Since going public with her story as a caregiver to husband, Bruce Willis, Emma Heming Willis has opened up a number of discussions about caregiving. His diagnosis of frontotemporal dementia (FTD) came more than two years ago. Her story illustrates the challenges that caregivers, especially young caregivers, face, and the emotional burden of helping family members who have dementia.
Frontotemporal dementia, a progressive neurodegenerative disease, primarily impacts the areas of behavior, personality, and language. Bruce Willis’s diagnosis has obviously affected his life in all aspects. It has dramatically altered the home life for Emma, their two daughters and his three daughters from his first marriage to Demi Moore.
Emma is an for-pay full-time caregiver. Maggie’s focus now is on making sure Bruce is safe and comfortable at home 24/7. The rigors of caregiving made it impossible for her to maintain programming for their daughters. To prevent too much instability in the midst of all the uncertainty brought on by Bruce’s illness, she restricted playmates and sleepovers.
It’s making me realize, which is so fascinating because I forget in the mornings. I wake up every morning and I honestly forget that she’s sick. I forget she can’t talk. Then I have to remind myself that on bad days, she produces at the age level of a 2-year-old. I still have moments where I forget that I can’t just call her for guidance,” said Ciarra Holiday. At 29, she is still figuring out how to take care of a parent with FTD. Her story particularly strikes a chord with Emma, who experienced a deep sense of loneliness when Bruce was diagnosed.
Emma first learned about North Carolina’s Teepa Snow, an occupational therapist and dementia care expert, at the outset of her caregiving journey. Snow is the founder of Positive Approach to Care, a movement to create resources specifically for caregivers. Emma credits Snow’s guidance as a crucial resource in her efforts to understand and manage Bruce’s condition.
Snow emphasizes the importance of self-care for caregivers, advising them to “work on your own health and well-being for just a second.” She acknowledges that many caregivers struggle to recognize their emotional state, stating, “One of the hardest things to do is to recognize you’re in shock. You had no idea this was going to be what you’re taking on.”
Emma candidly talked about how lonely and hopeless she felt when Bruce was first diagnosed. She said, “I kind of felt like an island and very isolated. It felt like what our family was going through, and more specifically Bruce, was a situation that was just happening to us in particular. This sense of loss is something that so many emotional caregivers experience.
As Emma walks this challenging journey, she hopes to spread awareness of frontotemporal dementia and its larger impact. She initially hoped that by showing the realities of FTD she could encourage empathy. Importantly, it can more broadly provide support to caregivers and families who are experiencing similar circumstances.
There’s something really powerful and beautiful about that,” she shouted. She was speaking to the universality of grief and resilience that connects all caregivers. She concluded by reiterating that these feelings of sadness, anger, and loss are the common thread that weave the fabric of all those impacted by dementia.
Currently, clinical trials are underway to explore potential treatments for dementia, offering a glimmer of hope for families affected by this condition. While the medical community continues to find answers, Emma is still passionate about spreading awareness and information about FTD.
