The Unexpected Journey by Emma Heming Willis

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.

Lauren Massimo, Associate Professor at the University of Pennsylvania and Co-Director of the Penn Frontotemporal Degeneration Center (Penn FTD Center), contributed to The Unexpected Journey, sharing her research on the importance of self-care for FTD caregivers. Dr. Massimo shared details of a study conducted at the Penn FTD Center which showed that restorative self-care activities helped not only caregivers but also had positive effects on the person with FTD. “The main takeaway is that caring for yourself is important and it has downstream effects on your care recipient,” Dr. Massimo says. Emma used the context of Dr. Massimo’s study in her debut novel to shine a light on caregiving and the importance of self-care.

Please read below for an exclusive highlight Emma has provided for Penn FTD Center subscribers, giving us a peek into her caregiver journey and how she hopes this book can open the conversation on resources for support and advocacy.

1. What inspired you to write about your personal experiences?

   • When Bruce was diagnosed with FTD, we walked out of that appointment with nothing but a pamphlet about a disease that I couldn’t pronounce and were told to “check back in a few months.” To say I felt scared and totally alone is an understatement. What would this mean for our family? I wondered. What are my next steps? I had no clue. Over time, with a lot of trial and error and many difficult days, I slowly found a team, pieced together support, and started learning. The whole time I kept thinking, why didn’t anyone give us this guidance from the beginning? It’s a lot to ask a caregiver to care for another person and educate themselves on the fly about everything! Once I was more settled with Bruce’s disease and felt a stronger foundation beneath my feet, I knew I needed to share what I’d learned with the next caregiver. I could not sit on all this valuable information because I couldn’t bear the thought of another caregiver leaving their loved one’s doctor’s appointment feeling the way that I had.

2. What was the hardest part in finding care and/or information when beginning your caregiver journey?

   • Honestly, I didn’t even know where to start. There was no road map, no checklist, no one guiding us about what to do next. I assumed the doctor’s office would offer some direction, but they didn’t. I didn’t even know what questions to ask. Maybe if I did, they would have provided that support? So, like many of us, I turned to the internet, and that rabbit hole was dark and bleak – especially because I didn’t feel like I could share my fears and Bruce’s condition with many people. It took time to sift through the noise, but each bit of information led me to the next. Still, I kept thinking this shouldn’t be so hard.

3. What is one piece of advice you’d give to new caregivers?

   • It’s hard to pick just one piece of advice, so here are a few:

     1. Taking care of yourself is not optional or selfish; it’s mandatory and self-preserving. Your needs are usually the first things you remove from your daily To Do list, and it’s easy to put yourself last- especially because caregiving isn’t linear and changes as your person’s condition progresses. Caring for someone else doesn’t mean abandoning your own care.

     2. Showing up for your person starts with showing up for yourself. Your physical, mental, and emotional well-being are essential so you can best care for your person.

     3. When someone offers help, accept it. I wish someone had told me, “You’re not meant to do this alone.”

4. How has writing this story helped you navigate your own caregiving journey?

   • Writing this book helped me process what I was and still am going through in real time. It’s been healing, not only to put the experience into words but to be reminded of the incredible insights from the specialists and experts who have supported our family. Their wisdom lives in these pages and writing it reminded me of lessons I had forgotten, lessons I needed to hear again. Caregivers are so often unseen and unsupported. Putting this story into words helped me reconnect with myself and I hope it helps other care partners feel seen and a little less alone.

5. What do you hope readers will understand after reading this book?

   • I hope they hear the message that caring for themselves is not selfish, it’s self-preserving. I hope they understand that asking for help doesn’t mean they’ve failed; it means they’re trying to take the best care of their person. And I hope they will understand that there is support out there, starting with this book.

You can order The Unexpected Journey now by clicking the link here. Find more information on Emma Heming Willis and her advocacy by visiting her website here or her social media accounts listed below:

Instagram @emmahemingwillis

YouTube @EmmaHeming-Willis

Facebook @EmmaHemingWillis