“Learn the art of fragmented, irrational conversations and follow the patient’s lead instead of trying to control the dialogue.”
– Zen and the Art of Coping With Alzheimer’s
Denise Grady, New York Times (August 14, 2007)
Recently a colleague e-mailed me the link to Jane Brody’s New York Time’s article Alzheimer’s Patients Keep The Spark Alive by Sharing Stories. I went to “Save As” and printed off a copy to find the pages were in reversed order. The last page being the first noted: “Correction: A version of this article appeared in print on 08/09/2016 on page 5D of the New York Times edition. The headline now reads: “With Dementia, Stories as a Reminder of Love.”
The revised headline catapulted me back in time to when the Director of the Dementia Program at the Vermont Veterans Home invited us—the Center for Communication in Medicine– to present an educational program for those facing the challenges of caring for loved ones diagnosed with Alzheimer’s disease.
There were many times when I walked past the DVD of “Iris” in the video store. But this time, thinking about content for a caregiver program, I stopped and read the short description on the back cover: “Iris celebrates her life, while Alzheimer’s robbed her of it’s meaning.” I was also interested in viewing the film from a personal perspective, as a daughter whose father was diagnosed with late onset Alzheimer’s disease at 87 years of age.
My father was a man in search of meaning who turned to philosophers, poets and his bible “The Prophet” by Kahil Gibran. And, when he could no longer comprehend words on the page, I’d read this passage to him over and over again.
“And there are those who talk, and without
knowledge or forethought reveal a truth
which they themselves don’t understand.
And there are those who have the truth
within them, but they tell it not with words.”
Often, after a reading to him my father would take my hand, look me in the eye and would speak without words.
Thinking about how those living with Alzheimer’s struggle with words, I chose a clip from the film to open the presentation at the Vermont Veterans Home. The scene depicted an exchange between Iris’s husband and her doctor.
As the doctor pointed to the image of Iris’s brain her husband John cried out: “You have shown me a map of Iris’ brain world. You say it is empty, that all the unknown mysteries of life are gone now…but how can she say things with such lucidity…where in the empty jungle does that come from?”
“We don’t know,” the doctor admits.
“Not we—you don’t know. Is it not remotely possible that what Iris has to say is of some consequence?”
Hesitantly the doctor admits, “Yes perhaps…”
“Perhaps,” her husband John demands, “you must learn her language.”
I suspect there are more stories inside. Perhaps, if we listen closely we may glean some fragments.