There are certainly many books documenting the dementia caregiver’s journey, both those from personal perspective as well as third-person accounts. However, few could also be viewed as an inspiring love story. It came as a surprise that Courageous Hearts by Cyndy Noel was exactly that. Described by one reviewer as a “powerful memoir of the truth of enduring love,” this book does a thorough job at documenting the journey of a spousal caregiver dealing with her husband’s dementia; however, it is also a beautiful love story of a marriage that must evolve in the face of a disease that has no “happy ending.”
In the forward crafted by the Director of Mindfulness Education at UCLA, Diana Winston, you get the first evidence that this book will offer more to the caregiver than others written on the topic. She describes Noel’s education in mindfulness, who was once a student of hers, and how Noel guides readers on how to tap into this practice during a time of great challenge. “It is a lesson for all of us–no matter what we’re facing. Cyndy is a trustworthy guide, writing from deep in the trenches to illuminate this,” says Winston.
Especially poignant is the way Noel begins the book by way of the Preface. She speaks about a poem written by a friend of her husband Ron and hers called “Obstacles,” which served as inspiration for the book. “The way is paved with obstacles” begins the poem, but according to Noel, if we turn these life events into something of value, we will grow toward “a wider vision of reality.” This is exactly how the book is constructed as a narrative. The reader gets to watch and learn from Noel’s journey as a not only a dementia caregiver, but also as a spouse, whose marriage ultimately becomes stronger through her husband’s dementia.
Noel takes the reader back to the roots of her relationship with Ron in Chapter 1 so that there can be an understanding of her perspective about what was happening to Ron and how she was viewing it from the beginning, before she truly understood the disease. This foundational knowledge about their marriage, which was a second one for both Noel and her husband Ron, was important for the reader to “take the journey” with Noel–in a way the reader was living in the moment with Noel, which is a part of the practice of mindfulness.
The chapters of the book go from there along the timeline of Noel and her husband Ron’s progression through Alzheimer’s disease, living true to the subtitle on the cover of the book–“A Journey Through Alzheimer’s.” In this way, the reader learns/is educated as Noel becomes more knowledgeable about the disease and her role as a caregiver. Noel’s living experience is a guidebook for current caregivers, but also validation of what they may be feeling at each stage of this challenging path.
At many times in the book, the descriptions of what is happening to Ron and Noel are very detailed and evoke very emotional responses on the part of the reader. This is both what makes the book recommended, but also provides a bit of caution for this reviewer. Details about bodily functions and hygiene may be too graphic for some readers. However, if the reader chooses to jump into this book with full awareness of this piece, the rewards are many.
As if the prose of the book were not gift enough, there are appendices at the end of the book that are equally valuable. One of the appendices was a graphic juxtaposing the timeline of the development of a child and the role of its parent caregiver with the opposite progression of a person with dementia and its adult caregiver. This diagram clearly puts into perspective what the spousal caregiver, especially, is grappling with during this caregiving journey.
Overall, from start to finish, Courageous Hearts, by Cyndy Noel, is not only a powerful read, but also a beautiful one. The reader must be “courageous” to take this journey with Noel as the primary caregiver for her husband Ron. However, there will be a transformation in the reader’s understanding of the disease through the eyes of this caregiver and of the impact to a marriage that dementia brings. This “enlightenment” is worth the tears that will likely ensue.
