Op-Ed

Alzheimer's: Cost of doing nothing greater than cost of research

Andrea Kay, of Ft. Thomas, is a writer, artist and creator of Flutterby, performance art that helps people understand how to spend time with people who are dying. Reach her at Andrea@andreakay.com.
Andrea Kay, of Ft. Thomas, is a writer, artist and creator of Flutterby, performance art that helps people understand how to spend time with people who are dying. Reach her at Andrea@andreakay.com.

Thanks to some dedicated researchers, we are closer to understanding why Alzheimer's strikes and how it progresses. And just maybe, we're closer to coming up with a way to slow down this merciless disease. But it's not nearly enough to curtail the billions of dollars that will be spent to care for Alzheimer's patients each year and the deaths of millions.

I'm petrified of Alzheimer's.

Like many in my generation, I have a parent who died of it. I wonder if I'm next.

No one knows how to prevent or cure this disease which eventually takes your life. I only wish my father had lived long enough to possibly benefit from some of the latest research, which indicates people with high cholesterol are more likely to get the disease and that inflammation is a part of the disease process.

When my mother told me my father had the disease, I wasn't sure how to be with him. There just isn't a manual.

As the disease progressed and my father became less the person I knew, I wondered how much time we had left to be together. Was I too late?

He'd stare at me. I'd stare back. I wanted to remember everything about his face. I wanted him to know what he means to me. I asked him if I could draw him. He nodded, yes.

So every week, I visited him with my drawing pad and dog. And with each visit, I embarked on a journey that would change my life.

I wrote down things we said to each other as I sat across from him in his lift chair.

"Look, there's a butterfly outside your window," I pointed out one afternoon.

"Flutterby," he said. "That's what you called them when you were little."

"Thank you for remembering that," I said. "Thank you for remembering I am your little girl."

The next time I drew him, his eyes were different. Sad and knowing. Deeper lines between his eyebrows. Something was coming closer.

He had pulled his bed sheet up to his right cheek as if trying to hold on. Or keep something away. He didn't speak.

Visit by visit, his body became smaller. He withered away with each turn of the page in my sketchbook. The brightness in his eyes and mind dimmed more each time.

Seventeen days before he died, I stood in the doorway of the room where he sat day and night, to say goodbye. He didn't want me to leave. I didn't want to go.

I waved. He waved back. I threw him a kiss. He barely moved his lips.

This time together pulled me into him in a deep and intense way. Beholding each other. Noticing and mentioning details in the room or outside the window. It made me see that the only time I had was right now. Experiencing that has changed how I experience everything since. I decided to publicly share my artwork and words which evolved into a body of work that is visual art and performance art. I call the work Flutterby.

I cherished the time with my father in this labor of love. While our legislators are looking to rein in costs and view medical research as discretionary spending, funding is well worth the return on investment. When you look at saving nearly $200 billion per year it costs to care for patients or the priceless life of a loved one, finding medical breakthroughs must be a priority.

I wish Alzheimer's was a thing of the past. But until we do know how to stop it, I thank these dedicated researchers for their work. And I keep hoping our legislators will not only pay attention to the toll this horrible disease takes on families, but the toll it takes on our economy. The time to pay attention is now.

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