In a recent interview with Diane Sawyer, Emma Heming Willis, wife of Bruce Willis — an actor known for his charming smirk and verbal wit, as well as his intense action hero roles — opened up about how her husband’s Frontotemporal dementia (FTD) diagnosis has impacted their marriage. And how long before they even knew he had it, the disease was already straining their relationship to the breaking point.
It was a storybook romance. Emma Willis says it was easy and uncomplicated to blend with Bruce’s family, including his three grown daughters from his previous marriage to actress Demi Moore, as well as Moore and her husband at the time, Ashton Kutcher, who all remained close. They became one big “blended, extended” family.
After marrying in 2009, Bruce and Emma had two more daughters, Mabel in 2012, and Evelyn in 2014. Life was happy, busy, and very fulfilling with work and travel. Bruce was a “great, fun dad” who loved being surrounded by all his girls, making them laugh.
But at some point, Emma Willis says, their relationship began to feel “cloudy.” FTD is a disease that “doesn’t scream, it whispers.” Communication was breaking down, “conversations weren’t aligning,” she told Sawyer. A stutter Bruce struggled with in his youth returned, but it never occurred to Emma that it could be a symptom of a new disease. She was desperate to understand what was happening to their relationship, and why. “I felt like my marriage was crumbling,” she says.
Getting a dementia diagnosis was devastating and traumatic (there is no cure for FTD), but it also brought a kind of relief — now she knew it wasn’t her husband she was having trouble connecting with, it was the FTD slowly “taking his brain.” Looking back, she says, it’s hard to know where Bruce ended and the disease began.
Finding a community of other caregivers who understood what she was going through helped her “come out of the darkness” and feel less alone. Knowing how dementia can cause families to fall apart, Emma Willis has now written a book, “The Unexpected Journey,” providing a roadmap to help others — especially those who don’t have the same access to resources the Willis family enjoys. She notes that early diagnosis is key.
Today, Emma Willis says that, although her husband has lost his speech, he is “very present” with his family; he’s grounded in the now. And she has learned how to allow joy and happiness back into their lives, despite the daily hardships and ongoing grief; their love story continues to grow, developing “at the cellular level.”
What is dementia?
Dementia is an umbrella term for a group of brain disorders that cause progressive or persistent decline in cognitive function, often accompanied by impairment of memory and abstract thinking ability, and personality or behavioral changes.
Common types of dementia include:
- Alzheimer’s disease – Most common form among older adults
- Vascular dementia – Caused by damaged blood vessels in the brain
- Lewy body dementia – Characterized by abnormal protein deposits in the brain
- Frontotemporal dementia – Affects the frontal and temporal lobes of the brain, causing changes in language/speech, behavior, and personality. This is the most common dementia diagnosis in people under 60.
In addition to the devastating effects of intellectual decline, dementia takes an enormous emotional toll on a marriage and can bring hefty physical and financial burdens as well.
Caregiving for a spouse with dementia is a huge daily undertaking, and one that can shift relationship dynamics dramatically:
- Personality and behavior changes can make the patient seem distant and unfamiliar,
- A person with dementia may become more withdrawn or lose interest in sex, reducing intimacy in the relationship.
- Good communication is the cornerstone of a healthy marriage, but that can become strained as language skills decline.
- The caregiver may feel tired and stressed as more daily tasks fall to them.
In cases of young-onset dementia — when the disease is more unexpected and may therefore take longer to diagnose — research has found that many couples experience a “decline in the perceived quality of the relationship” before diagnosis (similar to what Emma Willis described). Following diagnosis, the shift in marital roles and family responsibilities can present special difficulties; for example, there may be young children, and the role of caregiver comes with increased parenting and breadwinning responsibilities, as well as, in some cases, the need to help care for their own aging parents at the same time. Some report feeling like they’ve lost their partner both in day-to-day life and in intimacy as behavior, personality, and sexual appetites change. One study found that “Couples gradually no longer saw themselves as husband and wife, but instead as caregiver and the person with dementia.”
The spouse/caregiver of a person with dementia may face their own serious challenges with mental health, identity, and social relationships.
Deciding whether you can stay in a marriage that has fallen apart due to a spouse’s advancing dementia can be emotionally harrowing, contentious among family members, and legally and logistically complex.
Typically, a court-appointed mental health professional will need to determine the ill spouse’s mental competency (whether they can understand the implications of divorce). If found mentally incompetent, special steps must be taken to ensure the rights of the person with dementia. Generally, the court will appoint a legal guardian or conservator to represent the interests of the ill spouse; this may be a family member, a lawyer, or a third-party professional.
As California is a no-fault state, the competent spouse will generally file a divorce petition based on “irreconcilable differences.” Community property laws still apply; however, a spouse with a serious illness may have special medical and financial needs (long-term dementia care can be costly), and the court will consider all these factors when dividing the estate and determining support payments. Where child custody is concerned, the court (as always) must make determinations based on the best interests of the child. Mental incompetency will influence custody decisions; however, depending on circumstances and safety, it may still be possible to preserve the parent-child relationship through arrangements such as supervised visitation.
If your marriage is struggling due to a spouse’s dementia diagnosis and you believe the best way forward is divorce or legal separation, speak to one of the experienced and compassionate attorneys at SFLG. We can help you navigate this highly sensitive, complex, emotionally wrenching, and deeply personal process.
By Debra Schoenberg
