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Love in the Time of Dementia

2019; Elsevier BV; Volume: 20; Issue: 7 Linguagem: Inglês

10.1016/j.carage.2019.08.016

2377-066X

Jerald Winakur,

Counseling, Therapy, and Family Dynamics

For my mother and father, in memoriam He is seven when his father, a shopkeeper, dies. A sensitive boy, he has the ability to capture any image that catches his fancy. A high school teacher sends a note home to his mother urging her to send him to the Art Institute. She tears it up, the pieces fluttering to the ground in front of his eyes. It is the Depression, and each of his brothers and sisters is taken out of school in turn to run the pitiful business that keeps the family alive. The boy’s name is Leonard. Since he is the youngest of six, his turn comes late — he is, at 18, just a few months shy of graduation, but it is his turn. And he goes out into the world with as much formal learning as he will ever have. She is so young. A raven-haired girl of 15, she is a waitress in the tiny restaurant across the street from his shop. He comes in for lunch each day, sits at one of the few tables, and she comes to take his order. She has a sweet smile, and he makes her laugh. And then he begins to draw her: as she bends to serve, or at the register, or as she stands — in a rare idle moment — staring out the window onto West Baltimore Street. Her name is Frances, and she was born and raised in the tiny apartment above the luncheonette. She dreams of falling in love forever, living happily ever after. Then comes the war, and just like that he is gone overseas. The shop, with no sons left to run it, closes. Five years he is away, first to England, then to France. The Army Air Corps trains him as a photographer. His eye — that artist’s eye — is good, and someone notices. But the things he sees over there — the hollow-eyed waifs in dark doorways, the whole cities in ruins after the bombers have made their runs, the broken soldiers on the fields of battle, the survivors wrapped in white on the hospital wards, the decimated companies of men at attention as the bugle plays taps — he cannot get out of his head. He sends copies of the photos to her, and she neatly anchors each and every one by its four corners on soft, thick, black paper in albums. These are books of memories he will spend years trying to forget. She writes him letters every day. Chatty, newsy letters, girlish stuff about her life in the luncheonette. She seals each letter with a red-lipstick smooch on the back of the envelope, sprays it with the perfume he sends her from Paris. He puts each one up to his face once they finally find their way to him. He falls in love with her scent, her innocence. He returns, counts himself lucky to be in one piece. At 26, he is aching to get on with his life. She is 21 and still knows nothing of the world. In their wedding album are the rented top hats and tuxes, the bride veiled in lace, the tiered cake, the kiss, the dance, all recorded in black and white. More memories pasted onto blank, black pages, then stowed away. To what end? Life is ongoing, relentless. More memories: their two boys growing up, the brick Cape Cod in a new neighborhood full of them, the shop reopened, the rose garden, the collie, the birthdays and graduations, a trip here or there. He is a photographer, after all. She is the keeper of memories.The author’s parents’s wedding (above) and 60th wedding anniversary.IPhotos courtesy of Jerald Winakur.View Large Image Figure ViewerDownload Hi-res image Download (PPT) The arguments, the frustrations: Oh, she wanted a father-provider; and, oh, he so wanted to be deeply and passionately loved. Memories laid down deep in the depths, the good with the bad, resurfacing instantly, furiously. The worries over money, the tears over promises unfulfilled, the weeping over losses: parents, siblings, friends. This is a life to be lived through to the end, for the children if nothing else. A test of wills, of endurance. Isn’t every marriage like this? This is a life, and the memories pile up, the albums overflow, the excess banished to shoeboxes. The black paper, soft as crepe, crumbles over the years. Who has time to paint portraits when it is time to repaint the kitchen? There is nothing to spare for art’s sake. Now the boys are grown, educated, married. One is even a doctor, but he lives far away.Write your own life story as a means of passing down your memories and values to loved ones. Writing is also an excellent exercise with many cognitive benefits. Business is bad, and they lose the shop, the only work he knew how to do. And with it went the last vestige of his self-esteem. He takes to his bed. She finds a job. And then, for a few years, he rediscovers the old wooden easel. It gathered dust, leaning in a corner of the garage, but now stands on its own feet again, a welcoming stranger. He retreats into his garage-studio, plucks pictures from the boxes of memories. His mother dressed up in her Sunday best. His oldest brother, Frank — the one who was a father to him — in the bow of a rowboat, fishing on the Severn River. His own wife — startlingly young and beautiful, cutting roses off the vines he planted so many years ago. The blossoms, her lips, the same shade of red. Watercolors and oils flow from his studio, cover the walls of his home. In the act of painting he is transformed, resilient. He overflows with feelings he has never known or no longer remembers. They surge through him. When he is at his easel he cannot sleep. Mornings she finds him in the garage, alive, paint spattered, a new image glowing on canvas under the lights. Fran, what do you think? he asks. It’s nice, she says. She encourages him; helps pick out the frames that will hang on her walls. She ships some of the paintings off to her sons. In his weekly call, the one who is the doctor says he’s hung the latest one in his office’s waiting room. And now they are old. Where did the years go? A couple of heart attacks, cancer, radiation therapy. They are in their 80s, after all. What can one expect? Of course, the worst. He keeps getting lost. Even in the neighborhood. Turn right, not left, she says. Something in her voice — or is it his own deepest fear? — enrages him. She offers to drive. He refuses. They no longer go out at night. Not long after, it is the front door: he stands on the stoop, studies his keys, does not know what to do. The family gathers briefly. The car is quickly sold. The physician-son tries to help but is the wrong kind of doctor. The son suggests a home — he will pay for it — but she refuses. She wishes she had daughters. He can no longer be left alone. She retires from her job, but now she is at home with him all day, all night. Not what she expected, yet somehow what she has come to expect. The years go by like this. Friends stop calling. They sleep in separate rooms just so she can get a little rest. At night, he wanders the house, turns on the lights, peeps in through her door to make sure she is still there. Closes it again, shuffles back down the hall. He cannot remember names. Faces are familiar: he thinks his boys are his brothers or old friends he recognizes but cannot place. The sons, unable to deal with the sadness of it all, stay away. He won’t go out, lives in his pajamas, sleeps more and more. Refuses his meals, pees on the couch, falls in a heap at the front door. He was trying to locate his army unit — that’s what he says when she finds him there. She is beside herself. Life has always been tough — the Great Depression, the loss of his meager business just when they were trying to educate their sons. Then his breakdown. Now this. How did it all come to pass? And the nights are bad. He calls her ‘Mom’ now, knocks on her door in the darkness, shuffles in with his walker. Are you asleep, Mom? What is it, Len? It’s the middle of the night, for God’s sake. He is sobbing, his face is wet. Please tell me who I am, he pleads. I can’t remember who I am. She does not hesitate, pulls back the covers. Lie beside me, she says. He is reticent, like a first-time lover. Are you sure? he asks. Come, she says. She moves over to one side. He pushes his walker up to the bed, turns, and sits on the edge. Are you sure? he asks again. She switches on the light, reaches for him, holds him while he falls back into the pillows, helps him straighten himself, cover himself. She cradles him in her arms. She keeps the photo albums on her bedside table. Your name is Leonard, she begins. You were born in Baltimore. The year was 1919, and you have three older sisters and two older brothers. She turns the pages. Soon every night is like this. She feels him relax into her body. Sometimes he asks if one or another of his siblings is still alive. Yes, she says, though all are long gone. Frank is living in Florida. Hilda is retired from teaching now… Good, good, he says. The story of his life unfolds page by page. Her voice, his story, spills into the tangled interstices of his mind, every cobwebbed corner. Embraced, he recalls the scent of her perfume on the letters she wrote to him all those years ago. He listens closely, anticipates with subdued breath. Up against her chest her words purr through his body, pour into his emptiness, fill him up. He falls in love all over again. Now his breathing is deep, regular. His body is still warm. Sixty years they have been together. He is asleep. For the moment, she can stop reciting his story, but she does not. She will see it through. There is no one else to help her. She knows that now. This is what love comes down to, she thinks. There is no happily ever after, but perhaps, in the end, this is what it is all about. Dr. Winakur practiced internal and geriatric medicine for 36 years, founded a hospital SNF, and taught medical ethics and humanities to medical students for 16 years. His latest book is Human Voices Wake Us (Kent State University Press, 2017). Read this and other columns at www.caringfortheages.com under “Columns.”