My father, who passed away last August, wouldn’t have done well with the pandemic. We wouldn’t have done well with him in it. Diagnosed with Lewy Body Dementia, he spent much of last spring rotating through states of confusion, paranoia and intense irritability.
He was a far cry from the easy-going man who always had a smile and words of encouragement for all who crossed his path-especially my three sons. After fifty years teaching and coaching at high school in Astoria, Queens, working with adolescents was a calling he loved and could never leave behind.
Dad’s dementia was challenging for everyone
When my parents visited us, dad would wander through our home incessantly checking ‘the hallways,’ opening and closing doors and cabinets, asking why the students (his grandsons) were not in class and growing increasingly concerned that they were going to be late for practice. Thankfully the boys, 16, 14 and 12, had practices of their own to make, school to attend and friends to see, which mitigated the effect of his repetitive behavior and line of questioning.
When confronting the loss of a loved one, distractions help. Maybe that applies to one’s own demise as well. Having spent his life on the move, an inexplicably large set of keys forever jingling in his pocket, Dad could not fight the sense that he had something to do and somewhere to be. In an effort to pacify this inclination, my mom, his wife of 51 years, would drive around with him for hours listening to country music and take him on prolonged trips to the grocery store. He was in charge of pushing the cart.
Hallucinations offered a different set of diversions. Dad spent a good deal of time worried about ‘the children’ he saw playing in the driveway, running up and down the staircase and sitting in the back of the car. My sons thought it amusing at first. Pop-pop always liked to tease, they reasoned, maybe he was joking around like he always did.“Pop-pop’s just confused. Sometimes your brain plays tricks on you,” we told the kids and ourselves before we received his diagnosis and other symptoms began to emerge.
Gradually the man with endless reserves of patience would erupt at minor changes in schedule, at the boys’ loud and physical interactions – sometimes for no reason at all. The former college basketball stand out who played horse with them for hours transformed into a grumpy grandfather who had no time for his grandsons’ horsing around. “They need to be told what’s what.” “Dad, they’re just kidding around.”“Pop-pop’s so angry all the time.” “No that’s not really him. He loves you.”No one could be convinced. Like all families that struggle with dementia, we navigated rough patches.
We were lucky that at the end Dad mellowed
But we were lucky toward the end that the anger began to subside and his softer side reemerged. He continued to mistake the boys for former students and players, but somehow he began to mellow – and they did too.
My dad spent much of his last months with us. Unclear on specifics most of the time, he accompanied us to basketball games, spring concerts and Sunday mass. He sat around the dinner table and listened to our stories content and comforted by familiar voices and rituals. At times he’d try to contribute in largely nonsensical phrases, but my sons listened and tried to follow along.
On their last visit to see him the boys fumbled for something to say. Words don’t come easily on an average day. Though alert, Dad could no longer speak. I tried to bridge the gap with highlights of their summer sports, but all efforts fell flat. Then my oldest son spotted a basketball in the corner of the room. He handed it to my dad who smiled and gripped it like he wanted to take off for a breakaway. Muscle memory kicking in, he palmed the ball and held his arm out to one side, daring them to steal.
The boys convinced him to toss it back as I watched them play with the coach who had taught us all how to make the perfect lay-up, foul shot and fade-away. They say that dementia patients often experience a breakthrough of clarity toward the end. For a few moments that afternoon my father was all there. Today it feels like a miracle that we could be too.
As this virus inflicts fear in every touch and separates families from themselves, I am most grateful for those moments and those months. It was a time you never want or hope to spend with someone you love, but, like so many families now forced to connect in new and meaningful ways, it allowed us all, especially three adolescent boys, to learn an awful lot about love.
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Eileen Flood O’Connor is a writer and mother of four, the oldest of whom has an autism spectrum disorder. She writes often about parenting and the joys and challenges of raising a special needs child alongside three ‘lively’ boys.