In youth there is little sin and I cried over the loss of innocent youth and its smooth beauty. I look in the mirror and see the tragic look of the end of life.
I have enjoyed my life but I have a nagging feeling I have not had much fun. I never slept around and got drunk; instead I read and got politicized.
I look back on my life now and see struggle and hard work sapped love of life. There is no gaiety in me now, if there ever was. I am as boring as the flat cornfields of Iowa that surrounded the little town of Eldora where I was born.
I have never been a frivolous person and I grew up believing I could change the world. Struggle, hard work, and dreams destroyed my love of life, painting, beauty, and surprise. Now I take a walk in the early misty morning dampness and I find my eyes filling with tears and grief.
Afy cats teach me patience. They wait silently for hours, knowing what they want — a pat under the chin, a morsel of food — and wait for hours until they get it. What would the world he like if humans had the same approach to their lives?
Fueled by cowboy movies, pony ride rings sprouted on vacant street corners in Arlington. They were far from dusty, disorderly Westerns. For a few coins, a child was put in the saddle and a man led the pony around a small circle a few times. It was the antithesis of the open range depicted on screen and television but childish imaginations created romance from the event.
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Eldora boldly called itself the pony capital of the world and my parents knew families with children and ponies. I made young Midwestern friendships with animals and kids. It was riding unlike what I experienced at home. I rode the little horses in large fenced areas in a way that inflamed my imagination—those moments still hold a sweet, full place in my memory.
I feel fine, I am not run down. If you saw me six years ago, I look the same today except for a few extra flecks of gray in my hair. I can talk while standing and I can run and jump rope.
I am dying as I write this. It is reality as well as a mental conceit. You are reading the thoughts of a dying man. There is nothing noble or monumental I have to share with you. I can spell the word "dying" but I do not know what it really means other than the opposite of living. I have experienced living and it has already cost me many words and I have yet to understand it fully. Death is something I have never experienced. I can write the word "death" but I cannot experience it in memory as I have done all my life with other events I experienced. The thought of dying, sitting here as night approaches on this fine November day before Thanksgiving, is strange, and somehow magnificent in its own inscrutable way.
Old habits become fresh new experiences as Aliheimer^s works its way through my brain.
^^
It has been seven months of living with the knowledge of Alzheimer's. It has done litde to my life but slow it down and add some complications. I perceive some additional loss of vocabulary. Is it dangerous when nothing seems to be happening.^ The style of the disease is slow motion. A malady of slow, writhing death, a secret
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torture in the head. Being struck down suddenly with a massive heart attack is something large and earthshaking. We who suffer slowly have little to brag about when it comes time to trade illness stories.
So it is subtleties I must watch. As my vocabulary slides away ever so slowly, I do not notice it. There was a time not long ago when it was possible to feel the length and breadth of an idea or a memory. I seem to have all the time in the world to contemplate but I cannot linger over the ideas that flash through my mind now because they are quicksilver images that disappear in a flash.
I am not old enough to retire. I cannot yet be put on the disabled list. Nevertheless my eyes are feeling the heat of hell. It has been seven months since I was diagnosed with Alzheimer's and I still have not learned to live with it. Will I ever.-^
Never have I loved my husband of 41 years more than I do
today, when he is so demolished by Alzheimer's that he cannot walk nor talk, cannot feed himself, cannot even shift his position in bed. What can he do.^ He can open his mouth when I say, "Do you want a drink?" He willingly opens his mouth when I say, "Let's brush your teeth." In fact, he even opens his mouth when he hears my voice in the hall; though he may not know I'm his wife, he does know that my presence means his favorite foods and drinks are near at hand.
Even I wonder why I can sit daily by his side as I play tapes, relate bits and pieces of news, hold his hand, tell him I love him. Yet I am content when I am with him, though I grieve for the loss of his smile, the sound of my name on his lips.
How, then, in this state of emotional bankruptcy, can I still love this man so much.'^ Yes, he's changed; but he's still my husband. He's gende; he's calm; he's—well, not coop-
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erative, as that implies too active a response. But at least he passively accepts our care and attention and help.
It is said that illness is preparation for death. Surely five and a half years of existence in a nursing home should be preparation for death. I shall do nothing to prolong the miserable existence life now holds for Larry, alone, silent, isolated from people; but, oh, I shall miss him when he is gone.
- MRS. C, LESSONS LEARNED: SHARED EXPERIENCES IN COPING, DUKE UNIVERSITY ALZHEIMER SUPPORT GROUPS
Afy brain skitters from place to place, unable to alight on a single site that will provide me with succor or balance.
As my sister, Mary Ann, outgrew her crib, it came time for her to have a room of her own. This created a new building project for my father and he picked the summer to begin remodeling the attic. A narrow stairway already provided access. I still remember him soaking with sweat, installing the new floor and sidewalls, and covering the pitch-roof ceiling with asbestos board. He built a closet in front of the stairway.
The room had windows at either end, a ceiling so low an adult had to bend slightly to walk down the center. The roof was pitched and created walls at bed level. Two beds, one for each sidewall, were purchased from an army surplus store; a piece of plywood was placed on the springs of each bed. It was my palace as a five-year-old, the most private place in the house and in my imagination I was happy.
/ am easily overwhelmed now and I am almost always on tenterhooks, ready to leap from one stone to the next in the crowded stream of consciousness.
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Writing has been part of my life for over forty years. I have done it for the pure joy it brings me and to earn my bread. The best part of writing has always been shaking hands with words every day and watching stories form as a result of the handshake. I will not part with my words easily, but have little chance in this equation so stacked against me. When I am writing, I am someone else looking at me and the world.
The tough part of writing is selling it and then watching what happens. Sometimes there are big fights; rarely is there sweetness. The worst part of the writing business is waiting for the royalty check and discovering the check's so small it is not worth banking the money.
Writing is a truly liberating experience for me and I do not want to give it up. Not yet. I will keep my day job as long as I can.
In my life, I looked everywhere for the bag of sunshine but it eluded me. Now a yellow light illuminates my dreams. The yellow is deep, the color of my vitamin E capsule. Even my dreams are being attacked by Alzheimer's.
There is a dullness in my brain now to allow me to stare into silence without an idea or thought breaking the stillness.
I loved going to work with my father. No matter how occasional these visits, they were always an adventure. The day started with my mother making the sandwiches while my father and I ate breakfast. We walked to Westover by 7:30 a.m. to catch the bus to Washington.
My father made sure I had plenty to do, most of it in the art department. He brought crayons, and a stockpile of paper was available in his office. Lunch was eaten at his desk. His big swivel chair was a great adventure. The women in the office pretended to enjoy
my visit.
After my mother died nearly a quarter-century later, Mary Ann came across the colorful crayon drawings she and I made working
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in the office. The knowledge that our parents saved this memora-biHa for later times cracked my tough exterior and brought tears to my eyes, a sign that memory keeps us close to who we are as well as who we used to be.
More than ever I want to look at life without preconceptions. I want every day to be freshly watered and new but every day is filled with memories that compete with this idea of a new hori-lonfree of the past.
I am beginning again. I am becoming again. The person I was thirty years ago was enraptured of words, real and imagined. Resily prucumbend, dilly-dolly, punk huddle. I have found the interlude wasted my memory. I am full of regrets today.
When I was six, my imaginative life was rich and filled with make-believe cowboys riding the range and intergalactic adventures in powerful airships. lam left now with dreary memories, stale words, and a life full of new mysteries.
I worked at the farm Saturday and Sunday. The day went slowly. There were not many customers for our large assortment of herbs and edible plants. It was the end of November, not a time for gardeners to be excited about planting.
I checked out a customer, something I have done for the last twenty-five years. I was operating a cash register slightly different from those with which I am familiar. I discovered I did not know which keys to hit to complete the sale. I was embarrassed, and had to call for help. We all laughed it off.
Sometimes the kidding gets close to home. It is hard for people, even those closest to me, to understand what I am going through. They all try to understand, but losing your mind happens once a lifetime and their imaginations are lacking.
I often feel I am being treated like a child. There is a good rea-
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son for it. I am becoming a child again. Nature has turned the clock around and I am now going backward in time. It is hard to live in a grown-up body and have the mind of a child. Nobody should have to know what this is like.
Eventually, my father gave up the idea of sleeping in cars and tents on our trips to Iowa, and began the search for the perfect motel as we drove halfway across the continent. Motels were a young idea then and my father became interested in owning one. It was an idea he allowed himself to encourage. The idea of quitting his steady government job to risk everything on a motel was unt^^ical talk.
The colorful presleep images that startled me when I first began taking Aricept are gone. They have been replaced with a raw sheet-metal color that reminds me of a trashcan. I still sleep well.
Dear Joyce,
When you can't hear my voice anymore, will you be able to feel my love ^
I look in the mirror every morning and I wonder how this stranger got in the house. I have watched myself over the years, studying the effect of sun on skin but I have no idea how I really look to someone who stares into my face and watches my eyes. Will I meet a stranger on the wandering street one day and shake hands with myself?
I have shared society's fear of rats most of my life, but recently I have been inoculated with new wonder at one of nature's most ubiquitous rodents. My wavering at the unthinking hate carried for rats by the human race occurred one morning as I watched the fresh sun sparkle on the fish pools outside my window. I was nearly hypnotized by the simple spectacle nature provided in my backyard
THOMAS DeBAGGIO
when out of the corner of my eye I saw something move. I fastened on the moving object and recognized a large gray rat at the far end of what we call the lower pool. The rat danced along the edge of the pool, darting its head into the water quickly several times, and then fled to the cover of the stone wall where it disappeared. A few moments later, the same act was repeated. His fright and hunger were palpable. I soon realized he was sharing the fish food I scattered on the water five minutes earlier. To my horror, I realized I had established a rat hotel and the dining room was now open.
Why did I feel revulsion at the rat, while I love dogs and cats, all equally human companions and scavengers.'^ We have made cults of birds, equal in scavenging and carrying diseases. Do we not have a long history ourselves of carrying deadly diseases around the world.'' Humans crave intimacy and it is easily had with dogs, cats, birds, and fish. But a cantankerous rat, carrying the weight of centuries of hate and misunderstanding, becomes a target of fear. This is a fear we carry with us and perhaps it is now part of our genetic code.
What we do not understand, wild animal or human, we fear with murderous hate and it has shaken great nations and small, and laid them waste. A disease like Alzheimer's has the same power to destroy as a bullet or a scourge, through fear and misunderstanding. Death is a natural by-product of life and we should not fear it; we must accept it whether we call it a disease or the end of life. Now every morning I throw extra fish pellets into the lower pool for the rat.
Recent research suggests the tendency for Alzheimer's patients to get lost may relate to changes in the areas of the brain that interpret vision. Specifically, researchers are interested in visuospatial orientation, or how well people can perceive and interpret stimuli when they are in motion. Your ability to interpret such stimuli enables you to find your way around—for example, to follow directions or re-
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member where you have been based on the sights you've seen. In the most recent study, investigators examined a concept called optic flow, which is the patterns of motion people see when they are moving through space. The parietal and occipital lobes of the brain process optic flow in two pathways that help orient you. You see all movement in relation to yourself by how fast they appear to be moving as you move; objects that are closer to you seem to move faster.
Researchers used computer images of moving patterns to test optic flow in ii Alzheimer's, 12 older nondemented individuals and 6 younger nondemented individuals. They were asked, for example, to identify whether patterns of dots on the computer were moving to the left or right in one test; in another they had to identify whether the dots on the screen formed a circle or square. The Alzheimer's patients performed significantly worse on those tests than both the younger and older nondemented individuals. Spatial navigation abilities were tested directly by taking each subject on a prescribed walk and then asking them questions about the layout of the path, the directions they turned, and landmarks. Alzheimer's patients averaged only 42 percent correct responses, compared to 83 percent and 75 correct, respectively, for younger and older nondemented subjects. Moreover, poor scores on the tests of optic flow correlated with poor scores on the spatial navigation test.
That Alzheimer's affects vision and visual processing is a relatively new line of research that could have implications in the broader understanding of the disease, as well as for diagnosis and treatment. For example, it appears that abnormalities in the parietal-occipital regions of the brain cause the visual impairment. Further investigation could reveal patterns of such brain activity more fully, as well as suggest ways to prevent patients from getting lost. And, if it is an
lOI
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early symptom of Alzheimer's, identifying visuospatial disorientation might prove useful in diagnosis of the disease.
- THE JOHNS HOPKINS WHITE PAPERS, 2000
I have been pondering what to do with some of my favorite things when the day arrives I can no longer use them or wonder at their beauty. I have decided to give away things I have lived with that provided me pleasure. This morning I have been looking at my collection of handmade bamboo fishing rods. I still have time to fish but for me the tackle means little. I always looked upon fishing as a sport full of lies. Not the usual lies about the number of fish or their size, but the reason for going. Going fishing has always meant getting away to some solitary place where you can be with yourself and study what being alone means. The fishing paraphernalia is camouflage for the search to find dee
per meaning in life and nature.
At some point, I will no longer experience the pain of watching my mind deteriorate to a point of incomprehension. Then the loved ones around me will have the unwelcome task to look after me and shelter me from harm. My burden is slight compared to that of the truly living.
The television broadcaster started by talking about America's preparation for future wars, and just as suddenly, I recognized one of the unspoken changes in my century, the twentieth. In the early years, there was no preparation for war—there was no Pentagon, no covey of generals waiting to lead their men into battle. Now the United States is the largest vendor of military equipment and death in the world.
*;.-.
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Trash days were treasure hunts in my neighborhood. In the summer I prowled the early-morning streets for cast-off nuggets my imagination turned to gold. Scavenging became a way of life for many of the kids in the neighborhood, much to the chagrin of parents.
One summer morning, I checked the trash as I walked up Nicholas Street. On the curb near the top of the long hill was an assortment of fine stuff put out for the trash man. The prize was a heavy, wooden-sided slot machine complete with a heavy metal handle. As I struggled to get it home, dreams of becoming rich ran through my head. At home, in my roomy attic hideaway, I inspected my fantasy. It was not quite the slot machine I observed at the Country Club in Eldora. This version was much older. Rather than a machine of chance, this was an antique candy dispenser built in the guise of a slot machine. Like its risky relative, the coin was inserted in a slot and a lever pulled, and colorful cylinders spun. Candy, not money, was the treasure to be dispensed. Unfortunately, that part of the machine was unworkable.
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