The Unexpected Journey: Finding Strength, Hope, and Yourself on the Caregiving Path

by Emma Heming Willis

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.”

Genres: Nonfiction, Memoir, Audiobook, Biography, Medical, Health, Self Help

320 pages, Hardcover

First published September 1, 2025

Reviews

[Karen · Rating 4 out of 5]

I realize I will be dating myself, when I share the silly school girl crush, I had for Bruce Willis when he first walked on the scene in the television show, Moonlighting (1985 – 1989).

Willis played David Addison, the debonair, but very objectionable male chauvinist. But oh so sexy cute, wisecracking detective running the City of Angels Detective Agency. The show was successful because of the chemistry exuded on-screen by the two leading characters. His co-star being, the eloquent former fashion model Cybill Shepherd who played the character of Maddie Hayes. Viewers got to sit in each week and watch David Addison’s constant run-ins with Maddie, a smart former high-fashion model who would become his partner in all things involving sleuthing cases, along with their blatant romantic tension. Needless to say, I would be front-row and center each and every week while it aired.

Bruce Willis went on to play, John McClane, a New York City police detective, a truly vulnerable action hero, in the successful “Die Hard” series.

So, when years later, Willis’s ex-wife, Demi Moore and current wife, the author, announced his devastating dis-ease, frontotemporal dementia (FTD), it was hard to fathom this would be his unfortunate destiny.

According to the Mayo Clinic, “Frontotemporal dementia (FTD) is an umbrella term for a group of brain diseases that mainly affect the frontal and temporal lobes of the brain. These areas of the brain are associated with personality, behavior and language.”

In many ways, as much as this is the author’s story, it is definitely her husband’s, as well. And, it makes sense that the author would also sub-title this as a journey of “finding strength and hope, and yourself on the caregiving path.” Especially as a caregiver, since this has been the majority of her marriage.

The author not only shares her “love story,” but many helpful hints, suggestions and exercises on how to navigate the ‘loss’ of a loved one while they are still with you in this deeply affecting way.

There are 10 helpful chapters with such headings as: ‘making sense of the changing brain,’ ‘make time for yourself,’ ‘parenting while caregiving;’ and, ‘let friends and family take care of you.’ She also utilizes information from experts, and is clear in her ‘note to readers’ that her story is ‘not intended as medical advice.’

Readers will appreciate her journaling prompts of ‘something to think about’ at the end of each chapter.

There is definitely something heart-felt to appreciate about the author sharing this story about the once television/movie star who is now devoid of himself. Her story and anecdotes and guidance are beautifully, compassionately, meaningfully and thought-fully written. It is truly a compelling, bittersweet, and heartwarming journey.

This reading experience is recommended for anyone in a caregiving role, or just interested in learning more about the author’s experience negotiating dis-ease with her partner Bruce Willis, a once famous person, who some of us loved watching on our screens.

[Angela Pineda · Rating 4 out of 5]

I think this book can be a gift for someone thrust into caregiving, especially if their person is suffering from FTD (frontotemporal dementia). It’s a great road map for caregivers, and an all around good read for all us humans who struggle to do it all.

This book is less memoir, more caregiving guide, but there is some tidbits on Emma and Bruce’s family and life together.

One of the best parts (for me personally) was the chapters on brain health and the pillars of what we can do to help keep our brains strong. Spoiler alert - we all know it already and struggle to do it:

Good nutrition
Movement
Sleep!!!!!
Staying socially connected
Staying on top of your medical health
Stress reduction

Emma is very real and realistic in this book. She realizes not everyone has her resources, so there’s a lot of info that’s attainable to those with less time, money, etc. And she never pretends eating a vegetable or taking a walk is going to magically cure you. But she emphasizes the importance of the small things that can add up, and how taking care of yourself, helps you take care of others.

[Stacy Nordquist · Rating 3 out of 5]

Having been a caregiver for close to 40 years for my son, my mother and now my husband who has Primary Progressive Aphasia, I think this book is long overdue. Emma makes a very strong argument for the importance of caregivers looking after their own health. And the data on this question is sobering as the caregiver statistically dies before the patient 67% of the time. Female caregivers of dementia patients have 3 times greater chance of getting dementia than their peers who have not had dementia. For male dementia caregivers it is even worse. They have 10 times the risk as their non-caregiving peers.

As a caregiver for a patient with FTD which often strikes younger people, she has had to simultaneously care for her husband and her daughters who were young children. She describes the dilemma of the
spouse who not only sees her spouse disappear but is put in the position of taking over tasks and assuming a new more dominant role in the couple.

She addresses very important physical and psychological aspects of the journey; the importance of the caregiver addressing his/her own brain health, creating or finding a community of others on the same journey; creating a support network and meeting the children’s needs. She also includes the advice and input of the many experts she has consulted on her journey.

Emma recalls the shattering moment when Bruce’s doctor gave them his diagnosis and noted they would meet again in three months. Other than that, there was no information. Many other families have similar stories. When my husband suddenly became incontinent, I was told it was urge incontinence but provided with no
other information or resources. And I agree that the medical professionals really fall short in that area as even a high school student could create a fairly comprehensive website for a medical practice in a fairly short period of time.

While her book offers a compelling argument for the caregiver to care for him or herself, she provides very few concrete details to facilitate the task of caregiving. There is no explanation, for example, of the pros and cons of daycare programs versus home care. What do Occupational Therapists do? Speech Therapists? What is the difference between palliative care and hospice?
What does Medicare cover? Medicaid? What about the VA? If a family chooses to modify their bathroom for a patient, what features should they include? How can you evaluate a memory care? What options are there for families in more rural areas where not as many services are available? I would suggest that she provide an addendum or a couple of extra chapters to address these issues in subsequent editions of her book.

[Eileen · Rating 5 out of 5]

Very well done. This book helped me so much!

[Zibby Owens · Rating 5 out of 5]

This story begins when the author learns that her husband, Bruce Willis, was diagnosed with frontotemporal dementia. From that fearful, disorienting moment, she builds a guide on what you need as a caregiver. The book combines her personal story—navigating loss, confusion, fear, love, and managing day-to-day life while parenting—with research and advice from medical and wellness experts. Key themes include understanding what the diagnosis truly means, the importance of self-care (both emotional and physical), the tension of needing to support someone while preserving your own well-being, and finding a community so you don’t feel isolated.

Emma Heming Willis writes with vulnerability and clarity on how harsh caregiving can be (the grief, the mistakes, the fatigue). Still, she also offers tools and mindset shifts that feel doable. Her honesty about feeling lost, asking for help, and sometimes failing gives the book its power. This guide can help when caregiving feels like endless exhaustion, but there’s still reason to hope.

To listen to my interview with the author, go to my podcast at:
https://shows.acast.com/moms-dont-hav...

[Susan Foresman · Rating 5 out of 5]

Bless You

Wow! Amazing information. I cried, learned to breathe, and to accept the role I was given. Thanks Emma, God bless!

[Rubab · Rating 3 out of 5]

As someone working in healthcare, I appreciate the thought behind this book. As a society, we should work to make the lives of caregivers easier by offering as much support as we can. This book does exactly that: it recognizes and supports caregivers throughout their journey, providing practical tips and a level of understanding that is often missing. In short, this book is a self-help guide for FTD caregivers, offering tips and information by consulting experts and sharing their perspectives.

I appreciate the writer’s courage in sharing her experience while living through it day by day. That takes tremendous strength.

The writer does not use narrative form of writing. The chapters of the book are structured so that each one can be read independently, which results in some overlap of information.

If you are considering reading this book to gain more insight into Bruce Willis’s life and his subsequent diagnosis, you will likely be disappointed. It is a caregiver’s guide.

[Mike Holbert · Rating 2 out of 5]

I was looking forward to reading this book, but came away disappointed. With the exception of the initial chapter on how they met, the book reads like a self-help book. But, it felt like each of the subsequent chapters discussed others’ work while adding little to the existing body of thought. In addition, it seemed a little disingenuous to list Emma Heming Willis as the only author on the cover. She worked with an accomplished ghostwriter, Michele Bender.

[Erin Matson · Rating 5 out of 5]

FTD runs in my family. My aunt and uncle both died of it. If you do not have personal experience with this misunderstood disease, then I can assure you—

Whatever you suppose Bruce Willis and his family are confronting, it is assuredly leaps and leagues beyond your worst imagination.

This disease is not about “memory.” It is worse. It steals people and in part replaces them with shocking behaviors they would never, ever consciously do.

Enter Emma Heming Willis. Since the time of the announcement of Bruce’s illness, I fell in love with this woman and the way she shows up for Bruce, her daughters, and her whole family (including the family he built before meeting her). Hers is a beautiful soul. Her book is raw and vulnerable, but also includes practical and easy-to-follow advice and real talk for caregivers confronting the unthinkable.

Her basic thesis is: You can’t do it all. Forgive yourself. Let the emotions out. Don’t expect people to understand. And most of all, take care of yourself first. Enlist help.

On a practical note, it was a little hard to read her almost apologizing for the reality of her life at multiple points in this book. Yes, she’s a gorgeous model. Yes, she married one of Hollywood’s biggest stars. Yes, they are rich and have had all sorts of glitz that is unrelatable to almost everyone. I understood why she couched her luxe, pre-FTD life in apologetic terms. I don’t think it’s her fault. We as a culture have come to demand that of high-falutin’ speakers, or we shout them down. But if anything, the truth of the life she had before this brutal caregiving role and completely unfair heartbreak was forced on her makes her decision to step up and advocate all the more admirable.

She could have hid this. She had the resources to do so. She did not. Her bravery will change lives. Bruce would be very proud. As someone whose family tree must be riddled with FTD genes, I sure as hell am.

Much of the time reading of the book I had tears on the verge of springing from my eyes. They are finally doing so now, as I write this review.

We see you, girl. We love you. You are doing great work. Thank you.

[Jade aka MrsTosh · Rating 4 out of 5]

I was intrigued to read this book when I saw it advertised. As a caregiver myself, I realise how important it is to look after yourself in order to be able to take care of your loved one. It's definitely a learning process, especially when you are thrown into the role suddenly. I am now 3 years into my journey, and whilst my Mum doesn't have dementia, she has been left with various mobility, health and neurological issues after suffering a stroke, 80% of which leads to vascular dementia. And I can see a lot of similarities in my Mum's symptoms as are written in the book.

Emma has been very brave putting her personal story out there and explaining how daunting this journey can be. Obviously, she is in a privileged position and has the means and friends to get the best expert help and advice. Which she acknowledges throughout the book. The book is full of practical advice and self-care, which will be useful for a lot of people. It is quite repetitive, but she does also mention that it has been written as such, so you can read it in whichever order you like. Or just pick up certain sections.

This is a self-help book, really not a memoir or Biography Memoir as tagged. This book gives a step-by-step guide on where to obtain help and support. It would be a useful tool for people caring for people with dementia or neurological issues. As she mentions in the book, once you get a diagnosis, you are usually left to navigate the journey yourself without the proper support.

Whilst I enjoyed the book and sympathise with Emma and their family, I was personally hoping for more information on Bruce and how he coped with his diagnosis, which wasn't in this book. As an '80s child, I grew up watching him as a great action hero. It would have been nice to hear more about him, not just how they met. However, I understand she would like to keep his privacy and dignity. I would just have enjoyed the book alot more had this been included.

She does give some really good advice: speak to your friends and family, let other people help. Join support groups so you can speak to people going through the same things you are. This also helps the loved one, not just you. For anyone else on this journey, I hope you found the book helpful.

Thank you to NetGalley for an ARC of this book in exchange for an honest review.

[Martin Southard · Rating 5 out of 5]

This book is an honest and heartfelt account of navigating life when dementia enters a family. Emma Heming Willis shares her story with openness that makes you feel less alone, while also offering clear advice that can be put into practice. I valued the way she balances her role as wife, mother and advocate, never pretending it’s easy yet showing that strength can be found in the hardest of times. The inclusion of professional perspectives adds depth, but it’s Emma’s voice that resonates most. It’s a compassionate guide that will comfort and inform many.

Strength and Support in the Hardest Times

[Don Smith · Rating 2 out of 5]

Not what I was expecting. Hoping to hear everything leading up to Bruce's diagnosis, caring for Bruce and how he was dealing with life and his disease. This is a book about being an extremely rich, younger wife and mother who has the financial means to have her husband taken care of in a different home with 24 hour care. How much self care do you need for yourself, breaks, vacations, time on your own if your very famous husband lives in another home and is being cared for professionally 24/7? It comes across as disingenuous for others who have no choice but to care for their loved one 24/7 because they lack the financial means that Emma does. I appreciate Emma bringing awareness to FTD w/ PPA and brain degeneration in general.

[Shahin Keusch · Rating 3 out of 5]

thank you Emma for taking time to write this book. i also found myself a caregiver for my mother who is suffering with the same as Bruce and it is quite hard. my dad and me are a team. but sadly we dont have the money or the luck with friends and other family. so we are on our own. but the last chapter. the remarkable reframe chapter i will surely read again and again.

i would have loved to hear more about bruces progression and how he acting and and so forth. but i realize that this is more a book to help caregivers find sources of support and not a memoir of sorts. maybe in the future.

thanks again and my thoughts are out to all the caregivers out there

[Katarina · Rating 5 out of 5]

*Audiobook via Libby*

Definitely different that what I thought this book would be. I thought it may be a memoir of her journey so far being Bruce’s care partner. While the book did give their history as a couple and an insight into some things she deals with, Emma has really flipped the narrative and is using her platform in such a kind way. She shares lessons learned and lays this book out as a guide for individuals who are for a loved one or person with one of the many forms of Dementia. She worked with professionals in the field, counselors, and did research, while using her first hand experience to provide info in a part of the health world that has little and at the same time SO MUCH information. From how to process and accept diagnoses, to taking care of yourself, do reducing stigma on needing help and how to talk to kiddos about this (and more) - I am in awe of this woman’s heart to help others in the midst of this journey her family is on.

[Susan · Rating 5 out of 5]

So well written, will be rereading parts again, that’s how much useful information Emma Heming Willis gives in this book. Learned so much about FTD (frontotemporal dimentia). But everything she writes is so useful to any person caring for someone with any kind of dementia, of which there are many. All about caring for self while caring for someone, in her case her husband, Bruce Willis. I mentioned to a friend that I was reading this, and they mentioned the special on ABC a few weeks ago. Midway though the book, I searched for it in OnDemand and found it. Sat on the couch with the book in my hand and cried as I watched her telling her story. Then I continued reading. Finished in two days. So much information for someone in the care giving role with nowhere to turn for help. This book will surely give you that and more. Wish I had this book back in 2007 at the beginning and throughout the next seven years of my mother’s Alzheimer’s journey. There is do much more I could say, but will leave it at, this one is worth a read! Beautifully written!

[Barri Grant · Rating 5 out of 5]

This is the book I wish I had as we lived alongside my father's dementia. I am so grateful for the intimacy that Emma shares, the need for resources and community. And the bold faced fact that caretakers and care partners need and deserve help to.

While I read it after our loss, I also sit with grievers and those anticipating this loss and know this book is like finding home. Permission we feel we need to feel the sadness and also the anger, guilt and rage.

There are interviews with leading experts, Emma's personal journey and practical tools and ideas to learn to live alongside this heartache. And the beauty and joy that remains.

I bought an extra at my bookstore and left it for someone in need. Maybe you will too.

[Erika]

I'm not going to rate this as it wasn't the book I thought it was.
I love Bruce Willis. Ask anyone that knows me and they'll tell you I have a giant Die Hard poster hanging in my house.
This book was directed for caregivers of those with dementia, with particular emphasis on FTD, Bruce's condition. It isn't really about Bruce Willis' personal life through the years (though I ate up every tidbit mentioned about Bruce and loved those parts).
In the best way...I hope I never have to deal with this.

[Linda · Rating 5 out of 5]

This book is a welcome addition to the few available specifically addressing caring for someone with Frontotemporal Degeneration (FTD). (There are tons of Alzheimer’s books.) Each chapter can be read as a stand-alone, so the book can be read out of order, or only for topics of interest. Willis connects lived experiences and expert, research-based advice. The book is filled with actionable advice and sources for additional information. Given that the author’s loved one with FTD is a Hollywood celebrity, I was concerned that her experiences might not be easily relatable, but I found them highly relatable.
Being an FTD care partner is an exclusive club nobody wants to join, but the guidance of others on the journey can be comforting and confidence building. Doctors should provide this book with every FTD diagnosis. Thank you Emma Willis for writing this book and drawing attention to this little-known, but probably not uncommon, disease.

[Marie Kruse · Rating 4 out of 5]

All be honest, I did think this book was going to be about how his diagnosis affected him personally. It wasn't that at all. It was a book for caregivers about challenges facing the caregiver and their family. I certainly understand how this book was therapeutic for Emma and her family. Anyone who has struggled with dementia in their own family, will find this book helpful in so many ways. Kudos to Emma for sharing her life with Bruce as it now.

[Michele · Rating 5 out of 5]

This book is a guide to caregivers. It has many references you can use and self help examples. There are sections on life with Bruce, but that is not the purpose of this. I have been a caregiver to many family members for different reasons, but feel this would be helpful to anyone going through this. Very good book with important information. Nicely done Emma!!

[Ashley · Rating 4 out of 5]

This was much more helpful than I expected. Not only do you get a loving story of Mrs. Willis, but also you get so many resources for caregivers. If you are a caretaker in any way, this will give you some new ideas on how to refill your tank.

[Lynda · Rating 5 out of 5]

Exceptional read

This book is not only for current caregivers, but those who are yet to be. And though I've read where some say it lacks information I thought it was a wealth of information. Recommended read for all.

[Melissa B · Rating 5 out of 5]

If I could give this 10 stars I most certainly would.
It is written with compassion, knowledge and love.
For anyone who is a caregiver for a person with dementia - please read this! It is an important book.

[Natalie Park · Rating 4 out of 5]

Very informative and touching.

[Carol Greenland · Rating 5 out of 5]

This was a very quick read for me, and I appreciated Emma bravely sharing her story. She was open and honest about the difficult and heartbreaking journey it is for anyone who loves and cares for someone who lives with any form of dementia. I could so relate to her discussion of the various emotions you continually find yourself dealing with on a daily basis. Her willingness to provide suggestions and resources she learned from her own experiences that helped her cope just a bit better were invaluable. We are all just trying to do our best on a journey none of us asked for, but now find ourselves navigating, and I'm grateful she was willing to speak her truth.

[Mo Campbell]

Listened to this book. Very touching. Very helpful to care partners and their patients/loved ones.

[Literary Redhead · Rating 5 out of 5]

Bruce Willis' wife, Emma, has written a powerful and poignant book on caring for someone with dementia. Will help many others similarly struggling. Highly recommended!

[Nancy · Rating 3 out of 5]

Couldn't stand to finish. Too depressing.

[Kait Smith · Rating 4 out of 5]

I went into this thinking it would be about Bruce - not how to care for someone. I think it would be a great support and wealth of knowledge for caregivers.

[Jackie Machardy · Rating 5 out of 5]

This thoughtful, empathic book should be required reading for all caregivers!