“The problem with Alzheimer’s is the problem of losing our autonomy—losing the ability, early on, to self-determine our lives.”Dr. Jason Karlawish in conversation with Brené Brown
My mom is like Beyoncé: she keeps shit to herself until she’s good and ready to let you know.
It’ll be crickets for a year, and then one day—boom—Queen Bey drops a visual album packed with generation-defining music, choreography and cultural commentary. She just blew up your life, and you’re welcome.
My mom’s bombs are a little different. She doesn’t aim for shock and awe; rather, she tries to figure out all the messy details behind the scenes and minimize the damage before making her big reveal. But there’s fallout nonetheless.
I woke up early on the first Saturday of summer vacation in 2003. I had just finished my sophomore year of high school and felt excited, free, like anything was possible. I was cutting strawberries for breakfast when my mom came into the kitchen and asked me to follow her outside.
Uh-oh—what did I do wrong? She instructed me to get in our car.
In the two minutes it took us to drive from the newer end of our apartment complex to the older one, my mom explained very simply and with little emotion: “I am asking your father for a divorce. I am moving out today. I have my own apartment with a bedroom that’s yours if you want it.”
We parked and walked up to a second-floor apartment. She pulled out a key and opened the door. I walked into a fully furnished home. There was a couch, a coffee table, a dining table and chairs. Throw pillows. A painting on the wall. This was not a spur-of-the-moment decision; she’d been building a new life for months.
I don’t know how long we were there before she said this next, but I feel like it wasn’t long: “I have a TV being delivered and I need you to stay here and sign for it while I go tell your father.”
Alone, in an apartment I’d never seen before filled with furniture my mom chose, I understood life would never be the same again. I wandered into the kitchen and opened a cupboard. It was full of canned soup. And it was only then that I started to cry.
The rest is a blur, but my mom did move out that day, and so did I. I didn’t choose my mom over my dad; I simply wanted my brother to have a bedroom. Money was tight, and my brother had slept on a mattress on the living room floor of our two-bedroom apartment for months. If I left with my mom, he could have my room. So I did, and he did.
It’s not for me to detail what went wrong in my parents’ marriage, but I will say that my dad was (and is) a very sweet guy, and we didn’t flee from abuse or violence or anything like that. My mom didn’t want to split our family up any more than she had to. She stayed in the same apartment complex so I could walk just a short distance to see my dad, and my brother could pop over to our place whenever he wanted.
I think it’s fair to say my mom believed the marriage had run its course. I also think she knew my dad would try to talk her out of leaving—and he did still try. But by Monday, we were gone, and she had officially filed for divorce.
With hindsight, I realized she must have been stockpiling money from her job for quite a while to afford a whole separate apartment. And that new hobby she’d taken up over the past year—running—served as her alibi while she shopped for her secret TV, arranged her secret furniture and stacked her secret soup.
These are the things I think I know. I can’t even imagine the things I don’t. I try to put myself in her shoes for just one second, executing this escape plan completely alone, and I find myself breathless from the weight of it. Also, simultaneously impressed and heartbroken by the ingenuity of it.
She’d waged a secret battle for her autonomy, revealing its very existence to her opponent only after she’d already won.
My parents’ divorce was finalized in the spring of 2004, and one month later, my mom closed on a modest home of her own. The furniture she chose moved into the house she chose. So did the man she chose as her partner.
Together, they built the garden she’d always dreamt of: raised beds for vegetables, lavender for the bees, sunflowers for my mom since they’re her favorite. I lived there, too, as I finished high school, and intermittently during and after college as I found my footing. I helped water the garden whenever I lived there.
When my mom married her partner in 2015, she reclaimed her German maiden name, Behrens—derived from Bernhard, a compound of the elements “ber(n),” meaning bear, and “hard,” meaning brave, hardy, strong—and hyphenated it with her husband’s Sicilian surname, Macaluso—meaning freed, liberated.
Janet, brave and freed.
In December 2020, my brother, stepdad and I gathered around the dining table with my mom, masks on. The three of us had privately agreed it was time to look into memory care. As the death toll of the pandemic peaked, her cognition and ability to live independently plummeted. She was no longer safe in the home she chose.
This was not like one of her bombs. We explained to her the benefits of moving to a place where there were other people like her who had trouble with their memory, and how she’d be well taken care of by professionals. We showed her pictures of private rooms and read aloud from activity calendars. She cried with joy at the thought of being able to socialize with other people and participate in activities tailored for her abilities. She gave us the green light to begin the process of choosing a new home for her.
My stepdad and I researched places together, but he left the final decision to me.
I tracked down nice second-hand furniture for my mom’s room, and Aaron and I drove all around the Eastside in a borrowed truck, picking up the pieces of her new life.
We sorted through her belongings—clothes, books, quilts, photos—to decide what would stay and what would go. Everything we packed got a permanent label. I wrote her name hundreds of times.
And on January 29, we loaded the last of her things into our cars and held our breath when it was time for my mom to say goodbye to her home.
I gasped for air beneath my mask as I held back tears. My brother’s brow crumpled. But my mom was placid and detached, not quite sure what all the fuss was about. This house she’d chosen, the garden she’d planted, the autonomy she’d fought so hard to seize meant little to her disease-altered brain.
I’d pictured so many scenarios playing out in this moment, but never this one. Compared to all the scenarios I’d imagined, I found this one to be the saddest.
Due to COVID restrictions, we were not allowed to help set up my mom’s room. We simply dropped everything outside the building and relayed basic directions through the window regarding furniture placement. Her clothes, books, quilts and photos were tucked away and arranged by strangers. We said our goodbyes in the lobby, our masks absorbing our tears as she was led away to her new home.
I imagine her standing there alone, in a room she’d never seen before filled with furniture her daughter chose, with the vague feeling life would never be the same again.
I hope she forgives me for blowing up her life. I’ve long forgiven her for blowing up mine.
I understand now we were both just doing the best we could for each other.
Today, my mom lives a life she didn’t choose. Alzheimer’s continues to steal her autonomy each day. She can’t decide what she’ll eat or when to take a shower. She can’t pick out her clothes or put them on without assistance.
But inside every shirt, every pair of pants, every sock and every shoe, I have written her name.
Inside, she is still Janet, brave and freed.