When a loved one is diagnosed with dementia, you are often handed a pamphlet and sent out into a world that has suddenly crumbled. You are given No Roadmap, No Hope, and No Direction.
This was the reality for Emma Heming Willis when her husband, actor Bruce Willis, was diagnosed with Frontotemporal Dementia (FTD). In Emma’s new book, The Unexpected Journey, she provides the resource she wishes she had been handed that day.
As someone who has been on this care-partner journey for years, I approached this book with curiosity.
Is this just for beginners? In many ways, yes – and it is excellent for that purpose. Emma gathers a “village” of experts to guide the uninitiated through the shock of diagnosis, the confusion of a changing brain, and the necessity of building a support network. If you are at the starting line of this marathon, this book is a vital navigator.
However, as a veteran care-partner, I found myself pausing and underlining sections that speak to the soul of this experience, regardless of how long you have been serving. While the practical logistics were familiar to me, the chapters on ‘Reframing the Journey’ resonated deeply.
Emma challenges us to shift our perspective – not to deny the grief, but to find agency in how we view it. She writes about the “Remarkable Reframe”: moving from a mindset of loss to one of unconditional love. This mirrors my own truth. I often tell people that serving my wife is an honor. Where others see tragedy, I choose to see a gift of time – time that allows for a “long goodbye” rather than an acute, sudden loss.
The book explores finding joy in the “here and now,” a lesson that took me years to master. It reminds us that our loved ones are still there, living in the present, and that we can join them there. It validates that self-care is not selfish; it is self-preservation. You cannot pour from an empty cup.
Whether you are paralyzed by a fresh diagnosis or, like me, are years down the road finding beauty in the quiet moments, this book offers a hand to hold. It reminds us that while no two journeys are alike, we are all connected by the same unchosen thread. We don’t just have to survive this; with the right mindset, we can find a way to thrive.
RELATED RESOURCES:
- The Unexpected Journey: Finding Strength, Hope and Yourself on the Caregiving Path, by Emma Heming Willis
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