Summer Reading: Elevate your Care Partnership with these books
Summertime is sold as a time to slow down, take time off, and finally have time to read. Whether or not you have time for a vacation, we do have some suggested reading for you.
Instead of the romance novels that are very much beach tote staples, we have culled our selection from the Care Partnership space. These novels offer guidance, solace, and the reminder that you are not alone.
We hope that, however and whenever you read these recommendations, they ease the weight of all that this journey requires you to carry.
Orlando-area residents can always consider visiting our Little Free Library, and borrowing a title related to Alzheimer’s and other expressions of dementia. ((See our wish list, and donate if you feel so called, at this link)).
In Love: A Memoir of Love and Loss by Amy Bloom
This novel, published in 2023, is based on a true story. In Love follows the author and her husband as shifts in his behavior yield an Alzheimer’s diagnosis. Together, they face the aftermath and all the decisions that it brings.
“Brian and Amy made the unimaginably difficult and painful decision to go to Dignitas, an organization based in Switzerland that empowers a person to end their own life with dignity and peace,” an official synopsis reads.
Bloom’s Come to Me was a National Book Award finalist, her biography states.
The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer's Disease and Other Dementias by Nancy L. Mace and Peter V. Rabins
This book is a staple and for good reason. The authors provide information on what causes dementia symptoms to develop, and how to manage them as the journey continues.
The seventh edition arrived from John Hopkins University Press in 2021.
According to an official synopsis, “It features brand-new content on everything from home care aides to useful apps to promising preventative techniques and therapies (and) practical advice for avoiding caregiver burnout…”
The book posits that both the person living with dementia-related brain changes and their Care Partner can live better lives with the right tools and resources.
Being Mortal: Medicine and What Matters in the End by Atul Gawande
While this book, published in 2017, doesn’t pertain to Alzheimer’s or other dementias, specifically, its wisdom is a salve for the journey.
Gawande, a surgeon, wrestles with the ways medicine falls short as people approach the end of their lives. The book includes both “eye-opening research and gripping stories of his own patients and family,” per the description.
“Riveting, honest, and humane, Being Mortal shows how the ultimate goal is not a good death but a good life — all the way to the very end,” the synopsis continues.
Understanding the Changing Brain: A Positive Approach to Dementia Care by Teepa Snow
Teepa Snow is a Dementia Care Specialist wholly dedicated to supporting people living with dementia-related brain changes. As the title suggests, her 2021 book will offer readers a look at “why and how the brain changes.”
“Know why something is happening, so you can reduce uncomfortable situations going forward,” an official synopsis reads.
Understanding the Changing Brain also supports readers in better handling their aggravation as those feelings arise.
Other Offerings…
Poets Beth Copeland and Pauletta Hansel penned collections inspired by witnessing family members navigate brain changes. Copeland’s Blue Honey follows her father’s journey with Alzheimer’s and her mother’s short-term memory loss, while Hansel’s Palindrome, depicts her mother’s journey with vascular dementia. We interviewed both authors for our article “Art as alchemy: How creative expression can transform your Care Partnership.”
That article also introduces Marianne Sciucco who cofounded and serves as manager and board president of AlzAuthors — a blog and podcast that centers “authors writing about Alzheimer's and dementia from personal experience to light the way for others,” per the website.
And keep an eye out for…
The Unexpected Journey: Finding Strength, Hope and Yourself on the Caregiving Path by Emma Heming Willis
This next recommendation has not yet hit bookstores — it is due September 9. But we are marking our calendars because this is the highly anticipated novel from Emma Heming Willis, who is navigating Frontotemporal Dementia alongside her husband, Bruce Willis, who was diagnosed with the disease in 2023.
“With The Unexpected Journey, Emma has written the book she wishes she’d been handed on the day of Bruce’s diagnosis,” the description says.
The synopsis includes a quote: “I know that no two caregiving journeys are the same, but we are connected by the same unchosen thread… In time, you will find your footing, and a way forward.”