INTO THE STORM: Journeys with Alzheimer’s
Collin Tong (Thailand 1968-69), Editor
Book Publishers Network, $16.95
Reviewed by Dan Close (Ethiopia 1966–68)
In 1953, the brilliant scientist and science fiction writer Arthur C. Clarke wrote a short story entitled “The Nine Billion Names of God.” In a few short pages, he described how the monks of a lamasery high in the mountains of Tibet hired a couple of technicians to install a program on their computer. The monks are dedicated to reciting all the names of God, and it is their belief that when all nine billion names have been chanted, the world will end. To accelerate this process, they need a computer program.
The technicians install a program, but don’t believe it will work. Fearing the wrath of the monks, they leave in the middle of the night, making their way down the dark mountain trails as fast as they can. Finally, they stop to rest at just about the time they feel that their program will have run its course and the monks will find they have been hoodwinked. As they rest, they look up, and as Clarke says in the last sentence of the story, ” . . . overhead, without any fuss, the stars were going out.”
Clarke could have been writing about Alzheimer’s. That is what happens. One by one, all the stars of a person’s memory and personality go out. Functions cease. The universe that is the person we know changes, seemingly becoming diminished day by day. A mass of dark matter, of loneliness and confusion, fills the void.
How do we deal with this?
In his book INTO THE STORM, Collin Tong brings together the experiences of twenty-three people — himself included — who acted as caregivers for Alzheimer’s victims, journeying with them as they progressed through the course of this disease. In these essays we meet the husbands, wives, children, partners, relatives and friends who journeyed with their loved ones through the course of the disease.
This is a book of insights and observations on how caregivers can cope with loss, loneliness, and the sense of the unfairness of fate. In these 170 pages we accompany the writers and the guides they meet along the way. The importance of the book lies in hearing, understanding, and utilizing the stories of these caregivers. We get a sense of the importance of reaching out to others. What saves many of these caregivers is that they come to a point where they must reach out to others, and when they do, they discover that they are no longer alone.
In his introduction, Collin Tong calls these essays ” . . . tales of exemplary fortitude.” And he points out that the relationship between the caregiver and the afflicted is not dead, but simply changing. Relationships and learning count, he says. These are needs that last into eternity.
There is so much to learn from this book. I would recommend reading it slowly, perhaps an essay a day. Take time to get to know these caregivers and their patients. Taking time to look at their situations and listening to their words prepares us for a disease which, it is generally acknowledged, will affect more and more of us in the years to come. Here we find pragmatic advice, like that from Barry Petersen: Call a lawyer. Realize when it is time for assisted living. Protect yourself — you have a life that must extend beyond Alzheimer’s.
Here also, we find a warning from Anthony D. Robinson: Dreading isolation, we isolate; dreading a diminished life, we diminish; dreading the loss of our powers, we disempower.
We are led into this storm trek with a quote from Dante — who better than Dante to advise us on such a journey! We are led out of that journey in an essay by Olivia Ames Hoblitzelle, who relates the advice of a monk: use this as a teaching, a training, a blessing. What is necessary here is patience, generosity, steadiness, and compassion.
And along the way, we come to know some of life as lived by people with Alzheimer’s. In one instance, we find Rita Bresnahan talking about her mother, who lives in a world of constant surprise. She is surprised by flowers that have been in her room for days; she is surprised by the appearance of a visitor who has come to her room, not remembering that the visitor had just stepped out of the room a minute earlier. Rita’s mother is constantly living in the moment. How often have we all been advised to do just that!
Reading this book, we found suggestions and insights which were of great value to us as relatives of a person who is currently experiencing his Alzheimer’s journey. Among the most valuable are these: understand ambiguous loss — the person with Alzheimer’s is present and absent at the same time; do not rob the Alzheimer’s sufferer of dignity and autonomy; avoid high-stress arguing; understand that individuals with Alzheimer’s react to emotion rather than cognition. They are responsive to the emotional states of the people around them. Indeed, beyond these important insights, we found over forty useful guidelines which can aid a reader/caretaker/friend as they accompany a loved one along this journey.
Collin Tong has also included a bibliography of forty-five titles, some of which — Pauline Boss’ Ambiguous Loss; Joanne Coste’s Learning to Speak Alzheimer’s; and Richard Taylor’s Alzheimer’s From The Inside Out are remarkable works. INTO THE STORM is an excellent introduction to all of these.
This is a book containing worthwhile and practical advice. There are a variety of solutions to the problems presented here. Not all of them are applicable to all family situations, but the destructive force that is Alzheimer’s as it is recorded here is what happens during these pilgrimages. This book addresses that force and its effects. Through this book, we come to an understanding of the creation of the great sadness within the caregiver. We also come to a deeper understanding of the complicated thing that this life is. One truth that impressed itself upon me: we must appreciate each mind for the incredibly precious thing that it is. That is the key to understanding.
Dan Close (Ethiopia 1966–68) is the author of several books: What the Abenaki Say About Dogs; A Year On The Bus; Stories From The Arusi Hills; and the recently-published The Glory of the Kings. He lives in Underhill, Vermont with his partner Joan, who has a relative with a diagnosis of Alzheimer’s.