WRITING AN INTRODUCTION to a book should be the privilege of the author, but the steady and relentless encroachment of Alzheimer's disease has silenced Cary's voice forever. Now sixty-eight years old, he still lives, but only in the sense of having a beating heart and lungs that continue to take in air. The man who spoke of his efforts to live with Alzheimer's disease and who wanted to help others understand more about the disease now lies mute and helpless in a nursing home bed, unable to do the smallest thing for himself. Yet some tiny spark still lives within him when I told him that his book would be published, Cary's eyes filled with tears, tears that I choose to believe were tears of joy. This project meant everything to him at the time he dictated his musings and when he sat and listened to Nancy Andrews, our good friend and photographer; Jackie Main, our daughter; and me, as we worked to edit his thoughts into a readable book.
Cary Henderson was a Georgia boy whose family moved south to Jacksonville, Florida, just before the beginning of World War II. He was the first of his family to achieve higher education and he became a college professor with a Ph.D. in history from Duke University. We married very young and made this journey into academia together. We had three children, Jim, Tim, and Jackie, while Cary taught at the secondary and junior college level and worked on his doctorate. During these early years Cary also continued to develop the many interests which added so much richness and meaning to his life. He loved music and had a good baritone voice which he used to sing in church choirs and musicals on the college and community level. Although he was a rather shy and diffident man, he came to life on a stage with local theater groups. He also played the cornet, from high school through to the community band of Harrisonburg, Virginia. Another passion was photography, which he perfected to a semiprofessional level, photographing weddings, college sports events, dog shows, and nature, and making portraits of students. Cary also had a strong belief in volunteerism. He would drive the sick to medical appointments, ring the bell at Christmastime for the Salvation Army, work with the local area food bank, and as a lifetime member of Kiwanis he was secretary of his local club for eight years.
This gratifying life began to slow down in the early 1980s, with Cary giving up on one activity and then another as he searched for answers to disabling headaches and vision problems. In 1985, at the age of fifty-five, Cary had a CAT scan which led to a diagnosis of probable normal pressure hydrocephalus because the scan showed abnormally large ventricular spaces, and we were told that he could have a shunt operation which would alleviate the fluid build-up in the ventricles of the brain and correct the condition. I asked the neurosurgeon who was to perform the operation if Alzheimer's disease was a possibility, and he took the precaution of taking a small segment of brain tissue during the operation for a biopsy. The tissue showed the characteristic plaques and tangles of Alzheimer's disease and I was told that Cary had a terminal illness; he could live for two more years or twenty more years, but there was no treatment and his condition would steadily worsen. I made the decision to delay telling Cary until he had recovered from the shunt operation, which had been unnecessary, as it turned out. About two months later, on a Sunday morning just before we were to leave for church, Cary said he wanted to go back to the hospital at the University of Virginia and tell them that his headaches were no better. I knew the time had come to tell him the truth, and even now, thirteen years later, I feel it was the most difficult thing I've ever done. I had decided that it was kinder to be definite and I told him there was no mistake, the biopsy had provided a certain diagnosis usually not available until an autopsy is done at the time of death. We never got to church that morning; we stayed in the kitchen for hours, crying and hugging each other and making plans. As Cary struggled to accept his fate, I realized again what a special person I was married to. We decided right then and there that as soon as possible we would do all the traveling we had planned for our retirement, do it while Cary was still able to enjoy it. This decision led to trips to Europe, the Pacific Northwest, and New England and Nova Scotia.
In the two years between Cary's diagnosis and his retirement, he continued to teach part-time, thanks to the understanding and compassion of his department head. But by the end of the first semester of the second year, we all knew that it was over. Students were complaining about his inability to lecture; I had to grade his exams when he brought them home and looked at me helplessly; then, when I asked him how to figure the students' grades for the course, he couldn't tell me. He was asked to retire by May 1987 and he was given a sabbatical semester to finish off his teaching career. During that semester, Cary occupied himself doing research for a book he believed would be an original contribution to the field of American history, but nothing came of it despite his best efforts. This was a very frustrating time for Cary; he was still able to read and write, although on a much reduced level, and while he knew he had Alzheimer's disease, he found it hard to understand and accept that he wasn't able to put his research together coherently.
The week after Cary cleaned out his office at James Madison University and brought all of his books and files back home, we experienced a disaster in the form of a house fire. Cary and I escaped from the house unharmed in the middle of the night, but we lost our two Yorkshire terriers and most of our possessions. The fire began in our kitchen trash can where Cary had discarded a cigar stub not thoroughly extinguished. A mistake to lay at the door of Alzheimer's disease or a mistake that could happen to anybody? The shock of the fire and our subsequent gypsy life in motels until the house was rebuilt caused a discernible increase in Cary's symptoms. He never drove a car again after the fire, he never wanted to smoke another cigar, and his ability to read and write decreased measurably.
During the first three years after Cary's diagnosis, we sought help from our local medical establishment general practitioners, a neurologist, and a psychiatrist. Then, in 1988, we began to read of a new drug called THA, or tacrine, which was being tested as a treatment for Alzheimer's disease. I pursued this lead thanks to a great deal of urging from our son Jim. After rejections from two research centers, we connected with the Duke Memory Disorders Clinic and Cary became an experimental subject there early in 1989. He was especially valuable to the drug study since he was one of the few people in the country who was definitely diagnosed with Alzheimer's disease as a result of the biopsy done during his shunt operation. Our association with the wonderful, caring people there was a lifeline, a little spot of sunshine in the very bleak landscape of our lives. Cary's years at Duke were exciting in several ways. Being involved in the study gave him a feeling of importance and added some meaning to his life. The people at the clinic treated us like close friends, and that is how we felt about them. We both enjoyed the frequent four-hundred-mile round trips and looked on them as mini-vacations. Cary responded well to the drug tacrine, which is now commercially known and marketed as Cognex. He felt better, more alert and more able to take care of himself. Cary was told at the clinic that this drug was not a cure and that the disease would progress, but he could not help but feel hopeful.
It was during this period that Cary and Jackie began to talk about collaborating on a book about Alzheimer's disease. They talked about it on walks with Cary's dog Uni, his constant companion since she came into our lives right after the fire. They thought perhaps Jackie could interview Cary and write down his responses, but Cary found it hard to admit he couldn't do it himself.
We watched sorrowfully as Cary's ability to read and to write deteriorated. Reading and writing had been his vocation and avocation, and he was despondent over these losses, even though the tacrine was helping in general. He would sit for hours trying to read one page in a history book or he would practice writing at the kitchen table struggling to make his scribbling legible. When we visited our friends Chris and Anthony LaForgia in New Jersey in the summer of 1991, Anthony told Cary that he used a pocket tape recorder to keep reminders and shopping lists, instead of writing things down, and he suggested that Cary try to use one. When we got back home to Virginia, the first thing Cary did was ask me to dial Jackie's number. He told her he had an answer to their book project he would put his thoughts about Alzheimer's disease on a tape recorder. At first, he couldn't seem to generate any thoughts and Jackie had to ask him questions, sort of priming the pump, but very soon he just took off and "mused" or "philosophized" by himself. He wanted to be alone when he did his taping, so it was necessary to label the recorder and try to teach him to use it. Sometimes his dictation got lost the tapes are full of instances where we can hear that he had just turned the recorder on after having said all kinds of marvelous, insightful things for several minutes before realizing that the machine wasn't turned on. When I began to transcribe his dictation, I was overwhelmed by his insight into his disease. I heard things that he had never said to me or to anyone. Cary has always been a reticent person; he has rarely been able to share his feelings and thoughts with others. Somehow, the tape recorder liberated his thinking he didn't have to keep a "stiff upper lip" when he was by himself with just his recorder for a companion. We realized that he was giving us a picture of the world that is Alzheimer's disease.
Soon Cary announced proudly to the people at Duke that he was writing a book for people with Alzheimer's disease, to help them cope with the illness through the insight he had achieved by living with the disease. Cary kept the journal from the fall of 1991 to the summer of 1992 when he felt he had said all he was capable of. When he was finished he had used about forty tapes which were transcribed onto about three hundred pages. I was asked to excerpt about six pages of Cary's journal for inclusion in a quarterly periodical called the Duke Caregiver. After this newsletter was published, we began to get calls from around the country from people who were intrigued and interested in what Cary had to say.
By this time Jackie, her husband David, their son Ell, Cary and I were living in a large converted two-family house in the country right outside of Harrisonburg. We all made the move in order to be able to take care of Cary ourselves and not have to place him in a nursing home.
When The Washington Post asked to do an article about Cary for their Health section, we were told they would send a staff photographer to our home. Cary loved Nancy Andrews immediately. Their mutual love of photography created a bond between them as Nancy worked with him to get her pictures. And something in Cary reached out to her. She cried when she realized that he could no longer handle a camera or even put on his own gloves. So, the stranger who came to photograph him left the next day as a family friend and potential partner in the creation of a book.
The book progressed during the next year, and Cary sat in on all the meetings as Jackie, Nancy and I worked on editing the huge amount of work he had done. During this same time, the story in The Washington Post led to another feature in Better Homes and Gardens and then to a CNN special on the disease, "The Long Goodbye." The program was filmed in the summer of 1995 and Cary was still able to react to some questions and walk with help.
Except for the CNN filming, 1995 was a bad year for Cary. He was hospitalized four times for various physical ailments, and each time his body and mind descended to a new nadir of functioning which finally led us to place him in a nursing home.
Cary hoped very strongly that his musings would be of use to others; that he could help those afflicted to live more fully and more at peace with their disease; and that he could help others understand what it feels like to have Alzheimer's disease. My family and I hope that his legacy will reach out to you.
RUTH D. HENDERSON Harrisonburg, Virginia August 1998
© Copyright 1998 The Washington Post Company
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