I thought my grandmother was joking that Saturday night in the summer of 1983 when she pulled her baby blue Oldsmobile onto the shoulder of the road and said, “Honey, you’ll have to drive the rest of the way home. I don’t know how to get there.”
“You want me to drive?” I asked. My grandmother stared straight ahead, the usual light in her face, her eyes, dulled. “Grandma? Grandma?” I said again, the second time I placed my hand on her right arm.
“You can do it, honey. I can’t remember the way.”
“I can help you find the house, Grandma.”
She shook her head as she pulled the handle of the driver’s side car door toward her and stepped out into the road, a car horn blared into the warm July night as the headlights zigzagged around her thin body. She walked around the front of the car, approached my door on the passenger side, and opened it. I scooted my body to the left toward the driver’s seat still dressed in my dance costume. A purple leotard covered with pink, purple, and silver sequins, matching feathers holding back the strawberry-blonde hair just over my right ear. The pink and purple fringe danced from each of my forearms as I moved in behind the steering wheel, bigger around than I was.
I wondered if I could sit on one leg, use it as a prop to elongate my four-foot-ten-inch frame, and work the brake and the gas pedal with the other.
With one last plea I said, “Grandma, I’m twelve. I’m not allowed to drive.”
“You’ll be fine. You’re a smart girl.”
I leaned across the front seat and fastened my grandma’s seat belt, then my own before pulling the boat of a car onto Highway 101.
My chin quivered and I bit deep into my bottom lip as I craned my neck to gain a wider view of the road.
“Grandma, I’m scared,” I said as the two-lane road snaked in front of Whitewater State Park. Two makeshift memorials stood just south of the park entrance in overgrown weeds—silk flowers, their color bleached bland by years in the sun, stapled to homemade wooden crosses, a reminder that death had happened there in that bend in the road.
“Oh honey, you’re doing fine,” she said. She patted the tops of her legs a couple of times and looked out the window into the darkness as if she was watching the landscape roll by like she might have on a Sunday drive.
We coasted down the highway, the fire-engine red needle on the speedometer floated somewhere between twenty and thirty miles an hour. That felt like flying. My fingers, white at the knuckles, ached from my grip on the steering wheel.
I don’t remember how long it took to make the ten-mile journey from the edge of town to their three-bedroom ranch-style house. It felt like hours. I do remember the way my arms shook as I turned the car to the right, pulled into their newly paved driveway. I remember the apple trees in the micro-orchard to the right of the drive—the trees pregnant with ripening fruit, the smell of the rotted apples on the ground. I remember my grandmother’s flower gardens to the left with rows of irises and gladiolas almost as tall as I was.
“Grandma, we’re here,” I said. Her head was rested back on the seat. At some point in the drive, she’d closed her eyes, now her mouth hung open. “Grandma?” I patted her left arm. She lifted her head. “We’re home.”
It was early September of 2017 when my mother first expressed concern regarding my father’s memory. The leaves of the maples in the front yard started their annual flush from green to fiery oranges and yellows, some the color of cranberry.
“We’d gone in for lunch after clearing off the garden. I told your dad to go on out and start pulling the heads off the sunflowers to collect the seeds. I said I’d be out after I cleaned up the dishes, but I noticed him just standing there on the front porch.”
I held the phone between my left shoulder and my ear as I unloaded the dishwasher, ran through the mental list of MFA programs I was applying to, and tried to shush a dog who wanted to go outside again by snapping my fingers and pointing at him as if he understood. My mother said she was decorating a cake for an order.
“I said, ‘Sam, what are you doing?’” My mother continued. “At first, he didn’t respond. He looked right through me. I reminded him about the sunflowers. He looked around for a minute like he didn’t know where the garden was or maybe where he was. I said his name again, tapped him on the arm, and he finally perked back up, even laughed a little. I told him to go finish the sunflowers and he did. He seemed fine the rest of the day.”
“Has he had episodes like this before?” I asked as I sat the plate down onto the counter instead of placing it on top of the stack of its mates in the cabinet.
“I think this was the worst. Usually, it’s just him repeating himself.”
“Do you think it’s Alzheimer’s?” I asked.
“I’m going to make him a doctor’s appointment,” was all she said.
I’d noticed the last few times we’d all been together that my father was repeating stories; he asked the same questions over and over. My sister, Liz, thought maybe he was doing it for attention. I asked my youngest sister, Becca, about it, but she didn’t say much. I didn’t want to embarrass my father by asking Dad, do you remember telling me the same story four times at Easter dinner?
Dementia is an umbrella of misery. Sixty to eighty percent of the diagnoses that fall under it are Alzheimer’s disease. The gaps in cognition with Alzheimer’s are caused by the buildup of two proteins in the brain. Fragments of beta-amyloid proteins buildup and are called plaques, and twisted, fragmented fibers of another protein, tau, are called tangles. It happens slowly, the swiss-cheesing of the brain. It’s a disconnect in the neurons—a bad spark plug connection.
The white matter lesions that typically show up on an MRI as constellations of bright spots in someone on their way to a dementia diagnosis first appear in the hippocampus of the temporal lobe. This is the first stage of losing one’s mind. The losing can progress rapidly or sometimes the sufferer will languish there for years, still functioning but forgetful, repeating themselves, needing some assistance—a three by five card on the bathroom door with the word “bathroom” written in black Sharpie, or instructions left next to the coffee pot that read:
- Open lid on top of coffee maker and add ten cups of water.
- Add three scoops of coffee from the clear jar in the cabinet just above the coffee maker.
- Press the red button down until it lights up.
- Be cautious pouring coffee, it’s hot, and will burn you.
The brain atrophies or shrinks, the buildup of plaque increases; eventually the constellations stretch into the frontal lobe causing disruptions in judgment, then into the parietal lobe robbing its victim of language.
A demented brain no longer reminds its owner to put on shoes before walking outside and into the bitter cold of mid-January in Indiana, or that it isn’t safe to touch a red-hot burner on the stove, or to walk into two lanes of oncoming traffic. The brain withers, dies one memory at a time. Will my father’s diagnosis be the general dementia diagnosis, or will it be specific—Alzheimer’s like my grandmother?
My mother said she’s waiting for a neurologist in Cincinnati to call back with a time for the MRI. Several weeks have passed, and I don’t know if it’s my mother putting it off, or if she’s really waiting on a phone call. I’m afraid once a specialist officially diagnoses him, he’ll give up, my mother texted after the fourth time I’d texted to ask if the MRI was scheduled yet. My mother also wanted my father to continue his job as a stocker in the frozen section of the local Wal-Mart during the pandemic. His second post-retirement job. I’m afraid if he’s not working, he’ll go downhill fast.
When they finally do an MRI of my father’s brain, I suspect that constellations of brightness will appear in his hippocampus like lightning in the distance, hovering there, the way lightning does when a storm is coming. Instead of illumination, the bright spots will muddy what remains of his memories.
Things my father will lose to the light—
- My mother in their early days, after they’d met on a blind date in June, and the way her thick auburn hair cascaded over her shoulders.
- My sisters—the afternoon Becca fell and split her chin open, the way Becca and Liz bickered at bedtime in those sticky summers when they shared a bed.
- Me—the way he carried me high on his shoulders, showed me how to hoe a row for planting, or when he whispered, “You’re shaking,” before he walked me down the aisle.
- Memories of the suit that he shopped for alone to wear on that October day when he married my mother.
- How to tell a joke or even speak at all. Hey Stephanie, did you hear the one about…?
- How to find his way home.
I’ll be fifty this year.
Neither my grandmother, nor my father, nor my uncle were early onset patients. Though in hindsight there might’ve been hints of the fading before my father turned sixty-five in 2014. Repeated questions over a Sunday dinner. Hey, Stephanie, did I tell you…?
I’ve had moments when I couldn’t remember where I parked my car, mornings when I couldn’t remember what day of the week it was. I’ve blamed those lapses on being overwhelmed, sleep deprivation, or hormonal changes. But I’ve also had moments in conversation or when I’m teaching, and words fall away like a train moving along and then a gap in the track and they’re gone. In the last year I’ve found myself asking, “Did I just ask you that?” sometimes in conversation. It’s in those moments when I panic. Would my hippocampus light up with the constellations of brightness too?
I haven’t seen my father in 408 days. The Covid-19 pandemic left me housebound. My family has continued to gather in the Midwest, some 700 miles away from my home in Wilmington, North Carolina. They’ve gathered for occasional Sunday dinners, birthdays, holidays. One of the last times I visited, my father didn’t remember me when I walked back into the living room after being gone just long enough to go to the bathroom—a vacancy in his blue eyes.
“Sam, that’s Stephanie,” my mother said.
“Oh I know, I know who that is,” my father said, his expression still uncertain, blank.
“I’ll be right back,” I whispered to my mother and left the room in a rush, headed to the bathroom furthest from the living room where my parents were sitting, my father on the end of the sage green linen couch, arms crossed, my mother in the rocker recliner. My heart pounded, a thud behind my eyes. I covered my mouth with both hands to muffle the sounds of sobs I couldn’t control. I leaned against the wall—a guide to slide my body down onto the cool hardwood floor. I recovered as quickly as I could, splashed some cold water on my face. My father was dozing when I returned.
I was leaving the next day to drive south to North Carolina to start a three-year graduate program in creative writing after having spent a year teaching and studying in Morgantown, West Virginia. Morgantown was only 300 miles from my hometown, where my parents and sisters still lived. I could make the drive in five hours if necessary. But Wilmington was twice that distance, then a global pandemic.
Will he know me when I get to see him again? The cognitive decline is accelerating. It feels like every day that I’m gone, he loses another chunk of time, another place, another person.
You need to come home for a while, my youngest sister wrote in a text. It’s getting worse.
Guilt hounds me. For not being there as my parents age and my father’s disease progresses. For not seeing him when I know his days of remembering are numbered. I feel selfish for fearing what his dementia diagnosis means for me. My mother has always said I’m self-absorbed. She blamed my hypochondria and anxiety on my only thinking of myself. Anytime I challenged what was expected of me, e.g. staying in our small home town, being a good wife, mother, daughter, if I was difficult, then I was self-absorbed.
Will dementia, the disease that stole my grandmother, my uncle, and has now come for my father—will it come for me next? Is it already here in my brain? I want to ask my mother if the doctor has used the word familial. There are blood tests that indicate familial connection, but as generations continue to forget, I know the answer to the question.
In the summer of 1984, almost exactly one year after I drove my grandmother and I home that night, my father and his siblings made the decision to move my grandparents into town; away from the busy two-lane highway that had claimed more than one family pet over the years. My grandmother had started to wander, could no longer be left alone. The first time that she’d made it out to the highway, a passing car stopped, rescued my grandmother from the road. The stranger led my grandmother back to the front door, knocked, and asked if she belonged to us like she was a strayed animal.
I spent most of that summer with my grandparents. I sat on the front porch for hours with my great-grandmother who crocheted while my befuddled grandmother napped inside. That summer it was a granny square afghan. I rambled on in the afternoons about Daniel, Ali, and Mr. Miyagi, characters in that summer’s blockbuster movie—The Karate Kid. My great-grandmother’s hands moved furiously, yarn in one hand, hook in the other while she chattered on and on telling me about her illicit affair with country superstar Conway Twitty. Conway was getting his ducks in a row then he’d be on his way to retrieve her and her things. Her Samsonite suitcase with the silver pop latches sat packed on the floor just to her left every day.
I was also there to help pack up my grandparents’ house. It was the only home I’d ever known them in. I couldn’t imagine my grandmother being without her flower gardens, but I didn’t know if she remembered them anymore. Some evenings I’d coax her into a walk. We’d figure eight in and out of the apple trees in the orchard then I’d lead her to the other side of their property. She usually just stood at the edge of the tilled earth and stared blankly. I’d cut flowers to take in. “Grandma, look a gladiola,” I’d say, or I’d cut a hyacinth and hold it close to her nose and say, “Smell it, Grandma. Doesn’t it smell good?” Sometimes she would smile. But the closer it got to sunset, the further away she went.
I marveled at my grandmother’s china hutch that summer. I’d stare at my reflection in the glass doors. The dishes—white with a muted gray-blue pattern and dainty silver starbursts, shone and were stacked just so. Service for sixteen. Dinner plates, dessert plates, cups for coffee or tea and saucers to hold them, bowls, a gravy boat, a spouted dish for cream, and a sugar dish with a lid.
I was given stacks of bubble wrap and packing paper and instructed to start packing up the hutch. My grandmother roamed the house aimlessly most afternoons while I packed. She didn’t speak much by then, and when she did, it was mostly indistinguishable murmurings. As I started to remove the dishes from the hutch one piece at a time to wrap and pack them she said, “Stop.”
“Grandma, I have to pack the dishes. Remember, we’re going to take them to the new house.”
“I said stop.”
“Grandma, I’m sorry. I know this doesn’t make any sense.” I tried to hug her, to calm her. She pushed my arms away.
I went back to wrapping and packing. She mumbled and paced behind me.
As I turned back to the hutch to retrieve another dish, my grandmother went to the box, pulled out a plate and unwrapped it, returned it to the hutch where it had lived for decades.
We did that for the rest of the day. I wrapped and packed and she went behind me retrieved, unwrapped, and returned each dish to its home on the shelf.
That china, what is left of it anyway, is mine now. It sits in storage in Indiana. It’s my inheritance—a now partial set of china with missing plates, chipped cups for coffee or tea, and a lost gravy boat.
Does he still recognize Becca and Liz? My text to my mother read. I ask her this every few weeks. My father sees my sisters more often so it makes sense he would remember them the longest. My grandmother recognized me years into her disease, but she saw me as her youngest daughter that I resembled and not as me. I hope that since I was the first child that will compensate for the distance for a while—buy me some time.
He still knows you all.
The nights are the scariest for me now. I often roam the house, ping pong from my bed to the couch, and back again. I play word games on my cell phone. Scrabble, two different versions of Word Stacks. I do this well into the night in an effort to preserve my mind, to keep things sharp. How many words can I spell with the letters V O I D E N? Void, Vine, Vino, Din, Dine, Dive, Ion, Dove, Done, End, Nod, Id.
I plug the letters into a site called allscrabblewords.com to see how many words I’ve missed. The site lists fifty-five words for that letter combination. I’ve found twelve.
I start a conversation with Google:
“What is the difference between Alzheimer’s and dementia?”
“At what age does early onset Alzheimer’s start?”
“How can I know if I have early onset Alzheimer’s?”
“I can’t remember what I ate for breakfast, how long until I’m roaming the streets naked, and shitting myself?”
My grandmother was a modest, petite, Catholic woman. She worked as a secretary for a local paint company, wrote greeting cards and poetry. I never heard her raise her voice. She and my grandfather had twin beds in their bedroom. When I spent weekends with them, I slept in his twin bed and he slept on the couch in front of the television in the family room, usually passed out drunk. I’d seen my grandmother partially naked once when I woke up in the blue light of the evening and she was changing into her pajamas. I wondered if my grandfather had ever seen her fully naked—if anyone had seen her naked.
As her disease progressed, her inhibitions faded as her brain continued to light up. She’d be discovered roaming outside topless. She once made it to our house on the other end of town, a distance of maybe a half of mile. She knocked on our back door wearing her white Playtex bra, a pair of dress pants with an elastic waist, and no shoes.
This woman whose voice I never heard in a shout began acting out. Most of her aggression was directed toward my grandfather. An alcoholic who’d spent years telling her she didn’t know anything, screaming at her in drunken rages, abusing her. One Saturday morning, my grandfather called and said he needed help. We could hear my grandmother screaming. When we got to their duplex, my grandfather was cowered in a corner, and my grandmother was beating him with a newspaper, again in nothing but her bra and elastic-waist dress pants. She’d managed to split his lip and I think his glasses might have been broken. My father let her go for a few minutes before he stopped her, let her give to my grandfather what he’d given her for years.
I wondered what that freedom felt like? I wish I’d asked her. Grandma, how did it feel to be naked and not care? How did it feel to be angry and say exactly what you thought? To be loud? To beat the shit out of Grandpa that Saturday morning? What would it feel like for me? The freedom to be loud? To challenge expectations—to ignore them? Would I roam the streets naked? Beat the shit out of the man who wanted me quiet?
Later, in 1988, my father and his siblings discovered that decades earlier my grandmother had left my grandfather. She’d had an affair with a man from our hometown, fallen in love, gotten pregnant, taken a train to Florida and had the baby—a girl named Fredrica. My grandmother left the newborn with her best friend to raise and returned to Indiana and stepped back into her life like nothing happened. She must’ve have longed for that baby her entire life. We met her once, my aunt born in secret, she looked exactly like my grandmother in her younger years. I haven’t seen Fredrica in decades, though I’ve searched for her on the internet. I wonder if she has constellations in her hippocampus. I wonder about her inheritance.
When I asked Google “How do I know if I have early onset Alzheimer’s?” I scrolled through two pages of search results and came across a drop down that read “Can I test myself for dementia?” The answer was yes.
The first suggestion was a SAGE (Self-Administered Gerocognitive Examination) test, an online test to detect the earliest stages of Alzheimer’s disease or dementia. I knew better than to go down that rabbit hole. There’d be a good chance that I’d end up in the emergency room, tachycardic and needing a shot of Valium or Ativan. The next drop down read “How does peanut butter detect Alzheimer’s?”
When I clicked on the link it read “Researchers have discovered that those who had an impaired sense of smell in the left nostril had early-stage Alzheimer’s. Researchers noted that participants needed to be an average of ten centimeters closer to the peanut butter container in order to smell it from their left nostril in comparison to the right.”
I had a jar of creamy, low sodium Jif in the kitchen.
Don’t do it, I thought to myself, then got out of bed. The clock on the stove read 1:37 a.m. I got the peanut butter out of the cabinet, paced around the kitchen for a minute or two, put the peanut butter back, went to go pee, walked down the hallway back to my bedroom, and stood in the doorway. I looked at my bed and then down the hallway toward the kitchen over and over like a squirrel in the road. I returned to the kitchen, retrieved the Jif, and unscrewed the lid. Right nostril—all good. Left nostril—nothing. If I put my nose into the jar, I could faintly smell the peanut butter with my left nostril. I panicked there alone in the kitchen in my t-shirt and underwear. Maybe a psychosomatic manifestation, I thought to myself. I’m too afraid to know. For now, I want to believe that my left nostril not smelling the peanut butter was my mind screwing with me, the hypochondria, and all that self-absorbed shit.
I closed my eyes tight against the night, against the panic, and thought of the faces of my children, and their children. I imagined them older. I tried to recall passages of my favorite books, “Memory fades, memory adjusts, memory conforms to what we think we remember,” Joan Didion’s Blue Nights. I remembered places I’ve been and want to be, remembered the smell of the hyacinths in my grandmother’s flower garden, and thought of my father when we were both younger and the way he piggy-backed me around the living room. I remembered how driving that July night felt like flying, and thought of the constellations—clusters of stars, of brightness, all related to one another. Familial.
Cover art: “mountains on my mind” by Melissa Wabnitz Pumayugra
…
Inheritance was selected as the 2021 Blood Orange Review Creative Nonfiction Contest Winner by Brian Blanchfield. Brian wrote the following about the essay:
For its dynamic pacing and resourceful narration, and for its varied, aspectual takes on its subject, “Inheritance” is a standout essay. This is an agile and open consideration of dementia and its unsettling effects within a family. I admire its study of something so close, so concerning, and so elusive.
