Emma Heming Emotionally Admits It's 'Hard To Know' If Bruce Willis Is Even Aware Of His Own Dementia Anymore

Emma Heming is revealing a sad truth about Bruce Willis.

As the Die Hard actor continues to battle frontotemporal dementia, his family is struggling to come to terms with some of the very real symptoms of the degenerative brain disease. On Monday, Emma stopped by Today for an interview with Hoda Kotb in honor of World Frontotemporal Dementia Awareness Week, where she revealed that she isn’t exactly sure if he’s even aware of his current state — which is taking a toll on the whole family. She explained:

“What I’m learning is that dementia is hard. 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 that this is a family disease, it really is.”

So, so sad.

She added that “it’s hard to know” if he knows what’s going on as the disease attacks your frontal lobe, which in turn can affect speech, emotions, personality, motor skills, and as Susan Dickinson, the CEO of the Association for Frontotemporal Degeneration put it, your “self-insight.” She explained:

“Some people, the first thing they lose is any understanding that they themselves have changed.”

How completely devastating that must be.

Emma shared that coming to terms with her spouse’s reality has been a “blessing and a curse,” as it allows her to finally understand the extent of his condition, but that it doesn’t make it “any less painful.” She explained:

“Just being in the acceptance is, and just being in the know of what is happening to Bruce, just makes it a little bit easier.”

She added that she rejects the term “caretaker,” and instead opts for “care partner,” sharing:

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

However, she’s also trying to keep herself afloat with supportive resources:

“As a care partner, it’s so important to be able to ask for help and support. You can look to organizations like the AFTD, like Hilarity for Charity — [which] is sort of a great starting point. It’s important for care partners to look after themselves so that they can be the best partner for the person that they’re caring for.”

So very true. She added:

“There’s so many beautiful things happening in our lives. 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. Bruce would really want us to be in the joy of what is. He would really want that for me and our family.”

Emma shares daughters Mabel, 11, and Evelyn, with Bruce, who is also father to daughters Rumer, 35, Scout, 32, and Tallulah, 29, with ex-wife Demi Moore. Watch her full interview (below):