The worst diagnosis

An intellectual couple facing Alzheimer's finds great love and tenderness.


Michael CastlemanDolores Gallagher-ThompsonPh.D.Matthew Naythons
February 1, 2000 10:00PM (UTC)

The absentminded professor. That's how Ann Davidson often thought of her husband, Julian. A handsome, quick-witted man with roots in Scotland, Julian spent virtually his entire career as a professor of physiology at Stanford University. He looked the part of the academic, with rumpled casual clothes, wire-rimmed glasses, an ambling gait, a graying beard, receding curly gray hair, a deep love of classical music, and an air of perpetual preoccupation as he pedaled his bike daily from their large, comfortable ranch home on the prestigious campus to his office and back.

During their 37 years of marriage, Ann and Julian raised three children. Ann trained as a speech pathologist and worked part-time while their children were growing up. The children went off to college, and later their daughter produced three grandchildren.

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Over the decades, Ann adjusted to her husband's workaholic preoccupation with his career, admiring his intellect and fretting with him over his lectures, grant applications, journal articles, committee responsibilities, and the vagaries of academic politics. Of course, she got annoyed when she realized, too frequently, that Julian was not giving her his undivided attention. She did not like to repeat herself or say, "Julian, listen," because he was off in some physiological reverie instead of focusing on her. He was the classic absent-minded professor. Ann was forever reminding him not to forget his briefcase, or his keys, or his brothers' birthdays, or the dinner or concert date they had in the evening.

Yet their love was deep and enduring, their marriage strong, and when her moments of irritation over Julian's daydreaming passed, Ann understood that one of the things that endeared him to her was his ability to live in his imagination, and to revel in the life of the mind.

In 1986, when he was 54, things started to change for Julian. "I didn't see it at first," Ann recalls, "and certainly no one else had any inkling, but Julian was convinced that he had memory problems, and he became concerned." For 20 years, Julian had no problem delivering lectures to Stanford medical and graduate students from brief notes. Then one day he found they were no longer enough. He began outlining his lectures more thoroughly, and by the late 1980s, he felt he had to write them out and read them word for word. Julian also found it increasingly difficult to write scientific papers and grant applications. When colleagues broached new ideas, he had trouble absorbing them and giving cogent feedback. "What you hear at many Alzheimer's workshops," Ann says, "is that in the early stages, those with the disease typically deny that they have memory problems. That happens with a lot of people, but not everyone. Julian was the first to realize that something was wrong."

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For three years, with rising apprehension and anxiety, Julian complained to Ann about his memory. At first, she chalked it up to chronic career stress, but after a while she noticed that her absent-minded husband seemed increasingly scattered. Still, it didn't concern her too much. "He misplaced things a little more, but that was completely in character. He'd always lost things. So he did it a little more. So what?"

Despite Ann's efforts to comfort and reassure him, Julian insisted that something was really wrong with him, and, true to his training, he began seeking answers as a scientist would, in an organized, systematic fashion. He consulted his family doctor, who did not suspect Alzheimer's because Julian was not yet 60 and the disease is rare in people under 65. But Julian was clearly anxious, so his doctor sent him to a psychologist.

Julian had good reason to be anxious. Both of his older brothers had died a few years earlier at age 59, one from Hodgkin's disease, the other from complications of coronary bypass surgery. Julian took this information to his doctor, who prescribed anti-anxiety medication along with counseling from a psychotherapist. His memory problem did not improve.

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Then, Julian began using words incorrectly, often saying the opposite of what he meant. He'd mean "up" and say "down," mean "increase" and say "decrease." Ann noticed but didn't take her husband's lapses too seriously. "Who hasn't said 'left' when they meant 'right'?" But Julian's Stanford colleagues were not quite so generous. Science demands precision, and Julian's increasingly frequent errors irritated them and frustrated his students, which only increased his anxiety and growing sense of apprehension and shame.

In early 1989, Julian began forgetting appointments with Ann. "We'd have a date to meet for lunch, and he wouldn't show up, or he would agree to pick me up at a certain time and place, and then leave me hanging." Alzheimer's disease was still the farthest thing from Ann's mind. Julian was so young. No one in either of their families had ever had it, and Julian still functioned more or less competently -- a far cry from the picture Ann had of the disease. Ann didn't think her husband was ill. On the contrary, he was the picture of health. She figured he was being rude or uncaring. "I was furious with him for much of the year before his diagnosis," Ann admits. Ann's anger made her less sympathetic to Julian's growing plight, and it made him feel even more anxious and ashamed.

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Maybe the psychologist was right, Julian thought. Maybe anxiety was his underlying problem. But as the months passed, he became convinced that, independent of any anxiety or depression, his memory was going. He asked a Stanford colleague, a neuropsychologist who did memory research, to evaluate him. "His short-term memory was a bit deficient," Ann recalls, "but still in the normal range. Julian felt reassured. His memory trouble seemed to be caused by anxiety, which was the result of stress."

Then in early 1990, Julian was invited to present his latest research at a conference in Acapulco, after which he and Ann planned to tour the Yucatan for a week. "It was a disaster," Ann sighs. Julian was frantic about his lecture. By this time, notes were out of the question. He wrote his lecture word for word and carefully packed it and his slides into his briefcase. Then at the Acapulco airport, he lost the briefcase. "He panicked," Ann recalls. "It was all I could do to calm him down enough to search the airport." Eventually, Ann found the briefcase.

Julian's troubles continued. At his presentation, he mixed up his slides and answered several questions inappropriately, which elicited quizzical looks from the audience. Afterward, he forgot to pay the hotel bill, and as they drove away, the hotel's security people chased after them.

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In the Yucatan, things went from bad to worse. "Julian couldn't read maps," Ann recalls. "He got lost repeatedly. He couldn't deal with Mexican currency. He couldn't find our room in several hotels."

The low point occurred in Palenque, at a hotel near some Mayan ruins. After a day of hiking around the ruins, they returned to their small room, with its one dresser. Ann put their green daypack on top of it.

"Where's my wallet?" Julian asked Ann.

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"In the daypack," she replied. Julian did not understand.

"Where's my wallet?" he repeated.

"In the pack," Ann reiterated, annoyed. Again, no reaction.

"Where is my damn wallet" Julian demanded, exasperated, anxiously scanning the room and either not understanding the word "pack" or not seeing it in front of him.

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Ann recalls experiencing "a horrible sinking feeling." This was not the husband she knew.

"But when we returned home," Ann recalls, "he got better. I've heard many similar stories. People with very early Alzheimer's can function reasonably well on familiar turf, but take them anywhere new, and they fall apart. They can't learn like they used to, so they can't cope with unfamiliar surroundings."

However, by the summer of 1990, as the problems continued, Ann was convinced that Julian's difficulties went beyond anxiety and rudeness. She encouraged him to return to his Stanford colleague, the memory expert. Julian went in for testing one morning. That afternoon, the memory expert called Ann and said, "Julian needs a neurological evaluation."

"Why?" Ann asked.

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The memory expert didn't answer. He just said, "Please, make the appointment."

Ann accompanied Julian to his neurological exam. In the afternoon, while Julian was still being tested, his neurologist emerged from the examination area and motioned for Ann to follow her. They wound up in the photocopying room. The neurologist said, "I wanted you to know before we meet with Julian. He has progressive dementia, probably Alzheimer's."

The diagnosis hit Ann like a slap in the face. "I'd never felt so frightened in my entire life. I had this vision of Julian's brain shriveling up and dying, turning into mush overnight."

Ann said nothing to Julian. "I could have told him any other diagnosis -- a stroke, a brain tumor -- more easily. Alzheimer's just seemed like the worst thing that could ever befall an intellectual like Julian. I decided to let the neurologist tell him, but I asked the doctor not to use the word 'Alzheimer's.'"

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A few days later, Ann and Julian again met with the neurologist, who ran down a long list of diseases that the exam had ruled out, including a stroke, a brain tumor, diabetes, and vitamin deficiencies, among others. Then she said, "But there is a problem with your memory. You need to reduce your stress. Take it easy. Think about cutting back at work."

The neurologist did what Ann had asked. She never uttered the word "Alzheimer's." She told the truth, just not the whole truth. Ann was relieved and glad. She was still in shock over the diagnosis herself and felt she needed time to adjust, so she could support Julian effectively when he finally learned the truth.

Ann didn't get much adjustment time. Soon after that meeting, Julian received a letter from the California Department of Motor Vehicles (DMV) asking him to appear in person. Julian figured it was time to review his license.

When he presented himself, the clerk hit some computer keys, then some more.

"Is anything wrong?" Julian asked.

"I can't give you a regular renewal," the clerk replied.

"Why not?"

"Because you have Alzheimer's disease." (California doctors are required to report Alzheimer's diagnoses to the DMV. At the time of Julian's diagnosis, the DMV did not automatically revoke affected individuals' licenses but could require them to take periodic road tests to assess their competence. As this book goes to press, new research shows that driving is one of the first skills Alzheimer's sufferers lose. The American Psychiatric Association has called for immediate revocation of driver's licenses at diagnosis. But Julian was diagnosed back in 1990, and he was allowed to drive for another year.)

When Julian returned home, he began to weep, and Ann immediately realized what must have happened. "We embraced, and I began crying, too. What else could we do?"

The realization that he had Alzheimer's made Julian even more anxious, agitated, and depressed. One evening during dinner, Ann had to help him find words and finish quite a few sentences. It was hard for both of them, but she felt hopeful because despite Julian's increasing verbal difficulties, the conversation continued to flow. They still shared good communication.

Julian, however, felt differently. After dinner, he trudged into their bedroom, lay down, and pulled the covers over his head. Ann asked if he felt ill.

"Leave me alone," he mumbled.

"What's wrong? Did I say something that hurt your feelings?"

No reply.

"Tell me, please."

"I'm no good. I'm no good anymore. I can't do anything anymore. Thoughts just fly away. I think of something I want to say, and I can't remember the words."

Ann tried to comfort him. "There are many quiet people in the world. It's not bad to be a quiet person -- you just haven't been one before. Being quiet is new for you. Let's try to find good images of quiet people."

Meanwhile, Ann sank into a deep depression of her own. She experienced terrifying premonitions of impending doom. "I had visions that I was trapped in a room with no exit, and the walls began closing in." This is the end, she thought. Our lives are over. "They weren't, but I didn't realize that until much later."

Ann felt overwhelmed by the grief. "I was losing my husband, and the life we'd created. Alzheimer's hit like a strange kind of death sentence. Julian wasn't dying. In fact, he was very healthy, but the person I knew, the husband I loved, and our marriage -- all that was dying."

She also felt overwhelmed by fear. "What would happen to Julian? To me? How would I handle things like our finances? How would I manage him?"

Despite Ann's depression and Julian's frantic anxiety, the aftermath of his diagnosis brought an unexpected gift -- a rekindling of their passion for each other. "I immediately dropped all my anger at Julian's forgetfulness," Ann recalls. "In doing so, I realized how deeply I loved him, and how much precious time I'd wasted resenting his lapses." Meanwhile, Julian struggled to come to grips with what was happening to him, and he clung to Ann for support. "I was his anchor in the storm. As horrible as that period was for us, it was also a time of great love and tenderness."


Michael Castleman

Michael Castleman is the author of "Sexual Solutions: For Men and the Women Who Love Them."

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Dolores Gallagher-Thompson

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Ph.D.

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Matthew Naythons

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