Book: “The Unexpected Journey, Finding Strength, Hope and Yourself on the Caregiving Path” by Emma Heming Willis
By Kathy A. Megyeri
Emma Heming Willis is a model, wife, mother of two, stepmother of three, founder of a vegan skin care company, and the wife of actor Bruce Willis. On September 9, she will release her first book, one caregiver’s look at what she calls an “invisible job.” The highly-anticipated book is the creative end product stemming from her longtime in-home care for husband Bruce, who was diagnosed with aphasia in 2022 and also has frontotemporal dementia, significantly impacting his ability to communicate and participate in everyday activities.
Related: People Magazine: Emma Heming Willis Reveals Cover of New Book
“The Unexpected Journey”
There must be more societal and financial support for caregivers, such as paid family leave and respite care (which is not covered by most private insurance plans, and Medicare and Medicaid coverage is limited). Caregiver “burnout” – physical, emotional and mental exhaustion for dedicating time and energy to manage the health and safety of someone else – requires resources like financial aid, meal assistance, and community support groups. This can reduce caregiver burnout, enhance the quality of care and ensure caregivers are not left isolated or overwhelmed.
Related: Comprehensive Guide to Respite Care for Caregivers
In “The Unexpected Journey,” Emma discusses the role of caregivers, some common misconceptions, and her own experience caring for her husband Bruce, who has frontotemporal dementia and is no longer verbal. She includes a support guide, because women, who bear most of the responsibility, often feel guilty when they seek assistance. Many doctors focus on the patients and helping them secure their autonomy without recognizing that caregivers also face challenges.
How You Can Help Caregivers
How can others help? Don’t say, “Let me know what I can do.” Offer to run errands, help with household chores, provide emotional support, bring a meal, accompany the patient on an outing, or just ask how the caregiver is doing and listen.
Caregivers themselves have to recognize their own strengths and issues and openly ask for help or hire a part-time aide. They must set aside a few minutes each day for deep breathing exercises, take short breaks or seek help from trusted friends, and ensure that caregiving is a voluntary choice. A shift must be made from viewing caregiving solely as the caregiver’s burden but, instead, a responsibility that involves a larger caring community.
Related: Caring.com: Find In-Home Care in Southwest Florida
To bring this to a personal level, I am the caregiver to a spouse suffering from Parkinson’s Disease. I am taking steps. We moved into a continuing care facility, so I have a much-needed support system. I welcome Emma Willis’s assertion in “The Unexpected Journey” that caregivers need care themselves, and the common misconception that they’ve got it all figured out, they’re all good, and they’ve got it all covered. Willis says, “Having resources and information readily available is imperative. I know between my experience and other care partners that I have spoken to whose stories are unfortunately similar.”
Related: 3 Easy Tips for Seeking Senior Health Care
Willis says with “The Unexpected Journey” she’s written the book she wishes she had had, a guide to navigating the experience with the latest research and insights from the world’s top caregiving experts that include getting a specific diagnosis, taking care of yourself, approaching the caregiving journey and reframing it, and coping with conflicting emotions. If Emma Heming Willis is in my corner as an advocate for more care for caregivers, there’s a fighter on my side. She writes, “It’s not an easy path for you or your loved ones, but I’m here to let you know that you are not alone, and in time, you will be okay.”
