Bruce Willis’ wife, Emma Heming, says it’s ‘hard to know’ if he’s aware of condition

Bruce Willis‘ wife, Emma Heming Willis, is sharing an update on her husband’s life with frontotemporal dementia.

In her first interview since the Die Hard actor’s dementia diagnosis, Emma opened up to Today about the day-to-day challenges Bruce faces and how they’re handling them as a family.

“Dementia is hard,” Willis told anchor Hoda Kotb. “It’s hard on the person diagnosed, it’s also hard on the family. And that is no different for Bruce, or myself, or our girls. When they say this is a family disease, it really is.”

The mother of two appeared on the morning show Monday to help kick off World Frontotemporal Dementia Awareness Week alongside the Association for Frontotemporal Degeneration CEO, Susan Dickinson.

The full diagnosis of frontotemporal dementia, including aphasia, can bring communication challenges, including speaking and writing.

Emma, who, along with Bruce’s family, shared that the actor was stepping away from his career after being diagnosed with the condition earlier this year, said it’s often “hard to know” if the 68-year-old movie star is aware of what he’s going through.

“It’s hard to know,” she admitted before Dickinson shared some of the early signs to look for with this condition.

Citing “unexplained changes” in the person’s behavior, Dickinson said frontotemporal dementia is often misdiagnosed — even by doctors — as ALS, Parkinson’s, and even certain mental health disorders like Bipolar disorder.

Emma said the diagnosis has been a “blessing and a curse,” allowing her to understand better what her husband has been going through.

“I think it was the blessing and the curse. To sort of finally understand what was happening so I could be into the acceptance of what is,” Emma said.

Accepting what is has been painful, however, with the Make Time Wellness founder adding, “It doesn’t make it any less painful, but just being in the acceptance and just being in the know of what is happening to Bruce makes it a little bit easier.”

Emma, who shares daughters Mabel, 11, and Evelyn, 9, with Bruce, said she’s more of her husband’s “care partner” than a caregiver.

“He is my partner, so I am his care partner,” Emma stated.

As for how she’s been able to navigate his diagnosis, Emma said it’s not a solo mission.

“I think as a care partner, it’s so important to be able to ask for help and support, and you can look to organizations like the AFTD, like Hilarity for Charity,” she explained. “And it’s important for care partners to look after themselves, so that they can be the best care partner for the person that they’re caring for.”

Amid Bruce’s diagnosis, Emma said their big, blended family, which includes the daughters he shares with ex-wife Demi Moore — Rumer, 35 Scout, 32 and Tallulah, 29 — makes the time to celebrate the many beautiful things happening in their lives.

It’s something she said her husband would want her to be doing.

“It’s just really important for me to look up from the grief and the sadness, so that I can see what is happening around us,” Emma said. “Bruce would really want us to be in the joy of what is. He would really want that for me and our family.”

While he doesn’t have all of his faculties intact, Emma said Bruce is still teaching her and her family so much, calling him “the gift that keeps on giving.”

“Love, patience, resilience… so much,” she said of what the family is learning from Hollywood icon. “And he’s teaching me — for me to be here doing this, this is not my comfort zone — but this is the power of Bruce.”

Emma added, “It’s teaching them so much, and how to care and love and it’s really… it’s a beautiful thing amongst the sadness.”