A New Booklet of Laughter and Forgetting
“I’ll never forget the moment when the woman I knew as my mother vanished before my eyes ….”
Entry to the Alzheimer’s world takes us through desolate country, growing colder and more barren as we near the end. Opinions, memories, idiosyncrasies, habits slowly fade into the gray mist; eventually our loved ones may become mute, stolid, as still as the stones of the bitter terrain around them.
Voices of Alzheimer’s by Betsy Peterson (Da Capo Press, Cambridge MA, 2004) collects thoughts and stories from patients and their families, reminding us that this barren road is much traveled by others. The path leading to a final, stone-like silence may be paved with all the variety and richness of human intentions, including patients’ reactions wise or mystified, serene or rancorous, knowing or profoundly unknowing.
The author is an articulate woman of some accomplishment, whose husband was diagnosed with Alzheimer’s pre-mortem, but proved on autopsy to have fronto-temporal dementia, a newly recognized extension of the older pathologic term Pick’s disease. She rightly found resonance and a great commonality with other families coping with dementia, and yet she recoiled from the word “dementia” as ugly and sad, preferring the gentler “Alzheimer’s” as a collective term for many illnesses and many families. She collected many short quotations and vignettes from patients and their families, illustrating how each medical “case” is different in its particulars: how the patient evolves in their own fractured understanding, how each family reacts, how every facet of living is affected, how one copes: with humor, with anger, with acceptance, with faith.
My favorite was the story of the family who successfully involved their mother in planning her own surprise party. After clearly making her preferences known, she was nevertheless legitimately surprised and delighted on the day of the event. Like Reagan’s apocryphal enthusiasm [not quoted here] for meeting new people every day that, somehow, you feel like you’ve known all your life.
Bob Nichols, certainly the wisest of all San Diego neurologists, once defined neurology as “being a friend to a patient traveling down a long, hard road.” If so, this book is a friends’ compendium, a useful and very human supplement to our doctorly preoccupation with neurodiagnostics, with blood tests, and with tiny, expensive pills. This book — suitable for the anxious with short attention spans — belongs in every waiting room of every primary care doctor, every neurologist or psychiatrist or geriatrician. And in our new era of “information therapy,” I fearlessly prescribe many books for family and patients … this new volume clearly belongs on my “short list.”
“… I’d had a difficult relationship with my mother. Her dying seemed endless and her existence pointless, and, at times, I felt as if once again she’d never do what we wanted her to do. I kept asking myself, “Why doesn’t she die?” But after she died I could see that this long dying was a time of healing for both of us. I could hold her hand and sing to her and read psalms, and I think she felt loved as well. This time with her was a gift, for all its difficulty, and I’m a different person because of it.”
In our new, medical world where chronic illness predominates, wise books like this one will help doctors, patients, and families find our way. We need to rediscover the possibilities of healing in despair and of spiritual growth in physical impoverishment. Jesus Himself directed much of His brief ministry on earth to healing chronic conditions. As physicians, we need to remain alive to the possibilities for spiritual growth in our own patients and their families, and this humble volume provides a prosaic tool for getting us there.