Episode Eight - Saying Goodbye

In this moving episode, we follow Angela’s final moments and the days that followed her passing. Aron shares the family’s experience of saying goodbye, from the doctor’s respectful role in death certification to the deeply personal decision to keep Angela at home. We are joined by Hospice's Dr Celia, who reflects with Aron on the emotional weight of terms like “death certificate,” the significance of the funeral, and the sunflower story that continues to honour Angela’s memory — including the tattoos worn by those who loved her most.

A heartfelt conversation about love, loss, and saying goodbye.

Thank you for listening!

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Transcript

Unknown: 0:04

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 eight on the previous episode, we had Charlie in again, and we talked through Angela entering her final days. And today we are joined by another special guest, Dr Celia, hello, thank you. Welcome. Dr Celia, um, you didn't have too much to do with Angela's journey, but we thought that it was so important to have you join us before we crack into things with Angela. Can you talk me through what your role is at hospice West Auckland, yeah, I'm one of the doctors at hospice West Auckland, so we really support the nursing team go out and see patients and families when there's problems, maybe with managing their symptoms. But also we support with communication and information, so being really clear, some families get confused. When you're in hospital or in clinics, it might be really hard to understand what's going on. And I think when you get the wrong end of the state or different family members have different messages from different people, then it's really helpful to have an open conversation with everyone about where we're up to and what's happening. And there might be questions about what's going to happen next, what might happen. So we deal with a lot of that communication as well support the nurses with that. Because Aaron, you didn't have too much and like sort of face to face involvement from our medical team. But Celia, I imagine that you guys were working pretty hard behind the scenes. Yeah, sometimes with some of our patients and families, it's more about supporting the nurses. So we've got an amazing team of nurses, to be honest, and they're very specialist in themselves. They're specialist nurses, and a lot of the time, there's many things they can manage. It's always nice to have a conversation with somebody else sometimes, isn't it? So they do, they will call us, and we'll generally know those people who are a bit unstable, able to give advice and at times, come out with them. And we are visiting patients every day and visit patients at weekends as well. I'm curious to know what got you into the sector of palliative care? Yeah, that's, it's a huge question really. Sometimes you don't really know exactly why you end up somewhere. I think there's a lot of things that influence that. Where you've come from. I think my own parents, deaths, of my own parents, and how that, how that went. But also I realized how much, how important it is to make things comfortable for people near the end of life, and also for families to understand what's happening, and that actually you can make a huge difference in that space, if you were able to do that. Is this sector something that's attractive or interesting for doctors? I think of doctors as going into the field to heal or fix things, and this maybe is not quite the same. Yeah, I think that, um, it wouldn't be seen high up on a hierarchy of medical doctors, because somebody, something like a cardiologist or a neurologist, would be seen as, um, maybe higher, if it higher valued, if you had to value those things. But I think as we work more and more in medicine, as you go further in in your career, you realize that, you know, there's a lot of people for which we're managing their symptoms and not able to provide a cure and so And actually, I feel like often those people are left out. So once you're realizing that that's actually can happen, then you're more interested in wanting to support those people. And also, I think I'm really interested in community care and supporting people at home. So I think that also is where that comes from, where it's really obvious that they're not actually getting the support in the hospital sector. That's not the right place for them to be. So providing that care in someone's home, I think, with an interdisciplinary team, which is also such a key part of hospice services, is really something that motivates me. It's quite a different approach, and the holistic, the interdisciplinary approach that we have, compared to particularly other settings. So it's not a good income earner. It can do medicine. You want to do one where there's private practice, so surgery and esthetics, but, yeah, it's something that I feel a lot of will get a lot of reward. For me, one of the things you just touched on earlier was, was that communication piece and helping people understand what's what's going on. And I, I distinctly remember when, and especially very early on. On when, when we first got Angela's diagnosis, and, and you've got, you know, you've got doctors, and you've got brain surgeons, and you've got, you've got your your nurses and stuff all telling you this information and, and everyone takes bits and, you know, and especially in the beginning, when it kind of was, it was Angela and I, and we were the ones taking in all of that information, and, you know, and then you're passing that information on and trying to recall it all. And I remember, we just got to a point where I was like, I can't keep explaining this, and I'm picking up on bits, and Angela's picking up on bits, and in the kind of molding the story. And I think in one occasion, we actually got on the phone with our with our nurse specialist from from the hospital. We put her on speaker phone, and we got there was me, Angela, Angela's dad, my auntie, Angela sister, and we all sat around and we said, right, tell us what is happening. And there was this kind of hour long conversation of, you know, these are Angela symptoms. This is, this is what her diagnosis means, and this is what the treatment is. And, and it kind of spread the responsibility, I guess. And it was the same as it kind of went on, you know, with, through, throughout the whole journey, with, with with Charlie, with, you know, with with the doctor, and with everyone from hospitals became this thing where it was like, I can't take all of this, and so I need everybody else to kind of be here too and and listen. And so it's a really, really important bit. Otherwise it just becomes really, really overwhelming. And for me, it was really important to get, you know, because I was kind of sharing the information we talked about, you know, providing information to family and friends and stuff like that. So you didn't want to get it wrong, and, you know, you didn't want to overstate it, but you didn't want to understate it either. And so it was, you know, so that was a really, really important part, was having someone just to be like, Guys, this is what's happening, and explain it and communicate it in in layman's terms. Yeah? So, yeah, I think those meetings are really, really important. And there's probably, like, crucial parts where they become most important. I think, like you've said, after diagnosis, when you're planning treatment, but I think also when people are discharged from treatment services like the hospital says, right, there's we're not offering any leukemia, or you decide together no more chemotherapy. That's the point where I think people want to know, Okay, what does that mean? What's happening next? So we really like to offer that family meeting at that point. And it doesn't sound like it in your case, but we have some cases where people families blame each other. You know, why are you giving that medicine? Or why haven't you asked for her to have this treatment or that treatment? Yeah? What about this? So it's really nice to have everyone in the room, yeah, or everyone who needs to be there, yeah, to hear those same things messages, yeah, take the pressure off the main carer, yeah. And I think especially, even more so when, when you're caring for that person at home as well, you know? And it's and it didn't happen. It didn't happen with us, you know, we had questions, but there was no kind of animosity behind it. It was just, you know, what's going on. But I can imagine in some situations like you say it would be, well, why are you doing that? And someone told me that this should be happening and things like that. So, yeah, that's a really important piece. I imagine you're having to adjust or change the way you communicate as well, because you might have a spectrum of one family member that's a doctor themselves, or knows the lingo and understands and then another on the other end of the spectrum that you're really having to, you know, support them. They might have never had experience in the health system before that's true, and I think we do have to change our communication style. That's one of the skills, I think, in terms of depending who you're talking to, but also letting everyone sometimes, I find people hide what they're worried about. They're a bit nervous about saying what they're worried about, yeah. So sometimes relating other scenarios where we've had people worry about x or what I'm wondering, if you're worried about something else, you know, those sort of questions. So it can really try and pull out and UN tease what the problems are. And sometimes you can tell that by body language that people are looking defensive or angry. Some people have had really bad experiences with our health system or feel really badly done by so I think you need to give space for all out for people to be able to talk about all that you said as well. Sir. Dr surly, that you like community work and you know, West Auckland, we've got such great diversity in our community, but I imagine you're going into a lot of different situations as well. How do you manage, you know you might be going from one extreme of a home to another and supporting completely different families. And I guess that is something we need to adapt. But actually it's the job. It's a pleasure to meet and interact with so many people in different cultures and backgrounds. So yeah, we take our shoes off, and in we go and. It's their place, which is partly what I also think it's really nice, because in hospital, people take the power come to you know, they have feel less empowered. I think, yeah, if it's your home, yeah, you're in charge, really? Yeah, which is a good place to be. And you can get a much different picture of a person in their own home. Quite often, they might present differently if they're coming in to a clinic or going into hospital, very different. Yeah, and that's another role I think we have, because we're going into people's homes, so they often do contact the oncologist as well, because they might not have a good feel of how the person's doing, either one way or the other, either to say, look, they're really struggling with this, and we just wanted you to know for next time you see them, or they're doing much better than we thought. You know, so I think that feedback and our relationships with oncologists and the other teams is really important too, to liaise. How does the dynamic work between yourselves and say, the general practitioner, because Angela had a GP that was still heavily involved. Angela's GP was involved so really heavily throughout was, you know, would come by on weekends, kind of, she was almost on call for us, which, you know, which was amazing. And, you know, worked really closely with with Charlie and again, helping, you know, make decisions and around treatment and getting things done. So I kind of only met her once. Angela got got sick, and you know, you have those first after the initial diagnosis, and you have to go in. So I was obviously having to take Angela to those appointments. But Angela, she had been Angela's family doctor for for quite a while she was and Angela's mum actually passed away. And Angela's issue, Angela's GP was also her mum's GP, who diagnosed her and and stuff like that. So they have a they have a family connection, yeah, yeah. I think it is really varied. Not everyone's lucky enough to have a relationship with their GP, or they might have even moved recently into the area, or being quite disconnected because they've had a lot of hospital appointments. Okay, so that's meant that for a number of reasons, which might include financial, they haven't actually seen their GP that much. Yeah, so I think we work depending on how present the GP is. If the GP wants to be involved and is very present, then we, you know, we support obviously, the nurses can work with them if they need us more involved with patients who've got less of that connection, then we can also do that. So we do kind of flex a bit in that space. We do have a hospice at home type service, which we called korowai Kia, where we provide more intensive support for a period of seven days to seven to 10 days. And in that we take over prescribing for that time when people are unstable. But usually we work with a GP, and the GP might be doing more of the prescribing most of the time. And Angela had a admission into our korowai care, okay, yeah, I believe that that was towards as she was approaching the end of her life. Yeah, so there was kind of as her we talked about in the last episode, like as her kind of symptoms got worse and her tremors were getting worse, and stuff like that. So that that's when korowaike got involved and to try and kind of help her to relax and and kind of relieve those symptoms, that that's when they kind of really came in and yeah, and helped out. Where we got to in the last episode with Angela was she was she was starting to enter her final days, her last days of life, and we sort of got to the point where she was slowing down, spending more time in bed, altered levels of consciousness. Aaron, talk me through what that period was like for you, and potentially how, how that thing's progressed. From there, nothing much changes until, you know, you kind of start noticing this. You know, the breathing starts to change and, you know. And so that's kind of a panic, and it's quite hard, because you you kind of know what's coming, but, but, but you don't know, and you don't know if they're comfortable or anything like that. So you're kind of ringing up, you know, the oh, 800 number, going, Hey, this is what she sounds like, like, you know, and then it's kind of a that's okay, you know, like a reassurance, that's, you know, that's normal, and you know, and she's okay, and you know, and she's kind of entering that, you know, those those final stages, yeah, what are the changes to breathing? Because we hear a lot about the death rattle and things like that. I wouldn't mind just talking about that waiting time, if that's okay. So I think I can see that, and I can sense that how hard that is when time can kind of almost be slowed down, you know, 100% yeah, as you say, waiting for something to happen. And for some people that can end up even being stretching to weeks. Yeah, um. Yeah, and I think, but what I've seen and noticed, I think, is often that environment where people can have time together and talk about things, and although it's also hard, is also valuable, yeah, can be really valuable in terms of reflecting on lives and and experiences that you people have had together, yeah, and it, and it's, and you kind of, for me, like, I kind of got caught in this kind of thing where you, you you don't want it to end, because, you know what the end means. But there's the other side where you're, like, for her sake, you know, like, I don't want this to, you know, given that she didn't want to suffer and things like that, I don't want this to to drag out, you know, but so you kind of get caught in two minds about about what you want. But yeah, I think sometimes when people are sleeping and rested, it's almost like you could think to yourself, maybe this isn't going to happen. Maybe she's going to wake up to us. And I think that's another challenging thing for us with our loved ones, we think, Oh, maybe that's all wrong, yeah. Oh. And anytime they anytime they move, or, you know, there is a slight waking up, you're like, oh, there we go. And that's Oh no, okay, this is real, yeah, yeah. So you build up and then come down again, yeah. And you're still doing things like, because, like, I remember being like, maybe she needs something to drink. It's like, well, no, she doesn't, but it gives you something to do, you know. And you're like, Okay, well, we'll just leave it here, just in case kind of thing. And yeah, I can imagine potentially some guilt as well. Like you said that you you want her to stay with you for as long as possible. You're not ready to lose her at the same time. You don't want it to be dragged down for her to suffer. Yeah, some people maybe, when they've been doing it for so long, there's that feeling of, you know, just I'm ready for it to be over, and then the guilt that comes with that as well. How could I wish that on my loved one? Because it can be pretty exhausting as well, can't it? People would always be like, you know, you've got to rest, and you've got to, you know, you've got to look after yourself. And it's like, I've got all of this time once she's gone to rest and, you know, and do what I need to do at the moment. She's, she's the focus, yeah, and you're right. Like it, you know, there is a bit of that. Like I said, you get you get caught because, you like, I don't want this to drag on, but I want her to be here for, you know, for the two years that we want him to have, you know, you know. And if she could just wake up any moment now, and because she's had a rest, that'd be great, but, you know, you'd be but deep down, you know that that's not gonna happen. Aaron, you mentioned that you you were noticing one of the big things was the changes in Angela's breathing, and that you were calling the like 100 number for support. With that, I hear a lot when people talk about the death rattle, or changes to breathing. Celia, what is the death rattle and is it as scary as it sounds? I think it's hard for families to hear because in a way, maybe it's partly about knowing that that means the ends nearer. We often talk about it being like it's really just because a lot of the time we don't realize we're swallowing saliva all the time, but when you get more weak and you're in the final stages the swallowing anything's too hard, so everything goes in the back of your throat, and that noise, scent, and usually patients don't seem distressed by it, but the families and loved ones really can be, yeah, and that was a that was a really big thing for me, like, you know, kind of, from December onwards, I was constantly worried that she can't swallow, you know, she can't, she's fine. It's okay. And, you know, like, there'd be a couple of times Charlie be like, Dude, are we going to do this again? Like she's okay, kind of thing, you know, not that she said that, but, you know, it was, yeah. And I think, you know, when it when it, when it, when it came time, at it, you know, like, I didn't find it distressing. There'd been this kind of like 12 to 24, hour period leading up where her breathing had changed and kind of got louder, I guess, from what, from what it had been and I guess when, the when the when the time actually came, I was still sleeping on the couch and and I'll never forget it. It's 243 on Saturday morning, and I'm completely asleep, and I just wake up 243, in the morning. I just, I'd wake up and what's happened and and I can hear that her breathing has actually just got shower. So there's no kind of scary like death rattle type. So. Situation, I can just tell that it's got lower and so I so I get up and I go, and I go and check on her, and, you know, just talk to her and say it's okay, you know. And I kind of quickly realize what's about to happen. And so I, I go and run down the hallway, and I I get Cherie, I wake Sheree up and I, we wake the girls up and in, and we, we get them in to the lounge to come in, you know, to come and say goodbye to Angela. And, you know, ending at 247, she she's gone. So we've got this four minute period. And it felt like so much. I felt like so much longer, but it was actually a four minute period and and, you know, we can believe whatever, whatever we like, and everyone will have their own opinions, but to me, that will always be her telling me that, hey, I'm going to go now. And if, if you want to come and say goodbye, we got to go now. And, you know, and so, yeah, so that's how I've kind of always, always taken it. We got this four minute period where we got to, you know, just say goodbye to her, yeah, before she finally went. It's amazing that you woke up a just like, yeah. Like, no one will convince me that it wasn't her saying, Hey, I gotta go. Yeah, yeah. And she'd always, when she'd been to any assisted don't think her her original date, what she wanted to be on the 19th. Angela was born on the 19th of April. Her mum passed away on the 19th of May, and she she was always like, Well, I came in on the 19th. I'm going out on the 19th. And I think we might have talked about it on the first episode, Angela was the biggest procrastinator in the world. Honestly, we could be watching TV, oh, I need to go to the bathroom. 20 minutes later, she's doing gone, because she just couldn't do anything immediately. And she passed away on January the 20th, you know, at 247 and we were always like, this is just her procrastinating. She wanted to go on the 19th, but in true Angela fashion, she procrastinated long enough for it to be the 20th. So, yeah, that sounds a really special time, then that you were able to all be there. Yeah, absolutely. And, you know, I said it the two months who were telling us that, hey, I'm going and, you know, I've held on for long enough, and, you know, I need you guys to to be here. And it sounds like she was quite comfortable at that. And that is last minute, yeah, yeah, yeah, like, and she'd been kind of comfortable, you know, for days there was no, you know, I just would never really know. But you know, she wasn't in any pain that, you know, the medication helped make her tremor and stuff go away and, you know, the scratching and stuff that she was, you know, doing involuntary and things like that. So I think, yeah, you know, she, she had a massage, to the massage therapist. Come in. I think, what if two days beforehand? So she had a nice massage and stuff like that. So, yeah, she was as comfortable as I think she could be, yeah. So I think sometimes it's hard for families, if that time's a really tricky time, and people are a bit more restless, or, as you say, there's quite noise, some noise or rapid breathing near the end of life, reminds me of a family that rang us in probably in the evening because they and their father had died and had been very restless just in the last few minutes, probably the last five minutes, and ended up going out to see that family and just having to remind them, actually, his biggest wish was to be at home, and you guys manage that. And the fact that the last few minutes was was a bit tough. He would still have chosen that, which is, I think, where they were coming from, where they could re look at that and think, yeah, that was tough, and we're glad we did, because they made a big effort and had to work quite hard to get him home. Yeah. And so yeah, it was, it's hard when it's like that. And I still think we can look at it and say, Yeah, but this is the overall goal, and this is what you achieved, yeah, keeping someone at home, which is what most of our patients, where they want to be, yeah. And it's not an easy thing to do, you know, Aaron, it sounds like this was a really, you know, it was intuitive, almost, that you woke up at the time that you did, and you had that moment, and the girls had that moment, which I think is so special to be able to to share that moment with them and say your last goodbye. Yeah, to. Angela, what happens next? Because it's 247 in the middle of the night. Are we what's next? So, yeah, so it's always we'd obviously prepared for this, you know, a few months in advance, talking to funeral directors and, you know, doctors and nurses and everyone. And initially, I was quite surprised, because it was like, if it happens in the early hours of the morning, there's no need to ring anybody, just, you know, we don't Deb we don't need to rush over. We don't need, you know, so just take that time. And I was like, what? Like, surely the cavalry should be coming and things like that. So it was like, Oh, okay. And I, I remember getting a getting sent a message from my from my ex wife. Basically, it was a reading, I guess, and kind of with some instructions on what to do. And those first few moments, you know, after, after Angela had passed away, and it was, you know, it's a privilege to kind of be in that moment and just sit and take some time and and, and, and just, you know, enjoy the moment, but just be in the moment and reflect on things, and, you know, reflect on on her life and our life together and and things like that. Of course, me, being me, I did the complete opposite. You know, I had told myself. And you know, I, my ex wife, Tracy knows me very well, obviously. And so she sent me this, knowing full well what Aaron's going to do, and I'm going to tell him to do the opposite. And of course, that's not what I did. And throughout the throughout this whole journey, you know, I've dealt with things, I guess, by just going into logistics mode and making sure that everything is done. So I just did the same thing, you know. And I didn't ring, you know, I didn't ring funeral directors and things like that. But I had a list in my phone of, you know, of only three or four people, but I divided them into groups of Angela's friends, my friends, my family, Angela's family, and I just had to ring one person from each of those. And it's, I think the reason I kind of also didn't sit in that moment is because you kind of, I kind of also felt a responsibility to let those people know, you know, as soon as possible. So you know, you know. And we've talked about this a lot, if I reflect back on it now and Hindsight is a wonderful thing. I would have just, would have just sat there with her, you know, because, and in this reading, it says you'll never get that time again. You know that, that you know that 510, minutes after you know, half an hour, whatever it needs to be, you won't get that time again. Yeah, it's interesting, isn't it? I'm not sure that there's a right or wrong thing to do at that time. And I can imagine, for some families, if you waited, someone might tell you, how come you would bring you straight away. So I think it's very difficult to to kind of put a general rule about that, and I think people have to, and you had that time before she died, which sounded about a very precious time as well, yeah, yeah, yeah. It's, yeah. I mean, it's like just reflection and, you know, and there's always, you know, there's always things that we that we could have done differently. And, you know, and I, I've said before, I think throughout the whole thing, I would have, you know, would have delegated more tasks and things like that. But, you know, I also know that that was just me wanting to just get on with things and make sure everything was right for her. So yeah, and delegation is easy to say, but that's an added thought process to go, Well, what can I delegate? You know, sometimes it's like, it's just easier to do it, yeah, yeah. And then I know what's going to be done, all right? And that's what we talked about, you know, last time with you know, don't ask the person that's going through this. What can I do to help? Just do something that's Yeah, I think sometimes it's such a shock when you've been involved so much and someone does the actual point when someone's died. So we have some families who end up calling an ambulance, even though they know that that's not necessary, yeah, in that moment. So we try and sort of try and give the advice to bring call us, because we can talk you through the next. Because I can imagine sometimes your brain just comes completely at the time, well, what was I supposed to do? What am I going to do next? Because do we do a bit of, sort of, I don't want to say it, but like prep work, where we can with with families, to say, this is how you can prepare, and these are the. Things you might want to consider or do. Yeah, we usually would talk about that, what to do in the first moments and and I try and make it simple by saying, if you're worried at all, just, or if you're not sure you can't remember any of this, just give us a call, because we know that. Yeah, it's hard for people to remember at that time. Aaron, I'm I'm interested to know after so you, you've had that moment after her, her, um Angela passing. You've, you've got into your logistics mode, which is, you know what you needed to do at the time? Yeah, I imagine next, the funeral come. They come in. What happens next? Yeah, so, so what happened next was all the people that had been called turned up at our house at three o'clock in the morning. And I had, I had a nine year old that you know, who, although her mum had just passed away, was pinging off the walls. And I really just was bouncing off everybody and and it got, got to five o'clock in the morning, and I was like, actually, Taylor, you and I are gonna go and have a little sleep. And so we did that. And then, because I, you know, I kind of knew that the next kind of 48 hours, really, was just going to, we were going to be rabbing up again. And so, yeah, so, so we, so we go and have a have a sleep. It wasn't much of a sleep, but we try and, and then, you know, kind of gets to six in the morning, and that's when I'm, you know, I'm now ringing Angela's funeral director, I've now run hospice to say, hey, you know this is, you know that it's happened, and you know, kind of, what do we what do we do from what do we do from there? And we had, you know, we had, we had a hospice doctor come out and in and go through that whole process. And, you know, I guess I don't know what you call it, but confirming that Angela has, you know, has, has passed away. What is that process? Yeah. Does it have a name? I guess it's in order to complete the death certificate, you have to have confirmed or death, yeah, but it is something if we know the patient, it's a confusing process, yeah? Because if we know the patient and they're for burial, then we don't have to come and see the patient again. Yeah, for us, if we've known someone, well, it's a really nice time to be able to come out, you know, because we might have been involved quite a bit, yeah, and then it's quite hard to never touch base again. Yeah? Actually think that's quite a hard thing to manage for us as clinicians, and we've got to know the family quite well, only some really difficult times. So coming out in that case, I think, is something that we appreciate, that sometimes it's a GP that does work anyways, yeah. And so, so we had, we had a doctor. We don't, we'd only had kind of two dealings with her previously, and she came out, and again, this would just stick in my mind forever. Was the, just the the respect and, you know, being very mindful of Angela's dignity and stuff while she was going while, while the doctor was going through the process of, you know, of of confirming that Angela passed away, and talking to Angela and saying, you know, like, Angela, I'm just gonna roll you over, and I'm just gonna, you know, I'm just gonna put my stethoscope here, and I'm just, you know, talking to Angela, you know, like she was, You know, like she was still here and, and I don't know what I expected, but it wasn't that, but, like, it just, it just meant so much. You know it, you know it wasn't because I have a kind of thing I don't, I don't know why. About the word death certificate, like it just, it just never sits right with me. And in and I kind of felt like, Okay, well, you know, she's passed away, so now we kind of get into this, I don't know what you call it, but just this practical kind of state and, and so I wasn't expecting, you know, this, this whole thing, you know, talking to her and, you know, and actually, I think at the end, you know, saying goodbye to her and things like that, it was really, really nice. Well, that's nice to hear, and it's certainly something I've found myself talking to someone at times, and I wondered if that sounded weird. It's nice to know that that's not, and that sounds, you know, that it is respectful. Yeah, I think one of the really difficult times for us is if we haven't met the patient and family before, when we have to do that, because it's a legal thing we have to go through. And it's nice to make it into a time when we can reconnect. But if we haven't connected with that family before, that's quite challenging, yeah, and I find then it's like quite nice to ask the family about. They were like, you know, just to sort of connect in some way of understanding what sort of person they are and what they what they like doing. Yeah, it's just one way that I find I can connect. But yeah, that's quite a challenging, yeah, time. I think having to do that people you don't know definitely, it speaks to me that it's still maintaining Angela's dignity throughout and taking a very formal and professional sounding death certificate into a much more intimate experience, and I can just hear the care and the compassion that's shown you know when Tamara is speaking with Angela and and letting her know what's happening. Yeah, I would have found that comforting for me, yeah. And then yeah, and then, I guess so that's kind of for me and my legislator. That's, you know, we've now ticked that off, and then we're very lucky that one of Angela's friends as a as a funeral director. So we, and we've talked about it before, Angela had kind of already pre planned what, what was going to happen and, and, you know, and she was going to, she was going to stay at the house. So now I've made that phone call and, and Jackie comes, comes to the house, and again, that's just a whole respect thing. And, you know, I guess, in some ways easier for Jackie to kind of connect with Angela, because she knows her. But there's also this, you know, there's a professional side of it. And then there was the the personal side of it for Jackie and and she managed it amazing. And, and we, we were just, we were allowed to do whatever needed to be done. And, you know, we'd had conversations about, you know, embalming and things like that, and they think, because it's not something that, you know, that we have to deal with on a regular basis. For me, I had this kind of old school kind of idea of of what was going to happen, and, you know, where she was going, you know, the the funeral director would come and take her away, and she would, she would be in bond, and, you know, and we'd be able to go to the to the to the funeral place and see her, you know, during kind of visiting hours, I guess. And then the next time we would see her, would, you know, she would be in her casket, and you know, with the service would be, and thankfully, we had had these conversations quite early on in Angela's diagnosis with Jackie. And Jackie was like, I'm just hit out you guys, you guys do what, you know, whatever you want to be a part of you you'd be a part of and, you know, and, and she didn't need to be embalmed. And we were like, well, what do you mean? Everyone gets embarrassed? And I was like, Nope, that's, you know, that's not a thing. And was like, you know, she can be, but you know, she doesn't have to be. And it was like, Okay, well, that's, that's cool. And, you know, we so anytime. So Jackie came to pick her up and take her away to kind of be prepared. And I went with it, you know. And then she, she stayed at the cottage, which we've talked about. She stayed at the cottage overnight, and then when it was time to bring her back to the house, I went and got her, obviously not in my car. We, she went in the appropriate vehicle. But, you know, she stayed with us for three days, and, you know, and we, we managed all of that. We myself, my sister and and Cherie, we got to, we got to dress Angela and the clothes that she wanted to be dressed. And, you know, when we, when we brought her back home, you know, we managed that whole, you know, that whole process. We had the, we had the casket, you know, with the with the kids and adults putting their their hand prints over it, and and things like that. And, you know, in we, we, she was in our she was in our bedroom. So if, if people wanted to see her, they could go down and they could shut the door, and they could have some time to themselves. And if they didn't want to see her, but they still wanted to come in do the, you know, put their hand on the casket and things like that. That was okay. And what tended to happen was that people would come in and be like, I don't want to see her, but I want to do this. But, and then after they'd done that, they'd be like, I actually, is it okay if I popped in and and see her? Absolutely, you know, fine. So we got we, you know. And I know that that's not for everyone, but I think for me, that was really that helped me. I was very protective of her for the whole three months, you know. And that wasn't going to change. And. Now that she, you know, that she wasn't physically here, you know. And that kind of carried on through the, you know, through the funeral, you know. And obviously Paul Bearer and taking her out to the car and stuff like that. And then while everyone's coming out, I go in the car with, with, with Jackie, and we drove her down to, you know, to the crematorium and and I take her in there. So I do literally everything that I was allowed to do. Is what I did. I, you know, before the before the funeral, I was the one that put the lid on and things like that. And I completely understand that that's not for everyone, but that was just something that I was allowed to do it and and that meant, you know, that meant so much, you know, that I that I was allowed to do those things. And I think ultimately, was quite healing, I guess, for me, that I had looked after her right up until the point where I couldn't look after her anymore. So yeah, I think the embalming issue, a lot of people don't know that those are the choices. Yeah, and I think we're just becoming more familiar with the fact that we should be informing people, because I think up to now, we we often talk, have conversations about whether people want their loved one to be cremated or buried, and we just tend to have left some of these conversations to the funeral director, yeah. And I think that's not necessarily where we want to go, and we're just kind of rethinking that. And it sounds like you'd have thought that that would be a useful thing for us to do, yeah. And I think, you know, I think we've talked about it previously. Angela and I went to a funeral in December. And at the end of the funeral, we we had a conversation and like, that's, that's not, you know, that wasn't what she wanted. And it was, you know, we went to that funeral, and in my mind, I was like, Well, that's what a funeral is. Do you know, there was nothing out of, out of the ordinary, or anything like that. It was like that. That's what a funeral is. But Angel was like, but that's, that's not what I want. And so if that's not what her funeral was, you know, and it was, you know, we talked about, you know, there's singing karaoke and terribly, but singing karaoke and, you know, lots of people, lots of people got to talk and and share stories about her and and things like that. And l, I always struggle with what celebrant slash MC. And if it's a celebrant was, you know, was my brother in law, you know, and had a connection to Angela and things like that, you know. So we were just allowed freedom to make it what she was she wanted. And I you know, and if we had, and I think if we hadn't had Jackie and and had those conversations with her, I think we would have, you know, we would have potentially, just gone down the traditional route of, you know, well, we'll provide you a MC celebrant, and this is what will happen, and, you know, and yes, you would be able to come and see her, and visiting hours and things like that. So we were really, really lucky that, you know, that we were allowed to do those things. So I think your story there will make us reflect more, because we started to think about that space and what we should be doing. Yeah? So I think that's a really useful reflection here for us. I think the knowledge of choice is so important, you know, like I, I previously would think as well there's, there's kind of one way to do, yeah, a funeral or to say goodbye to somebody, but understanding what choices are available and what options are available so you can do what you need to do. You know, for you, Aaron, it was so important to be with Angela for every as as long as you could. For others, maybe not, and that's also okay. But you know what those options are. It's really important, yeah, just, just to have the choice. And I think even when it came to putting hand prints on the, on the, on the casket, you know, when Angela, she chose her casket, she never wanted to see it, but she she chose it. And, you know, and it wasn't, you know, a rich mahogany kind of, you know, kind of thing that you see, yeah, yeah. And, and when we would say, you know, we kind of opened it up for a couple of days, we'd be like, right now, everyone, come over and put hammer payment. I'm sorry you're doing what you're like, come over, put your hand, prep, write your name, write a message to Angela, whatever you want to do. And they're like, Oh, didn't. Oh, okay. Like, No, and it's at your house, like, and Angela's there, yeah, yeah, and it was, and it was all of these things. So yeah, it might not be right for you, but, but you can have those choices. And yeah, so I've got a question with you. Chose not to embalm Angela. This was the middle of summer. Mm. Yep, how? What is the alternative to embalming? How do you care for so we were, we were very lucky that in this, this wasn't the reason why, but we were very lucky that a friend of ours installed a air con unit in our in our bedroom. This was long before this. This happened, and, and so Angela was, we bought her back home, and, and she was, you know, in the bedroom, and we just had their con on. We had ice packs, you know. So there was, again, you've kind of dipped down, and now there's all this. There's quite a lot to do, but that, you know, so you you're changing ice packs and things like that. But it wasn't like, you know, it wasn't super complicated or hard or anything like that in that, but it was, you know, it was really, really nice to just, to just have her there, and how long could you have? So we had her there for three days. Potentially could have had her longer, but by that stage, we're getting close to funeral time, and there's, you know, and things like that. So yeah, we had her there for for three days, which was, you know, we had the casket there. So, you know, kind of combined the the two. And, you know, during, you know, this, you know, again, a waiting period, because all of that was there, and people would come and see her and, you know, and there were kids there putting hand prints on and things like that. It there was just a nice atmosphere, you know. There was, you know, there was jokes, and there was stories and all those kinds of things. And if you wanted to go and see who you could and you had your, you had your, you know, space and, you know, but when you, when you came out, there was this fun atmosphere. And I said the tailor was running a tight ship on, you know, you come to see me to get your hand painted, and you get to choose a color, and I'm going to do that, and then you can go to, and here's your colored pen and and all of that kind of thing. And so, yeah, it was a really, really nice time. It sounds like thinking about things and talking about things before she died was really helpful for you. I know that some of the changes we have is people who don't want to talk at all about her side of things, and I think that's harder for them when the time comes, because they haven't had that forward planning, if you like, and knowing, not knowing what their even, what their loved one wants if they haven't wanted to talk about 100% and I think we've talked about it. But before that was that was Angela's big thing. Not only was it, well, this is what I want, but this was a way for her to help me, you know, like in when people you know, questioned why she was planning her in funeral, you know, she was like, Well, what am I going to do? You know, let him sort it out in four days while he's trying to deal with the kids and manage his own emotions and stuff like that. No, no, no, no, no, no. I want this to be what I want, but I also want to take that pressure off him. And I didn't have to think about anything. The only thing I did have to think about was when they came to me and said, Well, what lipstick Do you want to put on? I had no idea. You know, not in any Yeah, it's not, actually, she hasn't told me. And then, you know, and when I think back, if I'd had to think of all of the things to do, it would have just been really, really overwhelming, which is potentially where the funeral directors can really come in and support with that and take some of that off you. Again, it's that, that choice and option, but again, it's been, I think it's also being brave enough to talk about those things, you know. And not everybody is going to be able to do that. I think I would, you know, not now, I wouldn't. Now, I'm okay with it, and, you know. And I, to a certain extent, I have to be, you know, if I was to touch would pass away tomorrow. I've got four children who are going to be like, Well, what do we do, you know, and, and so taking that kind of pressure off them, but, but before this, what's it's not something that we ever, ever spoken about, or thought that we would need to speak about. And, you know, to sort of say, You know what, I think we need to plan our funeral, and let's get a funeral director in and have the like, that's pretty, you know, pretty confronting, but, but I, you know, when I, when I talk to people and they ask me about it, now I'm like, Oh, just do it, you know, like, yes, it's yes, it's scary, but you know, there's you get to do what you want and to have it how you want to have it. But also you're taking all of this pressure off, off your family. We're going to touch on the funeral, because we've talked about the karaoke. I think Adele, you mentioned this was one of the songs and bringing Angela's life and personality into the funeral and where we are today, we're back in Te Atatu AFC Football Club. This was where we had Angela's wake. Yep, isn't it? Yep, yeah. And I said in last episode, we also. Had our 42nd birthday here, which So Angela and I are quite fond of karaoke, so the theme for our birthday party was, come dressed as your favorite singer. And so so that that was held here, and we had karaoke going on here. And apparently during I didn't know this at the time, but during the party, it became very apparent that you could sing any song you wanted, as long as Aaron was able to sing it with you. So anyway, so when it came time to plan a funeral, so sunflowers were a really big part of it. We I think there's 13 to 15 people that all have a matching sunflower tattoo that that Jamie, my stepdaughter, designed in. So we all have that. So that was a really big part of it. And and come dressed in in green, that was Angela's, you know, favorite color, and and things like that. And then, you know, what are we going to do in this beginning, but well, and Angela had already chosen all the music, and she said, Well, I want, I want Adele Rolling in the deep, and I want you all to sing it. And we were like, typing series. And so where that comes from is Angela and I a few years ago had gone out with some friends of mine, and we were in this karaoke bar, and we'd had a little bit to drink and and I was choosing songs and and I knew that she liked the song, and I and I was like, My love, I've got a song for you. She's like, What is it? What is it? I said, it's Adele rolling in the Deb. She's like, I can't, I can't sing that. What are you doing about there's a and she just broke into song right at the right time. It was, it was hilarious. It was so good. And then afterwards, she's fumbled her way through the song. She turns to me and she says, Was it, was it just me, or did you feel like Adele was in the room? So, so they did. It just felt appropriate that that was the that was the song, and, and, and it took, it took a few, you know, verses, for people to kind of get into it, but eventually everyone got into it. So it was really nice. I'm thinking, from your perspective, Celia, you work with patients, and you said that when you often the opportunity to go in and do the death certification. Is your time to say goodbye? How else do you say goodbye? Because this impacts you as a professional and as a person as well, right? Yeah, I think it is quite tough for us, which I'm just because we quite often have built such a relationship, there's such a tricky time. I think we probably manage it by talking about people with with other members of the team who also knew them, which is a really nice way of doing it. Yeah, we don't often go to funerals, but sometimes we are asked to go to a funeral, and we might, for some of our patients, if we don't need them. Well, go to a funeral. Yeah, yeah, I often reflect how to manage could we manage that better? Should there be different ways? Should we be meeting people further down the line? I have had a few conversations with people where they've maybe seen our bereavement counselors afterwards and wanted some questions about the death or the clinical side of things. So I've arranged to meet up with them and talk things through, which is actually really nice as well. But yeah, I think it is quite hard having that break. So it's almost quite a sudden break for us as well. I reckon people we've got to know, yeah, it could feel like a closed door almost, and that you've been doing so much and getting to know them so well, and then they've passed away, and that's yeah, and they continue. We often talk about people between people we've both visit, you know, that we know in common. We often talk about them. But I also, three years later, that also goes back the other way as well. Like, you know, like, for me, you know, like, I I saw, I saw Charlie every day, you know. And then all of a sudden, like, you say, it's just, yeah, well, that stops, you know. And so, so that's that it is quite hard as well. Going back the other way that this, these people have been a big part of your life through a really emotional, you know, traumatic time, and then all of a sudden, they're not there anymore, yeah, so that we haven't that we're not still thinking ever since, but I think remembrance is nice in that way as well. I think you came to that yes, yes, remembrance. And I think that's a way where we can see people and reconnect, which is quite nice. It is a really nice community remembrance. There's a really nice opportunity to reconnect. And, I mean, we have. Weekly staff one as well, which is where we share, you know, our own reflections as staff members about the people that we've lost in the last week and but I do, yeah, it must be a hard How do you build up resilience to that? Because you're in this role and you're . So I imagine when somebody passed. Most of us have supervision. So we have where we can talk, which is also helpful in the team. Sometimes I wonder maybe we should have arranged a meeting. You know, as you say, it's quite a cut off for you as well. Yeah, maybe there should be something else that we could do further down the line. You can just, you know, just have a cup of tea together, or whatever, like a drop that there, or drop in a cuppa. I think people are always welcome to come to hospice house. And some people do do that. They turn up there, and then we'll find whoever knows and come down have a cup of tea. We have, we have a few people that drop them and say, I cared for this love flow years ago. Sometimes it is really comforting for me to know that they still feel that they can come. We had one thing. He used to come every it was his daughter who died, and he used to come on the anniversary. I think that's a good place for us to wrap up for this episode. Dr Celia, thank you so much for joining us, sharing your stories and insights. We really appreciate it. Thank you. On the next episode, the shift Angela's journey will shift slightly, we will focus a little bit more on Aaron and the rest of the family and how you worked through the bereavement living without Angela. Thank you. You.