Emma Heming Willis has recently provided an update on her husband Bruce Willis’s condition as he faces a battle with frontotemporal dementia (FTD). Her insight comes nearly three years after his diagnosis.
Understanding Bruce Willis’s Condition
Frontotemporal dementia represents a range of brain disorders caused by the decline of the frontal and temporal lobes. Approximately 50,000 to 60,000 individuals in the United States are affected by this condition. FTD is known for triggering notable changes in personality, speech difficulties, and is considered incurable. Patients typically live between seven to 13 years following the onset of symptoms; Bruce was diagnosed in 2023.
Emma’s Current Situation
Despite the challenges, Emma describes her husband’s current health as stable. “We’re on stable ground,” she mentioned at the EndWell Summit, a conference dedicated to discussions about death and caregiving.
Preparation for the Future
Emma, 47, has established a care team to support her husband and has documented her caregiving experiences in her book, “The Unexpected Journey.” She emphasizes the importance of preparing for future challenges, especially regarding end-of-life care. Alarmingly, a Pew Research study reveals that only 32% of U.S. adults have a will, and just 31% possess a living will or advance healthcare directive.
Addressing Societal Attitudes
Heming Willis points out a troubling societal trend. Many people avoid discussing care plans or death, leading to a lack of preparedness. “We need to not view it in such a dark way,” she stated. She has put a plan in place not only for Bruce but also for her daughters, Mabel, 13, and Evelyn, 11, to minimize their burdens in the future.
Maintaining Balance
Emma emphasizes the importance of self-care for caregivers. She prefers to refer to it as dedicating time for oneself. Activities like hiking and spending quality time with family bring her fulfillment amidst the challenges she faces. “It’s important for me to find those moments that I want to make time for,” she explained.
Involving Her Daughters
When it comes to discussing Bruce’s condition with their daughters, Emma believes in honesty. “If they ask, I will tell them,” she acknowledges. While her kids are aware of FTD, they primarily focus on the present.
Reflections on Life and Loss
Emma often thinks about her memories related to FTD, particularly the experience of a friend lost to the disease. In times of reflection, she offers comfort, reminding herself and others about the hope of reuniting with loved ones in a better place.
Through her journey, Emma Heming Willis inspires others facing similar challenges to embrace life’s complexities, advocating for preparation, open discussions, and the significance of cherishing each moment together.
