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Emma Heming Willis found new ways to communicate with husband Bruce Willis after his frontotemporal dementia diagnosis.
In her book, The Unexpected Journey: Finding Strength, Hope, and Yourself on the Caregiving Path, Heming Willis, 49, details the impact the disease has had on her husband linguistically. (FTD’s most common symptoms include “struggles with decision-making, movement, speaking or language comprehension,” per the Association for Frontotemporal Degeneration.)
“Because Bruce can’t communicate with me (due to the variant of FTD he has, primary progressive aphasia), I must make judgment calls for him about absolutely everything. I can’t ask him how he’s feeling, what’s wrong or if something hurts,” Heming Willis wrote. “Instead, I read his body language or look into his eyes to understand what’s bothering him and what he’s experiencing. I compare this to the instinct that you have as a parent. With just one glance at your child, you can tell immediately if something isn’t right. And with one look at Bruce, I can tell if his neck hurts or if he’s got a headache.”
Primary progressive aphasia “begins gradually, with speech or language symptoms that vary depending on the brain areas affected by the disease,” according to The Weill Institute for Neurosciences Memory and Aging Center.
The outlet notes that in one type of the variant, “people may initially have trouble producing speech, whereas, in another variant, word-finding and comprehension problems are more pronounced.”
Heming Willis revealed in August that Willis was living in a second home with a full-time care team as he battles the disease. She defended their living arrangement both on Instagram and during an appearance on Good Morning America on Tuesday, September 9.
“It was a hard decision for us, but it was the safest and best decision not just for Bruce but also for our two young girls,” she said during the interview. “And, you know, it’s really not up for a debate. Now I know that Bruce has the best care 100 percent of the time. His needs are met 100 percent of the time, as well as our two young daughters. So I’m not gonna take a vote on that.”
Heming Willis also recently reflected on making the most of her time with Willis and continuing their love story.
“Bruce is very present in his body, and there is something so lovely and wonderful about that,” she told People on September 4. “He’s not thinking about what happened yesterday or what’s happening in the future. He is very grounded in today.”
She added a sweet sentiment: “Sometimes, love does not need words. I can just sit there with Bruce, and we look at each other and we laugh and smile and that, to me, is more than anything.”
The Unexpected Journey: Finding Strength, Hope, and Yourself on the Caregiving Path is out now.
