This episode is chock-full of important information about a topic that affects so many. What is dementia? What symptoms might it include? Why does it matter to test for dementia? What is a “dementia advance directive”? What are the needs of caregivers? How can support groups help? Jessica Empeño is the National Director of Clinical Engagement & Education for the nonprofit organization called Compassion and Choices.
If you aren’t familiar with this key organization, search them up today. Their indispensable and free downloadable workbook on this subject is called the “Dementia Values and Priorities Tool.” Books we mention include: The 36 Hour Day; Care Boss; and The Best Friends Approach to Dementia Care.
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Do you believe in the paranormal, the mysterious, the supernatural, the extra-ordinary? Whether you are a believer or not, I think you’ll enjoy this week’s extended BLBD episode with storyteller Orion Couling. Get ready for a ghost story, a wondrous story, and ruminations about architecture, culture, and history – not to mention a spontaneous reading of a monologue from Midnight Mass about what happens when we die.
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One of Barbara Karnes’ recent publications is a booklet on food at the end of life. She believes that more education is needed in this area, as families often worry when people who are nearing the end of life from disease or frailty lose interest in food. Barbara gently educates that food is “the gas that we put in our car to make it go.” And when the car is no longer working, it no longer needs gas in the same way. What do we need instead? Love, connection, community, care. Barbara reminds us that at this stage the tasks are more spiritual: “What have I done? What do I think life is about? The spiritual component at this time is about coming to terms with the sacredness of being and the life that the individual has led." That's a lot of healing, and it's not about food.
For more information on Best Life Best Death please visit our website at www.bestlifebestdeath.com
Follow us on our social channels to receive pertinent and helpful resources on death, grieving, and more at:
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Ahh, denial. We all have it at times. How does denial play a role at the end of life? As BK says, “We’re a death-denying society, and we carry this denial inside on a level that I don’t know that we’re even aware of.” Combine that denial with the fact that caring for someone at the end of life is different than caring for someone who’s going to get better. Where can we find healing when the body can no longer be healed? When we’ve done the best we can, but we can’t fix the physical body, how do we have some quality time? And, why do people hold on at the end? This excellent conversation with Barbara Karnes, RN, explores denial, letting go, caregiving, finding meaning, and holding on.
When Atul Gawande - surgeon, physician, son of a surgeon - wrote Being Mortal in 2014, I wonder if he knew what staying power it would have. This timeless book captures many of the challenges we face in the US and other countries around aging, decline, disease, the medical system, and yes, ultimately death. Listen to this episode to hear a few compelling passages from the book about the importance of conversation and what a difference a little knowledge can make. (No, it’s not Dr Gawande reading, just me.)
Tracy Chalmers has written a guidebook we can all lean on. Rooted in five principles of care, she offers practical ways to walk alongside the dying, build a web of support as a caregiver, and navigate the inevitable storms of an end-of-life journey. The Nature of the Journey: A Trail Guide for Companioning Your Person on the End-of-Life Journey is a resource you’ll return to again and again. What can a companion do to foster connection? How do we “lean out” for help? What does it mean to bring presence to the bedside in an age of distraction? With clarity and compassion, this expert shares “applied wisdom” you can use right now. And she reminds us: “There are no do-overs.”
Talking with Jennifer and Karen brings BLBD back to basics, in the best sort of way. They share several “If Nothing Else” ideas. That is, “If I am not ready for big action steps, what little things can I do today to get myself better prepared for my inevitable end?” Death Doulas and Educators with The Heartwood Collective, these two women run courses for individuals, families and corporations called Peace of Mind Planning. If Nothing Else, listen to this episode and leave with some concrete ideas for your to-do list.
What does a deck of cards have to do with end-of-life education? Tools like The Dementia Deck, The Death Deck, and the EOL (End-of-Life) Deck offer easy-to-use, casual, and even uplifting ways to start meaningful conversations. Asking simple questions can help us understand our needs and wishes more clearly: “What does a good day look like for me?” “What brings me comfort in stressful situations?” “If I ever need round-the-clock care, I’d like to be supported by…” If you’re concerned about dementia — for yourself or someone you love — these conversation starters can open the door. Beginning the dialogue may help you feel more prepared, more connected, and a little more confident as you move forward.
In this episode, I sit down for a conversation with the producers of a documentary film called A Butterfly Has Been Released. The website sums it up beautifully: “With unfiltered honesty, authenticity, and humor, Allyson invites her family, friends and hospice coworkers into her dying experience. As time runs short, her community gathers to celebrate her life with a ‘living funeral,’ which Allyson hosts, and afterwards her natural, green burial. Throughout, Allyson confronts her own mortality and continues to create meaning and legacy, as her death approaches and beyond.” This conversation shakes up what you think might be possible, and shares the courage and creativity of a woman who found out she had only weeks to live. What would you do if you knew time was that short?
Maria Popova is a Bulgarian-born writer, curator, and critic best known as the creator of The Marginalian (formerly Brain Pickings), a long-running online publication exploring art, science, philosophy, and the human condition. What a treat to talk with her on this episode about birthdays, mortality, meaning, “un-selfing,” nature, daily practice, and the big questions that lie in the substrate of all human lives. How often do you get to think alongside a modern-day philosopher who believes that mortality drives everything we do?
Join me on BLBD this week, for a gorgeous conversation with Diane Button. Author of several books, Diane’s latest is with Maria Shriver’s imprint, The Open Field, an imprint of Penguin Life. With this work, she turns towards the stories and wisdom of her clients and shares just what the title says: What Matters Most: Lessons the Dying Teach Us about Living. We share some of the experiences in the book, talk about why these stories make a difference, and get Diane’s perspective on what thinking about mortality brings to our lives.
Jody Gelb has written a deeply moving memoir about the life and loss of her daughter. Brain damaged at birth, life with Lueza is as complex as you imagine it to be. Jody captures and condenses details of her experience through the years, and ultimately puts them together into what she calls a micro memoir. Wondering if these short chapters were “right,” Jody says, “At some point I thought, Can it just be what it is? Can this be my way of telling a story? This is the way it is. Can it be this?” She May Be Lying Down, But She May Be Very Happy is a brief, moving book about a brief, moving life – with large moving lessons for all of us about life and love.
This week’s podcast is especially close to my heart. In the spring of 2025, my family said goodbye to our beloved 16-year-old dog, Kaya. Sarah and I explore the many complex decisions that arise around the death of our cherished animal companions. With her years of experience and compassionate perspective, Sarah and I talk through the importance of acknowledging pet loss and holding the both/and. As she says, “There is beauty available, even in the heartbreak… Paradox is the only basket large enough to hold the truth.”
Director Scott Kirschenbaum joins me to discuss the powerful documentary, The Last Ecstatic Days, and the transformative journey of making this film. Drawn by a long-standing connection to Dr. Aditi Sethi and the story of Ethan Sisser, Scott traveled from California to North Carolina to document Ethan’s final days. The result is a deeply moving, life-affirming film that honors Ethan’s wish to share his experience with the world. Scott finds himself deeply moved by the way in which Ethan was cared for, and he tells me, “We need to see community death care be a part of the fabric of how we engage with our neighbors. It’s imperative now.” What does that mean? How did Ethan’s experience shape that thinking? And where can you see this film? Coming on PBS in August 2025 and available on streaming platforms everywhere.
To sum up this episode, I’d say: listen to learn all about Death Cafés from a seasoned facilitator! How does it work? Who attends? What sorts of things are discussed? And how can I find one near me? Pull up a chair at this conversation about Death Cafés – where talking about the end is just the beginning of a really lively conversation.
Rachel has her MDA – Master of Death Administration! Her personal experience settling estates led her to create a business as an After Loss Professional. So what does that actually mean? In this episode, we talk about “legacy organization” before death, and the management of everything that follows after. What do we need to know now? What blind spots might we be leaving behind? Why do so many of us avoid getting organized in advance? Often, our excuses are rooted in denial, dread – or just plain defiance. Tune in for Rachel’s signature mix of humor and wisdom as we explore what it means to get truly prepared and handle the aftermath. How do you choreograph a well-planned exit?
Words straight from her website: “As a death doula, educator, and public speaker, Erin Merelli guides individuals, families, and communities to meet mortality with intention, courage, and love. Her message is simple but not easy: We are all going to die, and to manage that well, we need to talk about it.” Oh yes indeed! Erin’s clarity and ability to articulate why these conversations matter shines through in this surprisingly upbeat chat. Most intriguingly of all, we explore this question: is it our human responsibility to carry one another through death?
Description: On BLBD episode #145, one year ago, Kate and I talked extensively about VSED, Voluntarily Stopping Eating and Drinking. Her mother chose VSED to hasten her death, and we discussed her family’s experience in detail. Well, Kate is back with an update — and beautifully, remarkably, it’s about her father’s experience with VSED. After witnessing his wife choose VSED to bring her life to a close on her own terms, he ultimately made the same choice for himself. As I say to Kate in our conversation, “Hearing someone’s story about VSED makes such a difference in our understanding.” I think you’ll find that to be true. [Note that BLBD episodes #145, #146 and #201 are each about VSED if you’d like to learn more.] vsedresources.com
Now this is a subject that I really enjoy covering: books. In this episode I chat with a teenager who is a voracious reader — and does she ever know death-themed books! She gives us the run-down on her six favorite books about death, and by the end of it, I challenge you to choose one to read. From settings of fantasy worlds, to cemetery plots; from characters who are the Son of Death, to terminally ill people falling in love… these books are exploring this theme in all kinds of innovative ways. Listen as we discuss: They Both Die at the End by Adam Silvera, Cemetery Boys by Aiden Thomas, You’ve Reached Sam by Dustin Thao, I Fell in Love with Hope by Lancali, Masters of Death by Olivie Blake, The Ghosts We Keep by Mason Deaver.
If you already heard Part I, then you know that this is an episode you do not want to miss! Personal and professional, we dive into what matters most. What are the values and models we hold in caring for the aging? Is there an opportunity to turn towards this often-avoided topic? Rather than jumping over the hard parts and romanticizing about “a good death,” can we instead stick with the mundane, vulnerable realities of aging?