Death Doulas and Hospice Nurses Talk Caregiving Community and Conscious Dying with Trish Rux and Jan Booth

In this episode of Seeing Death Clearly, I’m joined by hospice nurses and end-of-life doulas Jan Booth and Trish Rux, authors of Dying Matters: Eight Conversations That Can Change Your Life.

We talk about why conversations about serious illness, caregiving, and end-of-life wishes need to begin long before a crisis. Through their years of hospice and palliative care experience, Jan and Trish have seen how often families find themselves making difficult decisions without having talked about what matters most to the person they love.

We explore why end-of-life planning is about much more than completing an advance directive. It’s also about understanding our values, thinking about who will care for us, talking honestly with the people in our lives, and building the support we may need as circumstances change.

Jan and Trish also share how their experiences as nurses led them into death doula work and why doulas can be valuable guides during serious illness, not only during the final days of life. We talk about the continued confusion surrounding hospice and death doula care and why, even after decades of hospice, our culture still struggles to talk openly about dying.

A big part of our conversation centers on community and caregiving. We discuss how isolated caregiving can become and what it might look like to rebuild circles of support around people who are seriously ill and their caregivers. We talk about practical approaches such as Share the Care, along with my own experience helping organize around-the-clock community support for someone who was dying.

And, as so often happens on this podcast, a conversation about death becomes a conversation about life. Jan, Trish, and I talk about how facing our mortality can help us become clearer about what matters, strengthen our relationships, express gratitude and forgiveness, and have important conversations while we still have the opportunity to have them.

Their book, Dying Matters, offers eight practical, heart-centered conversations designed to help individuals, families, caregivers, and communities begin talking about serious illness, caregiving, grief, loss, legacy, and the end of life before a crisis forces those conversations to happen.

00:00 Life Skills for Dying

00:19 Meet the Guests

01:39 Jan’s Hospice Journey

03:38 Trish’s Parallel Path

04:17 Why Change Is Slow

08:28 Beyond Advance Directives

10:26 Serious Illness Doula Role

14:01 Rebuilding Care Communities

16:30 Care Circle in Practice

23:35 Share the Care Model

25:10 Why Community Is Hard

32:13 Book and Discussion Guide

34:47 Mortality as Motivation

39:01 Resources and Where to Find

41:25 Closing and Next Steps

info@deathdoulas.com

deathdoulas.com

https://bookshop.org/p/books/dying-matters-8-conversations-that-can-change-your-life/cf554f4ee1eb868f

Transcript

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[00:00:00] What we can do is to remind people of how they have lived their lives, and that a lot of the things that are life skills, they've already done. End of life has this whole shading, like it's just so different, and there is some truth to that, and a lot of those same skills can serve us well there. 

Welcome back to Seeing Death Clearly.

I'm your host, Jill McClennen, a death doula and funeral celebrant. Here on my show, I have conversations that explore death, dying, grief, and life itself, with the hope of making these topics feel a little less intimidating and a little more approachable. Today, I'm joined by hospice nurses and end of life doulas, Jan Booth and Trish Rux, authors of Dying Matters: Eight Conversations That Can Change Your Life.

We talk about why conversations about serious illness, caregiving, and end of life wishes need to happen long before a crisis, and why preparing for death involves so much more than completing advanced directives. We also talk about rebuilding the community around [00:01:00] caregiving, practical ways people can come together to support someone who's seriously ill, and the role death doulas can play well before the final days.

And ultimately, we talk about my favorite thing to talk about, how facing our mortality can actually help us live better with more clarity about what matters, stronger connections, and gratitude. Thank you for joining us for this conversation. Welcome, Jan and Trish, to the podcast. I'm looking forward to talking to you today.

I do have a copy of your book, so we'll for sure talk all about that. But I actually am curious to hear a little bit more about both of you, who you are, where you came from, anything like that. Jan, if you wanna start 

Sure. I live in Boulder, Colorado, although I'm temporarily in the state of Maine, and I come into this work as a hospice nurse.

I started back in the mid-'80s in a hospice in the Washington, DC area, and that was great training ground for me. Everything that has propelled me to where I am now started there at the [00:02:00] bedside, and I loved that work. I loved the relationship building. I loved the intimacy of it. I loved the educational part where we normalized and naturalized what was happening, so much about that, the teamwork, the holistic approach.

But what propelled me away from the bedside is that I was so struck so many times how unprepared families were and how foreign this whole experience seemed, and how many opportunities were missed for what I could later see would be things like connection and clarity and communication and community building and all of that.

Since leaving the hospice bedside, I've spent the last 15 or so years or more now following the forward edge of end of life care. You know, what's changing in the culture and wanting to be more a part of that, which got me into taking a death doula program and being a part of the Art of [00:03:00] Dying movement and some of those classes and courses.

I became fascinated by how does a culture change, and what are the elements coming up from the grassroots that I can be a part of? And that meant moving our gaze off of hospice and moving it to the community to encourage, in some new ways and some old ways, people to have deeper conversations about what matters most to them way upstream from the actual dying, and that's where a lot of my work is now.

And then Trish, how about you? I'm from Anoka, Minnesota, the Halloween capital of the world And I live now in Asheville, North Carolina. I'm a nurse, hospice nurse, a end of life doula, and faculty with Jan at the Conscious Dying Collective, and an active doula in my practice [00:04:00] here in Asheville, and helping people online as well.

And everything Jan said. 

We've had a wonderful parallel path without knowing each other until about six, seven years ago. But it's fun how many of our values have come out of this work over the years, similar values. 

I'm always curious, people that have been doing this work a long time, how much has it changed?

Because it feels to me like this is a slow change in getting the general population, right, the general public to understand hospice, what it actually is - Yeah ... when you should use it. Uh. Encouraging conversations earlier. Seems like it's getting somewhere, but it's not happening quickly. But I'm also fairly new in that I've only been doing this work for six years.

So I'm really curious if you've seen a shift overall, if it seems like it is maybe speeding up a little bit [00:05:00] thanks to, like, Nicole Kidman wanting to be a death doula so now everybody's talking about it. What's that experience been like? Yeah, I feel like in the past 20 years certainly there's been movement, and it's picking up speed is the way I'm seeing it.

But I also know I'm in this bubble of- information, and my feed is all about death and dying, and funerals, and things like that. So I don't know that I'm, got my finger on the pulse of the whole population. I know that there are lots of people I talk to that don't know what a doula is, don't know the facts about hospice, aren't willing to talk about things.

So that's the where I see it. 

Yeah, I would add that it's remarkable to me that 50-plus years that hospice has been in this country, and our length of stay is about the same. So that speaks to the slowness of change. It [00:06:00] speaks to so many things, actually. We could have a whole podcast just on what, why. You know, but I think that's what's so interesting to me about the shift of gaze off of hospice in the medical world to the community and to individuals.

Because I think the resistance to hospice is much more than our healthcare colleagues not being very skilled at having these conversations about goals of care and end-of-life options. That is true. And I can say for many of the years, I was with the hospice for 25 years in the DC area, and for many of those years we put our focus on, well, we need to support the physicians to have these challenging conversations, and we need to get people into hospice sooner.

That was always the talk. I still agree with all of that, but I saw so little change, and that's what got me interested in a bigger picture that looks at more of the holistic approach to why are we so resistant? What is it when somewhere we know we're gonna die. Some of us deny it, and it's [00:07:00] deep down, but we all know we're gonna die.

Why is this so hard? And that's what got me looking more at the personal exploration and how important that is. Also on the part of healthcare practitioners, by the way, to do that more personal. What are the anxieties? What are the worries? What is it that keeps us from being able to talk about it as families?

What's in the culture, particularly for us living here in the US, in the US culture? And where are the places that things are not that way, and where there are lots of sprouts blooming, and let me follow that rather than just focus on it's broken, it's broken, it's broken, which is what it kind of feels like to me.

To say, "Where's the new growth? Where's the aliveness? Where are people wanting to engage with this, and can we build on that, that energy, that aliveness?" 

It seems to me, too, that we keep talking about we live in this death phobic society, and people don't want to talk about it. But if you give people that opening, [00:08:00] many of them will step into it and start talking about their experiences, maybe with their parents in hospice care, or being curious about, "Oh, gosh, what is a death doula?

I've never heard of that," and then seeing more and more. So I think that happens as well. We're maybe not as death phobic as we think, but we don't give people the opportunities often as a culture. 

I'm also thinking about what you said, Trish, that there's something in narrative medicine like you must ask the questions that invite the conversation, right?

Mm-hmm. So if the question and the focus is always in one way, for example, the conversation is in healthcare often relating to advanced directives, right? So for Trish and myself, who have had this bigger picture through our experience, it became very clear that that was such a poor representation of what conversations about end of life can be, [00:09:00] right?

The conversation about advanced directives is really a conversation to direct the healthcare team. It doesn't even speak a whole lot to the values and what matters most to the person, right? So coming into this whole more community approach and personal approach to changing the conversation means we talk about different things.

Like advanced directives, yes, important. Totally agree with that. But what are the other conversations about a more conscious approach to how we live, and how we live with serious illness, and how we caregive, and how we build community? You know, that that to me is not only more interesting and richer, but it also is part of how we move forward in transforming end of life care, those conversations.

So that's what, what led me into wanting to work in these really interesting teaching programs, so I want to write this book, is how do we inspire, not make it a should, and something like, [00:10:00] "Okay, I got to do those advanced directives," but how can we inspire people to want to talk about the things that matter most to them?

And I think that, for me, is the way out of this real denial about- dying in our country is to say, to change the conversation to what matters to you. What are your values? What are your priorities? And how can the last part of your life reflect that in, in a really meaningful way? 

Another thing that comes to mind as you're saying that, Jan, is the idea that most of us are serious illness doulas now.

People get a diagnosis, they have this longer period of time where there's lots of decisions that need to be made, and making them based on your values and your priorities means you have to know what those values and priorities are, and really think about that. And then talk about it with the people who are around you, helping you make decisions, including the medical [00:11:00] system.

So do we change the name to serious illness doula? I don't know. Yeah, that's a great point, because that's probably one of the biggest things. When should I work with a death doula? Should I call you when somebody's dying? I'm like, well, sure. But it would be better if we started working together earlier.

And you're right, there is that- problem with the term death doula, where I think people automatically go, "But I'm not dying yet, so I don't need a death doula." And I'm like, "Really, we do help you navigate your illness. We help you navigate the conversations that you need to have with your family. We help you figure out what's important to you."

But yeah, terminal illness doula or anything along those lines just doesn't have the same ring to it as death doula. But you're right. It is a problem with this idea of like, what is it that we actually do, and how do we put that in a title that makes it clear so that people know when to work with us?

But then it goes back to the same [00:12:00] thing with hospice. People don't know when to use hospice either. So it's like a problem that we're stuck in, and I like that Jan mentioned finding the places where we're doing good work and where it's working already, and how do we build on that? Because so much of the conversation, I think being humans, we focus on the negative.

So much of the conversations that I hear, and I'm part of them as well, right? I'm just as guilty. Is just talking about all the places where it's not working. Well, let's find the places where it is and just make those grow, and then we'll actually solve, quote-unquote, "solve the problem" versus just talking about what's wrong.

Yeah, it's a real reframing of the question, and once we get away from how do we get people into hospice sooner, and what if we make the question a much wider one of what does it mean to be human all the way through the end of our lives? What are the life skills that we need for ourselves and for each other to be able to [00:13:00] have this be a meaningful phase of human development for those of us who don't die suddenly, let's say, as most of us will die slowly.

How can that last part of our lives be held up with the same honoring as many other phases of human development? And to name things and be able to talk about why it's hard, and be able to educate people about grief, and that grief and the fear of feeling emotional pain isn't a reason to stop. But that we can find and skillfully learn to move through hard things, just as many of us do in our lives.

So to me, what's fascinating about it is that it's really a whole different question that I think people like Trish and me, and many others, I'm sure y- yourself included, Jill, are asking different questions. And that's, to me, that's really wise. It's a wise direction for the cultural transformation and the personal transformation that is possible.

In looking at it coming from the ground up. Right, in [00:14:00] communities. The other night I gave a talk at a book club in a really small community, and it was just so sweet. They were all there looking at their deaths, looking at how they can support one another. That's gonna change how death happens there. And whether or not there's a hospice they turn to, they can turn to one another.

S- And they're learning how to do that ... 

and that's the overlap with so many other issues currently in the US, and I'm sure many other parts of the world, which is this social isolation that so many people are feeling. So this community building piece is, to me, one of the forward edges of end of life care, just like, Trish, you're saying in that small community where you talked about.

We're not gonna go back to the way it was, and we lost a lot. You know, the way it was in the past is that we were more community-minded, we were in smaller communities, extended family, people were much more exposed to the slow [00:15:00] d- arcs of illness and diminishment and how people care, give, and all that. So we're not gonna go back.

How do we recreate in a new way and reimagine community? And not just caring for dying p- people, but the same is true for many parents right now raising families. Mm. The old way of just having a nuclear family be in charge of this massive undertaking of parenting, and also perhaps having work in the world that's important to you, it, it's that experiment I think many of us would agree was really not all that successful.

So how do we bring in more community to all parts of life, not just serious illness and dying? And that's why we have the next, we have eight chapters, eight different conversations in our book, and the seventh chapter is community death care. What does it mean in our perspective, talking about end of life, what does it mean to build community [00:16:00] differently, starting from you and your circle?

And for people with really small circles who are scared, like, "Who is gonna care for me?" You know, I don't know who those people are gonna be, and I'm scared about that, which is a very real thing. Then how can we help people to think through, not to fix the situation, 'cause it's way too complicated for us to fix it with any one conversation, but how do you start building that, especially way ahead of time rather than waiting for a crisis?

Yeah, I actually had an experience about a year ago of, and I know actually one of you in your bio it said Catholic upbringing and Buddhist beliefs now. Yeah, there we go, Trish. Same, right? Was raised Catholic, now I'm part of a Buddhist center in Philly. And we had one of our members say exactly what you said, Jan.

"I don't know what I'm gonna do because I have a terminal illness and I have no family, and I have nobody to help care for me." And he was a nurse, so he knew the realities of what end [00:17:00] of life was going to look like. So I did get together a group of people, and we did the best we could, but it was not easy.

This was a really challenging thing of, like, literally s- a spreadsheet of, like, scheduling people that could be there with him for hours a day. 'Cause people don't understand. Again, he knew, so he was wise enough to say, "I need to get this together." But even with hospice there, there was 23 hours out of the day where he was alone.

So his neighbors, people from the Shambhala Center, like, we got together and we were able to be with him when he needed it. But man, it was challenging because it is so foreign to us now. And also the people that I had helping, I knew the realities of what it was gonna look like, but you know, I had just, like, this guy's friends and we're like, "Hey, we have to give him his medication.

Also, he's constipated, and so we need to make sure, like, we take care of that." And [00:18:00] like, there was a whole lot of things that it was like, I don't know if I could do that, right? Like, I'm fine sitting there so that he's not by himself, but like some of this other stuff, people were understandably- Yeah

confused and uncomfortable with it. So you're right. I think we need to get out into the communities now and educate now, early. You know, talk to your friends. 'Cause even for somebody that maybe does have family, you're right, most of us, we don't have large families anymore. Even if we do, we're not close to them.

I got me and my husband, but I also have two kids that are still young, and actually even right now, my mother just had surgery last week, and it's been like trying to rearrange my whole schedule, rearrange my life for the kids- Yeah ... and my mom, and I'm trying to work, and it's just not easy to do. And so many people are gonna find themselves in this position of [00:19:00] how are we gonna do all of this while also still paying our bills and putting food on the table and doing the things that we have to do without having a community that can come and help back us up and help with some of that work?

But I don't know the easy answer to that. I don't think there is an easy answer. Mm-hmm. But you're right, we need to get out now and start talking about it. That's a beautiful example, Jill, of how you brought together community for that person, and the acknowledgement of how hard it is to schedule 24/7 care.

And even if people are willing and have the means to pay for care, sometimes it's not available. Mm-hmm. Especially at night. That's what I'm finding. I have a similar thing with my group of people, my sangha people, and we have said many years ago we're gonna take care of each other. Mm-hmm. And at first it was just taking each other to colonoscopy appointments and cataract [00:20:00] surgery and to the airport, stuff like that.

But recently we've had one of our members become seriously ill, and things are happening really quickly, and people that aren't familiar with care or the medical system don't know what to do. And so it's ... This is a training ground in a way. Like, here's how you show up. Here are the things that need to be done.

Can you do that or can you be in that outer ring of support with running errands or things like that? So find- people finding their place in that and learning how to do it better maybe for the next person. And actually, I had even thought after this experience was done that I was like, maybe that would be something I would consider adding to, like, my doula work, is helping people create these care groups, whatever you wanna call it, right?

Because I think it, it was, it was [00:21:00] evident that we really needed better training for the caregivers. I tried my best. Like, I had Zoom meetings and, like, I tried to give them some training, but again, I didn't do it early enough. I kinda waited because we weren't sure when he was gonna need it, and I wasn't really sure who was gonna be around.

And so by the time that I tried to do that, we were kinda already in it. But you know, I'm sure you're both in the same boat as me where I'm like, "I have lots of great ideas. It's just how do I have time to do them?" 

I think that's a very common thing that teaches us important lessons, and that is that it often feels too early until it's too late, right?

And that sometimes we just have to learn that from previous experiences and be like, "Okay, I remember that before. It felt too early. Like it felt too early for that conversation, or it felt too early to be thinking about hospice or whatever." Fill in the blank. But planning and being [00:22:00] proactive are something most of us have done our whole lives.

We didn't wait until our first kid was going off to kindergarten to be thinking about how is that gonna change things, right? So I think part of what we can do is to remind people of how they have lived their lives, and that a lot of the things that are life skills, they've already done. Somehow the end of life has this whole shading, like it's just so different and so scary, and there is some truth to that.

It really is different. And a lot of those same skills can serve us well there. And I think that's a really good idea, Jill, and something for us to be talking about even in the doula program more with doulas in training, which is part of that proactive work is not just thinking ahead to your advanced directive ideas, what are your values and priorities and- in choosing as you find yourself through what we call the medical [00:23:00] superhighway, which is really complex serious illness decisions.

But in addition, to be really focusing on who is your care circle, who will be there, and let's think about that and plan ahead, and have that be like an essential part of care planning. Not just on decisions, which is what we tend to focus on, but on the supportive care. And it's hard. I can see why we put it off.

It's, we all know from our own experiences and from working with people, it's f- it's really complicated, and we don't have the resources we need, and it feels kind of hopeless sometimes. 

There's a book I can recommend, and I talk about this with my clients all the time, is called Share the Care. Do you know that one?

Oh yeah, I have it. Yeah. Yeah. Yeah. And so that's a great model that's not difficult to understand and gives people some of that on-the-job training in caregiving, and as we move forward with other people that we care for and we have those experiences built up. [00:24:00] And maybe that's part of that grassroots idea of changing the system.

Yeah, one of the things that I liked so much about the Share the Care book that I do often talk about with people is you don't have to just have people that are gonna come over and literally help with the day-to-day care. You can ask people to come over and take out your garbage. You can ask people to come over and wash your clothes and fold the clothes.

Take some chores off of your hands that feel less intimidating to people, aren't as intimate as maybe day-to-day care of somebody, but will really make a huge difference. And I learned it from reading that book where I was like, "Oh, yeah, that makes a lot of sense," and it goes back to this idea of like when we even have kids, right?

That idea again of like being so alone. If I could have had somebody just come over and wash and fold clothes for me when my kids were really little and I was exhausted and overwhelmed, that would have made [00:25:00] a huge impact. But I didn't even have the idea to ask for the help. It wasn't something where I would have been like, hey, calling up some of my friends.

Also for me, and probably for a lot of people, part of I think why we've lost community is because a lot of us are not where we grew up. And so most of my friends that I had growing up, they're not near me. So it's not like I could easily call them and be like, "Hey, can you run over and help me out?" And with moving around a lot, it definitely is harder to make actual friends when you're older.

Like, I have acquaintances. I have people that, like, the kids play softball together, so, like, we see each other at the field. They're not the people I'm gonna call and be like, "Hey, my mom is, like, really in a rough spot." They're not those people to me. And so how do we build communities? Again, even, like, losing churches.

You know, I left the church that I grew up in. That was- Right ... a big community for us when I was a [00:26:00] kid that now no longer is there. Even though I'm part of a sangha in Philly, my husband's not part of it. It's kind of more like my social sangha, not so much, again, people I would call and be like, "Hey, I need help."

So how do we build those communities again- Yeah ... when we've lost that natural community that was just built because we were born and we grew up somewhere? Yeah, that's an interesting way to look at it, Jill. I think about how do, how do we cultivate that? And part of it is volunteering to help people, offering to help, and setting that up as more of a normal thing to do, typical, and taking a chance sometimes to ask.

I think a lot of people want to help each other, and they're looking for community at the same time that I am. That's one possibility. And then sometimes you have to supplement with paid care, and being able to think- Mm ... of that ahead of [00:27:00] time, 'cause it's not inexpensive. 

Right. And even to name, like here's again the big picture coming in, you know, we're in a culture for the most part in the US that has really valued and holds up as national, with national pride, independence and looking out for yourselves, and stiff upper lip, and hard work.

And really the skill set we're talking about for end of life, for raising families, for general community living, is a collective, not an individual mindset. So even to just be able to name to people, like if you're think- you know, putting out to some friends where you feel like, "I think we might have some things in common here.

Maybe we could be that group for each other." Just to even name, I know a lot of us, this feels foreign to do, to ask for help. We live in a culture that, you know, pick yourself up by your bootstraps. So kind of recognizing when you're talking about it that it's counter-cultural for many of us. The people I see who I've cared for [00:28:00] who still have that sense of community are often the more recent immigrants to the US, who are still very much in that, what actually most of the world has, which is a sense of collective responsibility.

We are a family. You know how many cultures are there where you call the older people aunties and uncles who have no relation to you blood-wise, but it's a sense that we're in something together. So naming that I think is helpful to recognize this is part of why it's so hard to ask for help and do things differently.

And I'm all about cultivating younger friends, 'cause my group is all about that same age. That's been our task. Everybody's been told, "Go out and cultivate a younger friend and bring them into the group." I don't know if you're having the same issue that my sangha's having. Like, we are not getting younger members.

I am one of the youngest, and I'm 47. So, like, I'm certainly not young, and I am watching- The [00:29:00] elders in my sang age, and they're also the ones that kinda have all the training and all the wisdom, and it kinda wasn't really passed to the younger ones. So, like, the few of us that there are, we've talked about that even, of how once this older generation, you know, you maybe wanna call like the OGs, right?

Once they're gone, we're gonna actually lose a bulk of our sangha, and we're also gonna lose a lot of the wisdom and the knowledge that the sangha is holding onto. We've tried to figure that out, like, how do we bring younger people into some of these communities? But a lot of it is hard, where even for me now, like, my daughter plays so much softball, I haven't been to my community in a really long time.

And I'm like, "Look, once my kids are grown, then I'm gonna try and get back again." But it's really challenging now because everybody is so busy. All the kids are so busy, right? And so if you've got young [00:30:00] kids, it's hard to get involved in anything like that. But I think every kind of faith community's going through that from what I see, that- It's mainly older people, mainly older women who are in attendance, and no young people coming in.

I had a minister ask me, how do I doula my church? Yeah. 'Cause he sees it's dying. Mm-hmm. Hmm. 

Yeah, I think this is the crisis that we don't talk enough about in this country, 'cause probably we have so many other crises that we've got our eyes on. But just what we're talking about, I feel like it has implication for all parts of our lives.

I think it's felt more when you're raising kids and when you're caring for people at the end of life. The pressure of it is felt more, but I think the impact of that separateness is throughout our whole lives. And that's really interesting what you said, Jill, ab- so I'm a Boomer about to turn [00:31:00] 70, so I'm right smack in that generation that still has some memory of what it was like growing up in a faith community where people were looking out for each other.

Honestly, it's mostly the women in faith communities who are that glue, and often that's true outside of faith communities as well. So what has shifted as more of us are pulled by the work we wanna do in the world as well as the work of building community, like who steps in and how? And I think a lot of the elder Boomer community is trying to figure out, what does it mean to be relevant?

What, how do I show up? You know, being a grandparent for many people is one place, but we're gonna have to reimagine all of this, I think. And it might be helpful to look at more traditional societies or societies that are more collective in how they form and relearn. The elder generation can have a really [00:32:00] important role, perhaps not as helpful with some of that caregiving.

But I'm really glad we're talking about this because I feel like people don't know until they're in it. How unprepared they're likely to be. 

Yeah. That's one of the things with our book too, is having a discussion guide in the back and really wanting communities, however loose they are at the beginning, to sit down together.

And it could be families, but could be faith communities, and that's a vision to see people sitting down together and going through it however long it might take, or maybe one question at a time, but starting those conversations that lead to this idea of who's in my community, whose community am I a part of as well?

And one of the things we wanted to have in this book is that, yes, the focus is on end of life, and that last chapter is how talking about dying changes how we live. [00:33:00] And the chapters on the heart and on the soul matters, you know, the heart and the relational and the spiritual soul chapters are as much about living and how we live.

In the heart, chapter three, we talk about the power of forgiveness and gratitude and repair of relationships and not waiting and things like that. So we really, based on how Trish and I both see things, we really wanted the book to be as much about life and living and life skills and that whole idea of what are the benefits of having these conversations, not just to prepare for the end of life, but what are the benefits now?

Like, why is it, why would it be a good invitation to not wait for those conversations? And, you know, that's what we have both found in our own lives and in the work we do, that it changes relationship to be talking with each other about these meaningful [00:34:00] things. It, it connects us more. It gives us more clarity, and why wouldn't I want that now?

Since I don't know how much time I have left at any age, why wouldn't I want some of that clarity and connection and community now? So that's also a, a big stream through the book of, of building that part of being in a human family together. 

Lately I've heard myself saying so many times, "It's really hard to be human."

Yes, it is. 

Big work. Thankfully, big pleasures too. Yeah. Thank God for things like awe and wonder and all the wonderful moments of joy and connection because, yeah, I find that too, Trish. It's hard work. Mm-hmm. 

It is very hard work, and probably my favorite thing to talk about when I talk about end of life is how it helped me live my life better.

Ah. Because I tried all the stuff before, [00:35:00] right? I, you know, got into yoga. Did yoga teacher training to become a yoga teacher, you know, and like a lot of us, tried the sex, tried the drugs, tried the alcohol, tried all the stuff. Got into Buddhism, you know. Went, like, headfirst into that. And then I became a death doula, and I had to face the things that I didn't even know were inside me, that I had fears and anxieties about death.

I had to face my grief. I had to face my shame. I had to face all these other things by training to become a death doula and talking to so many people and reading so many books. And then all of a sudden I was like, "Oh, look at that." That was, like, the one thing that finally got me to the place where now 99% of the time I wake up in the morning and I'm just full of gratitude.

Mm-hmm. Doesn't mean everything's perfect, right? Yeah. I still have aches and pains. I still have bad days with my family. I still have those things, but I don't focus on them the way that I used to because [00:36:00] no matter how annoying my daughter is or how annoying my husband is, I have them and other people don't, and I know that.

And it literally changed the way that I walk through the world, and I wish people- Hmm ... could understand that, that if they would do even a little bit of this work, it really will change the way that you live your life. But we're so afraid to face the fact that one day it's gonna end that, like, you just

It's a hard sell. It's a hard sell to get people to really focus on this stuff. 

We decided to put together some resources for lots of different professionals. It's available on our website. 

And 

on our website, we have these 11 downloadable one-page how to use this book for all kinds of different professionals.

And one of the professional groups that we have this for is life coaches, health and life coaches, because we feel like just what you said, Jill, you're like a great example of that. So much [00:37:00] of life coaching and health coaching is focusing on what matters most to you and how can we take small steps forward towards that.

And so many people want to feel more joyful, more gratitude, want to be more, feel more connected, want to feel more love, all of those things, and feel more purpose. And, you know, the coaching is about making that practical steps forward. And I think there's nothing like bringing in mortality. If you had a short time to live, what would you do differently?

You know, that's a great question for a life coach. So that's just an example of how we're trying to bring in people outside of the end of life doulas and the hospice professionals, although we have downloadable PDFs for them as well. But we're trying to help people to think outside the box as these are, these are s- life skills and building of a certain capacity for living.

And there's, to me, there-- I don't know what is more potent as a motivator than to really look at, I don't know how long I have. Is [00:38:00] this how I want to be living, thinking- Mm-hmm ... reacting, resisting, being stuck, you know? I mean, I still do all of that. Even as much as, you know, 40 years of doing end of life work, I still forget.

I fall asleep. I get stuck. But it sure helps to be surrounded by this work and these resources and working with people who don't have a lot of time. It really helps me. 

One of the subgroups that I'm in is an aging group, and we've been meeting, I think, for three years now once a month, and we take turns bringing topics We're all about the same age.

And h- just how that has helped, too, to bring in that curiosity and rethink the stereotypes about getting old. And of course, then the conversation moves into death and dying at times. So I think all of it, all of those conversations matter. [00:39:00] I think so, too. And I actually just looked. We're near the end of our time.

So I will give you a couple minutes. You can talk about websites, it's, you know, social media, whatever you wanna talk about. Let people know where they can find you, where they can find this book, all the resources you've talked about. There's a page on the deathdoulas.com website for the book, Dying Matters: Eight Conversations That Can Change Your Life.

It's available on Amazon, and there's a little independent bookstore that's selling it as well here in Asheville and is willing to ship for people who don't wanna use Amazon. Book page there has lots of information, and we'll post this podcast on there as well. And social media, we have the Death Doula Collective on Facebook.

I'm not yet on TikTok or those sorts of things because I'm 70. I have other things I wanna put my time to. Those are the ways that people can [00:40:00] access the book, and also they can reach Jan or me at info@ @deathdoulas.com Yeah, and I'll put links in the show notes- Thank you ... so people can easily find the website.

It'll have your email address, all that stuff in there. But yeah, but this was such a great conversation. It went by so fast. I'll just have to- Yeah ... have you back on again sometime, so we can continue to talk about how to build this community that we need so desperately in our country. Yeah, it was a wonderful conversation.

Thank you, Jill, for the work you're doing to keep these conversations lively and interesting and bringing in voices, you know, to share in that conversation. So thank you for your work. 

And Jill has really cool T-shirts too, Jan. She- Oh. That's where I got the Death Doula T-shirt that I have. Oh, you have one of my shirts.

Yeah. Yeah. Yeah. Thank you. Yeah, 'cause I don't talk about them enough. I mean, I probably should, right? Be [00:41:00] out there. Mm-hmm. But again, it's like one more thing to do on top of all the stuff. But yeah, I do. I have a whole line of shirts. Some talk about death doulas, some just talk about life and dying and, you know, and I think they're fun.

I love them so. They're really soft and comfortable. Thank you. I appreciate that. Mm-hmm. Thank you so much. I appreciate both of you taking your time today. This was really lovely. 

Thank you, Jill. 

Thanks. If you've been listening to my podcast for a while and you hear me and my guests talk over and over about how important it is to create a plan for the end of life and to have the conversations with your loved ones about what's important to you, and you're thinking, "Okay, maybe it's time.

Maybe I should actually sit down and figure this out, instead of just hoping it all works out later," I get it. These conversations can feel overwhelming or scary or just like something you'll deal with another day, but you don't have to do it alone. If you want help creating an end of life care plan for yourself or for someone you love, maybe it's your aging parents, a spouse, whoever it is in your life, you can [00:42:00] book a complimentary 30-minute call with me, and we'll just talk.

We'll get clear on what's going on for you and what the next right steps might be. There's no pressure, just support. The link's in the show notes whenever you're ready. And if this episode made you think of someone, a sibling, a friend, or another caregiver, feel free to share it with them. Sometimes these conversations are easier to start when someone else opens the door first.

Thank you for being here. The fact that you're even willing to listen to this kind of conversation means a lot.