Conversations on Healing

Welcome to the Conversations on Healing podcast, where host Shay Beider speaks with renowned healthcare leaders, practitioners, and thought leaders to explore the world of wellness, the incredible powers of self-care, and what it truly means to heal today. Join us on this journey to become more whole, healed, and connected.

Shay Beider Welcome to the Conversations on Healing podcast. I’m your host, Shay Beider, and I’m grateful to have you joining me for today’s episode. I’m speaking with Diane Button, an author, instructor, and end-of-life doula who has dedicated her life to helping people approach dying and living with greater meaning and compassion. Diane is a founding partner of the Bay Area End-of-Life Doula Alliance, and an instructor for the University of Vermont’s end of life doula professional certificate program. With a background in counseling psychology, she has served as a board member for the National End-of-Life Doula Alliance, and as a hospice volunteer, bringing wisdom and tenderness to her work at every level. Diane’s books and teaching have inspired many to think deeply about legacy, love, and what it means to live a life well lived, all the way to its final moments. In today’s discussion, we will dive into stories from Diane’s book, what Matters Most, and the lesson she has learned Through her work.

We’ll explore a beautiful story that’s called “Pink Glitter,” about how every day is special enough to use and pull out the pink glitter so that we don’t waste any precious moments. We’ll talk about how Diane came to this idea of self-love and the acceptance through her experience of personally being diagnosed with breast cancer at age 47. Diane has also created what she calls a final checklist that she uses both with her clients and herself. There are six questions that she deems important to ask- not only to people at end of life, but for all of us who want to stay really in tune with what matters most. All of Diane’s stories and experiences leave important lessons about living a meaningful life, so please join me for this important conversation.

Well, Diane, welcome to the Conversations on Healing podcast. I’m so happy to have you with me today. I was thinking about the dialogue that we’re going to have today after reading your book, that we’re going to talk about, “What Matters Most.” And I thought about really the essence of this is: lessons that people who are in the process of dying can teach us about living- about living more fully. And I honestly can’t think of anything more important than lessons about how we get to that stage at end of life where we don’t have deep regrets, or if we do, we know from many of the stories in your book, we can still do all sorts of work to resolve them. But what really is more important than learning to live in a way that will leave you, by the time you reach the end of life with a sense that you lived well, right? There’s not, to me, not much more that in life that’s more important than that. So I’m really happy to have this conversation with you.

Diane Button Thank you so much, and I’m really excited to be here. And I love that intro piece right there because it’s so true. It’s really lessons the dying teach us about living, and living is the important part to remember, right? But when we know we can do better and we can live better and we can live differently. When we know what will matter most at the end of our lives, then it can change us. And that was the whole point of this book, really.

Shay Yeah, it gives us choice, and choices are so powerful, and you have so many beautiful stories in the book, so I’m sure we’ll touch on some of those. But I just kind of want to start with the basics because you’re an end-of-life doula and many people may not know what is an end-of-life doula. So for listeners that are unfamiliar with that body of work, I thought maybe you could start just by sharing what an end-of-life doula does and how you came to that calling.

Diane Absolutely. Well, an end-of-life doula, sometimes called a death doula, but I prefer “end-of-life doula” for the reason that we really support people, the dying and their families through the time they call us, maybe when they get a terminal diagnosis until death, and then often, sometimes after that, we support the families. So we really are companions. We’re completely non-medical, so we don’t get involved in anything that hospice gets involved with. We trust that the medical team is going to be taking care of that, and we are going to be spending time with our clients working on the practical, the comfort issues, the spiritual issues, maybe issues around unfinished business or legacy at the end of life when people want to know were they loved and did their life matter, we’ll walk with them through those conversations. The hard conversations, maybe some that a lot of people like to avoid, but end of life doulas don’t avoid those conversations. And I think that’s one of the greatest gifts and skills that we bring to the bedside of the dying, the willingness to just dig in and do whatever we can to create peace and comfort for the end of life.

And then you asked about how I came into this calling, and I really think a lot of doulas- the first experience I had with death when I was holding my grandfather- really started me on this journey. I didn’t know it at the time. Well, let me just back up a second and even say when I was 15, I worked in a convalescent home, got to know a lot of people there, then I worked in an emergency room, got to know a lot of people there- different kinds of stories, maybe different kind of endings. And so I think I’ve been around death for a real long time. But when my grandfather died and I was holding him in my arms and he was smiling and he had this big, giant, beautiful smile on his face- and he was a very serious man; he was a plastic surgeon that worked with burn victims, and he had seen some horrific pain and suffering.

And I know that he grieved a lot, and I also know that he loved me a lot, but he wasn’t usually very outwardly joyful. So to see that smile on his face, I thought, “How can I die with a smile on my face like that?” And it inspired me, and I started learning about death and dying and reading about existential psychology. Went back and got my master’s in counseling, started volunteering at hospice- which is a really great step for people who want to do the work, and if you can volunteer at your local hospice, you often get a taste of what our work is like. And then from there, I started my doula practice about eight years ago or so, and I love it because the work of the doula allows us to have time. So many medical providers and hospice workers are very stuck on time these days. They’ve got huge caseloads. So we’re able to come in and spend sometimes a day or sometimes I might sleep over with somebody who’s alone. And I feel like that’s a really important part of my work.

Shay Absolutely. And you talk in your book, “What Matters Most” about your grandpa, Charlie, and that beautiful smile and how that inspired you to begin a much deeper journey of working with people at end of life. And a central theme in your work is helping people to identify what matters most and to heal while there is still time, right? No matter what that timeframe looks like. So I’d be interested for you to share a little bit about some of the most surprising or transformative lessons that you’ve learned about what does truly matter most at end of life. And I’ll just share with our listeners, if they read your book, “What Matters Most,” they’re going to get so many beautiful stories, and at the end of each chapter, you define a lesson that was learned. And so there’s many, many of these, but I want to give you an opportunity to share some of the ones that really feel significant to you.

Diane Okay, there’s so many and there’s so many more. Even since I’ve written the book, I’ve had more clients, and I learned something from everybody. So that’s actually a very hard question and I could go on all day about it, but I’ll just pick a few of my favorites and I’ll give you a little short version of them. I think self-love is a really important lesson because it’s really hard to love someone else if you don’t love yourself first. And this is sort of a personal story, but one that I learned more about from a little boy named Drew. And Drew was born with a skin disease and he had brown spots all over his body, and he was only three feet tall, but he was born loving himself, and he just loved himself through his whole life. And people stared at him and other people- his family and the doula colleagues that worked with him- would get very upset at the way people treated him.

But he somehow found this deep, deep love for himself throughout his whole life until he died at age 23. And that story really sort of struck something in my heart because I had never really loved myself. I always found my flaws. I always noticed what was wrong. I always thought I wasn’t doing enough or I could do better. And then I got breast cancer. And so I got breast cancer at age 47, and I had three young children, seven, eight, and ten years old, and I didn’t know if I was going to live or die, I was bald, had acne all over her red spots from the chemo. I was so skinny, flat chested after a double mastectomy. And one night I got up to go into the bathroom and I just looked at myself in the mirror and somehow I saw something beautiful and it was really a light from the inside out. And I learned in that moment where beauty comes from and that we’re all beautiful- everybody’s beautiful- and sometimes we just have to pause and remember that in ourselves, that it’s not the little tiny superficial things on the outside that really make us beautiful. And that’s a really important lesson, and I think one that I wish other people wouldn’t take decades and decades of their life to learn it.

Another lesson that I love so much- and a lot of the lessons are about present-day moments because really that’s all we have. We have this moment here with you and me. And so I found myself spending a lot of time thinking about yesterday and tomorrow and kind of missing the moments of life. And so there was a woman named Mari that I was working with, and I was surrounded at her bedside with her husband and her two young children and her, and Mari, we thought, would die fairly soon. She hadn’t eaten or had anything to drink or spoken for a couple of days when all of a sudden she sat up and she looked at her husband in the eyes and she said, “Thank you for being the love of my life.” And she looked at her daughter and she said, “Thank you for being the most kind and sweet daughter I could ever have imagined. I love you.”

And she looked at her son and said, “I’m so proud of you, and thank you for being such an amazing son. I love you.” And she looked at her sister and she said, “Thank you for being the most amazing big sister for my whole life and having my back since I was a little girl.” And I’m trying not to cry because I always want to stay the calmest person in the room, but I was starting to cry. It was just so beautiful. And then she looked over at me and she said, “Thank you for being my friend.” And then I cried and I cried when I was driving home that day too because I realized that so often I just say “thank you” as a passing thought. “Thank you, thank you.” Without saying “thank you for bagging my groceries.” “Thank you for taking the time to call and check on me.” “Thank you for helping me put my suitcase in the overhead bin.”

So I think it’s a really great lesson to learn how to express your gratitude and to do it as a complete thought rather than just a passing thought. And I think I’ll tell you one other story that really shaped me. It was about a man named Hendricks. And Hendricks- he lived in a mansion. I pulled up to his house, I had to press this gate that was the biggest gate I’ve ever seen, like going into a park or something. And I drove up the hill to his house through all these vineyards, and I went into his house and it was huge, and it was clean and it was perfect. And there was art all over the walls, and you could see out of every window, vineyards in every direction. And the first couple of times we met, he didn’t talk very much, but the third time I met with him, he said, “I’ve been obsessed with grapes my entire life. I’ve spent my whole life accumulating money and possessions and land, and I’ve forgotten about what matters most. I forgot about relationships. My wife is gone, my children don’t speak to me. I have very few friends because I was always trying to get something. I was always trying to get more and more and more. I missed it, and now I’m going to die alone.”

And that’s sad- that he missed the moments, he missed the opportunities. He missed the chance to focus on love and relationships in exchange for accumulating this fame and success and awards and such, and at the end of life, that doesn’t matter at all. That doesn’t matter at all. So I remember driving down from his house that night and just thinking to myself, “Wow, I’m just never going to miss the moments. I’m not going to miss an opportunity to say, ‘I love you’ to my friend, or to spend time with the people I love.” Realizing that when you get to the end of the life, relationships are really one of the most important things, and everything else kind of fades away.

Shay Yeah, absolutely. And you have this beautiful tool that you use when you’re working with people that you developed. What’s so lovely about it is you’re using it with people that are in an end-of-life process, but it’s something that you use yourself every month. You write about in the book that you do it. And anyone listening could do this on a regular basis. It’s called the Final Checklist. And essentially it’s these six powerful questions that you ask people as they’re kind of approaching end of life. But like I said, you use it, and I’m now going to use it too. I think it’s beautiful. It’s these six questions which are, Who matters most?- the who in your life matters most; What matters most?; What worries you at night?- what are the things that keep you up at night?; What brings you joy during the day?; What’s left unsaid?; and What’s left undone? And I’m thinking about, just for people that are hearing this and are like, “Ooh, could I reflect myself on some of those questions?”- what have you learned about how these specific questions can help to unlock healing conversations? Why do you think these are particularly powerful questions to be asking ourselves?

Diane Well, let me start by telling you how these questions came to be, okay?

When I first started working as a doula, I had a clipboard that I brought with me to every client- literally a hundred questions, maybe more. And I knew I wasn’t going to get through all these questions, but it dawned on me one day that I had spoken to a client with my clipboard in my doula bag at the foot of my chair, and I never once looked at it, and it was really the best conversation I ever had. And so it got me thinking and remembering that these people are dying. And day after day, the nurses come, they go see their doctor, they have to answer all those questions all the time. They just get bombarded by questions. So I wanted to be really coming from my heart when I showed up to my clients, but I also needed to check in so that I could know what was most important to talk to them about or to work with them on that particular day.

So I started consolidating the questions so I didn’t have to ask a hundred and something questions, and over time, I narrowed it down to these six questions. And what I’ve learned is that by asking my clients these questions, or by asking myself these questions, I can start every month with a clean slate, and I can identify right away what’s bothering me, who I might need to call to apologize to, who I might need to call to say thank you to what projects I might be working on that are just sitting there that are really meaningful to me that maybe I should start thinking about. And the most important question for my clients that really I think is also the most important question for me and my friends who do this project every month, is “What worries you when you’re laying awake in bed at night?” At the end of life, that can become a very urgent question.

If you’re worried about unfinished business- a phone call that was never made, someone you hurt years ago that you didn’t ask forgiveness for, or you’re worried about, your children aren’t going to remember you, or you might need to do a legacy project or your finances, or what’s going to happen with your garage filled with things- these are all things that worry people at the end of life. But when we pause to ask ourself what’s worrying us right now, that gives us an opportunity to contemplate why that’s worrying us, what steps we might want to take to process through those things that are worrying us most?

Shay Yeah. So one lesson that resonates deeply is about not waiting to say what’s in your heart. And you share a story- you share a number of stories in there- where people have things that are maybe left a little bit unresolved. And one of the women I know had been estranged from her children for many years, but she goes back and tries to reconnect. And in her situation, she’s very fortunate. She’s actually able to reconnect and is with them and gets to experience being with them and have some possibility for healing and forgiveness right at the end. And so what have you learned about that ability to really say what’s in your heart right up to the very end?

Diane First of all, start now. That’s really the best thing- to just not hold back. There’s a few things that we really need to say on a regular basis. I love you. I’m sorry. Thank you. I forgive you. Will you forgive me? These are words that are just part of our lives when we’re in relationships with people.

And what happens at the end of life- and I think it happens at the end of every month too, when I do the Final Checklist- and I think, “Who is it? Who are the people that I just took for granted and didn’t really pause to acknowledge in my life in whatever way I want to, or I feel like I need to?” At the end of life, these things can become really urgent. And we have stories of people who are trying to reach out to someone from 30, 40, 50 years ago that they hurt or they said something cruel to them. They haven’t been able to let it go.

And that’s one form of unspoken words that accumulate at the end of life. And then there’s another kind of unspoken words- from people who just don’t share their heart. And I’ll tell you one quick story from the book. It’s a doula that I was working with named Hannah. And Hannah and I had a client, and her grandkids were surrounding all of us, and we were all talking maybe just about the day and just about what they were doing in school right now. It wasn’t very deep at all. And then they said goodbye to their grandma- and she was dying- and they didn’t want to be there. And so they went and left, stayed close by, and she eventually died. But before she died, she pointed to the pictures of her grandkids on her wall and she told Hannah what those grandkids meant to her.

And she talked about her one grandson and how proud she was of him and what he was going to do in the future and how sad she was that she was going to miss who he was going to become in the world. Then she died, and I stayed with her, and Hannah went out to talk to the grandchildren. She said to him, she sat down beside him and she said, “Your grandmother was so sweet, and she talked about you and how proud she was and how much she’s going to miss not seeing everything you do in your life.” And he said, “Wow, that’s amazing. She’s never said anything like that to me. She’s never once said she was proud of me. She’s never once talked about what I do in a way that made her feel good or made me know that she was proud of me.” And that was a great example to all of us about a missed opportunity. She told Hannah- and that’s wonderful that he got to hear it through Hannah- but how beautiful would that have been if she would’ve taken the time before she died to tell him directly?

Shay Definitely. And there’s so many of those potential missed opportunities- but then ways that we can turn them around with the knowledge, because in a way, it’s almost like a skillset in the book that you are helping people to cultivate. While we still have the chance, there are plenty of things that we can do differently so that by the time we reach the end of our lives, we have maybe a better sense of resolution.

One of the things that you talk about- it’s kind of one of your signature teachings, I feel like- is using the pink glitter, and essentially I’ll have you share the story. But this is the idea of not saving things only for special occasions, but remembering to appreciate and live in the moment now. So would you share a little bit about the story behind using the pink glitter?

Diane Absolutely. It’s one of my favorite stories too, and it’s also proof that we can learn from people who are eight or who are 88 or 98- we learn from every single client. And this little girl, Rosie- she was six when I first met her- and she was born with cancer, and she was just a spunky, joyful kid and just so full of life. And she had been in and out of the hospital her entire life. She was put on hospice, and I was called in initially to support her siblings. I would take them to the park and help them with their homework so Rosie’s parents could be with her while she was getting her treatments every Wednesday. So I got to know the family. I didn’t get to know Rosie very well. And her mom told me one day that they had decided to stop treatments- and that they weren’t working any longer- and she was just so worried that people were going to forget Rosie.

So I said, “Well, do you want to do some legacy work and some art projects?” And she said, “Oh my gosh, yes, yes.” So we jumped in right away and we started doing all kinds of projects, stepping stones and planting a garden- we did all kinds of projects as a family. And so I found out that Rosie loved to paint, and so we were painting one day- I’d always bring canvases and paint- and I asked her one day, “What’s your favorite color?” And she said, “Pink glitter. I love pink glitter. It’s so shiny and so bright.” And I obviously had never heard of a color called pink glitter before. So I asked her mom about it, and her mom said, “Oh, pink glitter is a paint that her grandmother mixed years and years ago, and we keep it up there on the top shelf, we only bring it down for special occasions.”

And I kind of looked at the mom, but I didn’t have to say anything because she figured it out- that indeed, this is a special occasion. And she ended up taking the can of paint down, and we made art with pink glitter that entire day, and it was just so beautiful. And then it became close to Christmas time, and Rosie wanted to make a gift for her family. So I came next time with a bunch of canvases. Each person in her family painted their favorite color on the canvas, and then they painted on one side leaving the other side open.

The next time I came, Rosie and I dipped her hands in the pink glitter paint and we put her hand print right on each person’s painting and then sprinkled it with silver glitter- which is how the color became pink glitter. And so after Rosie died, her family had these pink glitter masterpieces in their living room, and it was so beautiful, but it was a reminder- such a great reminder- to use the pink glitter, light the candles, drink the good wine, break out the good whatever you’re saving, wear the fancy dresses and the fancy underwear.

Don’t save everything for a special occasion. The lesson really is that today is a special day, and right now is a special occasion.

Shay And just that idea- we never do know for sure when our last day has arrived. And so every day, in a way, is so special because of the potential of each day. But also, we don’t know for sure which day is our last day. So it may be the last- so might as well enjoy while we can. There’s another great story that comes up and I was fascinated by this idea of a joy Counter. So it’s this practice that you talk about through one of your clients that was embracing this at the end of his life. And it’s about finding and counting the moments of joy even amidst like grief and loss and end of life. But you can do it- anyone listening to this show could do it. I thought maybe you could share a little bit about that practice and what it is and how people could use it. And of course, if you want to share a little bit of the story that you detail in the book about how you learned this practice of using a Joy Counter.

Diane Okay. Well, first I’ll give a brief story of the Joy Counter and how it came to be. It wasn’t my client- it was one of my colleagues, Gabby Jimenez. It was her client, and this man was an outdoorsy person, very, very active. And he got a glioblastoma, which is a brain tumor, and he was confined to his hospital bed in the middle of his living room. And when Gabby went to see him, he had all these bracelets hanging from the grab bar that he used to lift himself up. And this tally counter thing was hanging down from his bed and Gabby asked him, “What’s that?” And he said, “That’s my Joy Counter. I use that because here I am- I can’t go outside. I’m trapped in my body. And I was getting depressed. And then I realized, wait a minute: there is joy when my wife gives me a hug, when the cats jump on my lap, when I look at old photos, when friends come to visit, when I get my favorite ice cream.” Every time he would experience joy, he would click this tally counter- just to keep track of his joy.

And it’s a very present-moment way of being in the world and acknowledging that even in the hardship there is still good, and there’s still love, and there’s still laughter, and there’s still lightness. And there can be really good times, and you can still experience joy even in the hard times. And so we started using this Joy Counter with our clients because sometimes people do feel depressed or they feel like they’re just focusing on medical treatments all day long.
And so we start helping our clients to identify that. Sometimes just the ordinary moments- when you pass by a flower or you see a bird or you hear somebody’s laughter or you look your grandchild in the eye- you are still experiencing joy in the midst of the hard stuff. So then we give out Joy Counters to our clients and they just click them. And every once in a while they’ll tell us, “Wow, I had 62 experiences of joy today that I would’ve never paid attention to.” So that’s how the Joy Counter came to be.

Shay I love that. And for people that are listening that want to start counting moments of joy in their life- or you could pick one day a week where you do this, there’s a lot of different strategies for how you could approach this- I did find there are apps. There are counter apps, so I found one called Counter, but there’s a bunch of them actually, that also- if you wanted to do it using digital- so you could certainly buy, and I found them online for like $6. You can buy a little tally counter really inexpensively if you want to go manual or if you want to go digital. There’s also apps that are free where you could count your joy in a given day and keep track. And we know so much about now positivity bias in addition to negativity bias- just the way that our brain is wired and functions. And when you do an activity like that- when you practice looking specifically for moments of joy- you’re creating more positivity bias in the brain, which is a great thing to do. It does boost and elevate mood and increase happiness. So that’s so cool. I think it was a beautiful practice.

Diane Thank you. I love that. It also reminds me of how we miss the ordinary moments of our lives. There’s really joy and beauty in our cups of coffee in the morning or where we sit to have our coffee or petting our dog or the little simple moments we forget. Those are the things that link together to form a life. It’s not the weddings and the vacations and the graduations and the big moments. Really, a life is made of a series of ordinary days. So if you pay attention to what brings you joy in an ordinary day, there’s another lesson there too.

Shay And you also share, which I think is another fun practice for our listeners, a story that it sounds like your daughter taught you- it’s like a reflection practice that she was doing with you one New Year’s Eve, I believe. And it’s about thinking about the different cups in your life, and some examples that you gave of what the different cups in your life could be. Are the cups containing things like health and fitness, maybe your spiritual cup, your relationship cup, your emotional wellness cup, your social cup, your career cup, your financial security cup.

And then when you added your peace and calm cup- and so you think about those categories and then you ask yourself, “Are these cups full or empty or somewhere in between?” And you could even literally use cups- take out seven or eight, however many you want to do, and fill each one of them based on the category. And then really use that as a reflective practice to notice, for example, for the coming year what you might want to change or where you need to not overfill your cup, but maybe where your cup is empty. So tell us a little bit more about how that practice is something that you’ve come to embrace.

Diane I love that one because not only the cups that you listed are part of each client’s, or my own practice when I do it, but you can always add some to what’s important to you- your sleep cup or your joy cup- or you can keep going and going and adding as many cups as you want.

But to actually have a visual- I mean, we took out the cups and we had a pitcher of water, and we filled each cup to where we thought our joy cup was and where we thought our social and our career cups were filled. And it was amazing because everyone in our family had different cups filled to different levels, which really surprised me. And it really was fun to do it in a group because it helped me understand what my family was going through or what was important to each person at that time.

I like the exercise. It’s so visual and it’s so clear, and you can see if your career cup is overflowing, but your social cup is only one fourth of the way full, then, “Oh, maybe I can take something from that cup to add it to that one.” It becomes kind of mathematical as a way to look at what might be missing and what you might need to do to add some depth and some meaning to your life at that particular time.

Shay Yeah, that’s fantastic. I think I’m going to definitely do that one too. And I like the idea of doing it with family or with loved ones, because then you do also understand for them- they might feel so differently about their social cup or their joy cup- and to see how they would define it, I feel like, would be so fascinating as well. You talk in the book about the importance of self-care for caregivers. So when someone is nearing end of life, often there’s a huge need for caregiving support from their friends and family. And from your experience, caring for the caregivers is so critical. And for you, what does meaningful self-care look like for people that are caregiving for someone at end of life?

Diane I think caregiving is really one of the hardest jobs there is on the planet. And a lot of times caregivers cannot pause to take care of themselves. We say sometimes a caregiver needs a caregiver- and that’s who we are. Sometimes as doulas, a lot of times we show up thinking we’re going to be working with a certain client, but realizing that it’s the caregiver who’s really having a difficult time and who’s really struggling.

Sometimes people at end of life are very much at peace, and the caregiver is the one that’s just giving and giving and giving and not regenerating their own resources so that they can be there for that person, but also there for themselves. We try to create space for caregivers to take breaks. It doesn’t always work. Sometimes people are so committed to being there with someone that they aren’t going to leave.

Sometimes we’ll show up- we call it respite care- and we’ll show up and spend three or four hours with the client, and the primary caregiver will just leave to take a shower or to get some sleep. Because a lot of people don’t want to leave the room or the house. They’re not willing to go out too far, especially as death gets closer and closer. But I think to be able to find those little moments to regroup yourself, even if it’s just a couple minutes outside of fresh air and looking at something beautiful for a minute- like a flower or something- that can really bring you back to the moment and identify the fact that you are your own individual human being and that you do need to take care of yourself first. It’s difficult. Some people say parenting is the hardest job, and I get it.

It is very, very hard. I think caregiving has a different kind of challenge to it because often the grief that comes along with it and the sadness and the fact that there might be somebody who you’re going to lose who you love at the end of it adds a lot of emotional challenge to the role of the caregiver. So I just find it to be really challenging and one that every time I go to a client, I want to know who their support system is, and then I want to be able to meet with those people to figure out any ways that we can create some sort of peace and comfort in their lives as well as they’re going through this process.

Shay Yeah, that’s so important to understand in the work that we do through Integrative Touch- the nonprofit organization that I founded- so much of it is about supporting the caregivers. We saw as we worked with so many families who have children who are ill or dying, that it impacted everyone- the siblings, the parents, sometimes the grandparents. Whoever else is in those primary caregiving roles, they need support every bit as much, if not more. Just like you were saying, sometimes they actually need it more than the person who’s in a process of dying. So that piece is not terribly well attended to in the way our medical system is structured. And so to be able to attend to the caregiver is such a valuable piece. It’s really something significant.

Diane People are grieving- there’s anticipatory grief going on before someone dies- and then afterwards there’s the deep work of grief. And so the caregiver role and the hard part of being a caregiver really extends beyond the end-of-life journey. And so I think being able to teach people, educate people about grief and what journey they might be going through or living with for the rest of their lives is really helpful.

Shay Yeah, definitely. And you talk in the book about how sometimes people assume end of life is only grief, and that actually there’s a lot more joy than maybe people would imagine. But what do you think doing this type of work has taught you about grief? If you were to distill some of what you think you’ve learned about the grieving process, what do you think are some of the most essential elements that your clients have taught you about what grief is and how to grieve?

Diane The main thing I think- that maybe sounds hard- is that grief never ends. It never ends. And so learning to live with grief is a critical piece. So when I work with clients after someone’s died, we don’t use the words, “You’ll be better in a year” or the timeline thing. That’s not what I found to be real. I found that people need to adjust to a loss and learn to live with that loss. Now, my husband lost his first wife who was pregnant with triplets when she died, and I met him in deep, deep dark grief. We’ve been together for 30 years, and he still grieves. And it just worked out that I was able to see his grief and able to make space for it. Even today, little things might come up- reminders. It’s not as intense as it was 30 years ago, of course, but it’s still there.

And so I think for the griever to understand that grieving can be a lifelong journey, and it’s actually a testament of the love that you have for someone. So in the case of my husband, I don’t want him to stop grieving because I love his capacity to love, and that grief really showed me his capacity to love someone. That’s part of the reason I fell in love with him- because of his grief. And so I think we have to remember that it’s going to be our constant companion in our lives and not to try to push it away. The more we push it away, the more we can get sick.

We can not be processing our emotions. And life is a series of emotions- it’s not just happy or sad. It’s a series of emotions. And with grief comes a lot of emotions. And some of them are really joyful and positive because they include memories and stories. But if we don’t allow them to come in, then we’re denying ourself the ability to grieve, which is a human emotion. And sometimes we also deny our ability to love and to look back with positive emotions and positive feelings about a situation. So I think being able to just unzip a little bit and let the emotions in and let some emotions out and just feel your grief is such an important part of the healing process.

Shay Yeah, it most certainly is. Toward the latter part of your book, “What Matters Most,” you describe some tools for living well, and one of them- you actually alluded to earlier in our conversation- is this idea. You create a specific practice of taking a minute each morning to really look at yourself in the mirror, not a quick glance, but a deep gaze into your own eyes and really taking that in- like you said, being able to practice self-love essentially, and seeing the beauty beyond all the things that we judge as imperfect and flawed and all the silliness- but actually taking the time to gaze deeply enough to get to the deeper beauty.

And then there’s another practice where you talk about visualizing your final moments, where you actually think about: ‘If I were to visualize my final moments, who’s there? What is the environment like? What music is playing? What will I miss the most? What do I want people to remember?” Can you share a little bit about what these practices can teach us about both living and dying?

Diane Absolutely. The practice of looking at yourself in the mirror, it’s part of a meditation that I do called Pure Love, and it’s just reminding us of the essence of who we are on the inside. Yes, you see your face. And my grandmother used to say the wrinkles or the roadmaps of every place she’s ever been in her life, and she was able to see the beauty in her physical being, but to look inward also and just remind ourselves that we’re beautiful, that we’re worthy, that we deserve to have a good life, and just kind of be kind to yourself, be good to yourself today when you go out into the world. I think that’s a really important practice. And I know that when people are sick and dying, they start forgetting about the parts of them that they don’t think are particularly physically attractive, and they go inward and they can see their inner beauty so much easier than I ever could.

And that’s what got me starting to do that is just to think about the good parts of myself inside myself. And I think to just take a moment to acknowledge your goodness and your beauty and the positive things about you every day is a great way to start the day. And the exercise that you talked about, about imagining your final dinner, I call it mint jelly because I had an experience with my grandfather that gave me this exercise at the end of his life. And as I said, he was a surgeon and he wasn’t very demonstrative, and I knew that he was holding in a lot over his life. And at our last dinner, he kind of leaned forward and I thought he was going to say something really emotional and significant, and he said, when I die, I’m really going to miss. And he paused and he leaned in.

I’m like, this is it. This is the moment where my grandfather’s going to say the words that he hadn’t said in his life. And he said, “I’m really going to miss mint jelly.” And I was like, “What? You’re going to miss mint jelly?” And it was an example really truly of- he did miss the opportunity there to say the words- but it was just so funny because I thought, “Okay, finally he’s going to say it.” And I knew he loved me. But during that meal, he had Frank Sinatra playing in the background. We were at the table we’d been sitting at for 20 or 30 years. His whole family was there, and my mom had prepared his favorite meal, which was lamb chops and mint jelly and some other things. And so I do that exercise when I teach a course about end of life at the University of Vermont.

It’s our final exercise of the course. And you just ask yourself, “If this was my final meal, who would I want there? What music would be playing? What would I have for dinner?” And you kind of create the setting and it takes you to that place and it causes you to pause to think about- who are your people? Who would I want surrounding my bedside when I take my final breath? And it’s just another exercise that brings us to the end of the life and where we are right now simultaneously, and reminds us that tomorrow’s not guaranteed. So we might not even get an opportunity to have that final meal. But pondering it and contemplating what matters most at the end of life- which is almost always including people- is a great way to just think about what matters most now. Because what matters most at the end of life is also what matters most now- it’s just that we don’t always pause to think about it or to talk about it when we’re moving so fast

Shay And contrary to what a lot of people listening might think, just again because you’ve had an opportunity to work with so many people at end of life, there’s a lot of healing that happens in a process of dying- or there can be. There’s an opportunity for a lot of healing. So you can actually be actively dying and actively healing at the same time. And it can actually be one of the most healing periods in your entire life if you embrace it in a certain way and give yourself an opportunity. And some of that’s defined by circumstances too. But I would love to hear based on your work, what you have come to understand as what healing is?

Diane What healing is. Well, from the perspective of my work as an end-of-life doula, healing- first of all, what is healing? Healing is not about fixing. It’s not about curing. It’s not about trying to avoid death. It’s about restoring a person to health- emotional and spiritual wellbeing. It’s about creating a place of acceptance, because a lot of healing at the end of life is about acceptance- acceptance of all that was, all that is, and all that will be in the future.

So once we talk about regrets and fears and unfinished business, we can start focusing on healing. And a person might still be dying, yet they might feel more whole, or they might feel more complete, more real, more honest, or more satisfied with their lives than they’ve ever been before because they’re showing up. They’re showing up for their lives fully at the end of life.

And that’s why it can be such a powerful place. It’s when people go inward and they stop caring about politics and economics- all those kinds of things don’t matter anymore- and people go inward. And so part of that healing also comes from being able to let go- letting go of control, of our roles, of our attachment to our material possessions, even to our identity. And eventually healing comes from letting go of the body itself. So it’s about letting go and allowing the body to sort of sink into a natural flow of life and of death, and it becomes its own sort of spiritual and even sacred kind of healing. That’s what I see- death as a super spiritual, sacred healing.

Shay What a beautiful way to describe it. A super spiritual… say that one more time.

Diane I said, I see death as its owns or spiritual, sacred kind of healing.

Shay Wow. That’s just lovely. I love that. And something we haven’t stated explicitly in this conversation- I think we have implicitly- is the power of presence at the end of life. And I just want to name that out loud because very often it isn’t about the words, because so much of this happens in silence, just through presence and just being a loving presence- being fully alive, awake, and aware in the moment. And so I’d be interested to hear your thoughts about the power of presence in being as being a death doula and working with people at end of life.

Diane Yeah, presence is key. I think it starts, for me personally, when I walk in the door- I want to be 100% there when I show up. So I do an exercise where I let go of my worries, what I’m going to do after this meeting- I let go of everything before I knock on a door so I can be fully present. And I’ve actually started doing that now when I leave someone’s house to go back into my world so that I can also be present. So I’m not carrying and I’m not holding a lot of what happens during the course of my day that isn’t mine to hold- anybody else’s story, for example.

But to be present means that you’re showing up for your life. You’re not missing the moments when you’re present. So that’s why a lot of the stories and a lot of the exercises in the book, and a lot of the lessons are a call to presence. That’s why you say thank you, by saying, “Thank you for begging my groceries.” It causes you to pause and be in the moment. It’s not just a passing thing. And I think that we can do that every single day by paying attention or stopping to look at something beautiful for a minute and just take it in. We need to bring ourselves back to presence because our minds are going super fast as we speed to the yoga class. I mean, we’re moving too fast. And so I think the idea of being present is the way we get the most time out of our life.

Shay And you talk about, I believe he was a chaplain who was kind of a mentor to you early in your career when you were starting to sit with people who were dying. And he talked about that kind of Zen mind, beginner’s mind. And I love the way you phrased it in the book, this is just my own paraphrasing- but where you talked about that idea that even if you had sat with a thousand dying people, you never sat with this one.

And that has been entirely my experience in working with people who are ill or in a process of dying- you have to approach every single interaction as if it’s the first time because it is, it’s the first time with that family, that person, with maybe that specific manifestation of that illness with that culture, with that community, you layer, layer, layer- it is a first every single time. And that ties so deeply into being present, being able to approach it with that beginner’s mind no matter what. Even if you’ve done it thousands of times, it still goes back to something that is entirely rooted in the now and that that is an essential part of the work that you’re doing.

Diane And it’s also how we honor people. If I were to bring somebody else’s story into the bedside of someone else, then I’m not really taking the time to get to know that person. I’m assuming ,I’m making assumptions about what’s going to happen next with that person’s disease or what emotions are going to come up around this conversation that they’re having. So beginner’s mind is a critical piece of our work. We’re not experts, and every single journey is different. There is not one client I’ve ever had that I could not write a story for this book about because you learn something different. And by practicing beginner’s mind and going in without being an expert, it causes you to ask more questions about that particular person: “Would you like to share with me any cultural or spiritual beliefs or rituals or anything that’s important to you that might help me to understand you better?”

And these are the questions that- if I just assume, “Oh, this person is this religion, or this person came from that background” that I’m going to know what to do because it happened to me with a different client- I’m probably going to be wrong. And so that’s the assumption that I make, is that I’m going to be wrong unless I ask. And that’s what the beauty of beginner’s mind really is all about. It’s not feeling like I have any answers, and that actually makes my work a lot easier. And it makes life a lot easier too, because if you don’t need to know the answers to everything, you’re always learning, you’re going to grow. And you don’t have to be afraid of a question because it’s okay not to know. It’s okay not to have an answer. It’s not okay. It’s okay not to be an expert.

Shay And I think that’s comforting for people that are listening who, at some point in their lives- whether currently or in the future- are going to be sitting with a loved one who’s in a process of dying, that they don’t have to know how to do everything either, right? Because no one knows, because each time is the first time- because it’s the first time with that person. And so there is a comfort to be had in that, knowing that it is always the first time for everyone. Well, just in closing, Diane, I want to give you an opportunity- if there’s anything else we haven’t touched on in our conversation today that you wanted to share with our listeners.

Diane Well, we didn’t really talk much about legacy. I think I’m just going to mention that every one of us is leaving a legacy, whether we intend to or not. So we have a choice every single day- that’s part of the present moment that we’re living in. When you get to the end of your life, you’re going to ask yourself, you’re going to look back and you’re going to say: “Was I loved? Did I love well? Did my life matter? Did I make a difference? Is the world a better place because I was here?” And this is all part of your legacy at the end of life. No one’s holding onto hundred-dollar bills, no one’s staring at the awards on their wall. It’s all about relationships, and it’s all about how you’re going to be remembered. That becomes really important at the end of life. So I would just suggest for people to start thinking about that now and ask yourself how you might answer those questions today, because that helps you to prepare and live well until you get to the end of your life.

Shay That’s wonderful. And sometimes people think of that word “legacy” as being so big, and you talk about this actually in the book- like, “Did I dedicate a building or something?”- But actually, it’s not that. I mean, that’s part of it, but for most of us, our legacy is quite different from that. And funny enough, I was at the airport recently coming back from Washington D.C., and there was a man who was checking us in to go onto the airplane and basically scanning our boarding pass. And I have never, in all my years- and I’ve traveled a lot- seen anyone who approached it with so much humor and joy. He was making every single person laugh, was engaging with every single person who got on the plane, calling them by their first name, saying funny things about them. And you could see it shifted everyone’s spirits. And that’s his legacy. And I’m sure there are many other parts to his legacy that I know nothing about. But when you think of it in that quick moment, he affected a hundred-plus people’s lives just like that. And it was in a matter of maybe 15 minutes or so, he impacted so many people’s lives. And I thought, my gosh, if he’s doing that over and over again, what a cool legacy, right?

Diane Absolutely. You remembered it- so you’re even his legacy. So imagine his family and the people who know him well and the stories they’re going to tell about him when he dies.

Shay Yeah, exactly right. It’ll be wonderful too. I would like to be a fly on the wall listening to those stories. I think they’ll be good ones. Well, thank you so much for having this conversation with me today. I really appreciate it, Diane. I think your book, “What Matters Most” is wonderful. It does distill a lot of the most important lessons that people who are dying can teach us about living and how to live well. So thank you so much. For your work and your important contribution.

Diane Thank you too.

We hope you enjoyed this episode of The Conversations on Healing Podcast. If you haven’t yet, please go to Apple Podcast, Spotify, or your preferred podcast platform and subscribe, rate, and review this podcast. It helps so you won’t miss an episode. See you next time.