FEATURES • Fall 2002

When Burton M. Wheeler began writing about his experiences of taking care of his wife, Jackie, who was diagnosed with "Alzheimer's-type dementia" in 1994, he thought the process would be cathartic. He thought it would be a way of distancing himself from the exhaustion, fears, frustrations, and pain of caregiving. Encouraged to publish his story, Wheeler shares his experiences in Close to Me, but Far Away (University of Missouri Press, 2001). He hopes his written testimony will provide understanding, and possibly comfort, to those who are caregivers or friends of caregivers. In the following excerpt, Wheeler, professor emeritus of English and religious studies in Arts & Sciences, provides an account from which we all can learn.

By Burton M. Wheeler

The telephone's insistent ring destroyed the silence. As we sit together at the table in the mornings, I sometimes have the sense that I am being bathed gently by silence. Our apartment is on the tenth floor. Because the windows are thermal, not even the sound of trucks or automobiles from the street below reaches us. Occasionally the harsh, throbbing beat of a traffic helicopter or the wail of a siren intrudes, but normally silence prevails, a silence that I cherish—sometimes.

Silence is a strange phenomenon, isn't it? It can bring inner stillness, even joy. It can also intimidate to the point where I want to scream just to break its bonds. For me, I think the difference lies in whether I have a perception of sharing or one of acute loneliness.

The absence of intrusive sound this morning reminds me of our vacations in Colorado where we own a few acres, a bunkhouse, and several tents. We haven't been there now in six years and may never go again. Could I stand being there without Kee?

At nine thousand feet, isolated from the incessant demands of our work, we found solitude, not loneliness: the satisfying sense of being alone together and in harmony. Birdcalls blended into the setting unobtrusively—even if it was the harsh cry of a western jay or a Clark's nutcracker. Chipmunks raced about noiselessly or sat observing us, the intruders, from rock outcroppings. The occasional Golden Eagle or Red-Shouldered Hawk circled silently above us. Hummingbirds darted about, the whirr of their wings accentuating the silence. A jetliner might pass, leaving its trail in the sky, but at so high an altitude we would not hear it. Such silence had a creative, healing element to it. Silence, solitude—but that of our own choice.

Why does silence sometimes intimidate? I haven't quite worked that out. It's not entirely a matter of being physically alone, but it is related to some condition of not sharing. The sharing may be with a person or with a landscape or a crowd. But persons, landscapes, and crowds can also frighten and turn the solitude into something approaching terror. So it's more, or less, than that.

This morning I sit with Kee peacefully, sharing time and place with her. Yet at other times, when we are also sharing time and place in silence, I feel the terrifying loneliness. Maybe it depends on orientation, on whether I feel I have a sense of direction.

I once described to a friend the experience of living with AD by saying that it's like being dropped into the Everglades on a cloudy night without flashlight or compass. The darkness smothers and the imagination breeds terror. You know you must keep moving but have no idea which direction is least dangerous. I know that sounds overly dramatic. Perhaps I concocted it as a plea for pity—pity that I would have resented had it been offered. In fact I've never succeeded in measuring the dosage of pity I need, but it's an unwanted addiction. My craving for pity is fully matched by my resentment of it.

Being stranded, feeling alone, is not the same thing as solitude, which I think of as a sense of joy in separateness, of fully recognizing that one is alone, even reveling in the certainty of being alone, but at the same time not feeling alone. I knew such solitude often with Kee, but rarely in the presence of others. More frequently I've known this positive solitude when I was by myself—on a shore when a storm whipped the surf to frenzy or in the mountains when consciousness of seeing dissolved because I was enfolded in beauty. I've also known that joy of solitude in a cathedral when the organ completed a coda which seemed to drift slowly into eternity. In such solitude the prevailing sense is one of awe, a breathless adoration before being, a profound contentment with is-ness. Sadly, such moments are all too rare—but I've at least experienced them. And I am thankful that Kee and I have known them together, but that was before Alzheimer's intruded with shattering force.

This morning just being in Kee's presence is satisfying. At other times I feel all too acutely the isolation and loneliness because she is present but not present. Then the silence terrifies, producing panic. I first knew that silence when, at thirty-nine, she was diagnosed as having renal carcinoma, and I sat paralyzed by her bed in the hospital. Although the diagnosis was reversed a few days later, I won't forget that time. There must have been normal hospital sounds around me, but I heard nothing but the throbbing of my own heart and felt nothing but my own silent agony. How could I manage without her? How could I ever give the children what she gave them?

During Kee's long ordeal with Alzheimer's disease, I have had a similar feeling arising not from the potential of her loss but from its present reality. Let me relate a particular incident that may help explain what I mean.

I woke up one morning with pain in my left arm and began to fear heart trouble although I've had no serious heart anomalies. I called my doctor's office, described my symptoms, and was given an appointment for the next day. The following morning, as I bathed before going to the appointment, I discovered a few red blotches on my left arm. The doctor took one look and said "Shingles." I had heard about shingles but thought of the ailment as something that afflicted only people with serious neuroses and stupidly considered myself immune. The doctor explained that reaction to herpes zoster, the same virus that causes chicken pox, may be stress related.

By nightfall my elbow and wrist were throbbing. By the following morning my left arm was covered with blisters. The pain moved into my hand and shoulder. The pain was so intense that I could not sleep even with sleeping pills. My elbow and wrist felt like they were imploding. The medication given for the herpes seemed to have no effect, nor did it for the three weeks I was allowed to take it. For the first time in my life I asked for stronger pain killers and sleeping pills. In addition I swallowed handfuls of ibuprofen and still hurt. In spite of physical therapy and continuing medication, the pain continued. For more than five months I was submitted to MRI's and electronic testing of nerves. By the third month I was desperate. I wanted help of any kind from any source. My doctor asked me if I felt depressed. The question struck me as stupid. Of course I was depressed. Couldn't he see that? Then I realized that it was the first time I had ever admitted to myself that I was genuinely depressed, not just having a bad day. I began taking an antidepressant that same day.

One evening, following supper, Kee and I settled down before the television. At that time she could walk and, even if she didn't watch the screen, at least sat with me. I have no idea what we were watching. I only remember that I began to cry—not for a fictitious character in a melodrama, not for Kee, but for myself. The neat world I had constructed was splintering. Financial plans made on the assumption of my continuing good health now seemed folly, and, above all, I was hurting. I tried to tell Kee of my pain and fears. She could not understand. Against every intention, I found myself sobbing, "If I can't maintain my health, I'll have to place you in a nursing home." I had never, never meant to threaten her. To my surprise she was not disturbed. What I said was meaningless to her. Nor could she remember that I was hurting. If I said, "My wrist feels like there's a bonfire in it," she would respond sweetly, "I'm sorry," and mean it, but within minutes she would have no recollection either of my pain or her response.

The following morning after a fitful night half spent roaming the apartment, I was still immersed in pain and bedeviled by fears. Thinking her more lucid in the early morning, I tried yet again to communicate. "Do you understand why I was crying last night?" Pausing for a moment as if trying to recall, she said quite simply and accurately, "No, I don't." I cried again, my body shaking with frustration and hopelessness.

That is the terrifying silence of Alzheimer's—a silence arising from the noise of voices not communicating. It produces a sense of utter isolation because the person present, one with whom for years sharing was the essential fabric of life, is simply not there.

"I will never experience such silences again because I have lost the one who knew how to spin the web of golden silence. Henceforth there will be silence, but it will be the silence of isolation and loneliness."

We experienced so many productive silences together. I was always the one given to chatter, as though fearful of the still moment. She was quieter, more aware of the communication that can occur in stillness. Fifteen years before the diagnosis of her dementia, we moved into a large home with an outdoor patio in a quiet section of the city. Except in winter, we ate our evening meal on the patio, lingering there over coffee or wine until well into the darkness, sharing the events of our days sometimes, but often allowing the silence to work its own magic.

Enough light came from neighboring yards and distant street lamps to give all the illumination we needed, although sometimes we lit candles or an old-fashioned kerosene lantern for "atmosphere." One night, as the darkness deepened and we sat in pleasant silence, a neighbor turned on a garage light and I became aware of something not previously noticed, something new. Between the eaves of our back porch and the corner of the patio wall, a spider had spun an enormous web, a web perhaps as much as three feet in diameter. The light from the neighbor's garage converted it into a shimmering work of art. Without a word, I pointed to it and Kee turned to see. For some time, we were quiet until at last she said, "That is so beautiful." Then I began to babble about how large a spider was required to spin a web of such size, to speculate on the kind of spider, to wonder how long it could withstand wind and rain, to note that the design was adapted to the need of the spider to work between two surfaces. The moment of beauty lay in the silence between our first discovery of its existence and my rattling on about minutiae. The silence honored the beauty of this work of nature far more than my enthusiastic babble. But we both knew that the beauty was enhanced by our seeing it together.

There were also the campfires each summer when we took our children into national forests and later, with the children encumbered by the responsibilities of their own lives, when we camped on our land in Colorado. The fires were prepared during daylight hours, then lit as the sky darkened. For two or three hours we watched the progression of the fire as it blazed up at the beginning, consuming the wood greedily, then settled into a low, flickering, domesticated fire, then collapsed into itself, turning into glowing embers which brightened as the wind whispered or I stirred the coals with a stick.

Foremost of the silences I recall is our lying contented in one another's arms after sharing love—when words and lust are spent and the silence of certainty prevails. That, I think, must be the true secret of the biblical phrase "he went in unto her and knew her."

I will never experience such silences again because I have lost the one who knew how to spin the web of golden silence. Henceforth there will be silence, but it will be the silence of isolation and loneliness.

Excerpted from Close to Me, but Far Away by Burton M. Wheeler, published by the University of Missouri Press in 2001. For further information, please call (800) 828-1894.

Photos courtesy of Burt Wheeler







Professor Emeritus Burt Wheeler cares for his wife, Jackie, at their St. Louis home.









































Professor Emeritus Burt Wheeler and his wife, Jackie, have shared more than 50 years together: above, they are with their first child, Paul, in 1953.
























Visiting Jackie's hometown in Walhalla, South Carolina, in 1951.































Dancing at their daughter Kristin's wedding in 1990.



































Pausing during a trip to England in 1992—about the time of the onset of Jackie's illness.