The Longest Day 2018
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Marilyn's Story
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Waldorf, Md.

In memory of my father Jose.

I was 17 years old, about to graduate from high school and completely excited about where my life was going. I had BIG plans to go off to a college away from home, be on my own for the first time, have the experience of living in a dorm, the parties, make new friends for life, and finally, conquer the world!

Three months before my graduation, my father was diagnosed with Alzheimer’s disease. Suddenly, my dreams and aspirations quickly came to a halt. He was only 52 years old, and I was only 17 years old. How could this be? Well, it just is. It is no longer the “old-timers disease” it was once perceived to be.

He was fully diagnosed at age 52, which means it had been present for some time; we just didn’t know or fully realize it. And how could we? He was still so young. Not a single one of us saw this one coming. Sure, now that I look back I can easily say that there were signs. He was forgetful at times, confused easily and often disoriented. But he held a stressful job, had a lot of responsibility, worked long hours and he was exhausted. On went our excuses and dismissals of his odd behavior until finally, we had to face what was really happening to my father, the man of the house, the core of our family.
By the time I turned 21 years of age, I had remained at home and was now changing my father’s diapers. I was commuting in the early mornings to our state university while my mother cared for my father. When I returned from school, my mother would go to work, and I would care for my father. Often, while I attempted to study, my father would attempt to wander out the front door. On many occasions, he was successful and wandered off into the night. The police soon became familiar with my father, his condition and his wandering state. Eventually we were forced to place key locks on all the doors. We became prisoners in our own home.
As time went on, his care became too much for my mother and I to handle. At age 24, I traveled daily to the local nursing home to be with my father. I would sit with him and feed him his dinner. Often he had no idea who I was and would refuse to come near me; it was absolutely heart breaking. Other times he wouldn’t want to let go of me, nor I of him, as visiting hours would come to a close. Within two years, he had become completely debilitated and had lost his ability to speak. He remained in this state for nearly two more years, until one morning, we received the phone call that he was gone.
During the last year of my father’s life, my mother was also diagnosed with Alzheimer’s disease. I couldn’t believe my ears when I sat across the desk from our neurologist. He was the same neurologist that had diagnosed my father 10 years earlier. It was hard enough losing my father to this disease, but now I’ll have to face it again with my mother. She was the strength that enabled me to carry on with my father whenever it became really tough. Now here she sat at age 54, staring into the eyes of the same doctor that she once sought solace in, facing the same toil as her husband.
Two more years have now passed. I am seeing my mother emulate all of the behavioral traits that my dad displayed during his tenure with Alzheimer’s disease. I am now slowly approaching my 30th birthday. As I sit here and write “my story”,  I realize that nearly half of my life has been spent wrangling with Alzheimer’s disease. That’s unbelievable. Luckily, my mother will be by my side when I hit the big 3-0, but will she realize it. She has no idea what year I was born or what month. Ironically enough, I was born on Labor Day. My mother literally went into labor with me on Labor Day. Easy to remember, right? Not for my mother, not anymore.
Every moment with my mother is extremely precious to me. Every moment that I shared with my father was extraordinary. The one beautiful thing about this disease is that I was able to experience every aspect of my father’s being. I experienced his childlike playful side of him, the romantic side of him, the vulnerable side of him and the fighter in him. I will again experience all these things with my mother, and I’m grateful for it all. 


Alzheimer's Association

Our vision: A world without Alzheimer's disease®.
Formed in 1980, the Alzheimer's Association is the leading voluntary health organization in Alzheimer's care, support and research.