Alzheimer’s Disease: A One-way Road

Alzheimer’s disease, which shows no apparent favoritism between women and men, is a life-changing event not only for its victim but also for everyone who has a relationship with him or her. In many ways, our family’s case was typical. I’ve tried to describe the experience in my book, and to convey some of the personal impact that Alzheimer’s disease had on each of us. The book, In Search of America’s Heartbeat: Twelve Months on the Road, is a memoir about the year that my wife and I spent traveling in search of our country and of ourselves; a road trip story in the tradition of Travels with Charley and Blue Highways.

Our road trip was a journey of discovery and loss; the discovery of America’s heartbeat -- of its soul -- and the loss of several things. One of the things we lost was our parochialism as Northwesterners. Another was my dad. He passed away while we were on the road, from the effects of Alzheimer’s disease. The disease is always ultimately fatal.

It’s hard to overestimate the impact of Alzheimer’s disease in the United States. Some 4.5 million American families are living with it at any moment, according to the Alzheimer’s Foundation of America. The number has more than doubled since 1980, and it continues to grow. Every 72 seconds, according to the Alzheimer’s Association, someone new develops the disease in the United States. When you include all the Americans who have experienced the effects first-hand of Alzheimer’s disease on themselves, a family member or a friend, Alzheimer’s disease ensnares untold millions.

In a lot of ways, Dad’s case was typical. He had reached his late 70s a healthy and vibrant man after a successful life as a business executive in New York. His training was in accounting, and he’d worked on Wall Street as an officer of several corporations. It was high-powered work well executed by a man of strong intellect. Little by little, however, those of us closest to him began to notice what appeared to be a slowly increasing uncertainty on his part. It was out of character for him. He’d sometimes ask the same question several times in the space of a few minutes, as though he didn’t trust our answer and wanted to confirm it.

My reaction typically was annoyance.

Why doesn’t he pay attention, I’d wonder. Does he think I’d give him bad information? He still drove a car, still balanced a checkbook, still carried on an apparently normal conversation. But little by little, over the next few years, his problems with the everyday details of life increased. He’d go to run an errand, and after leaving the house would forget sometimes what the errand was. He’d forget recent conversations and events, and would take longer and longer to recognize some of his friends. More and more often, he’d be unable to retrieve a particular word that he wanted to use.

It must have been frightening to be in his shoes, to see his life skills slipping away. His mother had died of what we now believe was early onset Alzheimer’s, the kind the strikes before its victim turns 65, although it wasn’t diagnosed as that back then. My parents, my sister and I moved into my grandparents’ home to help Dad’s father care for his wife. In middle to later life, Dad often expressed fear that the same disease would claim him; that he would lose not only his life, but also his dignity, the way his mother had.

Eventually, dad’s personal physician rendered a diagnosis: early stage Alzheimer’s disease. Most of our family was shocked. Our mother was not. Apparently, she had suspected.

Surprisingly, when the disease finally struck him -- in its initial stages, when he still had enough awareness to realize what was happening -- he never discussed the subject with us. It’s hard to say whether he was in personal denial or whether he was trying to protect the rest of us from the truth. For a long time he was fairly adept at pretending that life was normal, even as the Alzheimer’s disease progressed.

We observed Dad more critically now, and we could detect his continued decline. We never discussed the doctor’s diagnosis with him, and he continued to try to fight the disease’s effects. The day came soon, however, when our family realized he no longer was fit to operate a car. My sister asked Dad’s doctor to tell him that he shouldn’t drive, and the doctor did, telling Dad he was “too old” to do it anymore. To our surprise, Dad acquiesced. Apparently he was ready. But his pretense at normality continued.

Then came the day that I sat talking with Dad in my sister’s living room -- not a heavy discussion, but the kind of patter you might share with a cocktail party acquaintance.

“And where did you go to school?” Dad asked.

A chill shot down my spine. I realized for the first time that he had no clue who I was. I, his only son. He remembered his childhood dog, and he knew the dog’s name. But he didn’t know mine. Didn’t remember, in fact, that he had a son at all. It was then that I realized how skillful his acting had become.

Millions of people have been where I was that day. We share a kind of grief that’s hard to describe. Life being what it is, all of us know that someday we will lose everyone we love. Everyone. Without exception. Or they will lose us. But with Alzheimer’s disease, we may lose them twice.