Emma Heming Willis’ book, The Unexpected Journey: Finding Strength, Hope, and Yourself on the Caregiving Path. came out on September 9. It chronicles what she’s learned as a caretaker for Bruce Willis, who was diagnosed with frontotemporal dementia (FTD) in 2022. She’s given some candid interviews to promote the book. While talking with USA Today, Emma shared that after Bruce’s diagnosis, she felt lost and scared. Their family struggled with figuring out how to handle their new normal. She wrote The Unexpected Journey to provide a “compassionate guide” for other caregivers, friends, and family who may be feeling just as lost and helpless. Emma also talked about the importance of support as well as her plans for raising awareness about FTD and caregivers.
“I didn’t know anything about caregiving prior to becoming a caregiver,” she tells USA TODAY. “I didn’t really know much about FTD until I needed to know about FTD. And you’re just thrust into this seat, and you have to figure out so many things so quickly in real time, and then you figure it out, and then you’re stable, and then all of a sudden, the next shoe drops.”
Picture this: You’re Bruce and Emma Heming Willis, sitting in a doctor’s office, and hear the words “FTD.” You’re handed a pamphlet and sent on your way. That’s it.
“That was really surprising to me, that here we are with the diagnosis, and all we’re going to get is a check back in in a couple of months, and nothing else. And I’m thinking to myself, how are we walking out of this office like this with no support?” Heming Willis recalls.
Heming Willis’ mind swirled with to-do lists. “Once we had the diagnosis, I was like, I have to be able to figure this out so I could cut our family, because we were really struggling,” she says. “And through that, I found specialists and experts to be able to help me so that I could help Bruce and as well help our two young children to navigate this in the healthiest way possible.”
She knows how lucky she is compared with other caregivers who don’t have money or support from loved ones.
“I’m so blessed because of the access that we have and the resources that we have that many caregivers do not,” she says. “When you’re thrown into this, it’s like you’re just in the thick of it, and you’re just trying to stay above water. It’s unfair for caregivers to … be everything all at once.”
Heming Willis will be the first to say, too, that she’s not a perfect caregiver. No one is. That’s why she’ll flip through her own book for advice, too. “I’m in the thick of it, navigating it in real time, and I need constant reminders to get myself back on track so that I can sustain this journey.”
If you’re going to take one message away from the book, it’s to remember that “you really can’t ‘caregive’ on your own. You need support. You need a community.”
What she hopes people understand is that dementia looks different in every person. Every caregiver deserves respect and freedom from judgment.
“I don’t want this life,” she reiterates. “I want to go back to our old life. I want to go back to a life where my husband is well, he’s working. He is in the world. I want our children to be able to have their father back. I want us to be in our home. I don’t want this. I don’t want this. I don’t want any of this, but this is just what it is.”
Heming Willis is eager to get the word out that FTD and other forms of dementia are nonpartisan diseases. A trip to Washington remains a goal of hers to continue these conversations, especially as cuts to programs like Medicaid affect caregivers. “I’d love to be able to see caregivers, be able to afford care, get some help,” she says. “The way Medicare, Medicaid, you know, the cuts. It was already hard for caregivers even prior to that. You know, God only knows what’s happening today. So I’m slowly learning and trying to figure out just how to use my voice.”
I love that Emma wrote this book in order to help other people who are in the same situation. When we talked about Emma and Bruce the other day, so many of you expressed gratitude and shared personal stories. It is so important to provide support and resources to both caretakers and their loved ones dealing with health issues. I hope Emma’s book has a far reach and is able to help people feel less scared and alone.
I also appreciate that Emma is speaking about the very devastating real-life consequences that Medicare and Medicaid cuts have had for families. That is such an important issue. These types of policies directly affect our lives. As for how Emma mentioned that she didn’t want this life, I’m so sorry that she and her family are going through this. There are so many people whose lives she’ll be able to touch by using her platform.
Photos credit: Demis Maryannakis,PacificCoastNews.com/Avalon, IMAGO/MediaPunch/Avalon
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