The Unexpected Journey: Finding Hope and Purpose on the Caregiving Path

From Emma Heming Willis, wife of Bruce Willis, a deeply personal and richly compassionate support 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 and protecting her family’s privacy?

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 can not just survive but thrive.”

With The Unexpected Journey, Emma has written the book she wishes she’d had: a guide to navigating the complicated, heartbreaking, and transformative experience that is caregiving for your loved one with dementia. Weaving her personal journey as a care partner with the latest research and insights from the world’s top dementia and caregiving experts, she offers the guidance and wisdom caregivers everywhere so desperately need to hear, including:

• Getting a specific diagnosis is crucial. You should understand how your loved one’s brain changes with dementia.
• 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 this dementia caregiving journey. But you do have a choice in terms of how you approach it and reframe it.
• Caregivers are human. You aren’t always 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 be okay.”