products cost people. All sorts of things cost people. Yeah, yeah. And, I mean, in the money world, like, you know, I remember, like, the insurance situation, the life insurance situation, and, you know, we got the initial diagnosis was, you know, 18 months to two years where you can't, you can't claim on insurance until, I think it's maybe six months, you know, okay. And so we were like, Okay, well, that's no help, really, any help, but okay. And then, you know. And then there's the key, we save the stuff and, you know. And there's all that admin side of it as well that you might Okay. Well, now I've got to kind of chase that up. And, yeah, there's just all these things again that you just, you just don't think about, and people ask questions, like, you know, what's probate? What's intestate? How come I couldn't get them I need from Deb out straight away. I didn't know I was going to have to front load the cost of the funeral before, you know, the money would be released from his accountant. So Esther, how do we navigate that? By trying to raise people's awareness about that that, you know, these are things that we're going to have to think about. Yeah, yeah. And sometimes that starts before they enter hospice care. Hey, yeah. Because if you know, in hospice, when somebody gets. Admitted to service that will introduce them to the advanced care plan. We'll try and have a conversation about power of attorney and yeah, and get the lay of the land and give advice on that. And the social workers, you guys play such an incredible role in advocating for and supporting patients of whanau through that journey through the system, yes, right? Yeah. It sounds like Aaron, you guys had such incredible supports around you in your network. And so sometimes I think a social worker will have really minimal behind the scenes, and other times, you know that they're taking people to help advocate you. Of them at work, income, well, you know, I mean, I thought about one of your team the other day who really did, actually, literally take someone to work and income to help. Because, you know, for that person, it was a frightening system just getting the appointment sometimes, you know, we're not this is not to bag Work and Income, yeah? But you know, it's a system that, yet again, people don't know about that, that you have to find out about while you're doing everything else that you're doing. Yeah? And we talk about the planning for the future, planning ahead in Angela situation, you've, you know, as a three months from admission to hospice throughout. So I think your current role, Trish also talks to then what we do in the community to support or provide information to people before they get to us. Yeah. I mean, it's the same common themes of people unaware of, you know, the things that need to happen and the things that they need to consider, and the same questions come up. And so, you know, we do a lot of public speaking to help with that, and not just perhaps in the aged care sector, but just in general, these are real, growing interest where people are going. I think I do need to know about these things. And where do I get information from, in a way that's easily understandable. They've got the advanced care plan and a hero kaukaudi. So there's a Maori version, recently a Samoan version, and there is a Korean version, so there's quite a lot of uptake. And like I said, it's not necessary about filling out that document, but it's just the framework for a conversation. Yeah, and, and, I think the thing that kind of sticks with me, one of the things that sticks with me now, is we've just been through all of this and, and Angela has had these conversations with with people in our family and friends and, you know? And they're like, Yeah, you know what? I need to get that sorted. And I need to do this. Some of them still haven't done that. It's like, you know? It's like, what it is, one of those things where, whether it's, I don't want to think about it, you know? And until you're actually in that situation and you don't have a choice, it's kind of almost like leaving your assignment till the night before, yeah, yeah, just thinking guilty, really, you know? And my dad raised the conversation at dinner the other night, actually, you know, he said, I just was, wanted to talk to you about, I've revisited my enduring parent uni, and I wanted to have a chat with you about, and I thought, you know, I'm like, Oh, Dad, are you okay? Yeah, he's okay. He just, I guess he's just knows he's getting older, yeah? But it's not just people who are older who die. Is, where were you? Yeah, I think we think as well, older people, potentially, have had this their whole life to plan, which isn't always the case. It can still catch you. I guess I'm thinking with with yours and Angela situation, the fact that she's in her 40s, and there's not, probably been time to plan, but there's children involved, and there's there's work involved in things that it really that navigation, that administration side of it. There's so much that comes into this that's, we're not even touching, on Angela's medical side of things and her symptoms and how you're going as her carer, there's so much to plan and to think about and consider. I'd wonder how people can work that out without having the networks and friends and things like that. Yeah, look, I, you know, like, if I look at, you know, some of the the older people that I know now, I wonder if it's just, you know, that you just, it's just not something you talk about. No, it's part of the problem here, and you just don't talk about it. And you you know, why would I? Why would I plan my funeral? Part of it is not knowing how to do it, and especially, you know, in a world that's changed so rapidly, is in, you know, not knowing how to access any of those things. You can't just, you know, you can't wander down to the post office to pay a bill anymore. It has to be done online and all those kinds of things. So, you know that, you know, does that add some. Complexity into it of well, okay, I do want to do those things, and I know that I have to do them, but I have no idea how to do them, you know, because it's not something I've had to think about and of everything I've got going on in my life, whether it's dealing with a end of a life limited condition, or actually going to work every day and managing my front time job and children, it's probably at the end of the to do list, yes, the lowest of the priorities and sampling that we put off, whether we want to address it or not. And I think an interesting thing is the amount of times I do hear from caregivers. And similarly, you said so, Aaron too, similarly, that actually the sense of almost fulfillment or achievement or pride and self or something, for thinking I did. I did that, and I achieved that, for my family member, for my loved one, the way that they wanted it done. I, you know, a couple of people, I once spoken to a woman said, I don't, I couldn't do it. I just didn't think I could be able to do it, yeah. And then, just like I did it, yeah, yeah, yeah. Well, you just, I'm making an assumption here, but nine times out of 10 you don't have a choice, yeah, it's, you know, there's, there's this five day period between the time that they pass away and the time that, you know that the funeral is, you got to organize everything, and, you know, and, and we were, Angela was hands on, right? You know, whereas, I think, you know a lot of people, well, I'm just, I don't, I don't want to talk about it, yeah, I'm just gonna leave it. And whatever happens after I'm gone, you know, don't you do this? Yeah? Well, yeah, that, that's the thing, right? And, and, like I said, when, you know, just even down to, to dressing there, you know, like, it wouldn't have been what I chose in, you know, but I'm thankful that she was like, This is what I want to wear, and this is, you know, these are the songs I want to panel, and those kinds of things to make it. And I think what, and what it did was it made it about her, and it had, you know, like, you could, you knew that it was that it was Angela's, it was Angela's funeral, yeah, and, and then, you know, like, lots of people came up to me afterwards, and they were like, oh, and we started singing. I could just, I could just picture her up there, just looking down. Just be like, you idiots. Look at you all singing this song for me, you know. And, yeah, she, you know, she, she would, she would have loved it, but that's, you know, but that's also, in essence, who she was. And I, and we went to Angela, and I went to a funeral a month or two after she'd been diagnosed. And it was for it was, how did that feel? Well, look, I said to her a number of times. I said, Are you, are you sure you want to go to this? Like, again, I couldn't, you know, like, that's kind of, and at the time when, when we, when we went, like, I don't, you know, we didn't kind of go as, like, a, well, let's go and see, you know, like a scouting mission kind of thing, like information gathering, yeah, it wasn't anything like that that, yes, that kind of, that kind of happened by, you know, carry your fault, yeah, yeah. But no, she was like, no, absolutely, I want to go and and I think in in the thing that came out of it was when, when we, when we left, she knew what she didn't want, you know? And so she was like, I that that's not, that's not where I want to go. And I think that kick started, the whole this is what I want, this is how I want this to go, which, you know, it's kind of a weird scenario, but I think, yeah, it was the kick start to get things kind of going. Yeah, it's a really important reflection on the more we can talk about it and think about it, because ultimately, death is inevitable for all of us. We don't know how, we don't know when, but it is something that that could happen or that will happen. And so to be able to have these conversations and and actually talk with our loved ones and maybe set a few things in place to prepare ourselves and, most importantly, prepare our loved ones to empower them to make decisions that they know we would want. Is really, really, really important. And thinking about, you know, you know, early on in our discussion, you mentioned about, you know, that transparency with the children, yeah, yeah. And just how, how pivotal Could you talk about that? Yeah, and well, and, and kind of following on from what, from what yesterday, just said, like, if, if something was to happen to me today, I have a 21 year old, an 18 year old, 17 year old, and. A in a nearly 11 year old, am I? Am I leaving that up to them to it? Would it? It'd be amazing. I mean, it would certainly be talked about, definitely, um, but again, a kind of following on from, you know, Angela didn't feel, you know, didn't want me to be kind of burdened with the responsibility of planning things. What? How could I do that to them? And so, so I, I already have one, I have a I have a funeral plan and and the the form that I, that I filled in at the top of that form, it says, This is to help, you know, relieve some distress from my family for, you know, having to make decisions, you know, again. And I think part of that is to kind of counter that whole, what, what? Why did you do that? Yeah, you know, and we in terms of the kids, like the the the casket was, it was at home, you know, and it was, and it was set up in the lounge, and, you know, and again, there was all these people came to put, you know, to put their hand print on, and, and, and Taylor, my, my 11 year old, was conducting it, right, okay, even one, you have to come over here, and you have to get, You know, I'll paint your hand, and you choose the color, and things like that. So, so they were, you know, they, they were a part of it in, in the other, the other part was, initially, Angela had said, why I don't, I don't want to be at home, you know, when I pass away, I want to go to the cottage and things like that, has it got, as it got closer, the kind of protective person in me was like, I don't, I don't. I don't want her to go, you know, I want her to to be here. So I said to her, you know, I said, My Love, would you know? Do you think that it would be okay if you if you stayed here, and she said, Yes. And so there was a three day, you know, three day period, where, where she was, you know, where she was at home. And so the kids could go and talk to her, yeah, and go and see her. And I think, I think because, because there was no, because we never hid anything from them, yeah, you know, because it was, they were they were just, they were part of the they were part of the journey. You know that that and the whole way they know, like Taylor knew something's going on, and potentially what was going on in her head was so much was quite different to what was actually going on. So to be open and honest, protect them still, but to bring them on that journey, I think, probably is really important. I love the way you know, Angela wanted her casket decorated people to lay hands, and that gave space for Taylor, as she said, to orchestrate that and be active in the way that was right, yeah, yeah, so her Yeah, yeah, definitely, yeah. Thank you for being so open with us, but also talking to us about how the conversations that you Angela and the rest of the family were able to have that sound like although they were so challenging and confronting and emotional, they were all so very helpful and and I imagine healing in some phase as well. Yeah, absolutely. We'll end it there. Yeah. Trish, thank you so much for joining us. Um, thanks for sharing you know, well, thank you for think of being here. Yeah, it's a teacher. Um, to us all the best, too. Peachy. Yeah. And in the next episode, we'll be joined by Cherie, who is Angela's sister and played a really important role in supporting Angela and Aaron through their journey, and I can't wait to hear from her. Thanks for joining us. You.