Witness to the Fall
A doctor wrestles with the helplessness of Alzheimer’s
"At night he falls between the bed and the three steps to the john. He falls finding his way to the living room. He is tipping over his walker, he is tripping over his feet, he is looking to lean on arms that aren’t there. His dreams call to him: He follows the instructions of his dead siblings, his Army drill instructor. He is called by the alarm company to come down to the pawnshop, by the MPs to report to his unit, by his mother to come in for dinner, and on the way he falls. He gets hung up in his nightshirt, tangled in his pants, slips in floppy socks, can’t find his shoes because we have hidden them. He falls at the front door calling for his mother, his sisters, his old Army buddies, Nates and Sammy. And I am failing; I, his son, the physician, am failing to keep my father from falling."
Dr. Jerald Winakur had more knowledge than most as he faced the frailties of his father’s advancing age. He is a San Antonio internal medicine and geriatrics specialist who has built a thriving practice that tends to the special needs of older patients, working in an era when the marvels of advancing medicine have made it possible for people to live to ripe old ages.
But all that experience and all that knowledge didn’t spare Winakur heartache and helplessness as his own father slipped down the road of frailty and dementia.
Facing those difficult times, the healing physician turned to his other gift—his love of words and his ability to capture the poignant moments of a lifetime. It became his first book, Memory Lessons, A Doctor’s Story, which was published this year by Hyperion Books.
Winakur, who studied writing at UTSA and now teaches seminar classes in literature here and at the University of Texas Health Science Center at San Antonio, tells the life story of Leonard Winakur—father, husband, businessman, bird-watcher, book lover, World War II veteran, high school track star, expert Ping-Pong player, artist and, eventually, Alzheimer’s patient.
Much already has been written about the heartache of Alzheimer’s disease, and this book is another touching portrait of a family struggling to cope with the insidious brain disease that slowly robs victims of their memories and self-awareness. But it also is the story of a doctor who balances the dual responsibilities of a son and a physician, and who has seen the aging process in his patients and who knows too much about the sad realities that await his own father.
"You can have all the scientific knowledge and all the clinical knowledge, but when it is in your own family, you are in a conflicted role," Winakur says. "You are a son struggling with a frail and demented father, and you also, as a doctor, have a very keen awareness of what is coming."
He began noticing memory lapses and behavior changes in his father years ago, as Leonard Winakur advanced through his 70s. But the sad moment of truth came in 2004 when heart problems required surgery and an extended hospital stay. Away from his familiar home, Leonard Winakur lapsed into a state that doctors call delirium, when the combination of a strange environment, illness and diminished cognitive abilities produces a disturbing change in behavior. Some patients recover. But for others, the condition forces families to reckon with realities that have been lurking in the shadows for some time.
Leonard Winakur became delusional, irrational, paranoid and combative. He had to be subdued with physical restraints. For his family, the hospital stay marked the beginning of a new life—for him and for them.
"I promised him and myself that I would try to manage everything I could without nursing homes," Winakur says. "I was just going to try to manage everything I could. I had medical knowledge and resources to find help, and yet it was still very difficult."
A year later, Winakur published an essay about the experience, titled "What are we going to do with dad?" in Health Affairs, a scholarly journal.
The title echoed a sentence uttered regularly by his younger brother, Michael, as they faced difficult decisions regarding their father. It wove together personal elements with a stark picture of the American medical system and its limitations on the care available for the growing population of the "oldest old," a phrase used to describe people over the age of 85.
Winakur’s essay was reprinted in the Washington Post, which carried him into the national media spotlight. His work was published in a number of newspapers, and he was interviewed on National Public Radio and other programs.
He was soon contacted by an agent who offered to help him market a book on the topic. A few months later the agent called to say she’d found a publisher. It was, Winakur says, "a scary moment."
"I looked at my wife and said, ‘How am I going to write a book?’ " He already was practicing medicine, teaching and caring for an ailing parent. Writing a book was one more task, but Winakur approached it with honesty and heart. The diary-like work contrasts painful observations of Leonard Winakur’s demented state with tender memories from years gone by, when he reveled in books and nature and played a mean game of Ping-Pong.
"In my mind’s eye I see him playing, a gangly young man in Army fatigues, pale gray eyes behind wire-rimmed glasses—Winnie, his buddies called him—-taking on all comers. His opponents flew in on prop planes from other battalions, GIs, like my father, who were passing time between their shifts loading gasoline cans onto ships bound for Patton’s Army as it barreled across Europe, or waiting to be sent over themselves. The soldiers crowded around the table, urging my father on with their bravado, the smoke from their ration of Lucky Strikes and Camels filling the barracks. They put down their pay and their packs of cigarettes, betting on their pal Winnie to keep slamming those little white balls down the throats of his opponents."
"I think it is a very important work in terms of baring his soul and telling an important story," says Steven Kellman, a professor of comparative literature at UTSA, who knows Winakur through writers’ organizations in San Antonio.
After Memory Lessons was published, Winakur drew an overflow crowd to the Health Science Center when he did a reading and book signing. Medical students and other spectators gave standing ovations and kept the event running beyond schedule as they asked questions and discussed the issues raised in the book, Kellman says.
"This is a book we’ve needed," says Wendy Barker, poet in residence and professor at UTSA, whose classes Winakur attended. "We have been such an ageist society. We have not looked to our elders for the kind of wisdom and experience we should. Jerry has raised such important questions in this book," she says.
Leonard Winakur died before his son’s work was published. One chilly morning in February 2006, as his wife, Frances, slept in the next room, he rose from bed, managed to walk through the house without falling, opened a bolted door and wandered into the yard. His wife found him lying in the grass a few hours later, dead from hypothermia.
More than a year later, Frances Winakur finally began sorting through the personal belongings, asking her sons to take what items and memories they wanted from the room where Leonard Winakur spent his last months.
The items include a drawer full of pajamas and elastic-waist workout pants and shirts, the "uniforms of the oldest old," Winakur writes.
"When I bring the pile to my face and close my eyes, he is there. I slide them all into a shopping bag. I will take them out to Comfort and put them away. One day, if I make it to as many years as my dad, I will wear these uniforms of my father’s oldest days as I shuffle into my own. I will wrap myself in his smells and no doubt add my own before it is over. I will feel him around me. I will be him.
"I want to remember."