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The worst diagnosis | page 1, 2
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. There's Still a Person in There: The Complete Guide to Treating and Coping With Alzheimer's By Michael Castleman, Dolores Gallagher-
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. "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 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. 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.'" 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." Excerpted with the permission of G.P. Putnam's Sons.
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