My mother was the cool mom on the block. Until the early ‘70s, my parents, three siblings, and I lived in a neighborhood called The Pink Streets where the concrete is bubblegum pink and fringed by oaks. My mother, a docent at the art museum and a lover of historic preservation, collected Native American artifacts and asked penetrating philosophical questions that made my friends feel deep (What’s “time” anyway, she’d ask or, Don’t you think animals, too, have souls?). Passionate about yoga, she diligently practiced standing on her head, and one Thanksgiving (to my father’s astonishment), she returned home from a quick trip to a 7 Eleven with four long-haired hitchhiking strangers in tow for dinner. She encouraged our menagerie of pets: a yellow ferret named Chiquita; our spider monkey Jethro; and a tarantula we named Shotgun. Back then, my mother sported hot pants and halter-tops and still looked classy. She was resourceful too. When she napped she tuned out her four noisy kids by sticking her head in the bonnet of a hairdryer, her pillow warmed and buzzing.
Now in her seventies, and ten years into dementia, my mother wears the same straw visor every day—an orange one, faded and torn from her attachment to it. When I buy her a new one she gives it to her cleaning lady. Why would I want that? she asks, cocking her head, her old visor snugly back in place. Bracelets, shoes, and her stereo system were dispatched without our knowing, as well as family china and vases. Despite this familiar symptom of dementia, in truth I find myself caught between horror and admiration for her spontaneous shedding. Don’t we warn against attachment, teach our children to value experiences over possessions? Yes, and yes. But … this disease, it’s not black and white. (We retrieve her SUV from the man who cuts her lawn).
Early on her purging was strategic. A terrific reader, she loved Chekhov, Faulkner, and especially Flannery O’Connor. What should I have thought the first time I witnessed her reading a page of Wise Blood then ripping it out and dropping it on the floor? Then another, front and back, also tossed. Around her, previous pages lay white and limp as moths. She was curled beneath an afghan on her lounge chair, Mozart playing in the background. Mom? I asked, stunned. She stared at me, blinked. After several bewildering moments I figured it out: It was her place marker—her way of keeping track of where she was. Irritated, I gathered the discarded pages and tossed them in the trash, her most beloved books’ empty carcasses gaping from the shelf.
Years later, I look differently at that moment and wonder at my own markers—
my ways of assuring myself You’re Here Now. My mother may be off-kilter, her tricks of navigating her illness odd to any observer, but who’s to say our own organizing stunts—alphabetizing the spice drawer, rolling up our socks in tight balls—are any more “normal” than hers?
I know I may be rationalizing, and the truth is, the objects my mother threw out grew in value as her condition worsened—her diamond engagement ring, for instance, and twice, the leather-bound diaries written by her mother and grandmother in 1912 and 1887. We rescued the diaries before the garbage truck came churning, but not the ring and other items she pitched off her seawall. Don’t need them, Mom explained, shrugging her small shoulders. In light of her deeper daily losses she has a point.
My mother’s urgent need to purge was the first of her odd behaviors, but her developing disease brought more. Her forgetfulness expanded: early on, the usual—names of friends, recent conversations, appointments. Then words—common nouns and verbs. The first time I noticed this new stage of loss, she was sitting in her courtyard, cradling a cup of hot tea in her hands, her little black dog beside her. In a corner of the room sat a basket of squeaky toys and a couple of bones. She doesn’t like that, she said, pointing. Who? I asked, Likes what? That, she said again. I followed her eyes. Jetta, you mean? Your dog? She looked at me and rolled her eyes. Boing! she said, with a tone similar to duh! An awkward laugh followed, and then a barrage of guesses, as we attempted to net words and meaning floating beyond her reach.
Now all her sentences are short, her language riddled with holes. In addition to Boing! which remains a favorite expression, she uses mostly made-up and referential words (that thing, there). Somehow, despite her depleted language, she maintains an awareness of the social role of conversation, the give and take of it. Though her caregiver, my siblings, and I, don’t always understand the short verbal strands she links together, she uses eye contact and obvious syntax, and her pauses and inflections seem appropriate. Most importantly, she’s moved through her earlier stages of anger and most of the time seems content. We can often decipher, if not her meaning, some context she’s addressing and we don’t press her. Prodding upsets her, and what good would it do? It means something, this repartee, regardless of the words that don’t connect. It’s like studying a new constellation, beautiful and interesting, even if you can’t name the shape.
Beyond language, shifts in my mother’s behaviors are more alarming. She insists on keeping her wallet in the oven and demands all cars parked in her driveway back in and face the street. Foods she’d previously enjoyed taste too salty now, and she refuses anything sprinkled with pepper (It’s dirty!). She also questions grill marks on her hamburgers (What’s that?) and raisins, which she prods with her fork, suspecting they’re bugs. She fixates on minutiae—a gate that isn’t closed or dents in the fender of a car. My previously polite mother will point or chuckle (audibly) about someone’s tattoo, the hair on a man’s legs, a hole in a woman’s blue-jeans.
Car visors tilted at different angles irritate her. As before, she still loves animals (no collars allowed), ice cream (plain vanilla), and music (Dionne Warwick and Simon and Garfunkel). She adores flowers and green plants (though any in her courtyard must be pruned to exactly the same height).
Am I naïve to believe that despite all of the above, my mother is relatively happy, and do I assert this to downplay the depths of her slippages? Maybe. Or maybe through her illness, my perspective of who she is, what I see as the core of her individuality has shifted, grown broader and more elusive. How could I ever have presumed, even in her healthy years, to know my mother’s essence? So why should I be surprised to suspect now, despite her illness, her essence is very much intact? Friends who knew her as a young woman saw her as a wise soul, but those who know her now remark on her tenacity and resilience. It takes courage to live in a colander, so many holes in what she once knew, so many realities to fall through. The world she wakes to everyday is different than the night before. She calls it what she will, and her hours stack up accordingly. I’ve come to believe there’s dignity in that.
This is what I know: In my mother’s world, “reality” isn’t worth a hill of beans. I leave it at her door when I enter her house. It doesn’t matter that it’s Tuesday when she says it’s Thursday, and why point out that some question she’s asking has been asked six times in the last ten minutes? Some might be horrified by how easily I meld with her alternate universe, and no doubt many might argue my acquiescence breeds its own kind of madness. But for my mother now, there’s no recent past to regret and no future to fret over. It’s an odd gift, but a gift just the same.
Every year for the last several my mother visits her neurologist, a rotund man with a warm smile and easy laugh. She never likes this appointment, but I tell her it’s necessary in order for her prescriptions to be renewed. She rolls her eyes. The office smells like rubbing alcohol and Lysol, and each year the doctor ushers us back to his private room, sits behind his desk and gives my mother the same exam. It goes like this:
What day is this? What month are we in, what year? Who is president now? The one before? Repeat these words slowly after me. In a minute I’ll ask you to say them all again: Fan, Car, Toothbrush, Red, Jump. Do you have children? How many? What are their names? How old are you? What year were you born, what day? Can you spell water backwards, count backwards from 100 by eights? On this piece of paper draw a clock-face. Don’t worry about the hands, just the face and numbers.
What were the words I asked you to remember?
This year my mother misses all of these questions. She swings her foot back and forth and twirls her gold bracelet around and around her wrist. Despite her years she somehow looks like a child, but she maintains her composure and offers something, if only Boing! for every response. After finishing this test, we rise to leave. I can tell she’s frustrated. Suddenly, she looks the doctor straight in the eye then reaches down, palms flat on the floor, and wriggles her tush in the air.
Can you do this? she asks, clear as a bell and beaming. We both know he cannot.
She winks at me as we walk down the hall. I hand her back her visor and take her arm.