Books like Before You Forget — picked by fans

As an educator, author of children’s books, and caregiver of a loved one with dementia, I felt that I had to write a story about the disease from a child’s point of view. When I became a caregiver, I was struck by the lack of information for children and the misconceptions of the public about the disease. I wanted to create a story that reassures children and gives them guidance on how they can help be a caregiver. I added the Author’s Note to provide accurate information to adults so that more people are aware of the signs of dementia and to build understanding and compassion. 

An author of a caregiving memoir myself, I’m also a former magazine and newspaper editor who has had the opportunity to read and write about many topics. For the past five years, I have been a manager and director of AlzAuthors, an online global organization that offers the world’s most comprehensive collection of books and blogs on Alzheimer’s and dementia. To say I have done a lot of reading on this subject is an understatement. I’ve been honored to work with so many talented and big-hearted authors who share their Alzheimer’s and dementia experiences. Being immersed in the Alzheimer’s world through AlzAuthors has given me insight into many of the best memoirs on this subject.   

As an educator, author of children’s books, and caregiver of a loved one with dementia, I felt that I had to write a story about the disease from a child’s point of view. When I became a caregiver, I was struck by the lack of information for children and the misconceptions of the public about the disease. I wanted to create a story that reassures children and gives them guidance on how they can help be a caregiver. I added the Author’s Note to provide accurate information to adults so that more people are aware of the signs of dementia and to build understanding and compassion. 

As an educator, author of children’s books, and caregiver of a loved one with dementia, I felt that I had to write a story about the disease from a child’s point of view. When I became a caregiver, I was struck by the lack of information for children and the misconceptions of the public about the disease. I wanted to create a story that reassures children and gives them guidance on how they can help be a caregiver. I added the Author’s Note to provide accurate information to adults so that more people are aware of the signs of dementia and to build understanding and compassion. 

As a techno-optimist, I believe that technology can make us better!  Technology should make us stronger and healthier, technology should enable us to do things we couldn’t do without it, and technology should create an equitable future. In 25 years, I want superhuman eyesight, joints, and memory.  I want to travel with family and friends both physically and virtually through the metaverse. And I want to make sure that all of our data is used responsibly and ethically to optimize our home and community.  All of the books I selected (including mine!) build on these themes painting a picture of a future that is optimistic, and show us how we can be active participants in creating the future we want to see.  

Children’s stories about memory loss, Alzheimer’s, and dementia resonate with me because I know firsthand how difficult it is to care for someone with this disease. My Aunt Luella had Alzheimer’s, and I cared for her in my home. When my aunt no longer remembered me, my heart ached. I felt hopeless, afraid. I can only imagine how difficult it is for a child to watch as a beloved grandparent forgets them. I found these five books to be helpful and inspiring. They offer hope. They embrace the love that still exists.

As an educator, author of children’s books, and caregiver of a loved one with dementia, I felt that I had to write a story about the disease from a child’s point of view. When I became a caregiver, I was struck by the lack of information for children and the misconceptions of the public about the disease. I wanted to create a story that reassures children and gives them guidance on how they can help be a caregiver. I added the Author’s Note to provide accurate information to adults so that more people are aware of the signs of dementia and to build understanding and compassion. 

With more than 6-million Americans living with Alzheimer’s, my story is a shared narrative. Because reading creates empathy, I work to widen the perspective of my writing and include voices different from my own. Thanks to neuroplasticity, healthy brains have the ability to keep changing and learning. Each one of these books offers a helpful nudge in a new direction. My essays and articles have appeared in numerous publications including the Washington Post, Luxe, and Variable West, and are listed as notable in the 2019 Best American Science and Nature Writing. I’m currently at work on a second memoir about motherhood and the way travel cultivates a willing acceptance of uncertainty. 

I founded the All-Weather Friend, which is about helping friends get through difficult situations. My first book, Alzheimer’s: A Crash Course for Friends and Relatives, tells how to help people living with dementia. I’ve had hard times in my life—my husband’s brain tumor and suicide, my father’s dementia, infertility, miscarriage, my brother’s sudden death, and other things that flooded me with grief. But my life is filled with joy; I’ve learned that joy comes from God and from a compassionate connection with friends and people we love. I write and speak about “informed compassion.” I hope you’ll visit my website, where there’s a great dementia resource page with contributions by many readers.

As a person who has lived with chronic illness and disability for over a decade, I've often found it difficult to advocate for myself because I was afraid and because I just didn’t know that I had a right to speak up. Not just in medical settings but also with family and friends. So often, others with “authority” think they know what’s best for us, but in the end, we know our bodies best. I’ve learned to set boundaries, say no, and advocate for myself as a means of survival. These five books are wonderful examples of strong girls and young women using their voices to protect their bodily agency and build their body confidence.