Despite her dementia, my Mom is still teaching us how to live and how to love

“Now which one is she? Who are we watching?” my Mom asks as we sit in a small patch of shade next to a baseball field. The blistering sun fills the summer sky as we watch ten-year old girls round the bases and kick dust into the air.

“Izzy is on second base, Mom. She has on bright orange shorts. There she is,” I point in the direction of my daughter so my Mom can identify her. I’ve pointed her out five times in as many minutes, but Mom’s dementia, the progressive cognitive decline and memory loss she experiences as a result of Alzheimer’s Disease, makes it harder and harder for her to know what is going on in her world at any given moment. We refer to my Mom’s ability to know what’s going on around her as ‘tracking.’ Some days her mind registers her surroundings better than others. As I sit next to her on the bleachers that evening, I realize she is not tracking.

“Oh, I see her! She’s the cutest one, isn’t she?” Mom says and smiles wide. She adjusts the brim of her baseball hat, her short hair messy underneath. She’s dressed in tan shorts and a patterned blue t-shirt, nothing stylish or trendy like she might have worn even five or six years ago. Now she wears what’s comfortable, what is easy to find in her closet. Mom doesn’t get upset that she needs constant reminders to follow the world around her. She doesn’t get frustrated or angry. Her mind doesn’t register that she’s asked the same question over and over and over. My Dad’s selective hearing has long been a family joke, but as Mom’s primary caregiver, he’s had to change. His patience expanded, he found another gear. He has enough strength for both of them.

The air is thick and muggy and a thin film of dirt and sweat cake my skin, but there’s no where else I’d rather be. The canceling of last year’s baseball season due to Covid-19 was hard on my kids, maybe even harder on their grandparents. Quality time together in my family has always revolved around sports. Over the past year I worried that my Mom’s disease would progress while we were waiting out the rise in infection rates. Every year, month, week, and day we have with her is precious.

“Where’s your Dad?” Mom asks and then she quickly locates him, “Oh, there, by the fence. He has to coach every minute!” I look towards the third base line, to where my Dad is pacing along the outside of the fence, standing as close as he can to where Izzy is playing in the field. He cups his hands around his mouth and shouts instructions. Izzy turns and gives a small nod in his direction, then adjusts her pink visor and flips her ponytail.

“Okay, who are we watching now? Which one is she?” Mom asks again and I point towards second base.

“There’s Izzy Mom, on second base, orange shorts. She just caught the ball!” As if on cue, Izzy looks towards us and waves, holds up the ball in triumph.  

“Oh, good job!” Mom claps and cheers, her eyes focused on the ball field. I wonder if my Mom’s not tracking tonight because of the heat, or because she’s always more tired in the evenings. I wonder if her disease has progressed just a little more and I’m only now noticing.

Later that night we switch to another baseball field in the same sports complex to watch my son Charlie play. My Dad stalks the sidelines while Mom, Izzy, and I sit in the bleachers.

“Good throw Charlie!” Mom says as Charlie jumps up from his crouched position behind home plate and fires the ball towards second base. It’s perfect that Charlie plays catcher and stands directly in front of us on the bleachers. Mom and Izzy share a bag of popcorn and talk about everything and nothing.

“Gram, do this,” Izzy says and dances and slides across the top bleacher. Laughing, my Mom shakes her shoulders and attempts to mimic Izzy’s dance moves. They burst into a fit of giggles and fall into one another, my Mom’s arm coming around Izzy’s shoulder for a hug. They are both present in the moment, unburdened by worry or life’s complexities.

“Not like that, Gram. Watch again,” Izzy says and repeats the sequence of dance moves.

“Okay, I’ll try to remember this time. But you know I don’t remember things very well!” Mom’s words hang in the air like smoke and I turn to see her smile and shrug her shoulders. She does this every so often, makes a joke or says something that indicates she knows her brain isn’t working like it should. It always catches me by surprise and I think about how much her mind grasps, if she knows how much she’s lost. But she doesn’t pause over the thought, she just throws it out there and moves on. She isn’t sad or reflective, just happy.

This Summer, the FDA approved a new drug to treat Alzheimer’s Disease, the first one in over two decades. This new drug, Aduhelm (aducanumab), may prove effective at slowing the cognitive decline that occurs with Alzheimer’s Disease. I shifted my academic research over the past five years to study Alzheimer’s Disease, to combat my own feelings of helplessness, to do something. But my research and this new drug are too late to help my Mom. Someday, there will be a drug that will bring millions of patients and their families relief from this horrible disease. I hold on to that hope.

We are fortunate and blessed that my Mom is living with Alzheimer’s Disease in a way that brings all of us joy. She is showing us how to live in the moment, how to accept love in whatever form it appears. Every day she needs more of our help, more of our patience and love. But she is not gone, she is not lost. She is still here, cheering from the sidelines at every game.

If’ you’re at the ballpark, maybe you’ll see her. She’s easy to find. She’s the one with a big smile, cheering the loudest.

Mom’s always been a cheerleader, even back to her college days. Rock Chalk!