Episode Seven - Final Days

In this episode, Aron shares the final days of Angela’s life — the challenges, the tender moments, and the role Hospice West Auckland played in helping them through.

Angela’s primary care nurse, Charlie, reflects on that time and the importance of Hospice support, from after-hours care to the reassurance of a familiar team.

Aron also offers his personal reflections on those last days: the worries, the reassurances, and what it meant to walk alongside Angela through such an emotional chapter.

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 in the last episode, we spoke with Anita and we worked through the changing prognosis and changing condition for Angela. Today, we welcome back Charlie, who you met in an earlier episode. Charlie is Angela's primary nurse. Now, for those of you who are watching the podcast and not just listening, you might notice that we're in a slightly different venue today. Aaron. Where are we? Well, we are at Te Ara, two football club, which is a club that's very close to to Esther and I, and holds some, some special memories for for all of us. Angela's funeral week was was held in this very club room, as well. As our 42nd birthday was held here as well. So yeah, lots of affinity with the football club, and so, yeah, it's really nice to be here. So we thought we'd mix it up a bit. So here we are at the attitude AFC, and today we are sort of going along the journey again with Angela. Angela's story, as I said last episode, we talked with Anita, and things were starting to change and get a bit more progressive for her. Today we're looking at those, what we call final days for Angela and I imagine Charlie, this is possibly where you came into the piece. Even more, a lot of people ask, what are final days. What? What does that mean? Yeah, I guess it means those last days, perhaps shorter than weeks of someone's life. And I suppose there's signs that someone's entering into that phase, irrespective of what their underlying disease is. And so often we see people eating less, drinking less, sleeping more, being sort of less alert in those sort of last days to maybe a week before they die, is that often the period of time where people think maybe hospice, that's when a referral to hospice is important. Yeah, and I think we do get quite a lot of late referrals for people like that, for many reasons, but to think, the beauty of knowing someone well before that time is that you've built that rapport and that relationship with them and with their family, and also you can kind of tell subtle changes in them that perhaps family, who see them all the time don't notice. So when you go back and visit you think they look a little bit different when I last saw them, and that is really helpful from having have known them for maybe weeks or months prior, yeah, and that's what we've we talked about that before, like that to your point, that was exactly what we thought hospice was in the beginning. Was, you know, you kind of wait till this time or, you know, if, and then you guys come in and and help, and so that, yeah, that was that kind of initial shock of like, well, hang on a minute. How quick is this going to happen? I mean, in the grand scheme of things, it was very quick. But, you know, it was like, Oh, are we at that stage already? And it was, you know, and then obviously, we get to experience the, the full offering. Aaron, I'm I'm hyper aware. I know every episode so far has probably quite been quite an emotional journey for you, but I can imagine this one is going to be even more so as we're talking about what is a really, really critical time. And it's hard to know, I would imagine being in there. You're going through these progressions with Angela, and you're seeing her change. You know? How do you get to a point where do you start to have a conversation Charlie and say, now we're approaching the last days of life? Or what happens there? Yeah, I think if it's not been brought up by family, then I might start a conversation by saying, you know, how do you think things are going? Where do you think things are at and and often, people do know sort of where we're sitting at that point. But if not, I guess I'll just guide that conversation. Just say, Look, these are the changes that I think I've seen in, say, Angela today, and compare that to what I saw maybe the week before, when I saw her. And, you know, I think normally, when someone's deteriorating over a certain period of time, that pace sort of continues. Yeah. So I just, I guess, just sort of delving into that conversation quite carefully. And not to shock anybody about time frames, I don't always give time frames unless someone explicitly asks, because it's so difficult. But I suppose it can be helpful to know why we're looking at days, weeks, months. So Aaron, what were you noticing? Were you observing anything? Yeah, I think it was so challenge. One is quite hard because you're kind of in it every day, so you kind of, you know, you don't, you don't get to notice too much, but you know there was, there was the lack of eating, and then lack of, kind of needing to drink, talking was pretty much gone, you know, it was, it was very much, you know, like facial expressions was, was a way of her communicating. And, yeah, there was just this kind of, I guess she no longer kind of needed us like, you know, we'd been doing all of this stuff, and now everything kind of, I guess, is it shut down, I guess. And yeah, so you just kind of noticed there was not as much need for us anymore. I can imagine eating less, drinking less, talking less are all quite scary things to to notice. Yeah, and I think also because, because you have that, you still have this prognosis, right? That's, you know, that had gone from 18 months to two years, that had then plummeted to, you know, to six months. And you're like, it's only been three, you know. So you're like, Well, it kind of can't do that, you know, but, but kind of inside, you know, and we're having these conversations anyway, and so you're kind of prepared, and you're just kind of on. You're on high alert, because, you know, you're like, Well, what, what's going to happen next? But you also feel, you also kind of feel a bit useless, because, because you've gone from doing all of these things every day to doing nothing, you know you're, you're literally just sitting there waiting and, you know, in talking to her and stuff like that. But you've gone from just this absolute chaos of doing all of these things to just sitting there waiting, you know, and literally just waiting for someone to pass away. And how's the are you talking with the kids and letting them know what's going on? Yeah, so, so they were, like, said before, like, we, they were just a part of it. You know, they were, they were there through everything, you know, Angela, Angela's hospital bed was in our lounge. So she, she was there, you know, there was, there was no, there was no hiding it or anything. So they, so they, they knew we'd, obviously, we had the, the assisted dying. So we, you know, we talked to them about that. And so, you know, we, we, we kind of got to that date. And so, so what happened with the assisted dying? Let's talk about that a little bit in terms of where you and Angela sat with that. So that was so that was a decision that Angela made really, really early on at diagnosis, where she, she said, I want to do assisted dying. Obviously, it was still relatively, you know, new, and not really, you know, out there, but, and her reason for wanting to do that is because, because her mum had had passed away previously, and had in a two week period and had suffered quite a lot, and she didn't want, she didn't want us to see her suffer. So she made the decision very early on that that she wanted to do assisted dying. So there's so we went through the whole we went through the whole process with her for that and getting all of the approvals and and all of that kind of stuff. She She, she picked a day, a very hard day to, you know, for our family to kind of navigate, not something that you, you know, have to have to deal with on a regular basis. So, so, you know, you kind of managing that and, and when it came time she, she decided that that, no, she, she wasn't going to do it. And that was when I say, she decided at the last minute. It was literally the final minute when, when the doctor came and said, Angela, you know, this is what's about to happen. Do you want to go ahead and and there was no acknowledgement from her whatsoever, so, so that that didn't go ahead. Um. Yeah, and I don't, I obviously won't ever know the reason why she didn't go ahead. If I, if I had to, kind of guess, I would suggest that the way that we looked after her, and she knew, you know, she knew that we were okay with looking after her and and she wasn't suffering. And so, you know, I think, I think she wanted to just to have as much time with us as as possible, which is, which is what we got. So, yeah, Charlie, I know we, we often get questions in terms of assisted dying and where hospice sits with that. Often I get asked, do we provide it? Can you explain a little bit what our stances were and how we support people through this? We, as you say, we don't provide that service, but we very much support people who want to look into that option or go through with that option. So we have to wait for somebody to bring that up with us, and we're not able to sort of suggest that as an option. But then if someone does bring it up, then we'll just have a bit more of an in depth conversation about what that means for them. And then often I do offer to make the initial referral myself, because I think it can be quite confronting, asking someone to make that phone call, and then they'll get called by the assisted dying team, and that process will start, and we will support people throughout that journey, so through the assessment, through going ahead with it, and supporting families After as well. Yeah, can you have to be agreeable right up until the time? Hey, yeah. And so the I think the dicey part we faced with Angela was because of where her disease was in her brain, her communication was really deteriorating. And certainly that happens with most people as they're nearing that end of life, final day's phase, but with her, because of her disease, that was much more pronounced, and so our concern was that she wouldn't be able to give or not give consent to go ahead, and we really wanted to do everything we could to ensure she had that last decision. So I think we changed some of her medications, and I think you guys were quite satisfied that she was able to sort of communicate in her own way that she didn't want to go ahead with it, which I think was great. And because of my worry was that if she hadn't been able to have consented, that you would have been left with a feeling of, oh, we should have done it sooner. You know, have we missed the boat on something she really wanted. Yeah, yeah. And, I think, and that was, that was, that was kind of a really massive part of it, too. And the same with her throughout the whole journey, was, was Angela was in charge of all of these decisions, you know. So who, you know, her funeral, you know, talking to the kids, just, just everything that happened, you know, down, like getting carers and things like that. That was all Angela's choice, you know. And same with the you know, same with the assisted dying thing. And then it was her choice not to, not to go ahead with it. And I said, we got, you know, it meant that at the end, we knew that we had done everything that we that she wanted, and we got to spend as much time as possible with her. And yeah, and for her, it was around her family, not seeing her suffer. And so did you have a bit of validation when she said no, that you felt like she was comfortable where she was, yeah, like, like, the the assisted dying thing was meant to take place at four o'clock in the afternoon. At no stage during that day did she kind of say anything to us, or, you know, so in I can't begin, I'll never be able to ask her what, you know, what the reason was, but I feel like that was the reason we we we had talked about it with her so Shui and I had had conversations with her, and, you know, to kind of make sure that she was still okay with it, and but also make sure that she was okay with what we were doing and how we were handling things. And, yeah, so I think, I think that was her way of repaying us. She, she knew that part of my thing was, I want, you know, I want to have every moment I possibly can with her. And I, you know. And I think when it came to that decision, I think that was, that was a big part of it was you guys. You guys have got this, and so, you know, and I'm comfortable staying, and I and so I'm going to stay, and you guys can have, you know, every last moment it turned out that it was six days, you know, so, six days later. But at the, you know, on, on the, on, this is the dying day after, after the doctor had left. You. Uh, we got which she, she kind of perked up, and, you know, she still wasn't able to communicate, but she, but she could respond, and she, you know, and we got to have some, we got to have some laughs with her, you know, and that. And there was this kind of period from, you know, kind of 430 that afternoon until she went to sleep that night that we, we we just got that. We got this really nice period of kind of four hours, and, you know, where she just, yeah, she was just really kind of happy, I guess, and, you know, and communicated more than she probably had done in the in the days, you know, kind of before. And then she went to sleep that night. And then that was, you know, that was kind of it, you know. And it really went into, there was no real communication. From then, it was sleeping all the time and and certainly no eating or anything like that. And, you know, for that, that six day period, yeah, which is another sign of we're entering the last days of life, so sort of a altered state of consciousness, I guess a very, very deep sleep, and she was having some medication. But I guess our aim wasn't to induce that sedation in her, and that was part and parcel of her sort of deteriorating in general, and entering those final days, yeah, we'll talk a lot about the relieving suffering, or Angela not wanting to suffer, which I think is probably common with a lot of the people that we support. And there are things that we you know, hospice is all about quality of life and symptom management, where we can and thinking medications and things that must get to a point where she can't swallow, what happens then? So we use a subcutaneous route for those instances. So when somebody can't swallow because physically, their swallowing ability has changed because they're too weak, or they're not conscious enough, or there's some other, you know, medical reason why they can't. And we pop medications into a pre drawn syringe by one of the local pharmacies, and that sits in like a little battery powered syringe driver, and that runs into a line that just goes in under the skin, normally in the top of the arm. And we teach families to change that syringe every day. And then we have another line where, you know, people like Aaron can give a top off of medication. So if Angela gets a little bit of pain, sort of here and there, then he can give some medication and through that line to keep him more comfortable. And we review the prescription in that syringe driver regularly. And if someone's needing a lot of top up meds, then we can increase what's in there. Yeah, well, in because she was, because of her condition and where her terminal was, she was having lots of tremors, and then, you know, she was doing things like scratching herself. She was in, you know, she didn't know she was doing it, and she was, you know, and so, you know, so we had to kind of stop that, because it was, you know, it was getting really bad, so we're managing that. And it was, we share. And I once we learned how to use the syringe driver, we would joke with her and be like, well, we're your doctors now, and look what we can do, and we can, and she'd just be like, and I think that's what Ron has said to you. Like, when you walk in the door, she'd relax and she'd be like, yes, Charlie's made this process sound quite simple and easy, you know. So we're going to draw the lines. We educate the family. Yeah. What's it actually like, to be fair? Like, I mean, you're not having to put the line in or anything like that. You are just kind of plugging it in, and it's and it works. You've got to change the batteries. That's the admin of it is a little bit stressful. Does you kind of go through back? But it was really, really simple, you know, like, I said, like Cheri, and I kind of felt like doctors and, you know, it was okay, clipping it out, popping a new one in, and, and then I think what, what was really great is, you know, like Charlie said, we were having to change the medication all the time. And so, you know, that would be a discussion with, with Charlie, you know, every day, almost every, you know, every 12 hours, kind of thing, like, Hey, this is happening. Do we need to change it up or down, or or whatever? And you know, it would be a phone call and, you know, these things would be made up and collected, you know, for us, and dropped off and stuff. And it was just yeah, like, that whole thing, just just to make her as comfortable as possible, was just became, you know, became the focus. But like, the help and stuff that that we got around that was awesome. And you've said, you know, talking with Charlie every 12 hours or so, but Charlie's not there. 24/7, what happens in the middle of the night, or, God forbid, one of your days off? Charlie? Yeah. Do you have days off? Um. Um, so, so a couple of times throughout, we think When Angela had a couple of falls, not that she would admit that they were falls, but she had some falls. And, you know, so Charlie is not there all the time. And so, you know, so we'd ring that the oh, 800 number, you know, in the first couple of times you like, Am I overreacting? Like, you know, should I be doing this, you know, and all of that kind of stuff. And you would ring, and, you know, after the first couple of times, you know, you'd recognize the voice at the other end of the phone, and you'd be like, Look, I'm not sure if I should be ringing. I'm like, Of course you should be ringing. Like, that's totally fine. And it gets to a point where they know who you are, and they're like, Hey, Aaron, how are you, you know? Yep, that's, you know, there's, there's this familiar familiarity. And you, you don't have to explain the story every time that, you know, this is my wife, Angela. This is her condition and stuff like that. It's cool this, you know, this is where she's at, so this is what we're going to do. And a lot of the time, you know, there was no kind of action required. Nobody needed to, you know, to call Charlie and say, hey, you need to. It was more of a reassurance, you know. Okay, yep, that's normal, you know. But when she, when she started drinking less and eating less, I was like, what's going on? So it was, hey, this has happened. I don't, I don't know what's going on, but that's okay. Like, you know. And I think the words were, she, she needs that less and less now, and that's okay. You're like, okay. So it's just this reassurance that actually, like, yes, we're getting close to the time. But it's, you know, it's nothing to kind of panic about, because our o8 100 number is 24/7 and it's manned by clinical nurse specialists, yeah. And I think, from the day team point of view, we hand over, you know, late afternoon, and we'll flag patients who we think are perhaps going to have a bit of a tricky night ahead from symptoms, all we know are in that sort of final phase. Just to give them a bit bit of a heads up, which I think can be helpful, because there is a big team of nurses on the after hours numbers. There might have been someone you haven't spoken to before, so sort of letting them have a chance to read through the notes and familiarize themselves can be helpful. I think it sounds like the reassurance that you get from just knowing that there's a number that you can call, even if you don't need anything, but you need to be told this is okay, yeah, and I think it's you know, because I would ring, questioning whether I should ring or not, but, but you were never made to feel, yeah. Like, ah, it's this guy again, you know, hello, Aaron, yeah, yeah. Like, why are you calling again? You know, it was like, You're completely justified in calling, you know, and this, and here's the information that you need. So, yeah, it was really, really good. I'm thinking about the, you know, not only these physical changes that you're seeing and having to adapt to with Angela, but there must be a lot of emotions going on as well, and thoughts and feelings and questions for you, but for Angela as well. I mean, I can't imagine having a conversation with the nurse around you know, my loved one starting to enter these last days of life. What's going through your head? Aaron, a million things you know. So and I was, and I was very mindful of, of like, I wanted to have those conversations because that's, that's kind of how I work. I need to know what's kind of going on and what to expect and stuff like that. I didn't want to have those conversations in front of Angela, you know, and be like, Well, how long has she got left Charlie? And, you know, that's just not a conversation, you know. I wanted to have in front of her. So, so we would have those conversations kind of at the end of the driveway type situation, and, and, and it was more just so I could best be prepared for what was coming, and to know that well, she's not okay, that she's okay, you know what I mean? And you know she's if anything goes wrong, you know, if she is in any pain, we can, we can fix that, and that's okay. But you know, there isn't much time left, you know. So you can kind of be prepared for it, as you can be, because ultimately, you're not prepared for it at all. But yeah, and what you said before, Charlie, you said you don't give, like, a timeline to people, unless they really want one. I'm just thinking back to Aaron. You guys have been told it's two years, 18 months, and that keeps coming down, but the last year here, she's got six months, and we're three months into this, and now you're facing her last days of life. Yeah, are you. Feeling robbed like probably now, yes, at the time, it's not, it's not, you know, because you're just, you're so, you're so in it, you don't get to think about any of that stuff, if I look back now, yeah, 100% but I wasn't, you know, I guess I'm not robbed of kind of a year, six months, or whatever, like, you know, we've been robbed of an entire lifetime, you know, so in that, in that bigger picture, I think in hindsight, if I, you know, if I think back to when we were very first given a prognosis and we asked, you know, we're like, what? Because everyone does right, how long? How long has she got? When I look back now, I wouldn't want to know, you know, because it's just best guess, you know. Like they no one can tell you, you know, you know, even a you know, if I'd said to you on the on the 18th of January, how long has she got, you couldn't actually tell me, you know. Be like, well, we don't think it's long, you know, and so, and I think, and maybe that's just because it went from two years to 18 months to six months in the space of a month. Yeah, you know, maybe, maybe that's why. But yeah, I think if I looked back now, I wouldn't, I wouldn't want to know, but being, being in it and having those conversations with Charlie, because I knew it was coming. And I think, you know, when I look back at it now, I think, December, you know, December, I kind of knew. And I think obviously that's, that's when I started having conversations with you and say, Well, you know, I'm noticing this. What does that mean, and and kind of, where are we at? But, yeah, I mean three months out of out of two years and two years isn't that long, but it must be a hard conversation for you to have. Charlie, yeah, yeah, it is, but I think it's a really important conversation, important part of our work. You know, it's our work as the nursing team isn't just about the medication and all of that side of things. It is about the support and preparing and making sure that people do know what's happening and where we're at so it can be and I suppose you do have to sort of pitch it slightly differently depending on who you're talking with, and you just take your cues from the person you're with. And like I said, that's the the ideal is knowing someone for a period of time before you're needing to have those conversations, because it does feel a little bit more natural, rather than just sort of like a tick box exercise. I like your point about reading off them as well, and what you said before around, I'm starting to notice, because it sounds like Aaron, you kind of knew what was happening, and I imagine that's quite common, but you need to be able to for you to then go in and maybe validate that or reassure them. Yeah, yeah. I think in the, you know, as nurses, we don't underestimate how much we expect of family to be carers and what they need to be doing when someone's dying at home, you know, having to manage a syringe driver, that's a lot, I think, and knowing how to give medicines and what to give when. So we never underestimate the pressure that people are under. And so I guess having those conversations hopefully makes that whole process just a little bit easier. And I remember, I remember, you know, and from very early on, when it was, you know, giving her the steroids and stuff that she needed and all the other medication, like, like, there was a stress that came with that right, because you were like, I need to get this right. Because if I don't get it right, then, then that doesn't help her, you know. And maybe this, you know, maybe this doesn't get better. And so, yeah, there was, there was pressure around it, but I guess, you know, did you weigh it up? It's either I'm doing it or she's not going to be at home, you know? And so the, you know, that was kind of the trade off. And yeah, it was, yeah, it was pretty stressful. And I remember saying, Am I doing this, right? You know, are we? You know, are we? And I had them all in a little pill container, and I right, I'm going to get to Sunday in the pill container, and then I'm going to go back and I'm going to restock them all up and and also, I think the stress that comes with with giving her the medication, because he's a person that's used to just taking their own medication, and now they're trying to figure out what's going on. So, you know, they've got to trust that, that you're doing it right, too. And and also, in terms of Angela's condition, as it got further, she she would forget what they were you. You know, and she'd be like, Well, what's this that you're giving me? Like, okay, well, this is this one. And, okay, and what about this one? And you're like, Okay, well, this is this one. And you you know, see him to talk to talk her through it as well. And then, like, so it gets to the point where you're like, you know, can she swallow these? And we had that conversation multiple times, you know, was I don't think she could swallow these anymore. And then you start thinking, I don't think she's going to be able to breathe properly. And, you know, and you start going through all of all of those conversations in your head. So, yeah, Aaron, I imagine at this point you're also being the communicator to the family and friends and all of Angela's networks to let them know updates on what's happening. So you're not only living through it and and hearing it and adjusting, but you're having to then communicate that out. Yeah, so we had a, we started off, you know, from an initial diagnosis, we had a, we had a friend, Facebook, messenger, chat, and we had a and we had a family one. And so then it was like, Okay, this has happened. And and then, you know, you kind of update each one, and then it was like, Okay, there's quite a lot of admin involved in that. And so then a very good friend of ours set up a team Ange Facebook page, and that started out initially as a way for people to be like, I'm I'm going to make dinner, you know, on Monday night, or I can help take her to, you know, who her radiology appointments and stuff like that. What it turned into was a way for us to update people. And it was kind of, you know, it's kind of weekly updates, you know, and, and so when I look back at that page, you can kind of track, you know, kind of the very quick progression of, you know, but, but that was, that was the that was the easiest way, you know, easiest way to do it. Are there lots of people wanting to come and visit her, to to see her, and potentially say their goodbyes? Yeah? Like, I mean, our house was, our house was, was always full. And I think up until probably the last, the last week, and then we, you know, we did kind of because at that, once I got to that last week, we knew something was going to happen. Yeah, we didn't know when it was going to happen. And so, you know, it we, we just cut it right off. And it basically just became me and the kids, Cherie and in who girls and Angela's dad. So it just really, really shrunk down to the people that and and my sister as well, who was helping look after and so it just, it went from this kind of, you know, house full of people to, you know, to kind of the beer, necessities of who needed to be there. And for that time, it's all about comfort. For Angela, she's, she's in bed most of the time. You said, altered state of consciousness, yeah. What does that period look like? Cello, I guess, really, not having any communication from Angela, hey, but assuming that she can still hear hear us, she's still Angela. And I think that's really important, that for me, when I'm caring for someone in that stage, that I'm still talking to them. When I'm doing things, I'm still as I am, if she was still able to talk back with me? And I think that's can bring comfort to people, I guess, yeah, just not always needing to have a quiet environment. You know, she's used to being in a busy house with people around. Then that's what probably brings her comfort as well. And she always looks so peaceful and settled having a house full of people. So I think that was great that you could maintain that sort of normalcy for her as well. Yeah, I like, I said that the hard, you know, like, I said, you know something's coming, and you know, you know it could happen in the days. I said, Before, the really hard bit is, is you're you're just not, you're not busy anymore. And so, you know where you could have those moments because you were so busy that it kind of took your mind off it all of a sudden, you're just, you're just sitting and you're just waiting, and you're waiting kind of a six hour period for a syringe driver to need to be changed, to kind of give you something to do, you know? And so you're just kind of, I don't know, it's like a waiting room, you know, you're just sitting there waiting, but that's now your focus. And. And any kind of get stuck, you know, you're like, Well, what do I do? And so, you know, you I tried to, you know, tried to talk to her like Charlie said, and just talk to her like she was there. And so, like, for, for two months, I slept on the couch and in the lounge, you know, because we had lots of people coming down from up north that to help and stuff like that. So I, I slept on the couch, but I also didn't want her to be by herself in the lounge, so I would, you would sleep on the couch, which wasn't the most comfortable place to be, but, but what it also meant is that when everyone else had gone to bed, I could have a little bit of time where there was no one else, and like in the morning. So she'd wake up at, I don't know, five, 530 she'd wake up and and I just always wake up at around the same time, and I just look over and she'd be sitting and she'd be lying in her bed, and she'd just be looking at me like, you don't even go for a sleepover when you're a kid and the other person's still asleep. And so you gotta kind of sit there and wait it was like that. And so she'd be kind of like looking at me like, can you like, hurry up. I need kind of someone to talk to. Or I would have probably been snoring, and she was probably mad about, he's like, shush, yeah. But so I got, you know, I got to go and have little moments before the rest of the, you know, the rest of the community, you know, it turned up. And so, you know, we would, I would sit and hold her hand, and, you know, we would, I would play her songs. I I asked her if she wanted to, if she wanted to hear my, my eulogy for her, and, you know, and read that too. That's one of the hardest things you'll ever do. And she was, and I think going back to like, she didn't want us to see her suffer. And very early on, when she said that, the the thing that made her sad was that when she was gone, that she would just close her eyes and and not wake up. But we would, we would all be left here and be sad. And so everything was everything from her was about us, you know. And so she, you know, so she wouldn't cry. You know, she wouldn't. You know, she wouldn't. She wouldn't get upset, you know, she, she would let everyone else get upset around her, you know. And yeah, it was, yeah, those are some of the, just the really, you know, I've said it before, like, there's really, a really horrible time, but some of them, some of the best moments of our, of our whole relationship were, you know, in those moments. And I can imagine how hard it is for you to find your moments with Angela when she's got this entire community around her, or wanting to see her. So to be able to take those 5am with her, looking at you, going, you know, and then, and then your evenings as well. And as she's going through these these days. No, she can't converse with you, but you're still able to have those treasured moments, really hard, but really special and important as well. And probably something that I imagine would have brought her such great comfort too. I think we try and be quite cognizant of that as well, not over visiting, you know, making sure that patients, families have their own space. We don't want to be in there all of the time if it's not necessary. You know, knowing that this is a important time for everyone, and so being I always say to people, I'll come if you need me. If you don't want me. That's absolutely fun. Don't take it personally. But you know, respecting that you do need some peace, that when things are settled, actually it's okay that we don't come visit. Yeah, Charlie, I've got a question for you. It's really hard hearing the story, and this is probably one of many that you deal with on a daily basis. How do you manage and how do you support yourself and find strength? Because I can imagine this impacts you as well. Yeah, and certainly, I think when you're caring for someone who you can sort of see yourself in, you know, we're of similar ages, similar sort of life stages, and, you know, and you think if we'd met in a different scenario, we probably would have been friends and gone out for a drink together, yeah, and when you've been quite had a quite intense relationship with someone and their family, that is very difficult. And I think. That's natural. As much as we try not to let that show too much when we're in someone's house, it's natural for us to get upset and feel emotions around that we're really lucky at hospice, that we've got such a great supportive nursing team. And often, if I'd come out of a visit that I found quite difficult, I would just ring on my colleagues and just offload to them. My husband gets quite a lot of offloads in a confidential way, but I'll just sort of be like, this is, you know, day was a day. This is what happened. And then we do get supervision as well from clinical supervisors, just to help us deal with, I guess, the cumulative effect of dealing with situations like that and day in day out, yeah, I suppose for me, my driving force and to always help me with my emotions, is that as awful as that situation is, hopefully what I'm doing can make that situation as best as it could be, and enabling someone like Angela to be at home and support someone like Aaron to to do that for her, which is a pretty big gift that you Yeah. I mean, I think we do a very small percent of that work. It really is the families, the carers, the support crew within the community, that take on that huge burden, and we're just there to sort of point you in the right direction. Really, I think there's a statistic somewhere, because I always like statistics, and I can't remember the actual number, but I think it was less than 10% of caregiving at the last when you are at the end of your life comes from professionals or from paid carers, and the rest of it is from the family, the community around you. So I think that speaks to to how much you know, like you said, Charlie, we're there for a small bit, but just how much your community and and family support you through it. Hey, when I moved over here from the UK and started with hospice, I was actually really surprised about how much care families give and how just happy they are to do that, and they'll just, it's just sort of expected, and that's the norm. And I think, you know, it takes a lot, and you're trying to juggle everything else, and you've still got bills to pay, and you've got kids to take to school and all of that. So yeah, we certainly understand how hard that can be, yeah, and I think, I think that that's you said before, like, the community and the people and stuff like that, and, you know, like, and people would come to me and say, you know, it's great the way you're looking after her, and you know, you're doing such a great job. It wasn't me, you know, it wasn't, it wasn't just me there, you know, it was countless people that you know, friends and family, that would you know without them, but we wouldn't have, you know, we wouldn't have been able to do it, but, but I just from, from the day she was diagnosed, I was like, This is what we do. Like it wasn't, it wasn't. It was never in question, you know. And I think I remember someone you know, quite late on, someone said, Have you thought about, have you thought about putting her, you know, just respite care? I was like, She's not going anywhere, like, you know, and people would send me home like, You must be so busy, like you need to, you know, you need to slow down. I'm like, You know what? I've got however long I've got to slow down and rest from this. At the moment she is, you know, she is my focus, and making sure that, that she is okay, is, you know, is far more important than me. You know, having, you know, having a break, you know. So, yeah, I remember I used to say to you, you're doing a great job. You'd be like, of course, you know what, of course I'm gonna do. But that's, it's still hard. And I think, you know, I always say to people, don't forget what you have done, because that takes a lot, you know, physically, emotionally, spiritually, mentally, to to do that. So, yeah, just take that compliment Absolutely. And there are, there are some people in some families that maybe they can't, well, there are different things, circumstances for them where they can't or don't have the means to do it. And I think of, you know, we have some patients that have been under our care for, you know, a lot more long chronic illnesses. And so that caring role is extended too, and I wonder what happens in those situations for carers, because it's, you know, it can go on for longer, yeah, and you can't, maybe have the time off work for that long. Yeah. I always like. I can being a carer for somebody who's terminally ill as being in a job that you never go home from. Yeah, you don't get to finish at five and go home and go to the gym. You don't get to have annual leave. You don't get to have your weekends off. Is 24/7 and I imagine you're sort of constantly on edge, thinking, what does this mean, and what does that mean, and what will tomorrow bring? So, yeah, people amaze me at how they deal with that, yeah, well, and I think obviously, since, you know, since going through all of this, like this, you know, like, there's lots of reflection as well, you know, like, you know, did I, you know, would I change things? Would I do things differently 100% you know, I would have said it before, like I would rely on people to come over to then go and do stuff. And if I look back at that time, I think I missed out on, you know, I missed out on lots of stuff, and then I have lots of questions that I would like to have asked Angela and more conversations and stuff, but, you know, but I just wanted to make sure that she was okay, so it was all right. You're here. I'm going, I've got to do this and this and this, and I think, you know, if, if I had to redo it again, this is an awful thought, but if you know, if I had to do it over again, I think, you know, I would delegate a lot more. I would, you know, be saying, you know, because people wanted to help, you know, people would ring and say, What do you need? What can we do? And at the time you like, it's to be honest, actually, the worst question you can be asked, you know, if you know, so for anyone listening or watching it, don't ever ask someone that's going through this, what can I do to help? Because we don't know, you know, it's we're not thinking about that. We're thinking, I've got to go and do this, you know? I think someone, someone said to me, the best thing someone can do to help you is just go and do something, you know? And, yeah, that was because it kind of puts this responsibility on you right of like, now I've got to think of something for them, you know, for them to do. And so lots of the times I'd be like, no, no, you find what you you know, come over. That's fine, because then it means I can go and do something. And I, in hindsight, like, I would have delegated a lot more and and got to spend a lot more time with her and and stuff like that. So instead of asking, What can I do? Is it around offering just practical, go and do practical things, and what might they be? You know, what was, what would have been helpful for you going through this? Aaron, I mean, one of the big things, especially near the end, was, was people going to the pharmacy? Yeah, meds changing all the time, yeah, and, you know, like, I said it was as every time I was I, you know, and the pharmacy was, they were amazing, you know, and so stuff like that, like logistics stuff, you know, like going and picking up groceries and stuff like that, like, and I've had people come to me since and be like, Hey, I've got a friend that's going through this, you know, through the stuff like, and I want to, I want to put a kind of care package together for them. What should be in it. And I'm like, this, this, this, this, and this, you know, oh, yeah, yeah. And I would never have thought of that. I would have taken chocolates and flowers. Okay, top five for a care package. What is it? I guess it depends on the timeframe, but I would say adult like this beer would be a really, really big thing. Towels, all I can think of at the moment is snacks, because our pantry was so full of snacks. Like, we don't need chips or peanuts or, like, honestly, we had that stuff for so long. Like, just, I think, just practical things. You know that landlords, flannels, and I wouldn't think of that, I'd be going to food, yeah, food, flowers, oh, maybe a sudoku or a puzzle. But you know, which is, it's that stuff, you know, yeah, you know, come, you know, come over and, you know, some moisturizer or something. And, you know, and do that kind of thing for her and and stuff like that. Like, for, like, for a year, me and the kids could not eat shepherds pie or lasagna. There's probably still two or three in our freezer, because, and it's beautiful. And Bender does want to help, but there's only so many shepherds pies and lasagna that you can so we've got to do variation with the meals as well. Yeah, yeah, yeah, Costco chickens and Costco sandwiches. They're also, you know, it takes a long time to get back into those things, but, yeah, like, like, just practical things, you know, he said, you know, all of those kinds of things that are just so helpful. And, you know, it's. Especially has like, towels, you know, and you go through them so often and, you know. And I think also, like things around, like her wardrobe and stuff had to change, you know, and you couldn't, you couldn't get her dressed in her clothes. She had to have things that you could put over the top. So, you know, I had a friend said, what, you know, I'm, I'm going to Kmart to and I'm going to go and get her some of, you know, some of those dresses are fantastic. Like, thank you, you know, like, that $10 like, but that stuff is so helpful. Yeah, yeah. I think we'll, we'll end on that. Thank you again, Charlie, for joining us for the second time. Thanks for having me join us on the next episode, we will talk to one of our doctors, and we'll say our goodbyes to Angela. Thanks for joining us. You.