“I don’t want it to be misconstrued that like I’m good because I’m not,” she says in a video on Instagram about caring for her husband, renowned actor Bruce Willis. “I’m not good.”
Despite her emotional experience, her message—as she calls it her “care partner PSA”—is simple.
“I have to put my best foot forward for the sake of myself and my family because again when we are not looking after ourselves, we can not look after anyone that we love,” she says in the video.
In 2022, Willis was diagnosed with aphasia, a condition affecting the ability to speak and understand. At the beginning of this year, the actor’s symptoms progressed. His family announced he had frontotemporal dementia, a progressive brain condition affecting emotional processing, memory, language abilities, and communication.
The Association for Frontotemporal Degeneration describes the condition as “an inevitable decline in functioning,” with those living between seven and 13 years after the onset of symptoms. There is no cure, according to the association. Willis’ family has been open about his condition, issuing a statement earlier this year, hoping to spread awareness about the condition.
“FTD is a cruel disease that many of us have never heard of and can strike anyone,” they wrote.
Now, Heming Willis has a message for other caregivers placed in uncertain positions.
She asks them to send photos of themselves enjoying an activity to create a caregiver community. Take a second out of your day to “look for something beautiful,” she says, adding the daily experience of watching someone you love suffer can feel like “doom and gloom.”
Caregivers often struggle in silence
“Caregiving is an admirable and heroic act, yet so many are suffering—and more often than not, doing so in silence,” Avanlee Christine, CEO and founder of Avanlee Care, which provides remote caregiving, previously wrote for Fortune.
About 20% of the U.S. population provides unpaid care to an adult with health issues, and this is only expected to increase as the number of seniors grows.
“At this very moment the majority of the population either has been a caregiver, is currently a caregiver, or will be a caregiver at some point in their lifetime,” Christine previously wrote.
Providing unpaid care also takes up an extra 20 hours on average a week, per the AARP. Still, 61% of family caregivers also work, and nearly one-fourth say caregiving has worsened their own health.
The time and toll can lead to physical manifestations of caregiver burnout, like sleep deprivation, anxiety, and irritability. If left untreated, chronic stress can also put people at risk for chronic health conditions and physical and mental exhaustion.
“It’s nearly impossible to put into words the physical, mental, and emotional stress experienced by any caregiver,” Christine previously wrote. “There’s an unspoken expectation to be selfless, flexible, and available at all times.”
Heming Willis is one of many caregivers, and it propelled her to create a community of like-minded individuals who can lean on one another.
She tells her followers “I have to make a conscious effort every single day to live the best life that I can,” adding she does so for Bruce and their two children. “It does not come to me easily. I am just doing the best that I can always,” she says.
Christine says there are ways caregivers can begin to take care of themselves, from asking for help, acknowledging their role, and building a support community, like Heming Willis who has used her platform to bring on experts around dementia and the caregiving community.
The lack of awareness around age-related diseases and their symptoms—and the fear around the unknown—is a large catalyst for caregiver stress and burnout, as only 15% of caregivers and patients opened up about their observation of dementia symptoms in themselves or others immediately, according to a London-based Alzheimer’s Society survey of 1,100 participants.
Leaning on others is one crucial way forward.
“I know that your day is stressful, and I know that your day is hard…but I just want you just to break it up for a minute, just for a second.”
She writes in her caption, “Your pictures, words of support and love for me and my family were felt. Honestly, thank you, it helps.”
