The absent-minded 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. 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 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.
Over the decades, Ann adjusted to her husband's workaholic preoccupation with his career. Of course, she got annoyed when she realized, too frequently, that Julian was not giving her his undivided attention. Ann was forever reminding him not to forget his briefcase, or his keys, or his brothers' birthdays or the 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 the 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." 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.
For three years, with rising apprehension and anxiety, Julian complained to Ann about his memory. At first, she chalked his anxiety up to chronic career stress; but after a while, she noticed that her absentminded husband seemed increasingly scattered. Still, it didn't concern her too much.
Despite Ann's efforts to comfort and reassure him, Julian insisted that something was really wrong with him. He consulted his family doctor, who did not suspect Alzheimer's because the disease is rare in people under 65. But Julian was clearly troubled, so his doctor sent him to a psychologist.
Anxiety, confusion and memory problems are all symptoms of depression, which was what the psychologist first diagnosed. Julian's doctor prescribed antianxiety medication along with counseling from a psychotherapist. His memory problem did not improve.
Then, Julian began using words incorrectly, often saying the opposite of what he meant. Ann didn't take her husband's lapses too seriously, 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 apprehension and shame.
In early 1989, Julian began forgetting his appointments with Ann. She figured he was being rude or uncaring. "I was furious with him for much of the year before his diagnosis," she admits. Ann's anger made her less sympathetic to Julian's growing plight, and it made him feel even more anxious and ashamed.
As the months passed, Julian became convinced that, independent of any anxiety or depression, his memory was going. He asked a Stanford colleague to evaluate him. The results reassured Julian. "His short-term memory was a bit deficient," Ann recalls, "but still in the normal range."
Early in 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. 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."
Julian's troubles continued. They found the briefcase, but at his presentation, he mixed up his slides and answered several questions inappropriately, eliciting 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. In the Yucatan, "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 came in Palenque. After a day of hiking around Mayan 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.
"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.
Ann recalls "a horrible sinking feeling." This was not the husband she knew.
Ann accompanied Julian to his neurological exam. While Julian was still being tested, his neurologist emerged 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 hard. "I'd never felt so frightened. I had this vision of Julian's brain . . . turning into mush overnight." Ann said nothing to Julian. "I decided to let the neurologist tell him, but I asked the doctor not to use the word 'Alzheimer's.'" Ann felt she needed time to adjust, so she could support Julian effectively when he finally learned the full truth.
She didn't get much adjustment time. Soon after, Julian received a letter asking him to appear at the local Department of Motor Vehicles office. 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." Julian's doctor had complied with the California legal requirement to report Alzheimer's diagnoses to the DMV.
When he returned home, Julian 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 depressed. Ann sank into a deep depression of her own. This is the end, she thought. Our lives are over. "They weren't," she says, "but I didn't realize that until much later."
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. "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."
By 1992, two years after Julian's diagnosis, Ann stopped scouring the newspaper for word of an Alzheimer's breakthrough and ignored the names of new doctors and "alternative" practitioners friends suggested she call. "I decided to put all my energy into caring for Julian, to help him slide as painlessly as possible into whatever Alzheimer's held for him."
Ann decided to keep his life -- and their life together -- as normal as possible for as long as possible. She knew that, with each passing day, he would be less and less the man she'd loved for more than 30 years. Little by little, she accepted Julian's losses. "There were days when the process was horrible, when his deterioration infuriated and scared me, when I sobbed and cursed in despair," she recalls. "But there were good times, too, periods of fun and joy and pleasure -- times when Julian would hold me as I've never been held, or he'd see something that struck him as funny and laugh uproariously, which would start me laughing, too. Our life was going down the tubes, but it was still our life, and all I could do was make the best of it."
Ann was also surprised by Julian. His intellect slowly evaporated; but in some ways, Alzheimer's disease highlighted the nicer side of his personality. His sarcasm disappeared, replaced by an innocent gentleness. "Julian declined steadily, but the process was not as grim as the stereotypes suggest. Even as he became increasingly confused and impaired, his fundamental personality remained. There was still a person in there."
Retiring from work terrified Julian. His work was a huge part of his identity, and Alzheimer's disease ripped it away from him long before he'd imagined letting it go. Julian's inability to work infuriated him. He had so many plans, so many ideas for research he wanted to do, but they all began slipping away.
About this time, Stanford was in the process of closing the entire anatomy building, where Julian worked, to repair damage from the 1989 Loma Prieta earthquake. Like the other professors, Julian was assigned a new office in another building, but as his colleagues moved, he could not tear himself away from his beloved old desk and bookcases. Eventually, he received a letter from the buildings and grounds department specifying the date when he had to turn in his anatomy building keys.
In preparation, Julian went to his office every day "to sort my papers," he told Ann. She encouraged him to bring his books and papers home, but each afternoon he returned empty-handed. Finally, after weeks of procrastination, Ann drove to the campus and appeared at Julian's door with several boxes.
"Get out of here!" Julian shouted. "Leave me alone! This is my stuff! You think I'm no good! This is my business!"
Ann tried to explain that he had to be out of the office in just a few days. That only made Julian more agitated. "Leave me alone! Get out of my business!"
Ann had been patient for weeks, but at that point she lost her temper. "You don't understand anything!"
Julian glared at her, and Ann experienced an epiphany. Julian's books and files didn't matter. He couldn't use them anymore, so why fight about them? "Okay," Ann said. "You're right. It's not my job to clean out your office. I'm leaving and won't come here again. Do whatever you want."
"Looking back on that period," Ann explains, "I [realize I] didn't let go soon enough. I could have avoided that ugly scene -- and so many others -- if I hadn't tried to reason with Julian to get him to see things my way. How slowly I learned!"
When Julian finally vacated his office, leaving most of his things for the custodians to discard, he had no real reason to be on campus anymore. His lab was closed. His old, familiar office was gone. His career was over. His colleagues were sympathetic, but life went on, and they let it be known that they expected him to quietly disappear.
As Julian deteriorated Ann spent most of her time in a whirl, dealing with the hundreds of banal, exhausting details of caregiving. "Every little loss meant another demand on me. The amount of energy it required was bad enough, but the tedium got so depressing." Ann attended a class, sponsored by the Alzheimer's Association, on "reframing."
"Before the class, when Julian would do something weird, my first thought would be, 'He's so stupid,' or 'Oh, my God, he's getting worse.' Afterward, it changed to, 'He's doing the best he can. He wouldn't be this way if he had any choice in the matter.' Reframing helped me accept what was happening. I still cried and yelled and felt crazy at times, but eventually I changed, and it helped."
Ann's once-busy social life became increasingly constrained. Invitations had to be declined. Friendships frayed. "Many friends pulled away," she recalls, "and for a while, I resented it. Over time I realized that I haven't been there for every friend of mine who's gotten sick or had some family problem that overwhelmed them. Instead of feeling angry about the friends who withdrew, I felt very grateful for the few who hung in there with us." But as the months turned into years and Julian deteriorated further, she realized that even their loyal friends could no longer handle him and that she needed more help.
Julian's daycare center was a dream come true. Housed in a clean, pleasant facility staffed by caring souls who genuinely liked him, Julian reveled in the activities and liked the other clients. Gradually, however, his attention span grew shorter and he became less cooperative with the staff. Then he turned physically aggressive. Eventually, the staff hinted that unless Ann asked Julian's doctor to medicate him, he would have to stop coming.
So, reluctantly, she took him to the doctor, who prescribed an antipsychotic drug used to treat combativeness. "It was awful for Julian," Ann sighs. "As his dose was increased, he turned into a catatonic gorilla. He'd stand in our kitchen for long periods hunched over with his arms hanging down just like an ape. He stopped talking. . . . When he wasn't doing his gorilla thing, he began crawling around the floor on his hands and knees, more confused than ever. He had no idea where he was. He couldn't find the bathroom, so he urinated all over the house. Twice he defecated in the shower."
Meanwhile, despite the drug, Julian was disruptive at daycare. He grabbed people by the throat. The staff asked Ann to cut him back to three days a week and insisted that she ask the doctor to prescribe something stronger. "The word 'nightmare' does not even begin to describe what I went through."
With less and less time at the daycare center, Julian spent more time at home. "He wandered around the house incessantly, aimlessly manipulating objects he no longer recognized. Our life shrank down to eating, taking long walks around the neighborhood and listening to music." Julian began staying up most of the night: sleeping pills didn't work. In the end, Ann locked the house so he couldn't leave, went to sleep in the spare bedroom and let him roam around the rest of the house.
As Julian wandered, he virtually dismantled the house. He moved furniture, emptied closets, took pictures off the walls and dragged sheets and blankets into the kitchen. "Every morning, it was like a hurricane had struck," Ann says. "I'd get up and have to brace myself for what I'd find, including urine puddles. It was almost impossible to put things back together again and care for Julian at the same time. It drove me crazy." This continued for months.
Ann knew she was approaching her physical and emotional limit as a caregiver and had to start looking at residential care facilities. But simply finding an acceptable one did not make it any easier to move Julian there. As long as she was caring for her husband, she was still living her marriage vows. If she placed Julian, she felt she would be walking away from those vows, and the idea filled her with guilt and doubt.
A few months after Ann found a suitable facility, the daycare center said they couldn't handle Julian anymore. "I called the residential care center and took Julian there the next day." That was February 1996, almost seven years after Julian's diagnosis.
Within a few days, Ann knew she'd made the right decision. "I should have moved him to the home months earlier," she says. The first thing the staff did was take him off the antipsychotic medication. "He became more alert, more attentive, more alive," Ann recalls. "He could wander in and out any door and all around the big yard as he pleased. He could also stay up all night and not disturb anyone. This home allowed residents the freedom to be who they were, and I think Julian appreciated that. I know I did."
Today, when she visits Julian, Ann often takes him to a nearby park, and they go for walks together, two or three miles. "We walk, hold hands, laugh and sing. If you saw us, you'd never know that Julian had Alzheimer's, except for his constant humming. You'd think we were just another middle-aged couple out for a stroll, enjoying each other's company."
He's usually happy, and that makes Ann happy, too. Of course, she has hard times. "Sometimes, . . . I think of the life Julian and I might have had, and I have moments of feeling very sad. Sometimes, I miss him terribly and feel very lonely. But this is my life. It's what I've been given. I try to count my blessings. I've had everything that's important in life, and I work to take pleasure in the connection Julian and I still have."
The mass media often describe Alzheimer's disease as a "living death." Ann disagrees. "It's amazing how much you can lose of what you once considered essential to your self and still retain your humanity. Julian can no longer take care of himself, and he's down to just a few tunes and a loving hug. We take our walks. We fool around. As long as I don't expect anything from him, as long as I stay in the moment, we can have fun. Impaired as he is, Julian is still with me. There's still a loving person in there."
Michael Castleman has written eight consumer health books and is editorial director of alzheimers.com. Dolores Gallagher-Thompson is an associate professor at the Medical Center specializing in caregiving and geropsychology. Matthew Naythons is vice president for health information at PlanetRx.com.
