Since being diagnosed with frontotemporal dementia (FTD), Bruce Willis has been receiving support from his loved ones.
He is often with his ex Demi Moore and his daughters Rumer, Scout and Tallulah, but most of the care falls on his wife Emma Hemming, the mother of his two young daughters Mabel (12) and Evelyn (10).
How is Bruce?
FTD causes changes in behavior, language, motor skills, and eventually memory loss. Symptoms include problems with empathy. For example, it is often difficult to empathize with other people's problems. Bruce is in an advanced stage of the disease.
Emma about informal care
Emma is honest about how much she loves him, but also how difficult informal care is for her. “I know it feels like I'm going to go out and live my best life. I have to make a really conscious effort every day to live the best life I can,” Emma says in an Instagram video after walking a short distance. “I do it for myself, my baby, and Bruce. They don't want me to do it differently. I don't want people to think I'm okay, because I'm not. I'm not well.”
“Dementia affects the entire family”
“I don't know if Bruce was aware of his condition,” Emma, 45, says on the Today Show. “It's hard to appreciate. What I'm learning is that dementia is hard. For the person who's diagnosed. And for the family. It's no different for Bruce and me and our daughters. When I say it affects the whole family, I really mean it.”
Because the disease is often diagnosed in later stages, Emma says family members should watch for unexplained changes in how the person acts in the world. “A person who previously spoke normally may have difficulty converting thoughts into meaningful sentences or may no longer know the meaning of a particular word,” she says. “Maybe you are talking about someone who has always taken care of the family finances and no longer knows how to balance things or is having problems at work. A person who previously had normal behavior begins to make bad decisions or no longer completes anything.
Dare to ask
In this role, Heming learned through trial and error to take care of himself as well. “As a care partner, it is important that you are able to ask for help and support. It is also important that you look after yourself, otherwise you will not be able to look after others.
Because she has learned a lot about illness and informal care in recent years, Hemming is writing a book. “For me, knowledge is power, and building a group of supportive people around me was crucial,” Hemming Willis said in a statement. “It has restored stability and a degree of control, control that was completely shattered when the diagnosis of frontotemporal dementia first entered our family's world.”
Experiences and experts
In the book is the wife of a former action hero from films like Die hard She draws on her own experiences, but also lets experts speak.
Bruce Willis (68 years old) retired from acting in 2022 after he was diagnosed with aphasia, which later developed into frontotemporal dementia (FTD). FTD is a rare form of brain disease.
“Travel specialist. Typical social media scholar. Friend of animals everywhere. Freelance zombie ninja. Twitter buff.”