Episode Six - Changing Prognosis, Growing Support

In this episode we discuss Angela's rapidly declining health, the emotional impact of constantly shifting prognoses on the Brightmore family, and how Hospice West Auckland provided the crucial escalating support. We are joined by Anita, Healthcare Assistant at Hospice West Auckland, who shares insights about the subtle changes that healthcare professionals often notice before family members do, how the care team ramped up both physical and emotional support for Angela and Aron, and how dignity and compassion were always paramount in Angela's care.

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Transcript

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On October 17, 2023 the bright more family's world was turned upside down when at the age of just 44 a tumor was found in Angela's brain. One month later, they were introduced to the world that is hospice. This is Angela's story walking the final path together a hospice West Auckland podcast. Hello and welcome to Episode Six. Last episode, we were joined by Cherie Angela's sister, and we heard all about her journey in supporting Aaron and Angela today, we are joined by Anita, who's one of the healthcare assistants here at hospice West Auckland. Welcome Anita. Thanks for joining us. Thanks for having me. We heard a lot about you and your colleagues last episode. And my first question before we even hear about what an what a healthcare assistant is, what is a sliding sheet? It's a tool to move. People, yeah? Just, just when people are, you know, struggling with being able to help. Yeah, yeah. We use slide sheets just to move them around a bit or get them more comfortable without having to yank them. I like the way you made that sound really, really simple, like it's just a slideshow. I know I cracked down and I was like, We had no idea it was, yeah, yeah. That's yeah. That was interesting. Aaron was making me think it's rocket science, but hearing you, I think it is. Well, you saw me when, you know, you've seen me use that so yeah, but they Yeah, it is a simple tool. But you know, when you overloaded with and you guys work, you know, you had so much information coming in, and then you've got this bossy leader come in and, you know, and then I'm giving you training sessions, yeah, and yeah. So Anita on that training sessions, what is your what is the role of a healthcare system? What do you do? Well, we really, we're part of the community team. We work really closely with the nurses and the medical staff. And really we just, sort of, we just fill up gaps of maybe when families need some education, you know, just basics of caring for people. Sometimes, sometimes it's, you know, educating about, you know, the end of life process and and because we have to find the right time for those kind of things. So sometimes it's the right time, sometimes it's not, and we have to be able to sort of read the room. Yeah, absolutely. And I we've kind of coming up to this episode, we've been talking about the quick progression for Angela. And am I right in thinking that that you started to come in, or your role played more of a role in Angela's journey as she started to change the Terry rack quite rapidly? Yeah. So I think the the the initial, the initial slide sheet session was, was, was quite early on from memory, when you know that was more just kind of getting her out of bed and helping her more than us at that stage, and then yeah, and kind of that, you know that, I guess That final three weeks, when, you know, when you guys really came in to to kind of bail us out, really. And, you know, remember the slide sheet thing we'd been showing initially, and then we never used it again until that in, until that three weeks. And it was kind of like, where's the slide sheet, and why you guys use, like, yeah, we just, we don't know how. And I well, you know, we, we got taken back through to get I was like, I actually, you know this, we do need to use this now. And another, and I think, and we talked about this with, with Sheree the last episode, I think when you guys, when you guys came along, we were still taking her to the to the shower, and we were still taking her to the toilet and and stuff like that. And I think, you know, Sheree and I both agreed, like we'd probably taken that further than it, than it needed to. But, you know, but we, we didn't, kind of, we didn't know until, yeah, you know, you guys were also trying to keep things as normal as possible for Angela. And, yeah, that's a real fine line, yeah. So that's something that often, you know us, HCA is, or the medical team would come in, you know, we're like, it's getting a bit dangerous now, you're not just for her, but also you guys, you know you'll end up with an injury. You'll end up she'll end up going to hospital because nobody can care for you because you hurt your backs or so really a lot of that is us pre paying families, so we come in, and maybe it was too early, because in your mind, it was like, Oh, we're not going to need this for a long time. Yeah. So you sort of tuck it back, yeah. You know, and I get it, you know. And we often do have to repeat things, because situations change really quickly, and it did with Angela, so yeah, and I think we've reflected a lot on all the stuff that is going on, you know, around Angela and Aaron. There's the administration, there's the medical changes. He's the condition changes. He's looking after the kids. So to then try and figure out using equipment or how to adjust. Caring for Angela, keeping both herself and yourself safe, is really important. I imagine this. The support and education and guidance that you provide Anita is probably one of the most important things that you're doing, and then caring for people, yeah, that sort of practical stuff, yeah. So we, instead of the clinical side of it, the HCA is, are doing the practical, practical hands on, yeah, yeah. And, and no, situations are the same. So we kind of have to think on our feet and use the skills that we have. And then, okay, well, look, I see the way you doing that. Maybe we can do a little bit easier, yeah. And I say, and one of the big things there was, you know, so a lot of the things we were doing was, was, you know, was, was for her, and, like you say, to keep things, to keep things normal. So getting her to the shower, and we and into the bathroom and things like that. And we thought, well, we're, we're kind of keeping her moving, and that's, and that's a good thing, and but also, you know, kind of helping to keep her feeling normal as well. And then I, you know, I remember having a conversation being like, Hey guys, we you can't, you can't keep doing this well, but, but how are we going to shower and how we get, well, actually, you can't do that bit anymore. And, you know, she, you know, we need to, we need to do a bed bath. And, you know, you're kind of this picture, and I could just see a bed bath in a movie, and the nurses kind of just, you know, and it's kind of real creepy and a bit yuck. But, you know, you come through and showed us how to do it and how to move her and, you know, and be as kind of gentle as you know, as we can, but actually make it so actually she does feel, you know, kind of clean and, you know, and respectful and all of that kind of stuff. Yeah, that was a so important too. Yeah, it's about keeping her dignified and keeping her graceful, yeah. And everybody deserves that, yeah. So, you know, really, as a an honor to be part of that, you know, where it can seem like a very small task for someone in my role, where we do it a lot, whereas, you know, just, just hearing your guys, you know stories and how you felt, that really is quite heartening, yeah, yeah. And I like, I think you know when you, I remember when you when you first came, and you're like, right guys, this is what we're doing. This is how we're doing this is how we're doing it, and this is what's going to happen. And, you know, and I imagine that you can't be like that with everybody, but for us, it was like, Yeah, okay, great. And it was like, you know, like, we became this kind of formula, one pit crew, right where was I? Right there, over, and you're doing all of this stuff, and it's like, five minutes, and it wasn't five minutes, but you know what I mean, like, it's just done quickly. But like, you know, I said you I'm sure you can't do that with everybody, because some people are, you know, who does, who does this person think she is? How do you, how do you manage that? I guess it's a skill that we learn. You know, when you're dealing with people, and you just have to be able to read people, yeah, and every situation is different. We don't always know, you know, where we're walking into, yeah, and it could have been good the day before and the next day, it's chaos. So, you know, we just have to adjust ourselves. We also listen to you guys so and observe. So, you know, sometimes we can pick up either this, this is missing, and this would make your life easier, or I'm going to teach them how to do that, and then they don't feel that they have to rely on somebody to do it, especially because you guys were such a hands on family, and you wanted the best for her, and, you know, you did a phenomenal job. And I think that's, I think that's really, really important that, you know, because we, we mentioned with with Charlie is a very briefly that we, we kind of had carers come in on a on a daily basis for a short period, and in some of them were, were amazing, and did a great job. But I think some of them may not have kind of read the room and been able to see that. Actually, these guys have been doing this for a little while, and they've been doing a good job. So me coming in and telling them, oh no, this is how we're going to do it, and we're going to, you know, and this is what time we're going to do it, and all that kind of stuff. Is, you know, was it was kind of part of the reason that that you guys ended up getting involved in the end, because we were like, well, we can't keep doing this, you know. And, and, you know, while you were very matter of fact about what, again, you you said, you know, you read the room, and you knew that, you know, okay, they're not complete idiots. And no, they can't use a slide sheet, but I'll teach them how to do that. But even if you don't want to use a slide sheet, we'll find an alternative, you know. So, you know, often I'm just like, we'll use the bottom sheet. Yeah. Anyway, it's all about just not hurting the patient. Because a lot of the patients are really sensitive and, you know, and when they're bed bound, especially, they get really aching sore, not just from their diseases, but, you know, from being stilled, yeah, and so, you know, people don't realize that and how those moves are big moves. Now for like, for Angela, that was a big move, yeah, being rolled over and being cleaned and changed and that. But she was so beautifully cared for, you know, and you guys had already put that groundwork in, whereas, you know, sometimes I have to start from the very start with families. And yeah, so that that is, it's an honor to have that role that we can go in. And yeah, even though I can be bossy tart, sometimes, sometimes it's needed in the situation, but, uh, yeah, yeah, you can walk into a room and go, Okay, someone's got to take control, or just take give some some advice, and then others, it's reading that situation. And I, my experience in the work that I've had with with yourself and our other HCA, is you guys have such an innate skill of being able to read the situation and adapt accordingly. And you guys go into quite often, what are the high pressure situations for Angela, it's when she's really started to deteriorate that you guys are coming in. So I imagine you're coming into some really challenging situations and trying to help people through that? Yeah, I'm also hearing the it's on your terms, you know, and you guys are trying to work with the patient or the family to come up with a way to care for them that works. Well, yeah. I mean, obviously hospice, we have a holistic tablet where we, you know, really is about everybody is different, and what are the needs of this family and this patient? You know, I think we all just learn to adjust ourselves with, you know, with different patients and their families. And like you say, we're coming into pretty high pressure situations. Yeah, we don't know how people are going to take on board, you know, the info too, because often you're full. I mean, I remember when I met you, you were, it was the peak of, everything's changing. It's not how we thought it was going to be. You'd had a few incidents with, you know, other carers coming in which didn't work for your family. And, you know, we just come in and what can we do to help? Yeah, and sometimes it's just noticing little things. That's a, hey, I can show you how to do that. Or, I think you might need this equipment, yeah? And I think, and that's, that's a massive part of it, right? Because, because we were in it day, day to day, right? So, so we, and we've talked about this before we you don't, you know, if you live with someone every day, you don't notice the changes until someone kind of points it out to you. And there was, you know, the moving, the moving her to the shower and things like that. Do you know that was fine yesterday, but now all of a sudden, that's, that's not okay. And you're like, oh, you know. And there would be times where, you know, like, there would be times where I would take her to the shower, and it would be easy, and it would be and, you know, you'd be, bang, bang, bang, done, and everything's done. And there'll be other times where, like, where I would get her into bed, and I would, I would, but it would have taken me, you know, nearly an hour to to to get it to the toilet, and I'd go to the bedroom, and I'd just have a meltdown, because I'm just like, yesterday, this was easy today. What, you know, what was going on? So you know, not only the struggle of having to, you know, of those things being difficult to do, but also the What the hell is happening like, you know, my, you know, my strong, beautiful wife is now struggling to do these things, and the the kind of enormity of that, and especially in, you Know, said in Angela's case, you know, a month before, literally, a month before. I have a I have a video on my phone. So for some reason i, if you remember this, for some reason, she started telling everybody that she wanted a lobster bisque. Now, Angela never in a million years. Has had a lobster bisque. In fact, the only time we've ever tweaked about seafood was when we first started, we first started dating and, you know, and you're just kind of finding out stuff. You're like, you know, do you like muscles? Do you like this? She's like, I thought, No, I'm actually think I'm allergic to muscles. You're allergic to muscles. She's like, well, I'm either allergic to them or I ate too much at once. You're like, Okay, well, yeah, interesting. And, and then all this, you know, she I want a lobster bisque. I can't just pop down to pack and save and get a lot of this, exactly right? So I didn't know what it was. Now, it's very fair. It does fancy, don't you? Lobster piss. I want a lobster pisk. Now, a very good friend of ours. Logan is a is a chef. So I went to Logan, and I said, Logan, Angela wants you to make her a lobster bisque. And he was like, Yeah, cool. I'm like, done. What do you mean? Cool? Like, what's, what's a lobster bisque? Logan makes her this lobster bisque. And he comes around, he brings it and and she is, she's sitting up, she she's, you know, she's kind of propped up, but she's, you know, but she's sits there, and she's got a little tray, and she eats this lobster bisque. And just, she just loves it, like the joy on her face from this lobster bisque. But she's, she's feeding herself, and she's, you know, and she's sitting up and she's talking, and it's, you know, it's Angela's voice and all and all of that kind of stuff. Well, there was some nerves around. Was she going to go into anaphylaxis, or is she a merger? Yeah, thankfully, she wasn't. But you know, a month later she's not here, you know, and, you know, but, but we, you know, being in there, we mean, it's hard to say you didn't, you didn't see it, but, you know, but it was kind of like a week later, you'd kind of go, oh, that's quite different, you know? So you'd see the sudden, like the the one extreme to the other, but you wouldn't see the day to day, the challenge, or maybe, and you did talk about that with Cherie and, yeah, yeah, that's it, is? It's true, because you're right in the flick of it, yeah, you're also hopeful, yeah, you know you're trying to do the best you can do. And you know you're taking on information. You know, all day long, your phone's ringing, you're dealing with the admin, you're dealing with, and then also dealing with your own emotions. Of my wife is really, really sick, and I can see now and then, you know, share noticing, because she'd go home to Royal car, and then she come back, and, you know, things have changed from last week. Whereas it's hard to see, and that's a lot of our role too, is that we are eyes and ears, really, and we notice changes, and we report changes. So I might see someone one day, and then the next day there's absolutely big changes going on. And the family might not they're like, oh, they just photographed. Bit tired, or they've had visitors. But it's recognizing. So we learn how to recognize. It's a particular, you know, palliative care thing. I think I've learned from working in palliative care how to recognize that these things that are so I think we're going to change, just like I came in and washed around and Bosch around said, we're not doing the showers now. Yeah, 100% so we're shutting that down, you know. So how was that for you? Was that reassuring to have someone like Anita come in and and guide you through it, or tell you it's okay for Angela not to have a shower? Yeah? Yeah, absolutely, like, because I see you kind of, you kind of need to be told to a certain extent. Because, like you said, you kind of, there's this hope, right? Like, you know, she's, maybe she's just tired today, and then it's like, actually, guys, we can't keep taking her to the shower. It's that you're not, you know, you're kind of, you're not helping her, but not, you know, but then not coming in and taking over and being like, you know, to make us kind of feel like, well, you guys have been doing a crap job. So actually, I'm going to have to come in and take over. It's like, hey, we can't do this, but what we can do is, is this and still make it feel really good, yeah? And it's just doing it a different way, yeah, yeah, yeah. And sometimes you need that, you know, like, because you would have carried on because you love your wife, yeah? And you would have been carrying her to that, I could say, I could imagine it. You would have been carrying her to the bathroom. I would have come in and freaked out, yep, ripping on accov, all sorts of issues. But, you know, like, really, it's sometimes it's just been able to recognize that. And that's what our job is, is that we go, No, I think we can find a different way now, yeah, and it's always coming from that place of love, and you want to, yeah, we talk through those special moments, you know, the kisses on the cheek every time we would lift her up. And you don't, you know, you don't want to let those, you don't want to let those go, you know. And because once she goes to, you know, we're doing bed baths and. And stuff like that. You're not having to lift her up anymore. And so those, those little moments kind of going but that they have to, because, you know, the practicality of it, you know, just doesn't honestly, yeah, you guys had as a family, though, never stopped. And it didn't matter if she was getting up or not, you guys were by her side. She was just, ah. I just was blown away by the care that she was given, and she was beautifully cared for, and that's what we want. So, you know, if I can go and, you know, educate families just you know about these basic things that aren't so basic, but you know, you know, and when you're full of grief and you're full of stress and things, it's hard to take things on sometimes, or to retain the information. So, you know, we're just there as behind the scenes, really, we just come in and and, you know, like I say, I was, you know, the final three, three or four weeks with, with your guys journey, really, and it is a tough time. I remember you feeling the tension in the house. There were things that you're worrying about, and is this going to happen? Is this not going to happen, kind of stuff, but yeah, it's just just Yeah. And I remember, like, even when, when she passed away, we were very lucky to also get to be hands on afterwards. So when, when she was at the at the funeral home, we got, uh, Sheree, and I got to, got to dress her and, you know, and, and we got to do a bed bath. Now we, we learned that from you, right? So that was another that, that was another thing that we got to do that if we hadn't learned that from you, we it's something that we wouldn't have got to do. But when our funeral director said, Okay, well, you know, we're going to address her now, but before we do that, we'll, you know, we'll give her a bath. And me and tree were like, we got this, you know, and we were, you know, we were in and the funeral directory friend just stood back and just let us do it. And we dressed her because we knew how to dress her, but moving her gently, and all of those kinds of things. But that was all you know. If you guys hadn't been there, we, we wouldn't have known how to do that. And, you know, and not everyone is going to get to do those things absolutely, but, you know, but for us, that was a that was a big thing. But I guess, lovely to hear, really, is it's, you know, because I forget, you know, we just take it for granted. We go out and do our job each day. And you know, we feel the feels too. And some days we come home and we feel tearful, and, you know, because we're human beings. But it's really lovely to hear that the impact that, you know, our team has had, really the good Mahi where we do out in the community, sounds like cool. And I think it can be quite understated. I think of, you know, the day to day learning of caring for somebody. A lot of us in healthcare have based our careers on that, and so it's something that maybe is second nature to us. You're teaching people how to use slide sheets, probably on a daily basis, for instance. But a family that's suddenly trying to learn that how to care for somebody or adapt while going through everything else. I think to have that reassurance of someone like you, Anita coming in, re teaching, going away, coming back, how's it going? Okay, let's go through it together. I think that there's such a profound impact that that can have in supporting the family, but also providing them reassurance that it's okay if you don't get it the first time. Yeah? And we're not getting do? We don't come out to try and upheave your life. We're not coming in to tell you how to live your life. Lord, to change things. Everybody's homes are different, yeah? And, you know, some people more open than others, and that's okay too, yeah, you know, because that's we're just going to roll alongside. Yeah. And you know, whatever needs doing on the day we we do it now, lobs for births. I'm coming back to lobs. I'm thinking about while Angela's going through her changing condition. And it's probably a question that comes up quite commonly, is nutrition for our patients as a carer or somebody that loves a person quite often, one of the ways we show love, or that we're caring for somebody is we feed them. We get them nice food. But the transition, or the pro, you know, the progression of somebody's disease maybe means that they can't always eat the food that they're given. They maybe need to move to a soft diet. And things, was that happening for Angela? Aaron, yeah, so, you know, so between a month before we're having lobster bisque, and she's and she's able to feed herself, and, you know, like. A couple of a week later, it's, it's Christmas day, you know, and, and she can't, she can't do those things and, you know, and see, having to feed her and and stuff like that. And again, did she? She, she wouldn't, you know, like, I, it's a hard one, because I don't know how it made her feel, I, you know, but based on how, how I would feel in that situation, that's quite a it's quite a big thing to all of a sudden be this, you know, this independent, strong person, to now having to rely on your loved ones to, you know, to do those things for you. And so, so, yeah, there was, you know, quite a, you know, Christmas Day. I remember having to, having to feed her. And, you know, again, I would do it a million times over. And then, then, as we kind of got closer, you know, through January and things like that, when she stops, where she stops eating or drinking at all, you know, you're kind of like, what's going that's, I remember ringing the 24 hour, you know, helpline and being like, She's not eating, you know, I like, What? What? What is going on? Why is she not eating? Like, is something horrifically wrong, outside of, obviously, a terminal illness. But, like, what you know is there all this urgency, yeah, yeah. Like, what do we do? It's like, actually, you know, no, she's okay. It's just, this is a part of this is part of it. And her body doesn't, you know, her body doesn't need that. But I think, you know, and, and obviously everyone's situation is different, but think the the suddenness of of all, yeah, but she was eating yesterday, yeah, she finished in this. So this is also another part of our HCA role, is to spend those that time with you guys and go, Well, this is, can I explain to you? Yeah, what's happening here, and that this is a natural part of the dying process. And we would expect that somebody doesn't want to eat or drink. Culturally, people want to keep feeding. You know, they're and they feel like they're not loving, their their, their person, yeah, if the if they're not getting food in but to be honest, I think anyone under palliative care, yeah, they can eat whatever they want, yeah. And if they want BK for dinner every night, then they should get it. So it's not about needing the nutrition at that stage. It's really just meeting their needs and what they Yeah, they want, IMO, enjoyment, enjoyment, yeah. Also think, like, and I don't know if this is the same for everybody, but, but her, her gradual, like decline from, you know, to not eating. When she would eat, it was like this, like this. Hope, do you know what I mean? Like, oh, it's kind of, she's feeling energy, she's feeling better today, you know what I mean? And so it kind of became attached to that. So the less and less that she kind of, you know, that she needed, that she needed to eat, it kind of became like, okay, or this isn't, you know, but also, I think it also coincides with leading up to that point she she was our focus 24 hours a day, and she needed us all of the time. And as you get closer to that time, she actually needed us less and less and less and less and less and until we kind of, you know, you were so we're so busy, and so there was just always something going on. And, you know, that kind of two, three week period beforehand she says she needs you less and less and less. You're kind of just sitting there. Do you know what I mean, like, you're just kind of waiting for, waiting for, literally waiting for someone to pass away, and there's nothing else you could do, remember, yeah, you're literally in limbo, just just sitting there. And you're like, what do we do now? And so then, you know, the things that we can do that, the bed baths and, you know, and dressing her, and all of those kinds of things, you're like, okay, yeah, well, that'll do that. It's got a purpose, yeah? Because you've had this purpose for so long. Okay, it's not that long, but you know, what an honor, you know, to be able to do that to your for your wife, yeah, right to the end, yeah. And, you know, yeah, don't take my hat off to you guys, because, you know, you did a wonderful job, and it's, it's not an easy thing. It's probably the hardest thing you ever gonna have to do, but seeing just how you guys worked as a team, and you were the well oiled machine, that sure is it, because they were absolutely everybody had their role. Everybody knew what was going on. This is going to happen this time. A need is coming at this time and, you know, and that's how your days went along with, you know, visitors and visitors family, visitors and visitors and people, you know. And I just remember, because I met you at a really tough time, yeah, and the stress levels were like, up there, yeah. But you know, to be able to help in that little way, I think it's really meaningful for me. Yeah? I say, Yeah. I feel grateful that I had the opportunity to be part of this journey for you guys, albeit the very small part, you know. And how, how do you deal with that? Anita, how? Because you're coming in at such a crucial time, quite a lot of the time in such a short time, too. That's a lot for you to come in and out of and hold. How do you manage that? I think we all find ways to manage it. We've got a fantastic team, and we talk to each other, and we can download, you know, share our experiences together, and that makes a huge difference. Our after hours girls take a lot of phone calls from me on the way home. You know, have a meltdown, but you know, like this. This is because you can feel, you know, that sometimes it just doesn't seem fair, and even though it's not my loved one. You come away with those feelings. So I mean, I listen to lab music, I swim, I go the rain, or I talk to my clinical supervisor. So we have, you know, we have tools that we use, but we are human too, and some days are really tough. Yeah, absolutely. And I mentioned because I know, in our scenario, we had, we had an one of the H, A, S, come in very early on, and, you know, the slide sheets, and what can we do, and all that kind of thing. And then, you know, and then they don't, then, you know, you kind of let us get on with it. And then come back, you know, at their very late stage. Like, how was that like? Because the the difference in the person from the first time that you see them to the, you know, to potentially the next time that you see them, must, you know, can has the potential, I'd imagine, to be huge. Like, how, like, how, how was that like? Yeah, personally, I do a bit of prep before I go, if I can, sometimes I don't get the opportunity. But, you know, we speak as a team, so we all work together. We discuss our patients as a team and to be able to follow. So okay, things are changing there, even though I haven't gone and I I could go back, I can see what's going on, I can read the notes. I can so, I mean, I don't think you can ever really prepare, yeah, because you don't know what it's going to happen. But, you know, we just, you just got to roll with it, yeah? And the fact that we can, that we've been invited, and, yeah, you know, it can be really tough. It's a, it's massive to be able to allow others, to be able to come and help and, you know, just show you things without making you feel like you're stupid. There's just certainly not, yeah, you know. But it's, it's something you've never done before, yeah, you know. And it's the hardest thing in the world, and that's it. Like Esther said, it's a balancing act, right? Like we've got to get this done, but, you know, you don't want to, you don't want to kind of overstep the mark as well, right? Yeah, we'll take over, if you don't know, if you know, and I never take over. But sometimes the direction is needed, rounding them up. We might practice on grandma and put a nappy on here. We might, you know, like, I recruit family members often for little training sessions. It's like, so getting people involved, hands on, I think it's, you know, it's empowering, then to be able to get through and do this. And you're also, you're also like you guys, especially the the HCA is and incred from all but like you, from my experience, you come in not only at a stressful time, but you're actually also dealing with some of the most intimate times too, right? You know, like dressing people and, like, you say, putting, you know, putting adult diapers and things like that on people that that's, that's quite a big thing for some people, right? Like, yeah, how do you, how do you manage that? Um, we just met. We just manage, yeah, you know, because it is keeping your dignity, yeah. And so, if I come from that mindset, I think it makes a difference. So, you know, if I sometimes I put myself in the situation, so I try to put my my feet in someone else's shoes, and if I was in the situation, what would I want, or what would I need? So, yes, it can be quite a thing for us to add. An adult to wrap our heads around wearing some consciousness products or, you know, but actually the other side of it that keeps them dignified. Yeah, they're not going to be left in a mess. They can still manage. You know, those things can match. And so that is, it's not as I look at it differently. I think now you know, not that I've ever had to be in that situation myself, but I think if I ever get to that situation, I'd understand too. And so I do have to spend a lot of time with families, encouraging, hey, it's now getting a little dangerous to walk to the toilet, and like you have been all these falls you're you know, this is, let's try an alternative, and then at least you don't have to rush, and then you still didn't that kind of thing. So, yeah, I think just just looking at it through your guys eyes, yeah, but makes a difference. I think there's such a value in time, as well as healthcare professionals, when we think of your role Anita, it can be at such personal times for people taking the time with them, having patience, building trust, relationship must be so important, then for them to allow you into their space, yeah, a lot of rapport building. Sometimes we get the opportunity to do that, but other times, things happen really quick, yeah, and, you know, sometimes I might meet people once or twice, and there's, you know, can be long term. So, yeah, it is a it's definitely important to be able to have the opportunity to build that trust, because we're coming in in the most intimate of times. And, you know, it can be a tough it can be tough too, but I always step back and go, I'm not having to do this. I'm just coming in as a spec, you know, as somebody on the outskirts, and that keeps me in check. Yeah, right, you know. So sometimes it's like, okay, even though I can feel all those emotions from everyone, and it's like, Man, I just want to have a big cry with you, you know. And sometimes, sometimes they do, yeah, you know, say, I'm not gonna lie. But you know, in the other sense which we're just coming in as professionals, and we're here to walk alongside, yeah. So, yeah, we're forwarding massive when we can, I do sometimes, maybe it's acknowledging, saying, I know this is not comfortable, or Yeah, like, you know I might, this might be the first time someone's ever allowed someone to help them in the shower, and they might meet me for the first time and they see this face at the door, and it's like, I've got t minus Two Minutes to rapport build and make them feel comfortable, because I'm going to go and help them do something really intimate. But I think, you know, we can, over time, I've learned how to just be really professional about it. It's not about looking at naked people. It's about keeping them dignified and making them feel good, you know? So yeah, because nothing beats a good shower, right? No, but if we can't shower, we find no Tina tab, and we'll still make them feel good. Exactly, yeah, exactly. Aaron, while you're going through these, this riding wave, Christmas is coming up too. Hey, yeah, yeah, like and, and, I in while I'm not while I wasn't like, Yes, I was noticing changes, again, not probably at the rate that say, someone like yourself would would notice who you know, but you know outside of that you've got friends and family that you know that they're not, you know, they they're not there so often, and because, because it happened so so quickly. And we talked about this with, with Cherie, you know, if you kind of weren't there to to see it, I don't, I don't think people expected it to happen so quickly. And, you know. And so I remember in, you know, Angela's phone getting messages, or Angela, you're not, you're not answering your phone. And I would see these messages, and I'm like, yeah, no, you're right. She isn't, you know. And in, and I thought we talked about it before, like, even, you know, like, like, the hospital staff and ringing Angela and kind of saying, Oh, she missed an appointment. I would have been to missing an appointment. You've she didn't even know she had an appointment, like and, and I remember, you know, Christmas Day, and it was, and it was one of those, those tough mornings. Then, not just because it was a Christmas, but, you know stuff that, you know stuff had happened, you know, with Angela that morning, and she didn't really know what was, what was going on, you know, and, and in the meantime, you're getting messages from, you know, from friends and family, you know, all well meaning and things like that. But it's like, oh, you know, I hope you i. You know. Hope you guys are making really nice memories and stuff like that. And you're like, you know, and, and after kind of 345, of these, you know, by this stage, you know, because of everything that's going on, I haven't got anything for us to have for breakfast. You know, the kids are kind of, like, a bit kind of, what, what do we do here? Kind of situation, you know, Angela's head, you know, had an accident, and so I've had to kind of sort that out. And if I hope you're making wonderful memories, and I'm like, and I just remember, just it got to the point where I was just like, This is the worst day of my life, you know, like, No, I'm not making memories. Here's all of the things that have gone wrong in a two hour period, you know, and not happy Christmas, not A, not a happy Christmas at all. But let's say, like going from, you know, the 18th of December, lobster bisque day. And, you know, being, you know, Angela to a week later, and like, you know what is, what is going on here? Is like, yeah, you know. And then you've got the emotion of of Christmas Day, and it's meant to be this happy day and, and, you know, spending time with family and stuff like that. And you like, Listen, this isn't happy at all. Did you? Did you notice? I mean, because you would have noticed the reactions of your loved ones and friends so they they weren't in the thick of it, so them visiting sporadically or weekly, or whatever it is, yeah, that might have been quite confronting for you to to just see the reactions of people when they see her and they noticed that she's changed over that last week. Or, well, what we from, from kind of the the time it all started, what we had, we started off with a with two Facebook Messenger groups, a family one and a friends one, and that's how we kind of keep people updated. And then that kind of got too much to kind of, you know, it's already admin heavy. We're now trying to manage this. And so a friend of ours set up a Facebook group page, and it was initially to sort out how to get a delete a treatment, and who was going to help, you know, who was going to cook a dinner and stuff like that. What it very quickly became was updates from me, hey, this is what's, this is where we're at. This is what's, you know, kind of keeping people as updated as I could, like, kind of a weekly thing of, you know, and I, I didn't sugar coat it. I mean, I wasn't, you know, like, but it was, you know, it was, it was enough to, like, you know. And then I would, I would post them, and people would be like, is everything all right, you know, like, Well, no, everything's not all right, you know. And, and I, and I would also warn people. People would message me and say, Oh, I was gonna, I was gonna come over, and if I know, and if I knew that they hadn't been over for a long time, I would say, that's totally fine. But just so you know, you know, she's not the Angela that you remember and, and that wasn't, you know, yes, yes, it was for them, but it was more for her, because, you know, I didn't want, you know, want them to come in and be like, Oh my God, what's, you know, like, and this big reaction, you know. And so it was to kind of soften the blow for them, but to have this, you know, so that she wasn't like, Deb, yeah, it was, it was, it was to protect her more than anything. And, and I, and because, especially in that first, you know, kind of two months, nobody expected it, you know, nobody expected it that the whole thing to run for a three month period. So, you know, as that initial prognosis of, you know, 18 months to two years. Well, okay, we've got, we've got loads of time, time, yeah, and then. But once we kind of got into that December time period, you know, people were like, oh, okay, this is, this is serious, you know, like, yes, it's yes, it's serious. But no, actually, this is, you know, this is very, very serious. I do remember having a conversation with you, and it was when the household was crazy busy and you were really stressed about it, and I could imagine, you know, like and about boundaries and making visits short and say, No, yeah, so when people want to visit, so today's not good, yeah, or, you know, and because you want to please everybody. And I can see that you, you know, you cared about how people felt, and you cared about how they reacted to Angela, and then having that, that little conversation in your lounge. And maybe I remember it, but it was like, sometimes you got to be able to say, today. Is not a good day. Yeah. And I think part of that, part of that was, was, yes, I wanted, I wanted Angela to see people and things like that. I wanted, didn't want to deny that, but also those, when people came over, that was actually a chance for me to go and do a whole bunch of other stuff that needed to be done. Don't take a minute to breathe. Well, wasn't even that. That was like, Okay, now I gotta go and do the groceries, and I've got to go and get medication. And, you know, one of the kids needs picking up, or or whatever. So people would cut people would come over, and I'd be like, how long are you going to be here for? And they'd be like, oh, what? How long do you need me to be here for? What? I've got to do, this, this, this, this, and this, I'm going to go and do that by, need you to stay here. And we're like, oh, yeah, of course, you know. And people were great about it, and they and, you know, and they would, they would do that. But, um, yeah. And I put up a post that said, Hey, we are going to start limiting, you know. And we probably didn't do it, really, until kind of the week before, you know. And it was like, I mean, and it's not that you don't have to, you don't have to do that, but, but feeling overwhelmed, yeah, oh, absolutely. There were, there were days who would tell that Aaron was absolutely at his limit wheels are going to fall off of if he doesn't get a bit of space right now, you know, Aaron needs some time out. Yeah, you know, or Yeah, I feel like that's one of your ways. That's kind of one of your love languages, though, Aaron as well, and that you are the practical, caring guy. So for you to be the husband that you wanted to be for Angela further, it was, I'm gonna get these things done for you. Yeah, and I'm going to because I know how popular you are and how much you are loved and adored by so many people. I'm going to try and allow these spaces where they get you know, your loved ones can come and have those moments with you. And you don't want to be a gatekeeper, you know what? You know? You know. You don't want people to be like, Oh, I'm gonna draw down see Angela and right here, and my let me and, you know, and in the next kind of, you know, because that stuff happens, you know. And that stuff does bubble away, but, but, yeah, but that was a part of it, as I just want you to, you know, see all of these people that love you, you know. And, you know, talked about, how many people were, you know, official like that, many people came to our house. And, yes, you don't live in a mansion, so it's another little snug, you know, when there's, you know, when there's 20 people and a hospital bed, yeah? No, it's an idea, yeah, no, you did, yeah, it's just, it's so huge. And, you know, just to hear those your, you know, you guys stories, it's, it's massive, you know, it's, it means a lot to know more about the book, behind the scenes, really, because we come and go and, you know, we deal with the clinical side and the practical things based on those emotional things. We see them, but yeah, it's, it's, yeah, good to feed to hear your stories about it and how you felt so well, I say this too. I've, I've said this to Charlie and and we've talked about it. We've talked about it a lot. But, you know, I guess following on from that, I this frustrated me through the whole, the whole process is I can't take the feeling of thanks that I have, and I can't give it to you, and words don't, words don't do it justice, right? So I have this thing where I'm always like, I just want to take it and just give it to you, and you go, Oh, okay, that's what that means to them and and so, but in practical terms, I guess is without without you and, and I mean specifically without you, we couldn't do what we did. So, you know, you've said a couple of times that would that we did a great job. We did a great job, because you did what you do every day, and without you, we couldn't, we, she wouldn't have been at home. We couldn't have, you know, we couldn't have done all of those things. And so, yeah, without taking this feeling and giving it to you, I just really want us to stress you, that's how much you know what you did meant that we could do the job that we did, and like we'll just, you know, and that's why we're here today, is because that we I can't. Thank you guys enough. So, yeah, I feel it. So you all go good. I think it's the perfect point to wrap it up for today's episode. Thank you, Anita, for joining us, having me. I think what we can reflect on today is just how vital your role is. And I think Aaron and I are both in awe of the situations. So it's a team effort, for sure. That's a team effort, yeah. So join us for the next episode. Mode. We're going to start to look at those that last stage of Angela's life where she's entering her last days of life. So it's going to be another heavy one, but I'm sure it will be filled with some beautiful stories as well. Thank you. You.