Losing My Mind: An Intimate Look at Life with Alzheimer's

ALSO BY THOMAS DEBAGGIO

Growing Herbs from Seed, Cutting and Root

Basil: An Herb Lover's Guide

(with Susan Belsinger)

The Big Book of Herbs

(with Arthur O. Tucker)

THE FREE PRESS

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New York, New York 10020

Copyright © 2000 by Thomas DeBaggio

The Little Red Wagon by William Carlos Williams, from Collected Poems: 1909-1939, Volume I,

copyright © 1938 by New Directions Publishing Corp.

Reprinted by permission of New Directions Publishing Corp.

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ISBN-10: 0-7432-1672-5

ISBN-13: 978-0-7432-1672-2

To my wife, Joyce, may she always remember our good days.

And to my son, Francesco, who made every day worth remembering.

And in memory of Connie and Carl who made me, and left too soon.

Thanks for the time of my life.

Acknowledgments

MANY FRIENDS HELPED WITH THE PROJECT,as they have in the past, and again I owe them much.

Joyce and Francesco spent many patient hours listening to me tell stories and share frustrations, and they helped guide me in this endeavor. Their story is hidden in the corners of almost every page of this book. Without their patience, help, and love this book could not have been written.

Tammy Boggs, Rick Tagg, Dottie Jacobsen, and Tina Zaras, wonderful friends, watched my battle and helped me in many varied ways, some unknown to them. Rob Lively, a friend of longstanding, lent more than moral support.

My sister, Mary Ann Lovett, opened her heart and helped me remember her role in my growing up, while my cousins Suzanne and John Cain called regularly from the West Coast to remind me of events when we were together in Eldora, and to cheer me. My longtime friend Rob Hurwitt made suggestions on the finished manuscript and helped reduce typos.

Pete Dawson, our family's ribald historian, traced evidence of Alzheimer's in the DeBiaggio family and provided levity. His family chronicle of the Dapalonia and DeBiaggio families provided some useful background that was outside my memory.

My good friends Susan Belsinger in Maryland and Carolyn Dille in California kept my spirits high with frequent telephone calls.

Linda Ligon of Interweave Press, a friend of many years, encouraged my writing over the years, often in the best way, with money for work published in her magazines and books, and she prodded me to keep going during these tough times.

Noah Adams was helpful in many ways.

I am indebted to Dr. Colleen Blanchfield, a neurologist with a large heart for her patients and a sensitivity for their humanity. She is an honor to her profession.

I am particularly indebted to Jonathan Lazear and Christi Cardenas for their help and their enthusiasm for my writing.

My profound thanks to those men and women, and mice, around the world who work to understand Alzheimer's and bring its awful nightmares to an end.

Author's Note

THIS IS A BOOK BALANCED BETWEENthe wonder of childhood and the tottering age of memory. I used an unconventional multilayered style in this book to illustrate memory's many faults and strengths. It is an attempt to show the parameters of long-and short-term memory and how Alzheimer's works to destroy the present and the past. To do this I set up three narrative lines.

In my notes, I call the first narrative the Baby Book. It deals with long-term memory from my first awareness through the early 1970s.

A second narrative intersects the first, relating stories of humiliation and loss. It contains rough details of my tangle with Alzheimer's. This narrative represents a mind-clogged, uncertain present. It is filled with memory lapses and language dificulties and the sudden barks of disappointment and loss.

A third stream is filled with recent Alzheimer's research. All this is mixed together, as it is in the brain, and follows a pattern of its own.

Memory is hunger.

ERNEST HEMINGWAY IN A MOVEABLE FEAST

I am going to tell the story of my life

in an alphabet of ashes.

BLAS DEOTERO IN TWENTY POEMS

THAT JANUARY, MY FIFTY-SEVENTH BIRTHDAY, was pleasant and eventful and I began to adjust to middle age. I no longer noticed how small facial lines became wrinkles. I was active and happy. My son Francesco, home from California, joined Joyce and me in the family herb-growing business in Virginia. I was equipped with a thin body free of aches and pains. I looked forward to a life to rival my Midwestern grandmother's 104 years. I was buoyant and displayed, occasionally, the unbecoming arrogance of youth.

Then came a beautiful spring day later that year. It was the day after the tests were finished and the results reviewed. It was the day I was diagnosed with Alzheimer's. What time had hidden was now revealed. Genetic secrets, locked inside before my birth, were now in the open. I became a new member in the parade of horror created by Alzheimer's.

At first I viewed the diagnosis as a death sentence. Tears welled up in my eyes uncontrollably; spasms of depression grabbed me by the throat. I was nearer to death than I anticipated. A few days later I realized good might come of this. After forty years of pussyfooting with words, I finally had a story of hell to tell.

My parents grew up in an orderly, gentle time, or so they remembered it. Their epoch was also full of dirty secrets, enslavement, lynching, and two murderous convulsive world wars. It was a time to need luck. They escaped the influenza epidemic of 1918 and made it through the Great Depression of the thirties when food and jobs were scarce. Luck was with them in small Iowa towns named Eldora and Colfax.

Instead of focusing on the explosive reality of their time, they created a happier personal interval of their own imagining. This in turn created a great optimism in me and a gentle narrative of childhood tranquility. Soon I was scared and uplifted, as were they, by the time of my time, a world of conflagration, disorder, hope, ugliness, great beauty, and unnecessary death. Yet the imaginative world of kindness and promise they passed to me always remained untouched by the ugliness of congested cities, immoral wars, and encompassing greed.

Here I am at the moment of truth and all I can muster are hot screams and scribbled graffiti torn from my soul. Moments of slithering memory now define my life.

After a short, mild winter, a vivid spring settled around us. The weather was tame and herbs filled a sunny patch next to the greenhouse. They were strong and vigorous now, especially the rosemaries, the thymes, the lavenders. Their scents perfumed the air when I brushed by them.

The sun warmed the earth steadily and it was possible to spade and plant a kitchen garden with early seed crops of succulent lettuce to sweeten and color our meals. It was a spring in which you could be happy and a little carefree. There was much the earth had to say and you could hear it if you stayed quiet and listened intently.

There was something else that spring and it was unnamable. As with all unknowns, it was unsettling and had nothing to do with the weather. It was not something that gentle rains, bright sunny days, and an optimistic outlook would cure. It was an anonymous presence, yet I could feel its uneasy cadence. My memory, which had been a sacred touchstone, was failing long before I expected. I was losing the ability to remember things important to me. I had difficulty recognizing the names of many of my plants, and even friends I saw infrequently. I was fifty-seven this year, and not eager to acknowledge that now I might be tied to a teetering mind that had begun a slow descent into silence.

A time or two I complained out loud that I could not remember things that the year before had been brightly colored and detailed. I brushed off those incidents as forgetfulness due to stress, and there was stress aplenty, as there had been always. Stress and worry were steady partners in my backyard farming, just as it was for the farmer in the great, flat Midwest with hundreds of acres of rich, black earth.

I made a living in my backyard for twenty-four years, growing and selling as many as 100,000 herb and vegetable plants from my greenhouse each spring. The entire operation, situated on a 5,000-square-foot lot, contained our family home and a 1,600- square-foot greenhouse. It marked me as a new breed of urban farmer who scorned grass and its wasteful, demanding cultivation. I made a living off the land by selling directly to gardeners the potted plants I started from seeds and rooted cuttings and grew carefully in the greenhouse.

It had always been tough outwitting nature. It was a struggle the mind and body accepted willingly by turning work into games. It was serious and enjoyable play for me, but it was also my livelihood. My family depended on my ability to tame nature and use my guileless skills to attract customers. From the beginning, my tangle with urban farming was a test of my strength and acumen against nature's unpredictability.

I was completing a doctor visit, a regimen that was new and uncertain to me, when my physician asked, Is there anything you want to tell me? He is a thoughtful, no-nonsense man with a sly sense of humor, and the question may have been the kind of thing he often says as he winds up a session with a patient.

Yes, there is, I said. He said nothing and waited for my words. I am having trouble remembering things that are basic to my work, things I have known and now can't remember.

There was silence while he looked at me. I can give you a referral, he said quickly, careful not to confuse or cheapen my predicament with some offhand remark. And I will have the nurse take additional blood samples for the doctor I am sending you to.

I made an appointment to have the blood drawn the next day at the clinic. After I dressed, one of the doctor's assistants gave me a piece of paper with another physician's name, address, and telephone number. I had never seen the name before and it meant nothing to me, but the address was a prestigious university hospital. The first four of many vials of blood yet to be drawn were taken the next day.

Alzheimer's disease was named nearly 100 years ago for Alois Alzheimer, a German who first described the grisly effects of the disease. To gather his knowledge, he cut away the tops of several skulls from people who died of a mind-destroying malady, leaving them helpless, speechless, and as useless as a year-old carrot. He was probably the first to see inside a diseased brain and view the signature features of Alzheimer's, the sticky amyloid plaques and the twisted, hair-like threads of the neurofibrillary tangles. Alzheimer's method of diagnosis after death remains the only way to be absolutely certain of the disease even today. As a result, questions often remain about a diagnosis, a condition that eager charlatans use to their advantage.

In a test of my memory and ability to learn new things, I came out severely impaired according to my neuropsychological evaluation. Doctors say I am at the beginning of the disease's onslaught.

For a guy hardly sick in his life, this is a large, corrosive event. I am not alone. In a few years nearly half of those who reach eighty years old will have the disease, according to the Alzheimer's Association. I am not so lucky in another way. The disease is known to strike as early as thirty, but only a tiny minority falls in its clutches before the mid-sixties. At fifty-seven the disease has been active in me for longer than I know.

Instead of bringing this disease into sunshine where we can learn about it and do something, it has been too often hidden and misunderstood, closeted to protect the living from its frightening consequences. Alzheimer's does not have the drama of a heart attack or the thud of an automobile wreck.

Our understanding of the disease has been, until recently, held hostage by lack of knowledge. Now we know it was not undefined evil, profligate activity, or witchcraft causing the strange behavior created by the disease. We are close to understanding mechanisms triggering this ghostly malady. The disease, or its potential, appears to rest secretly inside us until its evil time arises and a languid torture begins. This is a disease probably not caused by something you did to your body. It is, most likely, a consequence of bad luck, subtle effects activated in the brain, and parents who carried corrupted genes.

The disease works slowly, destroying the mind, stealing life in a tedious, silent dance of death. Slowly the memory is impaired, and then you wander in a world without certainty and names. Yesterdays disappear, except those long ago. Eventually there is a descent into silence and a dependence on caretakers. Hands other than yours feed and bathe you. A cipher takes your place amid the tubes and tragedy. By the end, Alzheimer's leaves its victims silent, quivering in their flesh, awaiting the last rites. Some common illness often takes credit on the death certificate.

I am alone and I can hear water running somewhere in the house. I don't remember going to the bathroom. Who else turned on the water?

This is an unfinished story of a man dying in slow motion. It is filled with graffiti, sorrow, frustration, and short bursts of anger. While the narrator suffers his internal spears, he tries to surround himself with memories in a wan attempt to make sense of his life and give meaning to its shallow substance before he expires. Although incomplete, the story is full of sadness and missed opportunity, a lonely tale of the human condition. Behind it is hope, the tortured luck of a last chance.

My Midwestern mother and father conducted a torrid romance, according to cousin Pete. Every time my father returned to college after a holiday in Eldora, he sought a confessional priest, Pete remembers.

The secret transformation of my mother into a Catholic must have shocked my Lutheran grandmother, but she remained loyal to her daughter. My father became a lawyer, my mother a teacher.

Books set imaginations on fire in earlier times, and they continue to inspire and inform, but television and movies replaced much of the storytelling for my generation and left us hungry and naked, shivering for substance.

______

Alzheimer's disease is an irreversible, progressive brain disorder that occurs gradually and results in memory loss, unusual behavior, personality changes, and a decline in thinking abilities. These losses are related to the death of brain cells and the breakdown of the connections between them. The course of the disease varies from person to person, as does the rate of decline. On average, Alzheimer's patients live for 8 to 10 years after they are diagnosed; however, the disease can last for up to 20 years.

– PROGRESS REPORT ON ALZHEIMER'S DISEASE,

NATIONAL INSTITUTE ON AGING, 1999

______

This may be my last chance to dream.

The inspiration for this book appeared a few days after I was diagnosed with Alzheimer's. It was to be a word picture of the outside and inside, present and past, of a man's naked struggle with the unknown on his way to trembling silence and unexplainable torment without the torturer. It was a story of unleashed anger and beauty brought forth by an unseen illness, incurable and relatively long-term in duration. I knew I was unable to write about all stages of Alzheimer's because the disease causes cognitive decline and I will lapse into a world without language and memory.

With any untreatable, disabling malady, victims become sensitized to every movement of their body, every breath, searching for change and studying the course of the illness until it threatens to destroy friendships and the love of those around them. Writing about it may be a way to legitimize my almost continuous contemplation of the subject, and I hope it will allow me to leave thoughts of the disease locked up in the computer while I conduct everyday affairs.

It is my intention to stay in the open with no secrets. I will hide nothing, not even the inevitable self-absorption typical of such a disease. To retreat from my lonely internal immersion with myself and the disease, I started a diary that has become this book, as unique perhaps as the disease itself.

Sweet memory, the unreliable handmaiden of the past.

I was born in a wicked midwinter Iowa snowstorm and my father, proud and happy after the delivery, took the news to his parents in their little restaurant a few steps from the hospital in Eldora, Iowa. I was taken home to a small white house where many of my parents' friends arrived with good wishes and grand hopes for the future.

Much news was made of the possible link between aluminum and Alzheimer's when larger than expected amounts of the metal were discovered in the brains of some people who died of Alzheimer's. Worried that aluminum might somehow promote the disease, many people began to throw away cans, cookware, cosmetics, antacids, deodorants, and other items containing the metal. However, studies of people exposed to large quantities of aluminum revealed no increased incidence of dementia. Most likely, the deposition of aluminum in brain tissue is a result—not a cause—of the factors that underlie the dementia. (Incidentally, more aluminum leaches into soft drinks from glass bottles than from aluminum cans, which are coated with a fine veneer of plastic.)

– THE JOHNS HOPKINS WHITE PAPERS, MEMORY, 1999

______

I am back from the drugstore with my packet of pills, prescription number 736631 from the CVS pharmacy, four blocks up the street. The pills have in them a pharmaceutical called Aricept, the trade name for donepezil HCl, the commonly prescribed medication for Alzheimer's at the time. The doctor told me the most common side effect is diarrhea. Boy, was he right.

I don't know whether to love these little round things or hate them. The pills are tiny and buff colored and on one side a .. is stamped into it to designate it as a 10-milligram tablet and on the opposite side is the word Aricept. I started taking half of one of the tablets at bedtime. After five days, I was directed to take an entire tablet when I go to bed (later I began taking a second tablet before breakfast). Aricept was the second pharmaceutical developed for Alzheimer's and is now the most widely used medicine available, but at its best it can slow the destruction of brain cells temporarily.

The doctor also prescribed two over-the-counter medications to take daily: two vitamin E soft gels, each 1,000 international units, about 6,666 times more than the normally recommended dose, and a single Ibuprofen tablet. This combination of drug and vitamins is all medical science can do for me nearly 100 years after Alzheimer's was scientifically described. It seems a weak armada to defend against eager memory destroyers working in my brain. I am a citizen of a country that has sent mankind to the moon. It is sadly ironic but that is all medical science can do, when we spend billions to send men into outer space to look at rocks.

I am happy today. I realized this was not yet a posthumous tale.

______

The brain does many things to ensure our survival. It integrates, regulates, initiates, and controls functions in the whole body, with the help of motor and sensory nerves outside of the brain and spinal cord. The brain governs thinking, personality, mood, and the senses. We can speak, move, and remember because of complex chemical processes that take place in our