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Emma Heming Willis opens a rather intriguing though seldom discussed whisk of the GTD journey of her husband Bruce Willis: anosognosia, which is a neurological condition that spared him from the awareness of having an illness, making Emma’s whole process of caregiving all the more difficult.
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The model and author went viral once she declared, “One term I wish I had brought up more,” during her media tour for The Unexpected Journey. She named anosognosia “another complicated layer of navigating FTD,” which she covers in her book and in a recent conversation with Katie Couric. “Anosognosia is a neurological condition where the brain cannot recognize its own illness,” Emma explained. “For Bruce, it meant he didn’t tap into his disease, which was a blessing, sparing him the awareness of that weight. For me, it was the curse of having to navigate it while carrying the weight of what he could not see.”
The revelation struck an indelible blow on fans, many of whom would suddenly realize whether or not they had come in contact with it ever since dementia had entered their lives. “This answers some questions we had when we were navigating my mom’s dementia, as she was really good at brushing off symptoms, making excuses for them, until we would come for an extended visit and initiate truly seeing the reality of it from day to day,” offered one commenter. Another user simply admitted, “I honestly didn’t know there was a word for that,” demonstrating that very few understand the symptom at all.
The discussion revealed the unfortunate experiences to be indeed common in all kinds of dementia. “Alzheimer’s caregivers see this often,” one wrote; “makes the situation even more fraught and frightening when your loved one refuses help and fights you every step of the way.” “True for Lewy Body too,” piped one; others chimed in regarding their journeys with vascular dementia and various neurological disorders.
The cetacean of stories ushered in the chorus of recognition and release. “I believe my husband has this and was so relieved when I read about it in your book,” said one caregiver. “I’ve been angry at him for being stubborn and his ego not seeking help. He says I’m making a big deal out of his confusion. Knowing the word doesn’t make caretaking easier but I’m simply less angry at him.” And people responded: “Yes… let go of that anger and know that he doesn’t (maybe thankfully?) have a clue. Same at my house.”
Emma admitted that “I didn’t learn this in the doctor’s office either. I went digging for answers.” The statement found an echo with many who had confronted the same void. A professional said: “In my years working in memory care, I never heard of this word until just now,” while another added, “it literally translates as ‘You don’t know what you don’t know.’ It’s such an important part of understanding FTD and other dementias; it is a symptom of the disease and is not just denial.”
This discussion illustrated yet another layer of challenges families face in finding the right information and support. One user gave her father’s situation: “the neurologist [is] blowing off my thoughts because he doesn’t see signs yet of Alzheimer’s,” describing the diagnostic hurdles so many endure. Another said her husband with vascular dementia “doesn’t know what he doesn’t know” with regards to safety concerns about being alone and mobility issues.
With her book and social media presence, it might well be that Emma is closing this awareness gap. “I’m listening to your book now, and it’s like you wrote the story of our lives,” said one. Another said: “Thank you for your book, your advocacy and your education. You’re helping so many people on this journey.”
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The anomaly of anosognosia is another brick paving the road toward clarification and aid that Emma Heming Willis is carving out for families navigating FTD and other dementias, taking her direct experience and turning it into education for those who so desperately need it. Her powerful caregiver conversation with Demi Moore and her work to honor those who transform grief into hope for FTD families are testaments to her commitment. She has also shared Bruce Willis’s advice for her new book on dementia caregivers.