Lynn Casteel Harper, On Vanishing: Mortality, Dementia, and What It Means to Disappear (Berkeley: Catapult, 2020), 240pp.
A book review by Ken Anderson. Ken, now retired, was previously Vice President for Public Sector Business Development with Optum/UnitedHealth Group. He, his wife and two dogs are active with a Foursquare community near Vancouver, Washington.
Lynn Casteel Harper is a Baptist minister, chaplain, and essayist. She previously served as a chaplain at a nursing home, and is currently the Minister of Older Adults at The Riverside Church in New York City. Vanishing is her first book, and it's a good and important one.
According to the American Society on Aging, the number of Americans ages 65 and older will more than double over the next 40 years, reaching 80 million in 2040, about one in five Americans. That's up from about one in eight in 2000, and just 4% in 1900. Given these demographic changes, we can expect the number of people living with dementia to double as well. The increased care options of assisted living, memory care homes, and nursing homes for those with dementia, while providing options for care, also result in people leaving their families and familiar communities. This aspect of how our society deals with people who have dementia drives Harper's discussion in Vanishing.
Throughout her book, Harper interweaves the story of her grandfather. After the passing of his wife, he showed increasing symptoms of memory loss and disorientation. He needed to move from living independently to another city in order to live with his daughter, and then later to yet another city and a nursing home, where he eventually passed away. That story mirrors my own experiences with my grandmother and with my mother. I also have a good friend whose wife is “disappearing” through her slow but steady loss of memory and orientation. The pain and confusion, as well as regrets and doubts, still resonate deeply.
Reflecting upon the experience of her grandfather is wrapped around numerous other stories of people that Harper interacted with while ministering in nursing homes. These people struggle to know who they are today and who they were before the ravages of dementia. It is moving and touching. To these poignant stories she adds reflections on theology, history, philosophy, literature, and science.
Harper points to the writings of the Apostle Paul and his declaration in 1 Corinthians 1:27–29, "But God chose the foolish things of the world to shame the wise; God chose the weak things of the world to shame the strong. God chose the lowly things of this world and the despised things—and the things that are not—to nullify the things that are, so that no one may boast before him.”
The experience of seeing a loved one change, and change in ways that neither we nor they want, is difficult. Their needs increase as their former self vanishes. There are numerous instances of children saying something like "that is not my parent." The parent seemingly no longer recognizes their own children, or confuses them with others who are no longer alive. After a while, visits decrease (vanish), with the rationale that the person does not know I am there anyway. It is how we cope.
Harper introduces the construct of person-centered care, which means to start where the individual is, not where we want them to be, or how they used to interact. This can go a long way toward countering the sense that the individual is absent, that they are gone or empty or even unaware. By the end of the book, Harper changes her reference point and fear-inducing “if I get dementia” to a more accepting “when I get dementia.” That could be my lot as well. May we all find ways to not vanish and disappear from each other. The experience of reading this book will rest with me for a long time to come.
Dan Clendenin: dan@journeywithjesus.net
