Totally Booked with Zibby:

Emma Heming Willis – THE UNEXPECTED JOURNEY: Finding Strength, Hope, and Yourself on the Caregiving Path

Air Date: September 15, 2025
Guest: Emma Heming Willis
Host: Zibby Owens

Episode Overview

In this heartfelt and insightful episode, Zibby Owens sits down in person with Emma Heming Willis to discuss her debut book, "The Unexpected Journey: Finding Strength, Hope, and Yourself on the Caregiving Path." Emma recounts her experience as the wife and caregiver to actor Bruce Willis following his diagnosis of frontotemporal dementia (FTD). She shares emotional stories, practical advice for caregivers, and thoughtful perspectives on navigating ambiguous loss, advocacy, family life, and self-care. Emma’s honesty and vulnerability make this episode an invaluable listen for anyone facing caregiving or personal adversity.

Key Discussion Points & Insights

1. The Unplanned Caregiving Role (04:21–06:21)

• Zibby highlights Emma’s authenticity, compassion, and the unexpectedness of her journey from glamorous public life to caregiver and advocate.
• Emma candidly expresses the intensity of becoming "an unexpected caregiver" and how no one is prepared for such a life twist.
• Memorable story: After speaking at an FTD conference in Amsterdam, Emma is emotionally overwhelmed and describes the exhaustion and vulnerability inherent in caregiving.

“I just remember being in that room, I was sitting in the back and I was just watching these new caregivers... I walked out of there just sobbing.” — Emma Heming Willis (07:26)

2. Caregiver Self-Care & Boundaries (08:42–10:08)

• Emma emphasizes the book’s main message: caregivers must look after themselves to effectively care for others.
• She shares her wake-up call upon learning that caregivers sometimes die before their patients—a sobering statistic from Bruce’s neurologist.
• Discusses the struggle women face in prioritizing self-care as they often put their families’ needs first.

“It’s important to be able to be honest with them [her daughters]... It’s important to be honest with them.” — Emma Heming Willis (11:37)

3. Parenting & Honesty With Children (10:08–12:18)

• Emma includes her children in the conversation about Bruce’s illness, trying to model vulnerability and honesty in parenting under duress.
• She shares that her daughters, even at a young age, have become advocates for her self-care.

“Mom, you have to get out and touch the grass.” — Emma relaying a moment with her daughter Evelyn (10:49)

4. Navigating Community & Public Scrutiny (13:48–15:25)

• Addressing the challenges of living such a private struggle in the public eye, Emma reflects on the judgment caregivers face—both from others and themselves.
• She recognizes the pressure that comes from being a public family and the reality that, regardless of personal circumstances, caregivers are often second-guessed.

“Caregivers, at the end of the day, they do get judged, and it’s so sad because we’re already judging ourselves.” — Emma Heming Willis (15:17)

5. Ambiguous Loss & Ongoing Grief (15:35–17:09)

• The conversation touches on Dr. Pauline Boss’s concept of “ambiguous loss”—grieving a loved one who is physically present but psychologically altered.
• Emma describes the unending nature of this grief and the importance of processing it openly with others who understand.

“It’s not that you grieve and you continue to move on. It’s a process.” — Emma Heming Willis (16:17)

6. Coping With Change & Finding Joy (17:12–19:37)

• Emma recalls what she misses most about “the old version” of Bruce—companionship, humor, and shared routines—but asserts there can still be joy after diagnosis, just in different forms.
• Zibby and Emma discuss the strength and adaptability both adults and children discover when circumstances change.

“We find a way just to continue to put one foot in front of the other. And I think that’s incredible.” — Emma Heming Willis (20:05)

7. Motivation for Writing the Book (27:01–29:42)

• Emma explains the impetus for the book: the lack of a roadmap or immediate support after her family’s diagnosis.
• She points out that her access to experts was a privilege and wants to make hard-won knowledge available to everyone in need.
• The book is designed to be actionable and accessible—a true handbook for caregivers.

"Anytime I’m about to go do something, I’m like, what have I gotten myself into? Because public speaking is just so hard for me. It’s not my favorite thing... Bruce would always tell me: Emma, you gotta get out of your own way." — Emma Heming Willis (28:45)

8. Blended Family, Advocacy & Decision-Making (31:08–32:27)

• Emma talks about the challenge of sharing Bruce’s story publicly while protecting his dignity and honoring their family’s privacy.
• She stresses that the book, while rooted in her personal journey, aims to support millions of caregivers beyond her own family’s story.

9. Connection as Self-Care (33:05–35:01)

• Today's self-care for Emma is rooted in advocacy and connecting with fellow caregivers—helping others is what gives her hope and purpose.
• She admits she spent too long in isolation and values honesty and community now more than ever.

“We are only as sick as our secrets.” — Emma Heming Willis (34:08)

10. Memories, Regret, and Embracing Life (35:01–38:36)

• Reflects on a poignant trip to Japan with her daughters, remembering dreams she and Bruce had together, and the process of redefining what “normal” now means.
• She wishes she could advise her younger self to “just have some grace... You’re going to be okay,” and focuses now on embracing life fully.

“I think he [Bruce] would be so proud. He was always my biggest cheerleader.” — Emma Heming Willis (38:07)

Notable Quotes & Memorable Moments

• On authenticity:
  “When you are navigating this journey with someone who has dementia and it’s someone that you love, you just want to just wrap your arms around them and just care for them as best as.” (05:20, Emma)

• On advocacy:
  “I just have to. Bruce would always tell me, Emma, you gotta get out of your own way.” (28:48, Emma)

• On judgment:
  “Caregivers get judged... and it’s so sad because we’re already judging ourselves.” (15:17, Emma)

• On ambiguous loss:
  “It’s not that you grieve and you continue to move on. It’s a process.” (16:17, Emma)

• On secrets and isolation:
  “We are only as sick as our secrets.” (34:08, Emma)

Timestamps for Important Segments

• Emma’s unexpected role as a caregiver: 04:21–06:21
• Caregiver self-care and boundaries: 08:42–10:08
• Talking to children about illness: 10:08–12:18
• Judgment of caregivers/public scrutiny: 13:48–15:25
• Ambiguous loss and grief: 15:35–17:09
• Adapting and coping with change: 17:12–19:37
• Why write a book?: 27:01–29:42
• Deciding what to share publicly: 31:08–32:27
• Self-care now rooted in connection and advocacy: 33:05–35:01
• A Japan trip and embracing the present: 35:01–38:36

Tone and Atmosphere

The conversation is frank, empathetic, and full of warmth. Emma’s openness about vulnerability, grief, and resilience provides comfort and clarity for caregivers. Zibby’s questions are supportive and sensitively probe practical and emotional realities. The overall tone remains hopeful and empowering, despite the heartbreaking context.

Summary Takeaway

Emma Heming Willis’s journey as a caregiver for Bruce Willis provides a roadmap for others, offering both practical tools and emotional solidarity. Her book—and this conversation—stands as a reminder that caregiving is not a burden borne alone, and through honesty, self-care, and community, even the hardest paths can be walked with hope and dignity.