SPEAKER_01 0:02

Good morning. This is the Blaine's World Podcast, where conversations are worth having and uh seeing. You can watch us each week on Facebook, YouTube, and LinkedIn. You can also listen listen in on Spotify and Apple Podcasts. And for more information about past shows and pre present shows, future shows, you can go to our website, which is behind me, Blaine'sWorld.net. I'm your host, Blaine Greenfield, coming to you from my Zoom studio in lovely downtown Fairview, North Carolina. Each week, we share positive news and uplifting stories by people and organizations in both West North Carolina and throughout the country. And toward that end, it's my pleasure to introduce Trish Rux, a nurse, and Jan Booth, nurse and both RNs, end of life doers and authors for being my guest today. And folks, you can feel free to wave to all your fans and friends who are watching this. Give them a big wave. That is a big wave. There we go. Okay. I should mention that Trish Rux is an end-of-life dueler educator, nurse coach, faculty member at the Conscious Dying Collective, and rich to the nurse with an inpatient hospice experience. She offers a background rich in the study of death and dying and practical knowledge from being at the bedside of hundreds of dying people. She's a co-author of Dying Matters, Eight Conversations That Change Your Life, and what we'll be talking about, have in front of me. Jack Booth has worked as a nurse for 40 years. And Jen, what you started when you were seven? Was that it? I was eight. Yeah. I was just eight. Yeah. Very young. Ever impressed in the hospice, palliative care, and end-of-life coach, doula, and educator. She serves as faculty for the conscious dying collective, a death dualer training program of the Integrative Nurse Couch Academy and formula for the Art of Um formally for the Art of Dying Institute's integrative certificate programming. She presents workshops in end-of-life planning and the uh transformative possibilities of end-of-life care. So let me ask you both first of all. Um first time I meet with somebody, I ask this question and I ask her Trish. In terms of as a kid, you grew up where, Trish?

SPEAKER_02 2:16

Say that again, please.

SPEAKER_01 2:17

As a kid, you grew up where?

SPEAKER_02 2:19

I grew up in Anoka, Minnesota, which is the Halloween capital of the world.

SPEAKER_01 2:23

The Halloween what makes it the Halloween capital?

SPEAKER_02 2:26

We just decided it back in the 1950s, and ever since then, it's been this big thing with two parades and a pumpkin bowl football game, and it's just a big deal.

SPEAKER_01 2:37

So when you were growing up in Minnesota there, did you always know you wanted to be a uh nurse?

SPEAKER_02 2:42

I did not always know that. I was always really curious about death and dying, but the nursing thing came a little bit later. I always was interested in science.

SPEAKER_01 2:52

Okay. So you became a nurse then, and how'd you then, since you kind of mentioned it, how'd you then become interested in death and dying?

SPEAKER_02 3:00

Um, I was curious about it even as a small child, and found out that I could talk about death and dying with people and that not everybody could do that. And I feel like that's kind of a superpower these days.

unknown 3:16

Okay.

SPEAKER_01 3:17

And even as a kid, were you able to talk about death and dying as a child?

SPEAKER_02 3:21

Yeah, my dad was kind of a naturalist sort of guy. So death was part of the circle of life and didn't shy away from any questions or conversations about it.

SPEAKER_01 3:32

Okay, and what's really cool that that your dad did that because so many parents unfortunately don't involve the children at all or don't talk about it, or they just ignore it, I guess. And I guess it's kind of sad when then somebody passes or dies that they don't know how to deal with it. You know, is that oftentimes the case?

SPEAKER_02 3:50

Yeah, and some people don't even let their kids go to a funeral where that's an opportunity to be with other people and see what really happens and be part of the community of mourning.

SPEAKER_01 4:04

And so I'll ask um the uh same questions of um uh Trish, uh excuse me, of Jan, if I can. Uh yes, child, Jan, you grew up where?

SPEAKER_00 4:14

I grew up in uh New England, in New Hampshire, and then down in um Virginia, outside of Washington, DC. So both both places through my childhood.

SPEAKER_01 4:25

And as child, did you also uh have a desire to become a nurse?

SPEAKER_00 4:29

No, was nowhere on my radar. I didn't even know what a nurse did. I mean, I was so ignorant when I ended up in nursing school. I um I'd been in Peace Corps and had been working in West Africa with midwives, and I was so taken with the work that I thought I I want to go back to the States, I want to um become a midwife. And while I was in nursing school, I had a very strong um realization that what I really wanted was to be, you might say, a midwife for the dying, to work as a hospice nurse. And um, that was just clear as a bell.

SPEAKER_01 5:06

I love that concept. I never quite heard it said that way, you know, as a midwife for the dying. Um great concept. Um, when did you get into it? In nursing school, or did you study that in nursing school?

SPEAKER_00 5:19

Yeah, I I had like Trish, we have a lot of similarities with these, with these interests. Um my dad was a minister and he was very open um around funerals and talking about dying and in our church when I was in high school. I was part of uh Elizabeth Kubleras when her book first came out on death and dying, a part of a book group, you know, as a teenager. I, you know, in many ways I had no business being there. I'm not even sure why I was there. I don't even know if I had anything to offer. But clearly, you know, when I when I look back, kind of like Trish, I see these um kind of breadcrumbs that were leading me. Um I've I, you know, I've always been fascinated by um transitions. I think that's why I was drawn to the birth part of being a midwife, you know, these really momentous parts of being a human. I wouldn't have said this as a kid or a teenager, but looking back, I'd say I'm drawn to these really um essential parts of being human, especially the parts that people don't talk about it as much, you know. Um and also I like Trish, have a compassionate heart that likes to be able to support people in hard times. And I got I got clear early on that most people just don't know what to do around dying. We've really gotten detached just fairly recently, you know, you might say the past 50, 60, 70 years, we've really gotten detached from a lot of the rituals of caregiving in extended families and being with people who are aging and dying and um after death care rituals and things. Um, so all of that really fascinates me. Like, how can we reclaim some of those really important parts of being in human community together that I think we've lost. We've lost a lot of it.

SPEAKER_01 7:19

Question I have then, I'm curious that you both don't live close to geographically. How'd you meet um Trish or how'd you hook up with each other?

SPEAKER_02 7:28

So we both teach um doula training programs and we met as teachers for those programs, and then we started doing some side conversations and classes with people. Padma and her husband actually took one of our classes online, and we just had this magical collaboration going with each other. So we've known each other since 2018.

SPEAKER_01 7:56

Well, it's funny you mentioned that, Tris, because now I do recall discussions I've had with Padma when she was Padma. We're talking about a mutual friend of ours, Padma, the the the last name is Davine.

SPEAKER_02 8:08

Divine, yeah.

SPEAKER_01 8:10

And she told us about this course, she was taking it. And it was a strange she was taking this online course, and who would ever have thought it's an online course? But she loved it, you know, and the two of them, her and her husband Will, uh, were telling us about this. And so you you met them through that online course, and you met um Jan through this um through work you were doing. So when did you start working? And you also mentioned you were a doula, and for the person folks who don't know what that is, if you can explain what that is, um uh Trish.

SPEAKER_02 8:41

Sure, sure. So an end-of-life doula, a lot of people know what a birth doula is, somebody who supports the mama, and we support and advocate and educate at the end of life, the same way that a birth doula does that supporting. And it's for the person who's dying and their family, their loved ones, their friends to be present for them. And it's a real range of things. So advanced care planning, like the classes that we give, and walking with people when they have a serious illness, vigiling at the end of life, preparing the body after death, and doing rituals and bereavement with the family and friends.

SPEAKER_01 9:25

And so let me ask then, Jan, the idea. So you hooked up or somehow, you met this other woman who had this similar kind of interest as you. Jen, when did you the two of you decide to write a book?

SPEAKER_00 9:36

Well, we'd been doing classes like with Padma and her husband and many others, and they were they were great classes. They were like, you know, 20 to 30 people at a time, really good conversations. Um, and both of us, one night after a class had finished, we were talking about how it feels like such a drop in the bucket. And we know how important these conversations are. We know from classes, we know just from being out in the world, how many people just feel completely unprepared, don't know kind of where to start with all of this. So we thought, well, wait a minute, what if we wrote a book that was intended to be a conversation starter? And, you know, it's like you could give someone a book to say, here, here are eight really good, juicy conversations that have to do with how we as people can together walk through this time in a different way that doesn't feel so full of fear and doesn't feel so confusing and so medicalized. So, what would be the conversations we'd want to have, you know, among friends and family and your partner or uh, you know, your book club, your, you know, a work group that is particularly close or something. So we started imagining how we can stimulate these conversations and decided that really a book was a good way to do it, to then put it in the hands of people and say, you don't need us, um, really, because we've put some of the just very basic wisdom of things we've learned about why these conversations matter. We've put them in the book and we've given some really good questions for people to take themselves and think about and chew on and talk about with the people in their lives. So that was the evolution of trying to kind of move our own experience and our own passion for these conversations out to more people.

SPEAKER_01 11:35

Now, are the two of you still doing this course online?

SPEAKER_00 11:39

We're not doing the classes like we used to, but we're still teaching in a doula program, but we're not doing the classes right now like we did with Padma and many others because we sort of see this book as the next evolution. Um, and in some ways, you might say a better use of our time and other people's time to be able to do this on their own rhythm with the people in their lives. Not that we wouldn't ever teach again like that, but it really was a wanting to move the knowledge more into people's communities.

SPEAKER_01 12:16

When you were teaching the course, was it during COVID? Yeah. I just can see, um, even though it's a useful thing to read the book, I was just saying, think it would be also a useful thing to take the course, or even it'd be it could be online, but in person, until I ask Trish then in terms of teaching the course. So you do seminars, you lectures. Do you teach the course in person as well? Or you're still teaching the course?

SPEAKER_02 12:42

Well, I started out teaching the course in my home in really small groups, um, in over four to six weeks kinds of things. And now I give different lecture kinds of things. But Jan and I have recently been talking about well, maybe we should do a series with the deeper, deeper questions, deeper dive into things. And so I don't know that we'll really ever stop.

SPEAKER_01 13:09

Because personally, I'd love to have you do the series because I can see it, even though you can read the book. But the beauty of this would be the discussion, you know, I would think. And to have it like again, Padma and Will told me about it. It would be fascinating to kick this around with other people who have probably also never even thought about it beforehand, you know, and it's like an aha moment.

SPEAKER_02 13:30

Um really, we get lots of good ideas from everybody, and we learn every time that we do it as well, whether it's on Zoom or in person, you know, that exchange of ideas and people really thinking over well, what is important to me? And then talking about it with each other.

SPEAKER_01 13:49

Let me ask you this in terms of um, if somebody's watching this or listening to it, encouraging people to buy the book or to take a course if you ever do it again, how do you um approach that to like loved ones? And in other words, um, you know, how does a child or grandchild say, you know, this is a this is uh going to be next year's Christmas gift, you know. Stocking stuffers, right? We're laughing, but it's it's so needed, you know what I'm saying? Yeah. And like when my parents were alive, I don't know if they would ever bought this book, you know, uh, which is a shame. But how do you encourage somebody else to buy the book? Or you're laughing, but uh, or for stocking stuffer or something. How do you get somebody how do you put it in their hands?

SPEAKER_00 14:34

You know, that is the million-dollar question, Blaine. I mean, that's what I feel like I've I've spent 40 years trying to understand better of what are the doors, you know, to go through to open these conversations and which are the doors that shut down conversation, right? Because there's just so much in our general US culture, uh, there's just so much resistance. And and I would include in our healthcare system as well, unfortunately, among our colleagues in healthcare, there's not a lot of skill in opening these conversations. So that's really the big question. And I think what one of the things that has become more clear to me, and Trisha and I share this, we talk about this a good bit, which is um even though we're talking about a kind of holistic preparation for the last part of life, like how can we do this more openly and normalize that this is something every one of us is going to do? How can we do this in more of a community sense and with less fear and confusion? But really, the part that I think we don't talk about enough is that when we have these conversations with the people in our lives, it brings us closer. Because really, what we're talking about are what are my values? What are my priorities in living? What matters most to me? Like today, what matters most to me? How do I want to spend my time? I mean, these are life questions. These are the kind of questions that life coaches and health coaches ask people, right? So we're really encouraging this idea of making conversations about living and dying and our priorities helping to make them a much more natural, normal thing that we do as people. And to, and it's not just trying to kind of pretend like we're not talking about death, it's just putting the end-of-life conversations into a much bigger context about this is part of the human journey. Can we get a little more at ease with this? Because it's something we'll be walking ourselves, we'll be walking with, you know, everyone that we're close to. So it's that normalizing and bringing it into life and not like our life right now, and not just kind of having it off to the side like some booby prize that we all get to when we move into the end of life. You know, how do we hold it up as a vital, purposeful stage of being a human development, human development?

SPEAKER_01 17:04

Well, let me ask you then, Trish, if I can, in terms of sorting this discussion, and that's probably the toughest thing. How do you start it? In other words, um I bought the book or somebody bought the book and you've read it, but how do you get somebody else to read it? How do you get Trish, a loved one, to read it? How do you go about doing that?

SPEAKER_02 17:24

Yeah, I think the important thing is that starting the conversations with just baby steps. And it could be something like, hey, I picked up this book and they talked about the different kinds of things you can do after death, burial and cremation and donation. And what do you think about that? It's pretty easy to have that kind of conversation and then go from there. You know, here's what I've been thinking, and I want you to know this about me. I would prefer a green burial or I want a home funeral, that sort of thing.

SPEAKER_01 18:00

So, what would be the first question to ask?

SPEAKER_02 18:03

What are the things that are most important to you in your life? Those values and how do you make decisions? And it's if you're gonna be the person that is the healthcare power of attorney or agent for somebody, it's important to know what they want. And and we can't plan for every single scenario. There are lots of gray areas, but if I know your values and I know what you would want in certain situations, then I can extrapolate that at the time if it's needed.

SPEAKER_01 18:38

You know, I'm thinking out loud as you're speaking that this would be a great book to also get in the hands of lawyers, you know. Um and um you'll you'll see I I throw out lots of ideas all the time, and my background is in marketing. And I would think that this would be a great book for lawyers to have, because again, when I developed my will, my lawyer never discussed a lot of this stuff, you know, with me. In other words, talked about the legal aspects of it and the financial aspects, but never some of the nitty-gritty stuff, you know. And I'm surprised the lawyer didn't discuss about that. You know, how do you want to be buried? How do you want whatever whatever the case is? So this would be powerful for those folks to get a copy of the this book.

SPEAKER_00 19:21

Um well, in fact, Lane, it's interesting because on our website for um the work that we do together, which we'll we'll share with you later, um, we have these downloadable one-page um information for all kinds of different professional groups of how they might use this book, right? Like elder care. We have elder care attorneys, elder care professionals as one of the groups, and funeral directors, and healthcare professionals, and faith community leaders, and nurses, and hospice and palliative care, and doulas, and et cetera, et cetera. And because exactly what you're saying, that we're all a part of this somehow. And the more we can each kind of hold up and say, can we have these conversations a little more easily? I think that's part of what we're seeing happening in our country right now is that we're there's a whole kind of groundswell to talk more openly about these kinds of things. And one other thing I wanted to say is that, you know, one of the ways in to conversations is often to relate it to something that's happening in your life. Like, let's say you've got a good friend who is um seriously ill, and her partner won't talk to anyone about it, right? And um is really struggling but won't talk to anyone. So um, and let's say the person who's seriously ill is trying to have a conversation with her partner, but he won't speak right. So one way in is to say, you know, I've noticed what's happening with Dave and Marsha, and it really breaks my heart. And I just want to say that I I don't want you to have to be in that situation. I want you to know what's important to me and I want us to talk about it like we've talked about all kinds of important things in our lives, right? So you you use something that's happening in your life that you can relate to, including movies or stories in the paper or a TV show or something on the pit. Yeah, because they've been doing some really great stories on the pit lately, this new hot TV show. So those things are like a really good way in. It's a takes a little of the pressure off because it's out here, those people there, and uh what would be important to me when I think about that.

SPEAKER_01 21:37

Since you mentioned it, this let me ask you both, is there any good one day to begin this or start this? In other words, I'll I'll tell you what I used to do, but I'll ask I I'm curious, Trish, your reaction. I'm curious, Jan's. Should you just wake up one morning and say this is going to be the day we want to discuss this? Or is it a holiday, or is it Mother's Day? Is a good time to to begin these discussions?

SPEAKER_02 22:01

Again, I think just those small mini discussions are the best. There is a movement for April 16th to be um healthcare decisions day. And so some people do it then, some people do it at the Thanksgiving table, um, on your birthday, whenever you're together. So there's big ways to do it, but there's little ways to do it too. And the thing is, all of those ways are a gift that you're giving to the people that you love and love you to know what to do so they're not burdened with decisions and not knowing. You know, that's what Jan and I both saw in our work as hospice nurses is so many families getting to the end of life, not sure what their person wanted. And then they can't speak to that person anymore or understand what they're saying. And there's family conflicts that can come about, and just wow, I wish I knew, and I don't.

SPEAKER_01 23:03

This discussion reminds me of a discussion I had ironically with my ex-wife, and it was um, we actually called it a day, it was contingency day. And so it was the day after Christmas. The thought being everybody was kind of in a good mood or happy, whatever. So that would be a good time to discuss with folks, you know, and and not only, and and I'll ask both of you this question. So it's not just the will, but there's a lot more to this discussion. And I'll ask Jan if you can kind of summarize. So I mean, we have a whole book on it, but yeah, aside from the will, what are the other things that folks should be kicking around?

SPEAKER_00 23:37

Yeah. Some of the paperwork, um, you know, uh are the pieces of paper and the legal documents that people are more familiar with, like an advanced directive that says, um, if I was not able to speak for myself, who would speak for me? Just kind of what Trish was saying a minute ago. And being thoughtful about that and making sure that person knows what matters to me. And the second part of the advanced directive is the living will, which says, if I was in a vegetative state or I was terminally ill and not going to get better, and my heart stops, I do or I don't want it artificially started, right? So that's kind of what we're most familiar with in our current healthcare system are the advanced directives and then our will, which is separate, you know, the just the distribution of our things and our money and our assets. But what Trisha and I spend a lot of time talking about is a whole period of time before that. Because I think the the context for all of this is that it is complicated to die in the current US medical system. It's complicated because we can extend life in some unusual ways, which in some cases is really great, and in some cases is really complicated. And many people have seen this kind of medical technological dying where someone is on uh a ventilator machine and not there at all, and it no one wanted that to happen, but it just all kind of happened because no one knew what was important to that person. Um, and so this whole idea that it's hard to die, which I think most people in healthcare would acknowledge, how can we then make this easier? So that all that end of life last-minute paperwork really does matter. But what about just all the living with serious illness and making complicated decisions about do I treat this, do I not, do I uh what is uh switching from a focus on cure to a focus on comfort? When would I do that? What are the examples in my life of people who have made decisions like that? And how does how does that feel to me? Am I someone who wants to as much as possible allow a natural death when my body is dying? Am I someone who wants to fight as much as I can? And what does that mean for the decisions being made? So actually, it's really important to be. That's why we talk about it's never too early, but it can certainly be too late. So, even though I think that's kind of the pressure a lot of people feel is like, oh, it's too early. Someone just got a serious cancer diagnosis. I don't want to talk about this because it'll make it sound like we know she's gonna die. But what if we were to change that, you know, paradigm and say it's actually a really healthy thing to talk about what is the compass that I'm following here in these complicated treatment decisions? Yeah.

SPEAKER_01 26:49

Aside from we're talking about the legal stuff and the medical stuff, but does part of this come into play, um, uh Trish, in terms of discussions you have. Do you also talk about the funeral and what you want said at your funeral and who comes to your funeral? Do you get into that as well?

SPEAKER_02 27:04

We do. We talk about the after-death care and what matters there. So lots of people don't know the different disposition of the body things that are coming about now. And people have probably all been to a funeral that didn't feel too good, and then they've been to a funeral. It's like that was uplifting and really full of love and care. So, how do you choose that for yourself? You know, what kind of songs, what kind of readings, who do you want there? Do you want people in colorful clothes? You know, it doesn't have to be all somber, right?

SPEAKER_01 27:41

Well, it it's funny you took you mentioned that because yeah, uh my wife and I sometimes discuss that that kind of thing. And then a big trend, I don't know if you folks have seen this now, but I love it. Some people are making obituaries kind of humorous. I don't know if I have you ever seen that, but I love them, don't you? And you read about them, and and that's kind of a fun thing to to read. That and actually, is this strange for the person himself or herself to write their own obituary? Do you have that happen?

SPEAKER_02 28:08

Yeah, we we really think that's a great idea to at least put down the things that are important to you to be in there. Um, but the ones that are funny, that just cracks me up.

SPEAKER_00 28:21

Yeah. Well, especially when it's consistent with who the person was, you know, a person with a great sense of humor who was always, you know, kind of finding the funny side of things. What a great way to kind of end their life. It's like part of their legacy, right? He was always, we were always laughing when we were with him, even in his obituary, right? It's like the the sort of final legacy.

SPEAKER_01 28:45

It's you're giving me food for thought because again, um, haven't had a lot of these discussions, but what's so interesting about what you're saying, Jan, is that that little prompt, the first questions can sort into all these other things. But isn't it kind of cool that both of you smiling and I'm smiling, that this doesn't have to be a morbid discussion, you know. Right. I I guess when you're healthy and and you you're you're completely there for yourself and for others, that's a great time to have the discussion, as opposed to when you're completely out of it.

SPEAKER_00 29:18

Right. Or so exhausted by caregiving or exhausted by treatments or scared and trying to make a decision in the midst of an ICU when you're afraid and the family has never talked about this, and all we're feeling is, you know, grief and do what you have to do so that he doesn't die, even though he said very clearly, I don't want to be on a machine. You know, they're just so so many things we each saw of these kind of last minute crises that were heartbreaking. They really were heartbreaking because there were so many missed opportunities for families, for couples, for friends to have what could at the time feel initially hard. But once you kind of break past that feeling of we shouldn't be talking about this, there is this like big meadow of wonderful conversations that may have tears, may have laughter, may have a lot of shared memories. I mean, there's a whole kind of developmental piece to this, a kind of life review that is very helpful to everybody because it bonds us. We get to talk about our friendship of 50 years or, you know, talk with our kids about things we especially loved about each other. And we don't have to wait, you know, like some Hollywood movie, because when we wait, most people aren't really in great shape to be doing that. And what did we miss for all those months and years of connection that we could have had?

SPEAKER_01 30:54

Well, it's fascinating about what you're both doing, and I'm just trying to think it out, is Trish in terms of being a doula. So I never quite thought about it in terms of a dual for the dying. But how does that work, Trish? Do you sit them down? Do you, I guess in person would be best, but it could be done over the phone or on the computer? How does that work?

SPEAKER_02 31:13

I like doing that work in person the best, but it can be done over Zoom or on the phone. But it's leading the person through that idea of, you know, what are your values? And if there are things that are conflicting values, what which ones have priority for you? Who do you want to care for you? Who do you think will be there to care for you? And how can you build more support before you get even more sick or uh that sort of thing? So those conversations and then working with the person and their family as they need more support. So I'll help people sometimes find caregivers in the community that can help them, um, help them decide about hospice care or palliative care, that sort of thing, and then help them plan out that funeral service that they want.

SPEAKER_01 32:09

The beauty I would imagine of having the both of you there or one of the two of you there is that you're also kind of an impartial third party to the process, you know. Right. I mean, it's just I'm thinking about it in very positive terms that it'd be nice to not have to leave the discussion yourself. I mean, you can tell them to get the book, but wouldn't it be nice if somebody else is asking the questions or kind of guiding them in the process? Yeah.

SPEAKER_00 32:32

That's yeah, that's right. And especially um around things that are hard or poignant or where there might be conflict. You know, we often will I'll hear myself say something like, you know, it's not unusual for families um to have very different experiences of grief. And you know, and you can sort of normalize that this is hard for everybody, right? You can sort of share from your experience that, you know, it's sort of like you're not the only family, right? Meaning this is hard. So we take some time to talk about these things together because many people don't know, you know, don't have a lot of experience being kind of close into someone who's dying, right? You've maybe had a couple people. Um, maybe you were the main caregiver, maybe you were kind of a few steps away, but it's still so unfamiliar because we uh have moved so far away from more of a sense of um being involved more in each other's lives in small communities or extended families where we saw this. So there's a lot of education and kind of normalizing um with people because we we kind of outsourced a lot of this over the last 50 years or so, you know, hospital or nursing home or uh funeral home, or we just don't talk about it because it's uncomfortable.

SPEAKER_01 33:56

Well, you talk about it so so on target because you talk about it with your lawyers, but you don't talk about it with your family, you know.

SPEAKER_00 34:03

Isn't that fascinating? Yeah.

SPEAKER_01 34:05

Because I I've had to have a great lawyer, but you never talked about some of the important stuff, but you talk about the financial stuff. But this is oftentimes more important than that. You both also talk in the book about community um death care. And what exactly is that?

SPEAKER_00 34:24

Go ahead. Yeah, I'll go and then Trish. Um so the idea is that we've become very isolated from each other, and um that many of us don't have the same support to care for us as we get older and need more help. Again, we're not in those extended families like we were and in those small communities where we knew each other more. Um, and there's also, unfortunately, a real um, there's becoming more and more of a shortage of available um home care help, right? And there are plenty of people who are aging alone or that maybe they have adult children, but the adult children live elsewhere. So this reality of who will care for me is becoming a big concern for many of us. And we've seen it maybe in our own parents' generation and are caring for them, and we're wondering how is this all going to happen? So, this idea of community death care is not to say we're gonna go back to when we all lived in smaller towns and rural areas with extended families. We're not going back. Life is fundamentally changed in our country. But how do we, in small ways, build more and more of that way upstream, that care? Who are the people in my life who might help with some very basic chores when I'm not able to? Who's someone that might go with me to a medical appointment and take notes while I'm there? Who's someone that can drive me to my um chemo at the oncology center? You know, just thinking through how do we step up more for each other and how do we ask for help and kind of recreate what used to happen a little more naturally. And that is building this sense of a death-caring community. And one other thing I'll add is looking around and saying, well, actually, what is in my town? What is in my city? Um, what are the hospices? Who are the home care agencies? Uh what have my friends done who have gone through this? Are there doulas in the area? Um, are there faith communities that, you know, or maybe my faith community that I'm a part of that has a group that really helps support people who are seriously ill? So it's a rebuilding of care around us.

SPEAKER_01 36:54

And I imagine it's particularly important for single folks, you know, in terms of and we'll talk about in two steps that single folks don't necessarily have that community built in or you know, may not have it. And then also we talked off the air, and I asked Trish about this as well. It also becomes increasingly important as people some folks get older and dementia sets in. And that that throws a curveball into the process. So I guess, Chris, back to what what uh Jen was saying about the community uh care. It's best to talk about that when you're healthy and and can deal with this, as opposed to putting it off.

SPEAKER_02 37:34

Right, right. And I have a super good example in my own life. There's about 20 of us that have known each other through a meditation group, and we said we will support one another through serious illness. And right now, one of our members does have a serious illness. One of the things we do for everybody else is take each other to our colonoscopy appointments and our cataract surgery appointments and to the airport, you know, that sort of thing. But that give and receive kind of balance with one another, paying it forward sort of thing. And yeah, I can watch your dog while you go on vacation, I can pick up your mail, I can go to the pharmacy for you after your surgery, little things like that. And then that develops into some bigger caregiving.

SPEAKER_01 38:27

Well, I'm fascinated by what you just said. I just love the idea. Then, as opposed to even just having one person or best friend or he or she gets sick, what do you do? But I love that idea you shared with people to kind of, I guess, work and develop a community of uh of other folks who could I I just love that idea. I don't think I've heard it before, but what a fantastic idea for people to do to think about when they're healthy again, back the point being when they're healthy, not when they're not healthy.

SPEAKER_02 38:57

Yeah, there's a book called Share the Care, and that they outline that model. It's really an easy idea, and the point being to have enough people so no one person is overburdened, and the person who needs care doesn't feel bad asking. Because people have stepped up and said they're willing.

SPEAKER_01 39:18

Okay, let me ask you both perhaps the most important thing since we've talked about it. So, if folks want to get your book, talk about the book, Dying Matters, and again, great title, Eight Conversations That Can Change Your Life. Uh, what's the best way to get the book?

SPEAKER_02 39:34

You can get the book on Amazon. We're self-published. Um, here in the Asheville area, the Firestorm Co-op bookstore is consigning the book for us. And um, if you're local to Jan and Boulder or me in Asheville, give us a call and we can meet up with you for for a book.

SPEAKER_00 39:57

Well, and also uh Trish, do you want to give the website so that they could also have great have the um downloadable forms we talked about?

SPEAKER_02 40:06

So we have a website, defdoulas.com, and we have a page for the book. So we'll put this interview on there, and then we have these downloadable PDF forms that Jan talked about. We have some testimonial kinds of things and just information about the book.

SPEAKER_00 40:27

Okay, and a link to the Amazon um webpage where they can write us.

SPEAKER_01 40:31

And perhaps most importantly, Jen, since I have you here, if folks want to get the book, we talked about getting the book. If they want to contact either of you to either get work with a doula or find out how to find a doula, what's best bet can to reach you? And I'll ask um uh Trish as well. What's best bet?

SPEAKER_00 40:50

Yeah, one thing we found the easiest way is to use the same um email, which is info at deathdoulas.com, D-E-A-T-H, and then doulas is do l-as dot com. And that way then we can, if it's something that's more um pertinent to me or more pertinent to Trish, we can always respond with our own emails. But we've just found it easier to have all emails go to that one place, and um, we can be very responsive. You know, part of our work for both Trish and I, you know, we wrote a book about conversations because that's really our focus in many ways right now is opening up these conversations. So we are open to people, you know, sending us emails, communicating with us, asking questions. Um so uh info at deathdoulas.com.

SPEAKER_01 41:43

Okay, and also Trish, if they go to that uh website, uh, do they also they can read about your respective backgrounds there as well? If they want to find out more about you, is your background on that website?

SPEAKER_02 41:57

We don't really have that. We have the information on the book, and it has a small biography for both of us there, but we don't have an expanded presence on that on that website, otherwise.

SPEAKER_01 42:09

I'd like to thank you both for being my guests on this edition of the Blaine's World Podcast. I'd also thank like to thank my uh producer Cappy Tissetti. And hopefully, one of these days, at least with respect to uh Trish, we'll bump into each other in the Ashville area. That would be fantastic. But thank you. I hope so. Thank you, thank you. Thank you, Blaine. Thanks. Fantastic. I really appreciate it.

SPEAKER_02 42:29

It was fun, thank you.

SPEAKER_01 42:30

Okay.