Books like Before You Forget

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. 

During my decades of working with caregivers as a dementia care expert, I have heard many accounts of what the experience is like—from the sad and hollow to experiences rich in significance. Everyone faces obstacles when caring for a loved one; some of these obstacles come in the form of uncomfortable or painful emotional histories or past unresolved conflicts. After each opportunity to raise awareness and understanding about how dementia impacts individuals, their families, and their communities, I have been gratified to witness enhanced feelings of hope and comfort for all involved. It is my hope that through this book I will enter your home or your professional caregiving setting and work alongside you. 

I’m a physician and a writer. Together, they create a matrix of practice, research, and writing. I care for patients at the Penn Memory Center and am a professor at the University of Pennsylvania, where I teach and study topics at the intersections of bioethics, aging, and the neurosciences. I wrote The Problem of Alzheimer’s: How Science, Culture, and Politics Turned a Rare Disease into a Crisis and What We Can Do About It and the novel Open Wound: The Tragic Obsession of Dr. William Beaumont and essays for The New York Times, The Washington Post, Forbes, The Hill, STAT, and The Philadelphia Inquirer. I raise whippets, and I’m a passionate reader of the physician and poet John Keats. 

For nearly 7 years I watched my father decline from Alzheimer’s. It was perhaps the most difficult journey I’ve ever taken. My book, My Father’s Brain, is a memoir of my relationship with my father as he succumbed to his disease, but it is also a scientific and historical inquiry into the fragility of the brain. In the book, I set my father’s descent into dementia alongside my own journey, as a doctor, writer, and son, toward understanding this mysterious and devastating disease.

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.

I am a conflict resolution coach. I have a master's degree in conflict and am an ICF professional coach. I like my clients to live “clean” between their ears—even when life is not going their way. My book is light and fun. Deep and meaningful. And a flashlight to help those who are in the clouds of conflict get “good with themself.” Conflict becomes less scary when you identify the words that caused the issue. There is no use surviving a bad situation and then replaying it over and over again. Keeping the past alive in your mind keeps the past alive. Bury it with honor and grace.  

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.

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.