We deal with the pandemic from different coasts. My mother navigates hers from my childhood home in suburban New Jersey, at the same address where she brought me after I was born. For years, calls home left me curious about what was hiding in the dark corners of my mother’s mind — wondering why she developed such a fondness for certain childhood stories. Or why I could now recite her reflections before the words left her mouth. Like cobwebs in our family’s old Victorian house, her dementia slowly built in the shadows, until the light hit in just a way to reveal what we were too afraid to see. These cobwebs, I’m learning, cannot be swept away, and their presence fundamentally changes the way we both experience home.
Even as this disease begins to extend beyond the shadows and compromise the sanctity of the space we’ve created, my mother is still home for me. Her words, her lessons and her love are places I return to again and again to remember who I am. As the reality of COVID-19 stretches on, disturbing every notion of certainty, I long for the comfort I find in the familiar sound of her voice, the inflection of her initial hello, the smile that still sits underneath each of her words, even in the midst of her own confusion. These everyday treasures I share with my mother can no longer be taken for granted. So I chase them at every opportunity.
My midmorning stroll through Old Tukwila has become a personal pilgrimage — a daily journey to interrupt the monotony of sheltering in place. During these walk-and-talks with my mom, I take a one-mile route, passing the same houses, pausing at the same stop signs, seeing the same woman watering her hydrangeas in her front yard. When every aspect of normalcy is disrupted, there is something grounding about knowing what comes next. Each step is an act of combating the uncertain with the predictable. And the repetitive conversational cadence I share with my mother, in unexpected ways, does the same.
I dial her number as I grab the keys and head out the door into the sleepy streets. The air is quiet and the roads are empty. I walk straight down the middle of my block.
“Hello! How are you, my darling? What are you doing? Sounds like there’s wind in the background.”
“I’m fine,” I reply. “Just heading out for my walk.
“Oh, you’re walking? Do you walk every day?”
I hear the surprise in her voice, as I did the day before, and the one before that. These questions and answers pass between us like a script, but only one of us knows the next line, and the recurring scene is alarming. The texture of our conversations is fading, as she gradually loses the ability to hold on to the details. We stick to the logistics of our days, because repeating agendas and events comes easier than recapping deep emotions I’ve just explained. There is some comfort in our steady repetition. But as I find myself able to predict her next word, the magic of these moments begins to dim. And I resist the feeling, because I want to hold on to the wonder of her for as long as possible.
I slow my pace, as I begin the walk uphill.
“How are things at the office?”
“Things at work are fine, though I haven’t been to the office in months.”
“Really? Why is that?”
For my mother, March and last Monday are both fragmented pieces of the same disjointed past. While I’ve counted the days since life went on pause, little has changed for her. She lived in a world where a life-altering illness held her captive long before COVID-19 made its entrance on the world stage. The newest crisis is a footnote, not the headline. For her, and the other 5.7 million people living with dementia in the U.S., this global pandemic is an event to be reminded of — a single answer in a reality made up increasingly of questions. Making sense of why we must wear masks to the grocery store competes with understanding why you can no longer remember a dear friend’s name. Each is slightly out of reach.
“Have you seen your cousin Jerry lately?”
“No, Mommy. I have not been getting together with people much since the pandemic began.”
My cousin lives in Kent, just 25 minutes away. We used to have a standing prework breakfast date. But our travel radii have tightened significantly since the pandemic, and our paths cross less frequently without our morning commutes. The barriers to getting together do not translate for my mom. I hear her disappointment to my response, and her unspoken encouragement to stay connected to family. I make a mental note to text my cousin as I walk past the fire station.
“What else is going on? Do you have anything exciting coming up?”
This question stings a little every time. It’s a reminder of a canceled trip to Australia, of running races that have been postponed and birthday celebrations that won’t happen. My mother will hear my answer, but will inevitably ask again, and the second time always challenges me to pause and reconsider what more I can offer her. “Exciting” takes on different shapes in different contexts, and a trip to the Burien Farmers Market or a bike ride on the Green River trail may now qualify. I answer her differently the next go-round and am reminded of all the opportunities to create something to look forward to.
“How are things at the office?” she asks again.
We’ll loop through her questions once more, changing the order this time, as I finish my walk around the neighborhood. Tukwila is filled with possible routes, but I choose this one over and over, hoping to see something new, trusting beauty can be found on this path I’ve already traveled.
The same is true with this journey I am on with my mom. Though her questions feel as if they are on repeat, these moments are completely unrepeatable. In our world, there are no mundane conversations, because there is no guarantee how much we share today she will recognize tomorrow. Will her voice light up at the sound of mine? Will I hear the giggle that cradles her words? Like the pandemic, nothing is certain.
Our bond as mother and daughter is created by a delicate collection of moments. We are small snapshots in time defining who we are and what we mean to each other: my little hand holding hers at the bus stop on the first day of pre-K; her reading the Sunday paper as I sit next to her in bed skimming the comics; our eyes meeting for a reassuring glance right before I walk down the wedding aisle. As dementia quietly blurs these pictures for her, I question how much my own identity will shift out of focus. Will I still be her darling as her memory fades away? Will I be the same person if I am no longer who I’ve always been in her eyes?
Tomorrow’s fears are constantly knocking on today’s door. But I actively ignore them, afraid they will steal the joy that is available right now. And right now there is us. So I’ll choose to be fully present, answering each one of my mother’s questions, four times if I need to. I’ll do so with the same enthusiasm the final time as I did the first, recognizing each one as an opportunity to remind her I am here and to remind myself she is home.
I pull out my keys as I head down the walkway and approach my front door.
“I’m going to head inside and get back to work.”
“OK, darling. You’re wonderful. Talking to you lifts my spirits. Talk tomorrow?”
I linger in the warmth of her voice for a second longer. This moment is all we have, but I answer yes, wanting to take in as many tomorrows as we are offered. Because to be seen, to be heard, to be understood, to be together — these desires connect us, across the miles, through the loss of ourselves we both contend with.
