Theres Still A Person in There: The Complete Guide to Treating and Coping with Alzheimer'sby Michael Castleman, Dolores Gallagher-Thompson, Matthew Naythons
Alzheimer's patients sometimes have trouble recognizing their own families. They may become confused, disoriented, or lethargic -- and can even endanger themselves if not closely watched. Faced with the loss of their independence and skills, they may resent having to rely on others. Caring for someone with Alzheimer's is one of the most painful challenges a person can face. It can also be among the most rewarding. And although there is still no cure for this disease, there is, at last, hope.
In recent years, remarkable progress has been made in treating, managing, and preventing Alzheimer's. With information about the latest medical advances, coping strategies for caregivers, and affecting accounts from families dealing with this disease, There's Still a Person in There presents a new understanding of Alzheimer's -- one that is optimistic, courageous, and comforting.
- Penguin Publishing Group
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Read an Excerpt
"There's Still a
Person in There"
Profile of Ann and Julian Davidson
* * *
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 thirty-seven 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, 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 absentminded professor. Ann was forever remindinghim 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 fifty-four, 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 twenty years, Julian had 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 them 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."
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. "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 sixty and the disease is rare in people under sixty-five. 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 fifty-nine, one from Hodgkin's disease, the other from complications of coronary bypass surgery. Julian was fifty-seven, and worried that he might fall victim to what he only half-jokingly called his "family curse." The psychologist agreed. Anxiety, confusion, and memory problems are all symptoms of depression, which was what the psychologist first diagnosed. Julian took this information to his doctor, who prescribed anti-anxiety 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. 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 competentlya 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.
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.
In the Yucatán, 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 diagnosisa stroke, a brain tumormore 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 at the local DMV office. No reason, just a request to appear in person. Julian figured it was time to renew 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.
"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 [see chapter 3]. 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?"
"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 personyou 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 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 marriageall 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 gifta 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."
When Julian was diagnosed with Alzheimer's disease, he and Ann knew nothing about the realities of the illness. All they knew were the grim stereotypes. "I imagined Julian wandering aimlessly around the neighborhood in his pajamas," Ann recalls. "I envisioned him tied into a wheelchair, drooling and staring off into space in some awful nursing home. I thought he'd be reduced to infancy, curled up in a fetal position, saying nothing and barely moving for years."
As the months passed, Ann overcame her initial fears and started getting serious about coping with her husband's illness. She visited the local office of the Alzheimer's Association. "I had to force myself to go there, and when I opened the door, I burst into tears." After the initial shock, though, she obtained some helpful literature and referrals to community caregiver resources.
Ann didn't fight Julian's diagnosis, but she decided to have him reevaluated by a different neurologist, just to make sure. "The second opinion was the sameearly Alzheimer's," she recalls. "I wasn't surprised. Deep down, I knew that was what Julian had."
A friend gave Ann a copy of The 36-Hour Day, at the time the main resource about caring for people with dementia. "I thought, Is this what I have to look forward to? Thirty-six-hour days? I made myself read the chapter on finances because Julian had always taken care of ours, and I dreaded taking them over, but I couldn't face the rest of that book and didn't read it for two years."
Ann struggled to find somethinganythingthat might slow the progression of Julian's Alzheimer's. She learned of a clinical trial of an experimental drug that seemed to help, tacrine (Cognex). Three years later, in 1993, Cognex became the first medication to win Food and Drug Administration approval as a treatment for Alzheimer's. Unfortunately, Cognex helps only a fraction of those who take it. It does not reverse the disease but only slows its progression, and caregivers often fail to notice any benefit. "Cognex didn't make any difference that I could see," Ann recalls, "but it was something, which felt better than doing nothing. And maybe Julian would have been worse without it."
Because Julian was part of the clinical trial, Ann obtained his Cognex for free. Afterward, she was told she'd have to buy it. "It was expensive. Julian's neurologist didn't believe in it, and our insurance refused to pay for it, so eventually I stopped giving it to him."
At this time, one of Ann and Julian's sons was working at a healthfood store and plied them with supplements reputed to help the mind: vitamins, minerals, and the medicinal herb ginkgo. "I've never been big on vitamins," Ann concedes. "I didn't expect any of that stuff to help. I gave Julian the supplements for a few months, mostly to support my son's efforts to help his father. After a while, I stopped them, too."
(Supplements do not work miracles for Alzheimer's sufferers, but several recent studies show that vitamin E, ginkgo, and the amino acid-based drug carnitine slow cognitive decline. See chapter 10.)
Their second son urged Ann to take Julian to a doctor of Chinese medicine. If Western medicine wasn't helping him, maybe Chinese medicine would. "The Chinese herbalist prescribed a bunch of herbs and sent us home with a huge bag of roots and twigs, but that didn't last long. Julian hated the taste of the tea, and I felt silly making it."
The best thing Ann did was to join an Alzheimer's support group for couples run by the psychiatry department at the Stanford VA Hospital. Two psychiatric nurses led the discussion at the group's monthly meetings, and about ten couples attended, each with an affected spouse and a caregiver.
On the one hand, the meetings were very sad and distressing. Ann and Julian were the youngest couple there, by at least ten years. Many of the affected individuals were much deeper into the illness than Julian was and had problems he did not yet have. They couldn't dress themselves, they wandered off, they left the stove on, or they became belligerent with the mail carrier. Is this my future? Ann wondered. Alzheimer's seemed so grim.
On the other hand, Ann found great comfort in the group. Here were people who knew exactly what she and Julian were going through in a way no one else did. Many of the caregivers seemed so resilient, so resourceful. When they feared that they were at their wits' end, the group leaders usually had wise, practical suggestions.
"I scream at her," one elderly husband-caregiver admitted, full of shame and guilt. "I can't help myself. She can be so infuriating!" His wife sat next to him, well dressed and looking quite normal, except that she paid no attention and incessantly mumbled nonsense.
"Every caregiver of a demented individual yells sometimes," one of the nurses said softly. "It's okay to let out your stress."
Ann absorbed the discussions. With the help of everyone here, she thought, I just might get through this.
But Julian felt differently. He hated the group, hated seeing the people in more advanced stages of the disease. "I'm not like them," he insisted after each meeting. "I'm healthy and strong." But his bravado couldn't hide his understanding of what awaited him. After six meetings, he refused to attend any more. Ann went by herself.
Although the support group diminished Ann's feelings of isolation as a caregiver, it also heightened her sense of growing distance from the close community of friends and family who knew Julian. "He went downhill right before my eyes. I could see it, day by day, week to week, but few others noticed because you had to spend a lot of time with him to see the gradual decline. Every day brought another heartache, another task he couldn't quite manage on his own, like making coffee, balancing the checkbook, dialing the phone. It was heartbreaking and very frustrating for me. I had good support, and yet I felt utterly alone in my knowledge of his deterioration."
By 1992, two years after Julian's diagnosis, Ann stopped scouring the newspaper for word of an Alzheimer's breakthrough and ignored the names and numbers 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."
To do that, Ann decided to keep his lifeand their life togetheras normal as possible for as long as possible. The effort was exhausting. She was losing her husband and knew that with each passing day he would be less and less the man she'd loved for more than thirty years. "I realized that I had to accept his journey and learn to let go of the husband I knew. It sounds so simple and right to say it now, six years later, but in the midst of it, there were many times I felt paralyzed with fear and grief and thought I was going insane."
In time Ann surprised herself. 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 pleasuretimes when Julian would hold me as tenderly as I've ever 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 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. He and Ann had many dreams of what they would do when he retired, which, before his illness, he believed was at least a decade away. With his illness, retirement was foisted on him suddenly and cruelly.
As fate would have it, about this time Stanford was in the process of closing the entire Anatomy building, where Julian worked, to repair damage sustained during 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 form letter from the Buildings and Grounds department specifying the date, several weeks away, 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 files 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 all at once 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."
They walked down the hall in stony silence. In the parking lot, Julian said, "You think I'm no good. You think I'm useless!"
"Darling, I never said that." Ann's eyes filled with tears, and she realized that her voice was hoarse from shouting. "I never used those words. You're saying that."
They embraced, and Julian began to cry. They cried together.
"Looking back on that period," Ann explains, "I didn't let go soon enough. I could have avoided that ugly sceneand so many othersif 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 the Stanford campus anymore. His lab was closed. His old familiar office was gone. His career was over. His colleagues were sympathetic to his plight, but life went on, and they let it be known that they expected him to quietly disappear. It was difficult for Julian to tear himself away. He'd commuted back and forth from his home to the campus, usually by bike, for thirty years. He grew restless and felt useless hanging around the house.
Fortunately, the Stanford Library had a comfortable faculty study. Julian loved the library and for years had gone there almost every day. His trips to the library marked the last vestige of his professional identity. Technically, Julian was no longer on the faculty and not entitled to faculty privileges, but the library staff understood his situation and made him feel welcome. "The staff people were wonderful to him," Ann recalls. "They kept an eye on him, retrieved his briefcase whenever he lost it, several times a week, and if anything seemed wrong, they called me."
As Julian struggled with relinquishing his career and leaving his productive past behind, he also wrestled with his uncertain future. Despite his failing mind, he tried to come to grips with the person he was becoming. He retained an intense desire to lead an interesting life and do meaningful work. Over and over again, he asked Ann, "Who will I be?" The question broke her heart. She struggled to maintain her composure, to reassure him. "You'll always be you, and I'll always love you." But inside, she was asking herself the same question: Who is he becoming?
Julian's forced retirement may have been his biggest personal loss, but Ann's attempt to keep him from driving infuriated him. Ann was astonished that the DMV didn't revoke Julian's license the moment his neurologist reported his diagnosis. By then, he was a terrible driver. He'd make right turns from the left lane and run stop signs. "I was a basket case whenever he was behind the wheel. If I knew Julian had the car and the phone rang, I'd answer it praying that he hadn't hurt himself or someone else."
Still, Julian adamantly refused to stop driving. "I've never had an accident!" he bellowed whenever Ann raised the subject. "We had our biggest, most bitter fights over his driving," Ann recalls. "I couldn't forbid him to drive, so I got sneaky about it. The books all say, `Just take the person's car keys and they won't know the difference.' But when Julian discovered that I'd removed his car key from his key ring, he became furious. I'd stripped him of his dignity. He cursed me, which was a first for us. That moment was one of my lowest points as a caregiver."
No matter how much Ann coaxed, pleaded, and railed, Julian stubbornly clung to this last freedom, even as his ability disintegrated. Ann began orchestrating their errands to accommodate Julian's insistence on driving. "I'd ask him to drive to the stores near our house during the day. There was rarely much traffic, and he never got going that fast. I had to insist on driving at night, on the freeways, and on any long trip."
Sometimes, the informal split of their driving responsibilities worked well, but Ann could never be sure that Julian would play along. Once, one of their sons flew in from New York and had to be picked up at the airport, about forty-five minutes away. It was a lovely day, and Ann suggested that Julian might like to take a little snooze while she drove to the airport. No sale. Julian marched out to the car, plopped down in the driver's seat, and would not budge, no matter how much Ann begged.
Finally she said, "If you're driving, I'm not going."
"Fine," Julian replied, and backed out of the driveway and drove off alone.
Immediately, Ann regretted her tactic. "I was a nervous wreck. I had visions of losing both my husband and my son in a freeway fireball. They finally showed up a few hours later. Those were the longest few hours of my life."
A year after Julian's post-diagnosis renewal, the DMV finally revoked his license. Ann heaved a huge sigh of reliefbut prematurely. Julian was still cogent enough to understand that he'd lost his license, but he didn't care. He kept trying to drive anyway. "I was appalled, of course," Ann recalls, "but as long as he could recognize his car key, I couldn't take it away from him, and I couldn't get rid of the car because I needed it."
Time was on Ann's side. Soon after Julian lost his license, he'd declined to the point where he became less adamant about driving. If Ann confronted him about it, he became huffy, but if she was casual and tender, he would go along. Eventually, Julian's desire to drive faded and, along with it, his anger about the subject.
Unfortunately for Ann, the conflicts raised by Julian's driving did not disappear when he finally stopped. Like a recurring nightmare, they came back to haunt her over his bike riding. He was as attached to bicycling as he was to drivingand there was no DMV to order him off the road. "He got lost," Ann remembers. "The police and kindly strangers brought him home many, many times. He lost his bike more times than I care to recall. He'd wander home confused, saying he'd left it by a brown building or by a green truckGod knows where. I'd call the campus police and we'd search all over the place. Usually we'd find the bike within a block or two of the library."
Ominously, as Julian became more confused, he stopped paying attention to stop signs and traffic lights, and the inevitable happened. One afternoon, he pedaled through a red light into heavy traffic, and a German graduate student hit him. Julian was not injured, but when the student asked, "Are you okay?" Julian couldn't respond. He didn't know his name or where he lived. The poor student was frantic. Fortunately, the bewildered student found Julian's address in his wallet and brought him home.
Ann had always participated in the family checking account, but Julian paid the bills, took care of their taxes, financial planning, and record-keeping. Ann felt intimidated by those chores, especially taxes, and feared taking responsibility for them. "Early on," she recalls, "I read about how the caregiver must eventually take over the finances, but in the day-to-day chaos of Julian's decline, we never got around to discussing things like taxes."
About two years after Julian's diagnosis, Ann realized that he could no longer handle paying the bills. "He'd pay bills several times, or write checks and leave the amount blank, or forget to sign his name." Recalling the battle they'd had over Julian's driving, she began assuming the financial chores slowly and stealthily. This time her cautious approach was unnecessary. "Julian was relieved to give up the finances."
Then April rolled around, and Ann was forced to confront her deep fear of dealing with their income tax. She hoped Julian would be able to help her file their taxes, but he was too impaired to explain anything. All he could communicate was his relief at not having to fill out the forms himself. "I kicked myself for not dealing with the documents when he could still help."
On her own, full of dread, Ann began sifting though their financial papers. What she discovered in their tax files left her in despair. Julian had misfiled just about everything. Important papers were stuffed haphazardly in various desk drawers. "It was a nightmare," Ann recalls. "I remember sitting there looking at this incomprehensible jumble of papers and just sobbing."
Eventually, Ann gathered up every document that looked the least bit important, dumped them all in a big box, and took them to their accountant. Julian never mentioned their finances again.
Neatness had never been Julian's strong suit, and with three active kids, the Davidson home was comfortable but cluttered. Not long after Julian's diagnosis, Ann realized that their piles of books, magazines, personal papers, clothing, and athletic gear were becoming increasingly difficult for Julian to handle. "In all the chaos, he couldn't find things," Ann recalls, "and when he put something down, I couldn't find it." Ann began tidying up with a vengeance. "The house was neater than it had ever been." Eliminating the clutter helped.
Unfortunately, around this time, Julian became obsessed with paper. He had less and less idea what documents meant, but he felt compelled to scoop them up, carry them around the house, and usually deposit them in some out-of-the-way nook, effectively hiding them from Ann. It often took weeks for bills or invitations to turn up. "It was chaos," Ann recalls. "I felt like I was fighting chaos all the time."
There was only one way to copehide any significant papers from Julian. The key was to be the first one to collect the mail. Ann lay in wait for the postman, and quickly, quietly secreted everything that was important in places where Julian never looked, usually in the deep recesses of her own desk.
As he declined, Ann had to spend more and more time supervising him, which left precious little time to do things like pay bills, answer letters, or maintain their home. If she tried to do chores when Julian was around, there was always the danger that he would snatch up some paper and, like a toddler, simply refuse to let it go. "I had to be very sneaky," Ann explains. "It was exhausting. I hated it."
Ann had to watch Julian every second. He had never done much in the kitchen, but as his Alzheimer's progressed, he became a menace. "He never had any accidents with knives, thank God, but he started burning things in the toaster oven, so I had to get rid of it. While trying to make tea, he melted two kettles to the point where they looked like weird abstract sculptures." As the months passed, Ann jettisoned every nonnecessary item around the house that might injure Julian or cause some disaster. "He began cutting his lips while shaving, so I threw out his razor and bought him an electric shaver."
Dressing was another major issue. Julian became increasingly confused when deciding what to wear. By this time, Ann understood a key to Alzheimer's caregiving: limit the affected individual's choices. She emptied his closet, leaving only three shirts and three pairs of pants, eliminating the confusion.
Once Julian decided what to wear, he found it increasingly difficult to dress himself properly. He might put his underwear on over his pants, or his shirts on backward, so Ann got creative. After Julian showered, she laid out his clothes in a trail on the floor starting at the bathroom door: first his underwear, then his socks, then his pants, pullover shirt, and shoes.
"Dressing is very complicated" Ann explains. "I had to break everything down into a string of simple tasks. After a while, I realized that I was living my life in slow motion. Taking care of Julian required patience and stamina I never thought I had. That was a giftlearning that I was more resilient than I thought I was. Julian's personal care was maddening. It's one thing when your husband can't hold up his end of the conversation. It's quite another when he can't brush his teeth." Eventually, she bathed him, fed him, and cleaned him up after he went to the bathroom.
As Julian deteriorated, Ann spent most of her time in a whirl, dealing with the hundreds of banal, exhausting details involved in caregiving. Every now and then, a moment of passage drew her up short and she experienced the full weight of what was happening to them. For example, birthday cards. "For the longest time, I automatically signed `Ann and Julian.' Eventually, I wrote just `Ann.'" Then there was their phone machine message. "It said, `Neither Ann nor Julian can take your call right now....' I left it that way for months after Julian lost the ability to have a meaningful conversation. Then I changed it to: `Ann can't ...'" Those transitions were sad because they forced Ann to realize that Julian was disappearing from the world. "But in a funny way," she recalls, "they also helped me adjust to what was happening to him, to us."
Caregiving utterly drained Ann. "Every little loss meant another demand on me. The amount of energy it required was bad enough, but the tedium got so depressing." To assist with the process, Ann attended a very helpful class, sponsored by the Alzheimer's Association, on reframing. "The class helped me change, or reframe, my reactions to Julian's behavior. 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. Not that the class changed my reactions overnight. It took time and effort. I still cried, and yelled, and felt crazy at times, but eventually I changed, and it helped."
As Julian went downhill, Ann's once busy social life became increasingly constrained. Invitations had to be declined. Friendships frayed. Movies, concerts, and many other outings were out of the question. "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."
One friend took Julian out to lunch and to a music appreciation class every Tuesday afternoon. Another regularly took him to the local food bank, where together they assembled food boxes for the homeless. A third took him to a singing group at the Jewish community center.
The respite was a godsend for Ann, 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. She turned to adult daycare.
Julian's daycare center was a dream come true. Housed in a clean, pleasant facility and staffed by caring souls who genuinely liked him, Julian reveled in the activities and liked the other clients who were there with him. He was ten years younger than the average participant, but no one seemed to notice, least of all Julian.
At first, Julian went to daycare two days a week, then increased to five. Suddenly, Ann had freedom she hadn't had in years, whole days where she could renew friendships and resume suspended activities without worrying about Julian burning down the house. As the months passed, however, Julian's attention span grew shorter and he became less cooperative with the staff. He wouldn't sit down for meals or activities. All he wanted to do was wander aimlessly around the center, sometimes escaping out the front door. The staff found him increasingly hard to handle, and asked Ann to cut him back to four days a week.
Then Julian became physically aggressive. He never punched anyone, but he began poking and shoving people. Ann and the staff tried reprimanding him, but he was oblivious. Eventually, the staff hinted that unless Ann asked Julian's doctor to medicate him, he would have to stop coming. "They never gave me an ultimatum, and they were very kind and helpful, but it was clear they thought he needed to be medicated."
Ann was not eager to put Julian on drugs. She considered hiring an in-home aide, but rejected the idea. "The center staff was better trained, and they had a good program. In-home help would have been nothing more than very expensive baby-sitting. Julian would not have liked it. Besides, I didn't want strangers in my home."
So reluctantly she took Julian to the doctor. He prescribed Mellaril, 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. Not that his talking made much sense by that point, but he was always verbal, even if what he vocalized was nonsense. But on the Mellaril, he retreated into an eerie silence. 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 continued his disruptive ways 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 stonger. "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 never wandered away as so many people with Alzheimer's do," Ann recalls, "but he wandered around the house incessantly, aimlessly manipulating objects he no longer recognized. There were hardly any places I could take him. I was afraid he might grab someone as he was doing at daycare. It got to the point where our life shrank down to eating, taking long walks around our neighborhood, and listening to music."
Like the daycare staff, Ann also had an increasingly difficult time handling Julian. Again, she considered hiring an aide to come to the house, but again decided against it. Then Julian started urinating in any round containerwastebaskets, flowerpots. Around the same time, Julian began staying up most of the night. He would sleep from seven to eleven P.M. and then be up until morning, shuffling aimlessly from room to room for hours on end. Ann couldn't stay up to supervise him and didn't want to pay for a home aide overnight. She asked Julian's doctor to prescribe sleeping pills, but nothing worked. In the end, she locked the house so Julian couldn't leave, went to sleep in the spare bedroom, and let him wander around the rest of the house.
To make matters worse, 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. "He never got into the garbage or lit any fires, thank God," Ann explains, "but every morning, it was like a hurricane had struck. 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 saw the writing on the wall. She knew she was approaching her physical and emotional limit as a caregiver. She also knew what that meantresidential care. "From the time Julian was first diagnosed, I understood that I'd eventually have to face up to putting him in a home," Ann recalls, "but I kept thinking, Later, later, next year." (Colloquially, residential care facilities are often called nursing homes, but there's a big difference. In nursing homes, residents are either frail or ill and require nursing care. In residential care, they don't need nursing, just supervision and help with activities of daily living.)
In the early stages of Alzheimer's, when those with the disease still understand the implications of their illness, some people exhort their families: "Don't put me in a home. I couldn't stand it." But Julian never said a word against them, which helped Ann face the fact that she had to start looking. "When Julian became disruptive at daycare, I knew that I wouldn't be able to keep him at home much longer. Fortunately, a social worker at the daycare center was familiar with the residential care facilities in the area that accepted people with Alzheimer's. She accompanied me to visit some."
The first few times Ann stepped into residential care center dementia units, she felt as though she'd had the wind knocked out of her. In some, bathroom odors were pervasive. The residents were much older than Julian, and most of them were not as healthy. Some places had no activities appropriate for Julian. Others had programs that he would like but that were too structured for him. Most of them looked like hospital unitsa nurses' station in the middle of a long hall with rooms off it, and a day room/dining room. Ann imagined Julian spending the rest of his life wandering up and down some long hall, locked in, profoundly confused, a robust man jailed. It broke her heart.
Then, through an acquaintance, she heard about a refreshingly different Alzheimer's care facility about an hour away from their home. It was not built on a hospital model. "It was ranch-style, all on the ground floor, with rooms along several short halls that radiated off a central activity room. At the end of each hall was a glass door that opened out to a big enclosed yard. Residents were free to participate in organized activities or to wander around the halls and yard. I thought, Here's a place designed especially for confused wanderers like Julian. He could feel comfortable here. I liked the activities, too. They had lots of music, which was one of the few things Julian still loved."
Simply finding an acceptable residential care facility did not make it any easier for Ann to move Julian there. "Placing him was by far the hardest part of Alzheimer's for me," Ann says. "It was the hardest decision of my life."
Moving Julian marked the end of their thirty-seven years together, or so it seemed to Ann at the time. Of course, they hadn't had much of a life together for several years, but in Ann's view, 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. Julian was still sweet and affectionate at times. He was still deeply connected to her. He needed her. How could she send him away?
"Maybe I should keep him at home a while longer," Ann chided herself, "somehow muddle through." She thought of acquaintances who had cared for a sick parent or spouse at home until they died. She should be like them, she berated herself, but deep down she knew that placing Julian was the best alternative for both of them. "I couldn't provide good care for him any longer, and trying to was ruining my health and life."
A few months after Ann found the home, 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. "Julian thrived there."
The first thing the staff did was take him off Mellaril, which made a tremendous difference. "He became more alert, more attentive, more alive," Ann recalls. "I hadn't realized how bad that drug had been for him until he stopped taking it."
Julian was also more relaxed. "They kept everything simple and predictable. Of course, I'd tried to do the same at home, but I couldn't do it as well as a dedicated dementia care facility. Julian enjoyed the routine, which helped keep him calm, relaxed, and happy. Julian never felt locked in. He could wander to his heart's content, 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. The night staff put him in his bathrobe and slippers and talked to him or let him wander. Most of what we hear about Alzheimer's is stereotypes," Ann explains. "The truth is that everyone with the disease is a unique individual, even as their dementia becomes severe. This home allowed each resident the freedom to be who they were, and I think Julian appreciated that. I know I did."
Julian's care cost $105 a day, about $38,000 a year. Combining their savings, Social Security, and Julian's Stanford benefits, Ann could just swing it, but Julian's care has forced some hard choices on Ann. "I can't help my kids buy homes, or send my grandchildren to summer camp, much less college. Still, I keep thinking how lucky we are to be able to afford this care center, even though it's a killer financially." Down the road, when Julian can no longer walk or eat by himself, he may need nursing care. That can cost $50,000 to $60,000 a year. Ann does not know if she can afford it, but she tries to take things one day at a time and not think too far into the future.
At first, Ann visited Julian every day, but as the months passed, she dropped back to four times a week, then three, and as this book goes to press, two. "If I thought Julian missed me, or if the staff thought so, I'd go more often, but the time interval between my visits doesn't matter to him. He lives entirely in the present. When I'm there, he's excited to see me, but when I'm not, he doesn't seem to mind."
Ann visits not out of a sense of duty but because she wants to. "We still connect. Although he is severely impaired now, our relationship endures. We continue to be deeply connected, to the extent that we can be, given his condition."
Julian no longer knows Ann's name, but he knows her. "When I arrive, he smiles, runs up to me, and gives me a big hug. He's very affectionate and tender. We share lots of loving eye contact. We hold hands. He strokes my hair and kisses me."
Julian has also surprised Ann with unexpected flashes of lucidity. "He spoke mostly gibberish for more than a year before he moved to the home, but after a few weeks thereonce he was off the Mellarilhe told me he loved me. Some time later, he said, `I'm okay. I'm really okay. Now you be okay, too.'" Once when Ann arrived, another resident walked up to her, took her hand, and asked to go for a walk. That was fine. Ann knew the man and was willing. "But when Julian saw it, he marched up and tapped the man on the shoulder as if cutting in at a dance. He stood up straight and said, `Pardon me, sir.'" Months later, after Julian had declined further, Ann brought an old friend to see him, someone he hadn't seen in several years. "He smiled and greeted her by name, which was astonishing." Another old friend came from Israel and spoke to Julian in Hebrew, which he once knew. He beamed at her and said, "Finally! Someone who knows."
Flashes of cogency aside, Julian's loss of speech has been hard for Ann. "We had such a verbal marriage. It's been quite a challenge for me to feel comfortable with Julian without words. I imagine it's been very hard for him, too, but we still communicate with looks, and caresses, and smiles, and laughter. It's taken a while, but I've gotten used to it. Odd as it may sound, we still have fun together."
Long after people with Alzheimer's disease lose their language ability, they often retain the ability to singmaybe not lyrics, but melodies, either humming along or singing la-la-la. That's been the case with Julian. "For his first year at the home, he had a repertoire of maybe forty songs: `Clementine,' `Oh Susannah,' `Red River Valley,' other American standards, and quite a few Jewish folk songs. I'd start singing, and just two or three notes into the song he would recognize the song and join me. He's lost many of the words now, but he still sings with such feeling! Singing always puts him in a good mood. We sing, and laugh, and sing some more."
Before Alzheimer's, Julian and Ann were avid hikers. They hiked along the shore of San Francisco Bay and in the high Sierra. When she visits Julian, Ann often takes him to a nearby park, and they take long 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. Afterward, I take Julian to a little café and get him hot chocolate. He loves chocolate."
As this book goes to press, Julian has severe Alzheimer's, yet he retains certain skills that many others with the disease lose early on: He still buttons buttons, zips zippers, ties his own shoes, and toilets by himself. He's usually happy, and that makes Ann happy. Of course, she has hard times, too. "Sometimes, when friends tell me about their trips to Europe, their professional activities, or their summers in the mountains, 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 share."
The mass media often describe Alzheimer's disease as a "living death." Ann disagrees. "As human beings, we're a great deal more than how we define ourselves. 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 an occasional word, yet he greets me with a warm smile 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. It's amazing to me, impaired as he is, Julian is still with me. There's still a loving person in there."
Ann Davidson kept a journal while caring for her husband. She has collected fifty-six poignant vignettes in a deeply moving memoir, Alzheimer's: A Love Story (Birch Lane Press/Carroll Publishing, Secaucus, NJ, 1997. $19.95). It deals with the period from the summer of 1992 through the spring of 1993, when Julian had mild to moderate Alzheimer's.
What People are saying about this
There's a Still a Person in There reflects the latest thinking in Alzheimer's disease diagnosis, management and care. This is an important and valuable resource for professionals and families.
An outstanding new guide with the latest insights on coping with the tragedy of dementia in the family.
There''s Still a Person in There contains thorough, easily readable information that should inspire hope in patients and their families. Combining the latest in medical knowledge with a case history approach, the authors present what is known about new drugs and other helpful strategies for managing behavioral problems associated with dementia. The information about ethnic elders and people of color and dementia is an especially novel and welcome addition to books on dementia.
This absorbing, easy to read book provides comprehensive, up-to-date information about Alzheimer's Disease and ways of coping with its daily challenges. The real-life stories are powerful testimonies that show how patients and families who often lack basic information about the disease and the strategies that can preserve their own well-being.
Ph.D., Director, Community and Homecare Research Division, Thomas Jefferson University, and Director for Research, Senior Health Institute, Jefferson Health System
A comprehensive guide to what we know about Alzheimer's disease. The book is unique in providing a helpful review of controversial topics such as the use of alternative therapies and potential ways to prevent Alzheimer's disease. A must read for anyone interested in Alzheimer's disease.
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