Emma Heming Willis' caregiving guide lays the groundwork for anyone suddenly strapped with the task.
Emma Heming Willis is navigating life as best she can in the wake of husband Bruce's FTD.

Emma Heming Willis never expected her life to look like this.

Thirteen years after she married actor Bruce Willis and about a decade after she gave birth to their two daughters, Mabel and Evelyn, Heming Willis publicly revealed a devastating secret. Bruce was taking a step back from acting because of aphasia, or damage to the parts of the brain involving language.

A year later, she had a crushing update: Bruce was suffering from frontotemporal dementia – primary progressive aphasia, to be specific – the name for a group of brain disorders that occur due to frontal and/or temporal lobe decline. About 50,000 to 60,000 people have FTD in the United States and it causes personality changes, can lead to speech problems and is incurable. People live for about 7 to 13 years after symptoms start.

Now, the 47-year-old former model is offering us a peek into her journey as a caregiver, with a prescriptive book of tips she wishes she would've known: "The Unexpected Journey," out now. One message is loud and clear: Caregivers – 1 in 4 adults in the United States – need more support.

"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."

Emma Heming Willis 'just trying to stay above water' amid Bruce's health struggles

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 save 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."

Emma Heming Willis 'continually pissed off' at frontotemporal dementia

Before the diagnosis, a deep-seated frustration rumbled inside Heming Willis. So much so that she contemplated divorce. "I just didn't understand what was happening to my husband," she says. She's no longer angry with him, but she's still angry. "I'm just continually pissed off at his disease." It's a sentiment other caregivers can relate to, having to hold many emotions while also putting them aside to focus on a loved one.

"We're not just experiencing sadness and grief," she says. "We are experiencing so much, and caregivers aren't able to talk about their anger and their resentment for being judged." Her therapist – who Heming Willis accidentally referred to her as her own caregiver – explained how normal these feelings were.

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."

Bruce Willis' wife talks about his illness: 'I don't want any of this'

Heming Willis, both in her book and in an interview with Diane Sawyer, disclosed Bruce was living in their second home. As expected, backlash to her decision arrived swiftly.

"People were going to have a big opinion about it," she says. "I think what's been hard to see is caregivers, who have the experience, also holding judgment."

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 now. So I'm slowly learning and trying to figure out just how to use my voice."

Emma Heming Willis looks ahead

Sometimes, Bruce, as he once was, sneaks up on them. "It's startling. Because sometimes I think, are you pretending? Are you joking? Have you been joking this whole time?" Then he returns to his FTD-afflicted self. Fleeting waves of normalcy in a sea of confusion.

Emma Heming Willis never expected her life to look like this. But now that it does, she's on a mission.

This article originally appeared on USA TODAY: Emma Heming Willis responds to public 'judgment' amid Bruce's dementia

Reporting by David Oliver, USA TODAY / USA TODAY

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