ColumnistsLong-term Care

Books of Courage and Hope

By Susan Suben

Book ReadingI love to read. Put me on a porch, by a beach or lake, and I can spend the day musing over the characters and plots in a good novel. Two of my favorite books include “The Shell Seekers” (I’ve read it three times)” by Rosamund Pilcher and “The House of Special Purpose” by John Boyne, both with historical backdrops. I also enjoy the authors Anita Shreve (all she’s written), Jodi Picoult (“Leaving Time”), David Baldacci (“The Last Mile”) and Nelson DeMille (“Upcountry”).

Reading opens your mind and elicits emotion. We learn many things about ourselves and the world around us as we participate in the lives of the people placed before us. This is especially true when it comes to reading books about individuals and families faced with the challenges of Alzheimer’s.

Caregiving is never an easy task but we feel less isolated, guilty and frustrated when we share the experiences of other people going through the same things we are. In the hopes of giving you a brighter day, support and compassion if you are caring for someone suffering from Alzheimer’s, I would like to share a few books with you. Two deal with early onset of the disease and one is for children trying to understand what is happening to someone they love.

In “Jan’s Story,” Barry Peterson, a CBS correspondent, shares the story of his and his wife’s journey with her diagnosis of early onset Alzheimer’s. Former first lady, Rosalyn Carter, calls this book “a story of immense love…that will give comfort to those already caregiving and offer insight to the many who don’t know today that this may be their life and their story tomorrow.”

Peterson’s book is based upon his saved notes, his “Jan Updates” and the emails sent to him by friends and colleagues. According to Peterson, the book measures how he lost Jan yet keeps alive the shared memories they had.

As I read it, I could not help but cry for the loss of such a beautiful, young woman but even more so for the courage and strength Peterson exhibited taking care of someone he loved so deeply. The book emphasized that we are all capable of rising to meet the challenges placed before us.

“Still Alice” by Lisa Genova is the story of Alice, a happily married professor with grown children who struggles to stay connected to who she once was while dealing with early-onset Alzheimer’s. This book is told from the vantage point of Alice instead of from the caregiver’s perspective. We get a better understanding of what the person afflicted with the disease is struggling with. The book shows the strength and creativity Alice displays fighting the disease that is slowly taking her away. It does not romanticize Alzheimer’s but is an honest portrayal of the day to day toll it takes on someone’s life and that of their family. The book was brought to life on the big screen with exceptional acting that won Julianne Moore an Oscar nomination.

Children have a difficult time dealing with the concept of illness and death. Oftentimes, adults are afraid to share with a child what is happening to a loved one for fear of frightening them. In reality, the more that is shared with a child in a loving, simple way, the less afraid they will be. In “What’s Happening to Grandpa?,” Maria Shriver tells a poignant story through the eyes of Kate, a young girl who tries to understand what is happening to her grandfather who is diagnosed with Alzheimer’s.

The book shares the many questions that Kate has about her grandfather’s future, how her mother tells Kate about the progression of the disease, and how Kate finds a way to connect with her grandfather through the telling of stories so that the “bond between them forever remains in their hearts.” It can be read to any child by a parent who wants to demystify the disease.

These books are not meant to make us sad even though that emotion will surface throughout each page we read. They are not meant to scare us about the unknown future we all face. They are meant to fortify us as families and friends who will ultimately become caregivers to those we love. They are meant to comfort us, heal our hearts, and enable us to live on in the face of loss. There is strength in knowing we are not alone.

Susan Suben, MS, CSA, is president of Long Term Care Associates, Inc. and Elder Care Planning. She is a consultant for Canandaigua National Bank & Trust Company. Contact her at 800-422-2655 or by email at Ideas for this article came from Sheila Cevera’s presentation, Alternative Solutions for Long Term Care.