“I have heard so many other couples that have gone through this where they just can’t figure it out (and) think it’s a marital problem, but in fact, it’s a symptom of a disease,” she says.

With an official diagnosis came a measure of relief for Emma, and any frustration with Bruce disappeared on the spot. “There was relief in understanding, ‘Oh, okay, this wasn’t my husband, it was that this disease was taking parts of his brain’,” she says. “Once you hear that, I just softened.”

Emma has poured her firsthand experience as a caregiver and all she’s gleaned from top experts into a new book, The Unexpected Journey, a roadmap for families navigating neurodegenerative disease. She says, “I wrote the book that I wish someone had handed me on the day we received the diagnosis.”

Quick to acknowledge how fortunate they are to have means to facilitate the new living arrangement, Emma is grateful for what it’s meant for the family. “Everything just feels a lot calmer, more at ease now,” she says.

In an Instagram post shared on Friday, Aug. 29, Emma addressed commenters who raised eyebrows about the family’s personal decision, which she’d initially mentioned to Diane Sawyer in an ABC News special, Emma and Bruce Willis: The Unexpected Journey.

“What I knew is that by sharing some of our intimate information that we would see these two camps. It would be people with an opinion versus people with an actual experience,” said Emma, who anticipated that “people with an opinion [are quick to judge] the caregiver” in situations like hers and Bruce’s.

She added in the post: “That is what caregivers are up against … Judgement from others and criticism from others.”

“Dementia plays out differently in everyone’s home and you have to do what’s right for your family dynamic and what’s right for your person,” Emma tells PEOPLE. “It’s heartbreaking to me. But this is how we were able to support our whole family, [and] it has opened up Bruce’s world.”

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It’s also meant she and the kids, who keep clothes, toys and arts and crafts supplies at Bruce’s home, can steal special moments together. “I get to go back to being Bruce’s wife and the kids can be kids and there’s beauty in that and I’m so grateful for that,” she says. “I just get to be with him in these moments and that is because of this set up we have. It’s been helpful for us.”

Emma, who is one of nearly 12 million people in the U.S. caring for a loved one with dementia, shared a quote on Instagram from her new book for caregivers, The Unexpected Journey: Finding Strength, Hope and Yourself on the Caregiving Path: “The truth is that the opinions are so loud and they’re so noisy. But if they don’t have the experience of this, they don’t get a say, and they definitely don’t get a vote.”

Then in a caption, she added the upside of opening up, come what may: “Sharing openly may invite opinions, but more importantly, it creates connection and validation for those actually navigating the realities of caregiving every day … That’s who I share for and so I can build a deeper connection with a community that understands this journey.”

Bruce Willis’ Speech Is Limited by FTD Dementia, but Wife Emma Says ‘Sometimes, Love Does Not Need Words’ (Exclusive)

The mother of two opens up to PEOPLE about finding ‘beauty’ in how she and Bruce stay connected and communicate despite FTD compromising his ability to speak

Way before Bruce Willis was diagnosed with frontotemporal dementia (FTD) in November 2022, there were early signs something was amiss. Always a devoted and charismatic husband and fun-loving dad, Bruce, 70, was becoming uncharacteristically removed and experiencing language issues, including the return of a childhood stutter.

What he and his wife Emma Heming Willis, 49, didn’t know at the time was that he was exhibiting tell-tale symptoms of primary progressive aphasia (PPA), a variant of FTD. “FTD can affect people in different ways and there are three different subtypes,” Emma tells PEOPLE in this week’s cover story, of the under-diagnosed disease.

“There’s one that affects behavior, one that affects speech, and then another one that can affect movement. For Bruce, it was speech.”

Although PPA has limited his speech capacity, Bruce hasn’t lost the ability to communicate in other ways, and Emma has come to appreciate their reimagined dynamic. “I feel like our love story has only grown and developed more,” says Emma, who is one of the nearly 12 million people in the U.S. caring for a loved one with dementia.

“It sounds woo-woo but it’s just on a more cellular level. I am so grateful that he is very much here, very much a part of our day-to-day.”

While it’s been a “heartbreaking” journey, Emma’s grateful for the simple moments they still share. “It has meant so much to be able to meet him where he’s at, to enjoy this time with him,” says Emma, whose new book, The Unexpected Journey: Finding Strength, Hope, and Yourself on the Caregiving Path, is an empowering roadmap for caregivers navigating neurodegenerative disease.

“Bruce is very present in his body, and there is something so lovely and wonderful about that. He’s not thinking about what happened yesterday or what’s happening in the future. He is very grounded in today.”

Sixteen years since they exchanged vows in an intimate Turks and Caicos wedding in 2009, Emma sees newfound beauty in their enduring bond and quiet connection. “Sometimes, love does not need words,” she says. “I can just sit there with Bruce, and we look at each other and we laugh and smile and that, to me, is more than anything.”

Why Emma Heming Willis Says Her 18-Year Love Story with Bruce Willis ‘Has Only Grown’ (Exclusive)

The mother of two shares with PEOPLE how she fell for the Hollywood legend and what his ‘heartbreaking’ dementia diagnosis has meant for their love story

It didn’t take long for Emma Heming Willis to sense there was something singular about Bruce Willis. Introduced to him by her trainer in 2005, Emma — a flourishing model at the time — remembers Bruce as “so charming, so funny, so down-to-earth and so handsome.”

But stars didn’t align until 2007, when a friend cajoled her into accepting Bruce’s invitation to Turks and Caicos, where he was vacationing with his daughters Rumer, Scout and Tallulah, his ex-wife Demi Moore and her then-husband Ashton Kutcher. “I got to see this other side of Bruce, who was a family man,” Emma tells PEOPLE in this week’s cover story. “On that trip, I ended up falling for him really hard. That was the start of our love story.”

Their romance unfolded with ease: They married in 2009, welcomed daughters Mabel and Evelyn, traveled together to Bruce’s movie sets and built a lively home filled with laughter. “Life was busy… full and fun,” she says. “If the girls were swimming in the pool, he would come home, dive in with his clothes on just to get a laugh. He’s the iconic girl dad.”

But when Bruce was diagnosed with frontotemporal dementia (FTD) in 2022 at age 67, their lives—and dreams for the future—were upended. “Early on, life felt very dark, very one-note of just grief and sadness,” says Emma. As a full-time caregiver, she felt unmoored, isolated and unprepared to navigate Bruce’s progressive illness on her own, much less protect his privacy and parent their two young kids alone.

Emma eventually found a way forward for herself and her family. She sought extensive guidance from experts, found strength in community as one of nearly 12 million people in the U.S. caring for a loved one with dementia, and discovered renewed purpose in caregiver advocacy.

She also discovered a whole new level of connection with Bruce. “I feel like our love story has only grown and developed more,” she says. “It sounds woo-woo but it’s just on a more cellular level. I am so grateful that he is very much here, very much a part of our day-to-day.”

While it’s meant a reimagined dynamic, she sees newfound beauty in their enduring love story. “It has meant so much to be able to meet him where he’s at, to enjoy this time with him,” says Emma, whose new book, The Unexpected Journey: Finding Strength, Hope, and Yourself on the Caregiving Path  is a roadmap for caregivers navigating neurodegenerative disease and shines a light on the realities of FTD.

“Bruce is very present in his body, and there is something so lovely and wonderful about that. He’s not thinking about what happened yesterday or what’s happening in the future. He is very grounded in today.”

And although FTD has compromised his speech, Emma cherishes their forever bond forged 18 years ago. “Sometimes, love does not need words. I can just sit there with Bruce, and we look at each other and we laugh and smile and that, to me, is more than anything.”