Bruce was diagnosed with aphasia, which results in the reduction of brain tissue necessary for language and speech, in 2022. The next year, it had progressed to FTD, one of the most common forms of dementia.
In an Instagram post shared on Friday, Aug. 29, Emma discussed the ABC News special and wanted to give it “a few days to sort land and breathe” before addressing the public’s response.
“I think that they did a beautiful job with amplifying FTD awareness, as well as shining a spotlight onto caregivers,” she began. “What I knew is that by sharing some of our intimate information that we would see these two camps. It would be people with an opinion versus people with an actual experience.”
Emma expected there would be “people with an opinion” in the comment sections, “quick” to judge the caregiver. “This is what caregivers are up against. Judgement from others,” she added.
The Make Time Wellness founder ended the video with a quote from her upcoming book, The Unexpected Journey: Finding Strength, Hope, and Yourself on the Caregiving Path. From a section titled “Opinion vs Experience,” noting what she learned from her therapist, she read, “Nothing changes an opinion quite as powerfully as when you have an experience. Even if someone is closely familiar with dementia or the condition you are caring for, they aren’t in your home, so they don’t know how your person is behaving or your family dynamics.”
Emma finished the video, saying, “The truth is that the opinions are so loud and they’re so noisy. But if they don’t have the experience of this, they don’t get a say, and they definitely don’t get a vote.”
In the caption alongside the video, Emma wrote, “Too often, caregivers are judged quickly and unfairly by those who haven’t lived this journey or stood on the front lines of it.”
In the special, Emma shared that she told their daughters “pretty quickly” about Bruce’s diagnosis. However, after she initially felt responsible for handling all the caregiving.
Scout, Bruce’s daughter with Demi Moore, expressed concern for Emma to get more help, and although they were able to hire professional caregivers, the sensitivity of Bruce’s condition required more.