A YEAR AGO last January my father, a former administrative engineer at an aerospace corporation, lost his sense of balance overnight and had to be hospitalized. The doctors ran many tests and could not figure out what had happened. They could give him no treatment, and we were afraid that he would not recover. But his balance did come back slowly.
After he had been in the hospital several days, we were told that one of the tests, a CAT scan, had revealed a serious, apparently unrelated brain disorder. Dr. Beame, the hospital doctor in charge of my father's case, phoned Mom at the school where she teached to tell her that her husband's brain had deteriorated to the point where it was "watery," and that there was nothing that anyone could do about it. She began to cry, lost control of her voice, and could not finish the conversation.
It was not until several days after that phone call that Mom managed to get in touch with the doctor again, even though she tried repeatedly. She bumped into him in the hospital hall, and he told her briskly that he had no idea what had caused the dizziness, Dad had "diffuse cerebral atrophy," there was no treatment, and he had no idea how long he would live. He told Dad the same things just before he released him, and Dad came home very depressed, convinced that he was rapidly dying. He went on extended sick leave, although no one expected him to return to work.
Mom told me what little she knew over the phone, long distance from Ohio. The more we talked, the more we realized how many unanswered questions we had. She told me that she would make an office appointment with Dr. Beame for a family conference, and my husband and I prepared to drive out to Ohio from Washington.
"I don't know why you came all the way from Washington to see me," Dr. Beame said. "I've already told your mother everything I know." I told him I had a long list of questions that she had been unable to answer, and I began to read from my list. Mom and Dan, my younger brother, added questions of their own as we went along.
"Is there a name for what my father has? I've never heard of 'diffuse cerebral atrophy.'"
"No, there's no name for it other than senility."
"What causes it? A nurse that I talked to said it could be caused by arteriosclerosis."
We found no evidence of that in this case. We don't know what caused it."
"Is any research being done on it? Are there any experimental treatments?"
"I can't understand that. My father is only 60. This sort of thing attacks a relatively young man, and no one's interested?"
"We get all the journals here at the clinic. If there were any research being done, we would know. Take my advice -- I know it's difficult, but try to accept this situation. It will be easier for the whole family if you do."
"How can we help him to deal with this? Should he be seeing a psychotherapist?"
Dr. Beame gave me a you-still-don't-understand look and leaned back in his enormous chair. After a moment he spoke: "In order for a person to benefit from psychotherapy there has to be some mind there. Your father is senile."
As the three of us walked across the icy parking lot to the car wondering what to do next, I was very conscious of the fact that Dad was missing and would not ever really be with us again.
After Dad had been home from the hospital a couple of days, he was able to sit up for fairly long periods. Mom and I thought that it might cheer everyone up a little if we showed slides of the family vacations.
Every summer when my brother and I were growing up, Dad and Mom would load up the station wagon and the trailer, and we would travel and camp. Dad did all of the driving, maneuvering our rig easily through rush-hour traffic on the Tri-State in Chicago and along the edges of cliffs on Going-to-the-Sun Road in Glacier National Park.
The slide show seemed to work. Pictures of Dan as a chubby preschooler were creating the customary responses in his new girlfriend, and seen we were all laughing. But when a particularly bright slide flashed on, Dad moaned and slumped over. He could not explain what had happened and seemed disoriented. All we could do for him was to help him into bed.
Back in my office in Washington the following Monday morning, I began to make calls to try to find some information that might help my father. Perhaps it was true that nothing could be done, but I needed to understand as much as I could.
One of the first places I tried was the National Institute on Aging at NIH. I was put in touch with a woman who knew about research being done on neurological disorders associated with aging. She listened sympathetically as I told my story. I described the symptoms -- gradual loss of memory, disorientation, slow speech -- and gave her the term the doctors had used, "diffuse cerebral atrophy." She said, "That sounds as if it might be Alzheimer's disease. We are in the process of making up a booklet about it now. Would you like a copy of the manuscript?"
I told her I definitely wanted a copy. Then I asked, "Is it true that there is no treatment available and that no research is being done?"
"The disease is not curable, but research is being done and experimental treatment being offered in a number of places. Where does your family live?"
I told her and she flipped through a directory and said, "There's a research program going on now at Ohio State. Let me give you the phone number."
Alzheimer's disease comes on its victims very slowly. When we started thinking back over the past years, we realized that Dad had shown symptoms as far back as 10 years ago. From 1968 to 1971, our family lived in Indonesia; Dad was the director of engineering at an American-owned tire factory there. In 1970 we spent part of our home leave in Hawaii, where my parents had lived in the '40s, and Dad rented a car to show us around the island of Oahu. He had trouble braking smoothly, drifted into adjacent lanes of traffic, and sometimes came to a complete stop at green lights. In Indonesia we had had a native driver for the company car, so we decided that Dad was having problems with his driving because he was out of practice.
But after the family moved back to the States, Dad's driving got worse. His drifting from lane to lane was the most noticeable problem. He had his eyes examined at our insistence, but the doctor could find nothing wrong. More recently, we began to notice other problems in his driving. He would have a hard time deciding which toll booth to go to or which parking space to choose. Whenever I mentioned these problems to him, he would always say, "There's nothing wrong with my driving." He had physicals, and nothing ever turned up. None of us could imagine what the problem might be, but Mom began to do more and more of the driving.
Another symptom that came on slowly was memory loss. As early as seven or eight years ago he began to complain that his memory was not what it used to be because he was getting old.
The list of unexplainable symptoms kept growing longer. In December 1978, less than a month before my father's attack, my family came out to spend Christmas at my house. Mom told me of some more disturbing changes in Dad's behavior. Dad had always been a handyman. He was a skilled carpenter and mechanic and had built the house that my parents were living in when I was born. But he had recently become reluctant to do repair jobs around the house and had stopped working on the 1920 Buick he had been restoring. He had begun to spend a lot of time sitting in his chair, staring straight ahead. I said that I wondered if Dad might be depressed and suggested that maybe he should visit a psychologist. But even though I had noticed the staring, I could not believe that the problem was depression; whenever we talked, he seemed as cheerful as ever.
So why, in the face of all the indications, did we not know that something very serious was wrong? I suppose that there are a number of reasons. One important one was denial; we did not want anything to be wrong with Dad, and so we tried to a certain extent to act as if the changes in his behavior were not happening. In additon, the changes came so gradually that we managed to accept as part of his personality those that we could not ignore. He had always been a quiet, introspective person, and so in some ways these changes seemed to be merely a deepening of traits already in existence.
Another important reason was that we had no idea that something like Alzheimer's existed. Although the disease affects at least 1 million Americans and is on the increase, few people besides the victims and their families have ever heard of it. Dad was exhibiting the traits of an old man, but he was not that old. It made no sense.
When Mom called the Ohio State University number that I had been given, she found that the list of people waiting to get into the Alzheimer's program was long. She got an appointment for Dad to go down in July for a week-long series of tests given under the direction of Dr. Leopold Liss.
The tests indicated that my father did have Alzheimer's, and he received his first experimental treatment that week. On Monday, Tuesday and Wednesday, he was given large dosages of tetracycline, an antibiotic. The tetracklycline chelates -- or removes -- aluminum from the body. Researches have found larger-than-normal amounts of aluminum in the brains of Alzheimer's patients. They do not know if this aluminum is one of the causes of the disease or if its occurrence is simply a related effect. But some have theorized that this buildup causes the neurofibrillary tangles -- accumulations of abnormal nerve fibers -- that are one characteristic of the disease. (Another characteristic is plaques, which are areas of cell debris.)
Aluminum comes into our system in many ways. It is the most abundant metal in the earth's crust, and it is in most of the food we eat. We cook in aluminum pots and pans, wrap our food in aluminum foil, and take headache and indigestion remedies that contain aluminum. Why aluminum builds up in the brains of some and not others, researchers do not know. Dr. Liss tells me that most people are probably resistant to its neurotoxic effects, otherwise the human brain could not have evolved as it has. But there seems to be a genetic predisposition for the disease in some families wherein the resistance mechanism breaks down or is absent.
So far, Dr. Liss has not noticed any improvements in the memories of patients who have been taking tetracycline. The organic damage has been done, and there is no hope for its reversal. The hope is that either by chelating aluminum's entry into the system with the use of fluoride (a new line of research), the progress of the disease may be slowed. Dr. Liss emphasizes that tetracycline is being administered to Alzheimer's patients as a way of determining the role aluminum plays in the disease, not as a cure.
Other researchers are proceeding on the premise, backed by considerable evidence, that Alzheimer's is caused by a "slow virus." Still others have noticed that there is a striking reduction -- as much as 90 percent -- in a certain brain enzyme, choline acetyltransferase, that is involved in the passage of nerve signals. Lecithin, the dietary source of choline, is being given in an effort to raise the brain levels of that enzyme in much the same way as Parkinson's disease is treated with L-dopa. Since lecithin is available to anyone in health food and drug stores, many Alzheimer's patients, my father included, are taking it on their own.
In paper after paper on Alzheimer's, researchers mention needed investigations: systematic clinical studies on the therapeutic use of choline; explorations of the epidemiology of aluminum intoxication in factory workers and miners; comprehensive familial studies, and so on. But funds are very limited, partly, I think, as a result of the long-standing tendency in our society to ignore the problems of the aging.
It is now a little over a year since my father's attack. I am home, in Ohio, as I write this. I have been able to take some time off from work to come here and help out a little.
Dad never went back to work. He retired on disability. We learned later from his boss, Tom, a longtime friend, that Dad would move, distracted, from task to task all day, leaving each uncompleted. Tom talked to him, but could not find out what was wrong. So he kept hoping that whatever the problem was, Dad would work it out. Dad still has not cleaned out his desk; he says he is too embarrassed to go back.
My mother has had to take over the management of the family finances. She found his books in very good order, but knew that it had taken a tremendous effort for him to keep them that way. She often sits at his old rolltop late into the night, paying bills, filling out piles of forms for insurance and retirement, and keeping records and studying booklets for the income tax preparation that she dreads. There are important decisions about their future to make, and she has to make them almost alone. She teaches at a nearby school during the day. It is close enough so that she can come home for a few minutes at lunchtime to check on Dad.
While I am here, Mom and Dad and I will go down to Columbus for a family support group meeting. In addition, Mom wants to talk to someone at the state teachers' retirement headquarters about the possibility of retiring early. She's only 56, and everyone has told her that it would be foolish financially, especially since in-home nursing is very expensive and Medicare will not cover it. But she wants to spend these days with Dad and perhaps travel, while he still can, because, as she told me, "Now is our future."
These past few days that I have been home, Dad has told me of so much he wants to do. He has stacks of old 78 records that he wants to catalogue. He showed me a tablet that he had started copying the titles down on, but he only had about six listed and then something else in the cluttered basement must have caught his eye. He told me wistfully, "My attention span is so short." So he goes haltingly from job to job at home, very much as he did at the office.
My father has continued to maintain levels of physical and mental operation that surprise his doctors, given the physiological state of his brain. He understands, but is hard put to make himself understood and often forgets what he is talking about in the middle of a sentence. He can read slowly and has been following the primaries and the situation in Iran, but he cannot remember what year it is or why, at the kitchen counter, he is holding a knife with jelly on it.
He's still himself in many ways -- still kind and good-natured and even still a bit of a handyman. A few days before Christmas, Mom heard the drill in the basement. She was a little worried, but resisted the urge to investigate. On Christmas Eve we opened our presents. One small, heavy one was for my brother Dan and obviously from Dad because he was beaming as Dan opened it. I had a feeling that it would be a good present, and it was -- bookends fashioned by Dad from matching wood-encased coils that he had resurrected from an antique Ford.