“Now It’s Personal, What Happens When Philanthropy Begins at Home,” is the theme for Town & Country’s November issue, which has four different covers spotlighting different people. One of those covers is Emma Heming Willis, who’s been married to Bruce Willis for 15 years and has been his care partner for the past several years as he battles frontotemporal dementia. Throughout Bruce’s illness, Emma has been candid about the journey to getting a proper assessment (FTD is notoriously hard to diagnose) as well as the rollercoaster of emotions that happen when caring for a loved one in decline. She’s also been clear about the fact that she never would have wanted to be a public advocate, having always preferred to leave the limelight to her husband. But she knows that stepping up now for other families impacted by FTD, is the best way to honor Bruce.
Katie Couric interviews Emma for this piece — a fitting pairing as Katie lost her first husband in 1998 to colon cancer, and has been a staunch advocate for early detection screenings ever since. Here are some excerpts of the women discussing parenting amid illness, and raising awareness as a way to make some good come out of the bad:
KC: I relate to what you’re going through. When my husband was diagnosed with stage four colon cancer, my girls were just five and one. I think about your kids and trying to explain what’s happening to their dad. How have you been able to help them understand the situation?
EHW: This disease is misdiagnosed, it’s missed, it’s misunderstood, so finally getting to a diagnosis was key so that I could learn what frontotemporal dementia is and I could educate our children. I’ve never tried to sugarcoat anything for them. They’ve grown up with Bruce declining over the years. I’m not trying to shield them from it.
KC: When you finally did get the diagnosis and you had a name to put to what Bruce was experiencing, how did you handle it?
EHW: What I learned from our therapist was that if children ask questions, they’re ready to know the answer. If we could see that Bruce was struggling, I would address it with the kids so they could understand, but this disease is chronic, progressive, and terminal. There is no cure. Obviously, I don’t like to speak about the terminal side of this with them, nor have they asked. They know that Daddy’s not going to get better. … This is not the opportunity that I would want, but it’s the opportunity that’s been presented. I wanted them to see us come out with our family statement, and I get goosebumps thinking about how it was received with so much love and compassion. We’ve been able to raise awareness on a global scale, and they could see the reach and impact that their father has. That’s a beautiful thing.
KC: You’re also close to Bruce’s adult children. How have you been able to involve the whole family in his care?
EHW: The family respects the way I’m looking after him; they really support me. If I need to vent, if I need to cry, if I need to rage — because all of that can happen and it’s okay to have those feelings — they are always there to listen. I’m so thankful that we are this blended family. They’re very supportive, very loving, and very helpful, and a lot of people don’t have that.
KC: It’s a loss, right?
EHW: We had so many plans, so many beautiful things we wanted to do with our girls, so many things that we wanted to experience together. You just rip that page out completely, and then how do you rewrite the story? I’m learning how to take some control back. … There’s been an enormous amount of strength and a lot of beautiful things that have come from this diagnosis, and I’m trying to throw it back into the pot so other people can know that they will be okay over time.
The part about all the plans they had for their daughters really did me in. Emma has been through so much with Bruce’s FTD, and she’s clearly been very present and emotional throughout it all. I appreciate her overcoming her more quiet tendencies, to being so open and vulnerable with the world, because it does have an impact. And she says here something that has been evident all along: that their blended family is united and supportive of each other. Emma knows that she’s benefitted from that support system, as well as other resources, and she’s working to pay it forward. Elsewhere in the interview Emma tells Katie that she’s writing a book that organizes everything she’s come across in the last few years, that she hopes will help fellow caretakers. The ultimate act of making lemonade out of the worst f–king lemons ever.
If you or someone you know is dealing with FTD, the Association for Frontotemporal Degeneration has a wealth of info, including the number for a helpline. As their website says, “You don’t have to take this journey alone.”