The long goodbye

November 17, 1994|By Anita Hendrix

IN THE WINTER of 1980, I began the long goodbye for my father. After living on my own for some time, I had returned to my parents' home to recuperate from an automobile accident. Almost immediately I noticed that my father was acting very odd. He padded surreptitiously around the house, as if trying to be invisible. Also, he was constantly eating apples. He would come to my bedroom door munching the ever-present apple, pause apologetically, then ask how I was doing. My first day back he must have eaten 10 apples and paused 20 times at my door.

I recalled this period of our lives recently when former President Reagan revealed that he is in the early stages of Alzheimer's disease. One blessing that is likely to come from his personal tragedy is greater public awareness of this devastating disease that destroys the brain; thus, more families will understand what a diagnosis of Alzhiemer's disease means.

Looking back, I remember how little my family knew about Alzheimer's disease in 1980. If I had known more about it, I would have realized sooner that Dad had a serious problem, that he hadn't simply developed some annoying habits.

As I slowly recovered from the accident, I became increasingly annoyed with Dad's behavior. "Why was he acting this way?" I asked myself. I had known that he had become increasingly forgetful and stumbled over his words. But my mother was adept at completing his sentences and finding what he had misplaced. "He's fine, just a little forgetful," she would say. In 1980 I realized that my mother was in denial.

After my recuperation period was over and I had returned to my own home in another city, I began lobbying my siblings to help me intervene to get professional help for Dad. Eventually, my father was evaluated. The diagnosis of Alzheimer's disease left us with more questions than answers. My siblings and I were then in our late 20s and early 30s and knew nothing about the illness.

After my father's diagnosis, I began to read everything I could get my hands on about the disease. I discovered all kinds of theories were cited as possible causes of Alzheimer's, from deep psychological trauma to too much aluminum in the body. In the end, the reality was clear: Our father, an intelligent, thoughtful scientist, was losing his mind.

Alzheimer's disease has been appropriately described as "the long goodbye," because its destruction leaves family and friends feeling as if they're losing a sufferer with the disease bit by bit; today the patient may be relatively lucid, tomorrow he may not recognize anyone in his family.

My father lived for more than a decade after the diagnosis, finally succumbing last year after deteriorating to a non-communicative, near-vegetative state.

At his death, I thought of all the years my parents had lived frugally so they could save money to travel once their children were grown. My father never got to travel.

Several years before Dad died, we became concerned about my mother when she began to have frequent car accidents and had begun to forget how to cook simple meals. We couldn't believe that she, too, could be stricken by the disease that had stolen my father.

After heart-bypass surgery two years ago, she came to live with me, my husband and our two young children. At first Mama was sweet and compliant as she recovered from surgery. But over time she transformed into an argumentative and combative person. She became fixated on my then 3-year-old daughter, my mother was convinced that my daughter was actually her child. More disturbingly, she seemed to hate our then 6-year-old son. After some months of this behavior, I arranged for her to be evaluated at the Johns Hopkins' dementia clinic. The diagnosis was Alzheimer's disease.

While she lived with us, Mama rose each morning and carefully dressed. "Is it a church day?" she would ask. Now in a nursing home, her faith in God remains strong. Her loved ones grieve over the seemingly senseless loss of her essence. But one legacy of my parents is faith that even in the midst of pain, suffering and profound loss, God is still loving us. This faith gives me hope and strength.

I'm grateful that I'm still a familiar face to my mother, though sometimes she thinks I'm her sister or her best friend from college. "It's sure good to see you," she says, holding my hand. Her eyes tear when I leave. I go to my car and spend several moments composing myself, and I wonder how long this goodbye will be.

Anita Hendrix is pastor of the Hunting Ridge Presbyterian Church in West Baltimore.

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