The Unexpected Journey: Finding Strength, Hope, and Yourself on the Caregiving Path
The Unexpected Journey: Finding Strength, Hope, and Yourself on the Caregiving Path
by Emma Heming Willis
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About the Book
“This book is a game changer for caregivers of loved ones with dementia. It comes out of Emma’s pain, which she has turned into a purpose bigger than herself. I couldn’t be prouder of her and the courage it took for her to write this. This book will help millions of families, like hers, like yours, like mine, like everyone’s. It’s a book for our time.” —Maria Shriver
From Emma Heming Willis, wife of Bruce Willis, a deeply personal and richly compassionate supportive guide that helps caregivers care for themselves while they navigate a loved one’s dementia.
AN OPEN FIELD PUBLICATION FROM MARIA SHRIVER
The day Emma Heming Willis’ husband, Bruce Willis, was diagnosed with frontotemporal dementia (FTD), all they were given was a pamphlet and told to check back in a few months. With no hope or direction, Emma walked out of that doctor’s appointment frozen with fear, confusion and a sense that her world had just fallen apart.
In fact, it had. Bruce and Emma had their story written, their future mapped out. Yet all those dreams crumbled with that diagnosis, and Emma felt alone and more isolated than ever. How would she care for her husband while parenting their young daughters?
At that devastating time, Emma just wanted someone who’d been through it to tell her, “This feels terrible right now. Your life is in shambles. But it’s going to be okay. Here are some things to think about and put in place so you cannot just survive but thrive.”
With The Unexpected Journey, Emma has written the book she wishes she’d been handed on the day of Bruce’s diagnosis: a supportive guide to navigating the complicated, heartbreaking, and transformative experience that is caregiving for your loved one. Weaving her personal journey as a care partner with the latest research and insights from the world’s top dementia, caregiving, and integrative experts she offers the guidance and wisdom caregivers everywhere so desperately need to hear, including:
- A diagnosis isn’t just a label, it’s a starting point. It helps you better understand your person’s behavior and respond with more clarity and compassion.
- Taking care of yourself is not optional; it’s mandatory. It will make you a better care partner. It’s not selfish, it’s self-preserving.
- You don’t have a choice about being on the dementia caregiving journey. But you do have a choice in terms of how you approach it and reframe it.
- Caregivers are human so you aren’t always going to be patient and selfless. You have challenges and struggle with conflicting emotions and that’s okay.
Ultimately, The Unexpected Journey shows you how to care for yourself while doing one of the hardest, most heartbreaking jobs in the world. Because if you don’t take care of yourself, you are not going to be able to look after anyone else—especially your loved one with dementia.
For anyone caregiving for a loved one with any form of dementia, and even for those caregiving for other conditions, The Unexpected Journey shows that you are not alone. As Emma writes, “I know that no two caregiving journeys are the same, but we are connected by the same unchosen thread. It’s not an easy path for you, your loved one or your family. But I’m here to let you know that you are not alone, and, in time, you will find your footing, and a way forward.”
About the Author
Emma Heming Willis is a mother, step-mother, wife, advocate, and co-founder of Make Time Wellness, a brand devoted to women’s brain health. After her husband, Bruce Willis, was diagnosed with frontotemporal dementia, she became a passionate voice for care partners and families navigating neurodegenerative disease. Through her storytelling and advocacy, Emma hopes to help others feel less alone on
the caregiving journey. This is her first book.
Editorial Reviews
“Watching the journey our stepmom has bravely embarked on has been life-changing. Not only has she deeply educated and immersed herself in the world of caregiving, she has taken on this unexpected life change with poise and elegance. Emma’s fierce devotion, endless compassion, and relentless quest to learn has been nothing short of extraordinary. Her care for our daddio is tender and unwavering, and the vulnerability she shares with the world is a lifeline for so many others walking a similar path. We are endlessly proud of her and profoundly grateful to be her family.” —Rumer, Scout, and Tallulah Willis
“With grace, honesty, and unflinching courage, Emma has opened her heart to share the truth of caregiving—its heartbreaks and its hidden gifts. The Unexpected Journey is a lifeline for anyone navigating the complex world of dementia and it is her gift to every caregiver who has felt lost, overwhelmed, or alone. Through her story, Emma offers not only guidance, but also the kind of empathy that only comes from living it.” —Demi Moore
“This book is a game changer for caregivers of loved ones with dementia. It comes out of Emma’s pain, which she has turned into a purpose bigger than herself. I couldn’t be prouder of her and the courage it took for her to write this. This book will help millions of families, like hers, like yours, like mine, like everyone’s. It’s a book for our time.” —Maria Shriver
“Becoming a caregiver to someone you love is one of the hardest and most heartbreaking jobs in the world, but Emma has documented her story with grace and empathy. From cover to cover, The Unexpected Journey is filled with straightforward, applicable information and honest reflections that will make every caregiver know that they are not alone.” —Katie Couric, award-winning journalist and founder of Katie Couric Media
“Loving someone with FTD is a club no one wants to be a member of, but Emma has seized her moment to educate and create a community. Her advice and journey are meaningful and important for anyone, especially those thrust into the caregiver experience. A must read for anyone facing this challenge and seeking comfort, information, and humanity.” —Jake Tapper, CNN anchor and New York Times bestselling author of The Devil May Dance
“I admire Emma for telling her story of how strength, courage, and love can help you overcome fear and desperation in the face of neurodegenerative disease. Emma shares practical tips and valuable advice on how (and why) a caregiver can, should, and must take care of themselves. Giving of oneself and providing constant care for a loved one with dementia is beyond challenging, but The Unexpected Journey offers a road map forward on how to do so with balance and confidence.” —Richard S. Isaacson, MD, preventive neurologist at the Institute for Neurodegenerative Diseases and founder of the first Alzheimer’s Prevention Clinic in the United States
“Emma loves Bruce unconditionally and holds onto memories, trying to preserve his legacy. Their two daughters were absolutely right when they told her that her book would help people.” —Booklist
“Being a caregiver for a loved one with dementia—any kind of dementia—is a pilgrimage that none of us are prepared for. It can feel lonely and helpless. Emma learned the most important lesson: It doesn’t have to be lonely, and you don’t have to feel helpless. Reaching out to others, sharing the lessons that unfold every day, and listening to what others who have also been on that pilgrim’s path have learned is some of the best work we can do on this earth.” —Patti Davis, author of thirteen books including Floating in the Deep End, daughter of President Ronald Reagan, and founder of Beyond Alzheimer’s