My father was diagnosed with dementia in April of 2012 at a neurologist’s office in Perinton, NY. It was a meeting that my dad wanted no part of but my mom did not give him an option a few days earlier- “Terry (my dad) you’re going! It’s important to me (my mom) and Patrick (my older brother) and Michael (me) will be there.” So all three of us and my dad went to the long anticipated appointment.
The doctor put him through a battery of tests while we were all present- from memory recall to spatial drawing on a piece of paper. In one question/answer the doctor asked my dad if he knew what year it was- “2002” my dad stated without hesitation. It was truly awful. The doctor confirmed to us what we already suspected and knew. In the doctor’s expert opinion my father was already way far along with the disease. Moderate to advanced stages I think were his chosen words. The diagnosis although difficult to take was not the worse part of the entire ordeal. What was harder for me to deal with that day was seeing my dad traumatized. My dad at the time was still aware of things enough to try and voice his deep displeasure and dislike for the neurologist. And he did so unabashedly to the neurologist’s face. He felt attacked. He felt duped. I couldn’t blame him. But my dad was incapable of putting up an adequate verbal defense; he was instead attempting to communicate his thoughts with words and sentences totally out of sequence. At moments he was unable to find his words at all. That’s dementia.
After leaving the office, my brother and I were assisting my dad in getting in my parent’s car- buckling a seat belt at this point was a nearly impossible task for him. As we were shutting his car door my dad said something to us I would never forget because it was totally unexpected considering all his communication troubles in the doctor’s office moments earlier. He said “thank you for coming with me today.” I smiled, hugged him, told him I loved him and said “I wouldn’t have missed it for the world.” I then turned, parted ways with my older brother, hopped in my car and broke down. I didn’t get upset because my father was finally clinically diagnosed with dementia, it was because that gratitude he shared was totally unnecessary and out of left field. The comment reflected a graciousness in my father that was always present, but was often masked because of the disease. I got of glimpse of my old dad if only for a few seconds and given the emotion and circumstances of the afternoon it all came out for me.
With his words I remember feeling at the time an overwhelming sense of shame and guilt because in that moment of clarity perhaps my dad thought his doctor’s appointment, his disease was keeping us from our “busy” lives, that he was keeping us from doing something else- anything else. Which is ridiculous. Where else could I have been that day that would possibly have been more important? But that was my dad. He never wanted to ask anything of anybody and certainly did not want to be a burden dementia or no dementia. It’s crazy on the one hand I was completely blown away and moved to tears by my dad’s fleeting cogency, but then on the other also keenly aware that some thirty minutes or so earlier, my father was off by a decade when it came to the correct calendar date! How is that possible? He seemed aware one moment and totally gone another. Just one more reason why dementia is so relentless.