“When they say this is a family disease, it really is.”
It’s been a tough time for Bruce Willis and his family ever since they went public with the actor’s aphasia diagnosis, which then progressed into frontotemporal dementia. And now, his wife Emma Heming Willis is sharing an emotional update about how she’s holding up — and the heavy mental burden of taking care of a loved one.
Heming Willis stopped by the TODAY show on Sept. 25 in observance of World FTD Awareness Week, and she had a moving chat with host Hoda Kotb and Susan Dickinson, CEO of the Association for Frontotemporal Degeneration, about how this diagnosis has affected her family.
“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. And when they say this is a family disease, it really is,” Heming Willis said.
While Heming said that it’s “hard to know” how aware her husband is of what’s happening with his health, the family has made an active effort to include their young daughters, Mabel and Evelyn, in conversations about what his diagnosis means.
“We’re a very honest and open household. The most important thing for us was to be able to say what the disease was and explain what it is, because when you know what the disease is from a medical standpoint, it sort of all makes sense,” she said. “It was important that we let them know what it is because I don’t want there to be any stigma or shame attached to their dad’s diagnosis — or for any form of dementia.”
While there’s still much to be discovered about frontotemporal dementia, Dickinson explained what the disease looks like as it begins to take hold.
“What we’re talking about are unexplained changes with how a person is in the world,” she said. “Somebody who normally speaks absolutely fine has trouble putting their thoughts into meaningful sentences, or they may lose the meaning of a specific word. Maybe a person who always managed the family’s finances all of a sudden has trouble balancing a checkbook or has problems at work. Somebody who always perfomed well is either making poor decisions or just isn’t completing tasks.”
Though Heming Willis dove headfirst into supporting her husband’s care, she told Kotb she calls herself a “care partner” rather than a caretaker because the couple is in this together.
Sharing about how she approaches this difficult situation — and what that looks to people on the outside — has been a meaningful mission for Heming Willis. In a video posted to her Instagram page in August, she explained that putting on a happy face in spite of the turmoil in her family is crucial.
“I know it looks like I’m out living my best life. I have to make a conscious effort every single day to live the best life that I can,” she said. “I do that for myself. I do that for our two children — and Bruce, who would not want me to live any other way.”
Heming Willis shares the family’s adventures in adorable posts like this one, but she wants her followers to know that these happy slices of life aren’t the full picture of what she’s experiencing as her husband’s cognition declines.
“I don’t want it to be misconstrued that I’m good, because I’m not. I’m not good,” she said. “But I have to put my best foot forward for the sake of myself and my family because when we are not looking after ourselves, we cannot look after anyone that we love.”
Heming Willis, the founder and chief impact officer of Make Time Wellness, has been quite candid about her journey in dealing with her husband’s declining health, including a tear-inducing birthday tribute and sweet stories about how the couple’s children are coping with their dad’s diagnosis.
Her vulnerability on this topic is an important illustration of the very real effects of caregiver burnout. When Katie Couric Media spoke to experts about this topic last year, they suggested that support groups devoted to assisting caregivers can be an essential outlet for understanding the complex feelings that come with this demanding role. If you’re interested, Family Caregiver Alliance and the Alzheimer’s Association are great places to start.
And while it certainly won’t solve your loved one’s health problems, there’s also great value in appreciating things that are going well in your life.
“I just think it’s so important for us to break up our thinking, which can feel for me very much like doom and gloom,” Heming Willis said in her Instagram video. “This is a conscious effort. It does not come to me easily. But I am just doing the best that I can, always. …. I just want you to take a moment out of your day — and I know that your day is stressful, and I know that your day is hard — but I just want you to break it up for a minute, just for a second, and just look for something beautiful.”
