Emma Heming Willis has opened up about the painful reality of caring for her husband, legendary Die Hard actor Bruce Willis, as he continues his battle with frontotemporal dementia (FTD). In ABC’s Aug. 26 special Emma & Bruce Willis: The Unexpected Journey, the 47-year-old revealed that while Bruce remains in good physical health, the disease is steadily robbing him of his cognitive abilities. “Bruce is still very mobile. Bruce is in really great health overall. It’s just his brain that is failing him,” Emma shared.

Despite the heartbreaking challenges, Emma says their family has found new ways to connect with Bruce. Though he sometimes struggles to recognize her, he lights up in the presence of loved ones. “When we are with him, he lights up. He’s holding our hands, we’re kissing him, we’re hugging him. He is reciprocating. That’s all I need,” she explained. Emma, who shares daughters Mabel, 13, and Evelyn, 11, with Bruce, recalled a recent moment of joy when Bruce surprised them with a witty remark—something they hadn’t heard from him in a long time.

Still, Emma admits the journey is emotionally exhausting as cherished glimpses of the “old Bruce” fade quickly. “It’s just hard to see that because as quickly as those moments appear, then they go,” she said. “But I’m grateful my husband is still very much here.” As she continues her role as a devoted caregiver and advocate, Emma emphasizes the importance of focusing on the present: “Sometimes, it’s just easier for me to stay in the what is. It’s hard to look back.”