Emma Heming Willis, Bruce Willis’s wife and caregiver, was interviewed by Oprah Winfrey on “The Oprah Podcast” yesterday about her family’s journey with FTD.

Mrs. Willis is currently making a series of media appearances to discuss her new book, “The Unexpected Journey: Finding Strength, Hope, and Yourself on the Caregiving Path,” set to release September 9. Her conversation with Oprah Winfrey touched on a wide range of subjects, from the confused and complicated feelings brought up by FTD’s onset, to the importance of self-care for caregivers, and the grief she feels that’s filtered through what’s been called “ambiguous loss.”

Coined by Dr. Pauline Boss, the term refers to when “the person is physically in front of you, but psychologically not there,” said Mrs. Willis. “It explains exactly what happens to people and their loved ones when they’re experiencing dementia.” She noted that her grief for the loss of his personality sometimes comes with feelings of guilt.

“Bruce isn’t thinking about what happened yesterday or what’s happening right now or tomorrow. He is so present. He is in the here and now, and it’s really beautiful to witness.” But she feels the burden, she said, of knowing that people not in her situation may judge her for grieving the loss of a spouse who is still alive.

Asked how the symptoms appeared, Mrs. Willis recalled a period that began with “annoying” miscommunications and progressed to personality changes that had her contemplating divorce. “I just didn’t understand how we were so connected, we were so enmeshed, and yet all of a sudden things just started falling apart.”

She said it was a “chaotic” period of about two years before she began to suspect that the issue wasn’t Bruce’s hearing or a rocky patch in their marriage. “And that instinct made me realize that we should go to the doctor. I finally understood that those crazy marital issues were not Bruce. Neither were those off moments and subtle shifts in his personality. They were the result of his brain being dismantled, taking part of the husband I knew and loved with it.”

As she took on the role of caregiver, with all the stress and trauma that can bring, a comment from her stepdaughter opened her eyes. Seeing Mrs. Willis throwing herself into caregiving at the expense of her own well-being, Scout Willis commented that she was more worried about Mrs. Willis than she was about Bruce. “I was like, oh my goodness, I am losing it. I need to get myself together. But I didn’t know how to ask for help. I didn’t know how to raise my hand. I didn’t know that you could.”

During that period, Mrs. Willis made a connection with AFTD. “Not all dementias are the same,” she observed, “so not all support groups are going to be the same. The Association for Frontotemporal Degeneration has connected me with resources, and with other caregivers” whose children are similar ages to the Willis’.

“And so it’s been beautiful to be able to sit down across from someone and just, they get you, they see you, they understand it. You don’t have to explain it, or over-explain it. It’s very important to find your community. [AFTD] has been a lifeline for me.”

Mrs. Willis’ conversation on “The Oprah Podcast” can be heard wherever podcasts are found, including Apple, Spotify, and YouTube. Her appearance the previous week on “Emma and Bruce Willis: The Unexpected Journey – A Diane Sawyer Special” is available to stream on Disney+ and Hulu.