"Alzheimer's disease is a progressive, irreversible and fatal brain disease recognized as one of the most devastating maladies of all time". Why are so many people fascinated with Alzheimer's Disease? Because it is not only a disease, but a prism through which we can view life in ways that are normally unavailable to us. Through the Alzheimer's prism, we can experience life's constituent parts and better understand its resonance's and quirks. As the disease relentlessly progresses toward the final dimming of the sufferer, it forces us to experience death in a way rarely experienced. "What is usually a quick flicker, we see in super slow motion, over years". It is more painful than many people can even imagine, but it is also perhaps the most poignant of all reminders of why and how human life is so extraordinary.
I was never really close to my father, in fact as I grew up, we grew apart. He was always busy doing something, anything except spending time with me. My teen years passed by in the wink of an eye and soon I was an adult with responsibilities of a family and career. I was now the one too busy doing things, anything, to spend time with my father. Like the song "Cats in the Cradle", I had grown up to be my father. As the years tumbled on, my relationship with my father grew even more distant. I would call him occasionally and when my mother answered the phone, I would ask to speak to "him", not my father, just "him". My mom would say "him?, he is your father you know". I knew he was my father but for some unexplainable reason, I couldn't bring myself to call him by the moniker he so rightfully deserved. I would, however refer to him as dad when talking to friends. The calls I made to my father usually had an ulterior motive behind them concerning the acquisition of money, tools, or manual labor. Neither of us would call just to say "hello". Neither of us would take time from our pretentious schedules to stop and visit. Neither of us realized the precious time being wasted or how little time we actually had left. Neither of us seemed to care.
It was the year 1996, my parents were living in California and my father decided to take a train back to Illinois to visit with friends and wrap up some details on his former residence. My parents had never seen their newest grand child and when I learned that my father was coming back to Illinois, I hoped he could find the time in his busy itinerary to stop by for a visit and to meet his grandson. I wonder now, as he prepared for the trip, if he reminisced about his early childhood escapades, memories of his fathers farm, driving his semi or romantic adventures? Did he plan to rekindle a lost relationship with his son? Or was it just a simple trip to get away for awhile? I'm still not sure. Somewhere along the way, as my father rode the train, he stumbled while makkng his way to the restroom and fell. He apparently became disoriented and confused. My father explained later that he had hit his head when he fell but was "OK". He went on to say that there was an open coffin in the train car he was riding in and that he became frightened and pulled the emergency cord to stop the train. I assume that the train personnel recognized that my dad had a problem and felt sorry for him but at the next train stop they escorted him from the train and made arrangements for a bus to continue his journey. My father's trek continued uneventful until somewhere in Missouri when the bus stopped for servicing, my father quietly exited the bus and started walking down the interstate. Luckily alert passengers notified the bus driver who was able to convince my father to return to the bus, the driver also asked my father for his phone number in order to speak with my mother concerning the situation. After learning the unsettling news, my mother called me to pick up my father at the St. Louis bus depot. My mother trivialized the incidents and the extent of the situation so I arrived at the bus terminal with high expectations of spending some quality time with my father, but that was not be.
The bus soon arrived and my dad was led off the bus by the same kindly bus driver that had rescued him from walking in the road earlier. The sight of my father emerging from the bus caused a flood of emotions to come crashing down on me. The need for his approval and acknowledgment was all that I sought, but the emptiness in his eyes was like a cold slap in the face by reality. He walked towards me cautiously and I wondered if he even recognized me. He smiled and shook my hand. He said "glad to see you" in a dusty voice that showed his age. Who was this man and what has he done with my father? After a few days of recuperating from his ordeal, he became a little more focused. He refused to talk about the trip and appeared slightly unnerved by the whole thing. During the next week, I was able to spend time with my father by driving him around to his past haunts seeing old friends and places he seemed to remember. Some of his friends acted like my father had a contagious disease, others greeted him warmly. It was like he was trying to recapture the past and file the memories away for later. Occasionally the dark cloud of confusion would sweep in and engulf my father. My dad's prism was becoming more prevalent and soon he would become imprisoned within it. I compared my fathers thought process to trying to hit a golf ball through a chain link fence, sometimes the ball would get through, but not very often. After a week, my father returned to California with a friend of the family that drove from California to personally make sure he got home safely.
Four years went by and my dads condition worsened. My mother seemed blissfully unaware of the dementia slowly devouring her husband of fifty years. Maybe she realized what was going on but didn't want to admit that she was losing her soul mate one brain cell at a time. Finally my mom accepted the truth that something was really going on with my father and asked my assistance in moving them back to Illinois, a task I readily agreed to. I arrived in California not knowing what to expect, but expecting the worse. I helped them prepare for the long trip back and tried to recall days long ago when my father was a vibrant, active man that could work all day long and drink the evenings away, the life of the party. Where was that life now? There was still no closeness, no hugs or kisses, no "I love you" for me, just routinely boxing up things and trip preparation. I felt empty as I looked at my parents and wondered where the time went. I kicked myself for wasting all those years without getting to know my own parents, was it too late?
Driving my parents mini van with their meager possessions across the country on a four day trip was both enlightening and frightening for me. We talked, we laughed and I cried when I witnessed my father slip further into his own mind. Like chasing an elusive butterfly, my father would chase words to complete a sentence but the words often eluded him. He struggled to finish a story and had a bewildered look of frustration and embarrassment when he was unable to do so. The cruelty of Alzheimer's Disease attacks the family members of its victims with devastating accuracy and I became very aware of this during our trip. At the lowest part of the trip home, my father spoke fondly of his only son Laine, then asked me if I knew him! At that moment my heart exploded and tears flowed uncontrollably.
My dad was taking a glorious journey to the past, but he was leaving us all behind. Was he recalling his Army days or his wild and crazy adventures in California after returning from the war? He shared little quips of stories with me throughout the years, basically just short one-liners about being able to do this or that as a young person. Tales of working two full time jobs, chasing the girls and drinking with the boys. He would bask in the knowledge that he lived a full life, a life of memories transforming into a blur between then and now. The veil that was lifted from his past was covering the present and making his future a thing of the past. The four days I spent with my father was my farewell to him. I knew how the disease would progress and I knew that I had I to hold onto every particle of memory that I could. I needed to plant those memories deep into the inner recesses of my mind, somewhere that disease could not ravage in my inevitable future. I had to remember the good times and forget the bad. I needed to banish the broken dreams and strive to accomplish new ones. Finally, I had to help my father shed the chains of the present in order to travel unencumbered into the past.
Alzheimer's disease is a mental confinement of sort. The victim is incarcerated within the collapsing neural networks that have taken a lifetime to construct. Through the vacant windows of their souls, people with Alzheimer's gradually forget what they know but start remembering what they thought they forgot. The disease shields its' victim in a coccoon of forgetfulness while destroying their loved ones around them. Many years have passed since it became apparent that something was "just not right" with my father. He became more and more confused and combative. He became more than my aged mother, his wife and companion of 60 years could handle. At the advice of his physicianand wkth my mom's approval, my father was placed in the Alzheimer's unit of a local nursing home. I'm ashamed to say that I never could bring myself to go and see him at the facility. I managed to get as close as getting on the elevator at the nursing home, but I wasn't able to go through with it. I rationalized my decision by telling myself that he didn't know me and I wanted to remember him as he was. I have made peace with that choice. My father passed away a few years later nd shortly after my mother did. Ever since that time, I have been looking over my shoulder, watching for the specter of Alzheimer's to appear. With each turn of the prism, each forgotten word, each minuscule lapse of memory, I feel its cold grasp reaching out to me, welcoming me back to a distant past, a time without pretentious schedules to fulfill, a time without responsibilities, a time to finally share with my father.