Hui Means “Smart”

Edith Dora Rey “Blue Necklace” (2007) 12×12″, oil on wood. Image used by permission.

I visit my mother so often these days it sometimes feels like I’m starring in Groundhog Day: The Florida Version.

It’s always the same. I wake at 3:30 (after having spent the night anxiously checking both my clock and iPhone, afraid I will sleep through both alarms). I drink a cup of tea, feed the yawning cats, dress quietly, pack up my computer, zip close my suitcase, walk out into the cold darkness, and climb into the idling Uber.

While most everyone on the airplane sleeps, I fit my treasured and indispensable BOSE over my ears, sit back, and listen contentedly to a book or podcast. Sometimes, if the flight has backseat screens, I watch an episode of Chopped on mute, or a movie I know my husband has no interest in seeing. When the cart appears alongside my row I ask for tea.

“Two bags, two creams, and two cookies please.”

Over time and countless flights on Delta, I’ve become a Biscoff-dunking expert: two dunks is just enough to soften their ultra-hard crunch, but three dunks will cause the dipped part to break off and tumble in, settling as unwanted sludge at the bottom of the cup.

After touchdown, I step outside into the steaming exhaust-filled air and hop a shuttle to the car- rental counter. I ask for a Nissan Sentra or Rogue because I know they are comfortable, and they handle well. In Florida you need a nimble car: people here drive at either recklessly high speeds or dangerously slow ones, and, as far as I can tell, Floridians don’t concern themselves with lane boundaries, turn signals, or with keeping a safe distance between cars.

Once at the gated community where my aunt and uncle reside, I pull up to the guard house and hand over my name and driver’s license. While waiting for the guard to determine whether or not I pose a threat, I listen to the peaceful gurgles from the fake concrete creek flowing nearby.

Sophie greets me at the front door with growls and high-pitched barks until my aunt yells from the kitchen, “Sophie, shut up!” at which point the mini poodle waddles off in search of her ball. I kiss my mother’s incredibly likeable younger sister and—if he’s not out playing pickle ball or cards—my affable uncle hello, tell them the flight was fine, and roll my suitcase down the long white-tiled hallway, passing the elegant dining room with its enormous glass table and glittering crystal chandelier, into the guest suite. I kick off my black boots and my jeans and sweater and replace them with flip-flops and a sundress, respectively. After washing my face and hands I lug the 1960s vinyl-topped card table from the enormous closet, and pull open each leg until they lock into place with a squeaky satisfying click.

For the next four to fourteen days, this will be my home office away from home office.

I traipse into the kitchen and eat whatever lunch my sweet aunt has thrown together for me. It will more than likely be carb/fat/sugar-free, but I will be starving so I won’t mind. I’ll ask if she and my uncle have dinner plans tonight. Ninety percent of the time they will: since retiring to Florida they have become the busiest and most social human beings I know. They’re never too busy, though, to tend to mother when she needs them. For this I am beyond grateful.

I fill my pink water bottle with ice and water from the door on their refrigerator, say, “I’ll see you later,” and hop into my sauna car, blast the AC and speed by the many dark-skinned gardeners peppering the air with their ever-present lawn mowers and leaf blowers and pesticide dispensers. To be sure, wild and unruly are not commonplace here in V_____, and only by blood am I allowed passage into this moneyed village of stucco mansions, perfectly-placed palms, and sparkling German automobiles.

I jam out past the guard gate, turn left and head north. Twelve minutes later I arrive at H______, a sprawling tan building that houses 100 assisted living residents, as well as 56 people who suffer from Alzheimer’s and other forms of dementia. In vain I search for a shaded parking spot, grab my purse and go in. I am supposed to sign my name in the visitors’ log but I never do and no one ever asks me to. Instead, I head for the locked door into the memory care unit, say, “Can you please let me in?” to the receptionist who points a clicker. The light next to the door turns from red to blue, and I push through.

As is the case lately, I expect to find my mother sleeping somewhere, whether on a couch outside her room or in a chair on the sun-drenched patio. Today, I find her in a chair in the living room area next to the dining area. Even though the sun is shining brightly, the room is dark; the overhead lighting adding little brightness. There are about a dozen residents arranged in a semi-circle around a large television; a few, including my mother, are asleep. I don’t think anyone is actually watching the television, which seems to play a continuous loop of Tony Bennett songs, I Love Lucy reruns, and black and white movies from the 1940s. At a table behind the group, two bored kitchen workers fold dark green napkins in preparation for dinner. I look around for any caregivers or activities people and find none. I am frustrated by the lack of activities here as well as the ratio of caregivers to residents and will, again, at some point during the week, make my dissatisfaction known to the executive director, who will again promise that things will change.

I will again pretend to believe her.

I kiss my mother awake. She opens her eyes and, looking as if I’d been there all along, says, “Hi darling,” with a sweet smile. “How are you?”

“I just flew down,” I inform her.

“How’s your father?” she asks, not aware that he died last June. Not remembering that they had an acrimonious divorce more than thirty years ago.

I say, “I have no idea,” and take her hand. “Come on; let’s go for a walk.” It takes me more than three minute to heft her up. She’s in pain all over. She’s heavier than she’s ever been. (At some point I will drive to T.J. Maxx and Ross and again buy her new pants that will fit her ever-expanding girth. Such is the result of inactivity coupled with three large meals, two snacks, and two desserts per day.)

Slowly, we make our way outside to the patio where I help her settle into a cushiony chair before dragging the one umbrella-shaded table over toward her so she is covered. We catch up for a few minutes. I tell her about her granddaughter’s recent accomplishments. She smiles proudly, but no longer asks questions or attempts to further the conversation. I ask her if she wants to play cards and she says sure. I spend eight minutes trying to find a deck and when I return, she is asleep. I check my email, play a word game, move the table over a few inches so she’s out of the sun, watch her sleep.

And so it goes.

Sometimes there are activities, such as BINGO or drawing or trivia games from a downloaded program on the TV. Sometimes a few of the more ambulatory residents are put on a small bus and taken out for a donut or pizza, or just for a drive around town. When I moved her into this particular facility in January, I was told there would be a Shabbat service every Friday. In her previous place it was one of her favorite days of the week. She loved reading through the prayers, listening to the cantor sing, sipping the wine. Here, they have yet to find a Rabbi.

When I notice her face getting red from heat exhaustion I bring her back inside hoping the activities director will have found something fun for the group to do. If there’s a live musician we go together to the room where the “singer” will perform. (I put that in quotes because, frankly, the ones I’ve seen here stink. They don’t even bother memorizing the songs and sing while reading the lyrics from their computers.)

Since some of the assisted living folks might want to see the show—and God forbid they come into the memory care section of the building—the memory care folks must be herded, like slow-moving confused cows, to some other part of the building. I suppose the change of scenery is good for them, but still…it takes up to thirty tortuous minutes to get them all from one place to another.

I slip out during the performance since dinner will be served as soon as it ends, and I really don’t want to eat dinner with my mother. It is enough that I will spend the entire day here tomorrow as well as the next day and the day after that, sitting, reading, playing cards, watching her sleep, listening to bad music, and joining her for lunch.

Eating lunch with my mother is a disquieting affair. In the small dining room we are surrounded by a few wheel-chaired residents with much advanced symptoms who must be spoon-fed liquid food. Other residents continuously hurl insults at their plates, screaming to whoever will listen that they refuse to eat this slop. (The food at H____ is actually quite good. Fresh quality ingredients. Well-seasoned. Varied menu.) There are never enough caregivers to help server so the mealtimes often feels rushed, chaotic, and loud.

Additionally, it hurts my heart a little to have to remind my mother to put her napkin on her lap—the very same woman who lived for good manners as if her life depended on them. Watching her eat her soup with her fork frustrates me, but I’ve learned to keep my mouth closed. If she wants to drop food onto her clean shirt, I need to let her. Just as I need to let her finish every last morsel on her plate because eating is one of the last great joys she has these days. She used to enjoy a lot more than food, but not anymore. No longer does she read. Television holds no appeal. Arts and crafts mean nothing to her. Card playing confuses her. Because she still knows numbers I always suggest Crazy-Eights, but after one round of “Do you have a six?” she just starts plucking card after card from the deck until she’s holding most of the cards. I utter, “Mom, you won!” and she nods contentedly.

But now it’s just music and food that sustain her. Music and food and her robot cat which purrs and meows when you rub its head or belly.

***

As the aged crooner sings about wasting away in Margaritaville, I lean close to my mother and say, “I love you, Mom. I’ll see you tomorrow.” She shrugs her shoulders. “I thought you were staying here,” she says with a frown.

I smooth her hair away from her eyes. “No, I’m staying at Aunt Sharon and Uncle Marty’s house.”

“Why are you leaving now?”

Because I hate everything about this place. Because I hate the smell of soiled adult diapers and impending death. The dark rooms and vapid TV shows and stale music. I hate the weariness and cynicism I see on the faces of the caregivers when they think no one is watching them. I hate the wheelchairs and walkers and the vacant stares.

“I want to beat the traffic,” I reply, giving her a quick kiss and running off.

I wait until I am in the car with the AC blasting before I let myself cry. I let loose the pain, gulping the air between sobs, my emotions swaying back and forth between anger and anguish.

Dementia is a vicious and wily disease. One never knows how it will materialize; in what fashion it will go about mucking up an individual’s brain.

After she was diagnosed two years ago with mild cognitive decline, I had no idea how quickly my mother would start to disappear into the ether like so much exhaled cigarette smoke. Only a few months ago she could still play gin rummy. Still read and write.

Now she is totally incontinent.

She cannot dress herself or shower alone anymore.

She can’t remember my daughter’s name. She has no idea how many children she has or where she went to school.

Now she tries to drink her fruit cup and often believes her hands are not her own.

***

I’m feeling sorrier than shit for myself as I pull into a grungy half-shuttered strip mall a few miles down the road. I’d read on Yelp about a great Chinese take-out-only place, and, as long as my aunt and uncle are busy tonight, I will treat myself to some Asian junk food. I deserve it, I tell myself as I grab a menu from the counter of the tiny restaurant. I have a parent who’s dying. I am suffering. I am sad. I get to eat whatever I want.

I order more food than I can possibly consume, pull out my phone and lean against the wall to wait. The dirty kitchen door swings open and a little girl strolls out and sits up on a barstool next to me. She’s wearing a pink dress with a white cardigan. Her jet black hair glints under the fluorescent lights.

I smile at her. She smiles back shyly. For a second, her bright colorful presence in this dingy dive makes me think of the girl in the red coat in Schindler’s List.

“Hi,” I say as I drop my phone back into my purse. “Are you getting food?”

“No. My mother is the cook,” she says as she steadies her petite hands on the filthy counter and twists back and forth on the seat. “I have to wait for her.”

“Ah.” A millions scenarios race through my head. “Does she own the restaurant?” I ask, hoping she does.

“No. It’s his,” she replies, pointing to the man who took my order.

“How old are you?”

“Eight.”

“Third grade?”

“Fourth.”

“You like school?”

She nods. A young couple walks in and orders food in another language, one the owner knows.

Now that we’ve become acquainted and she doesn’t think I’m a scary stranger I tell her my name and ask the pink girl what hers is.

“You want to know my American name or my real name? No one can pronounce my real name.”

“Your real name,” I say slightly horrified. Are we still at a point in this country that children have to use fake names?

She looks behind her as if she’s about to share something she maybe isn’t supposed to. “My name is Whee.”

I’m pretty sure I heard Whee pronounce the beginning of the name with a microscopic catch in the back of her throat and I try to echo it exactly when I ask, “How do you spell Whee?”

“H. U. I.”

And that’s hard, why? Are Hui’s schoolmates—those Emmas and Sophies and Jacksons—so thick they cannot commit to memory such a simple word?

“Does it mean something?”

“Hui means ‘smart’,” she states assuredly.

I raise my eyebrows with exaggerated curiosity. “And? Are you?” I ask.

“I think so. Yeah,” she says, adding an emphatic nod.

Just for fun I show Hui the letters of her name in American Sign Language.
She imitates the H and the U but before she gets to the I she giggles. “I can’t do that. It’s the Chinese fucky sign,” she says as she surreptitiously points her pinky finger toward the sky and grins. I grin along with her, imagining her giving the pinkie to those nincompoops in her school who made her change her own name.

“Your necklace. It’s so beautiful,” she declares totally off-topic. I touch the pendant hanging from the black leather cord. It’s a round pale-blue glass stone set into a black filigree flower. I don’t remember where or when I got it, but I love it, and wear it often. “It looks like it’s magic.”

The kitchen door swings open and a young woman carrying two bags of food appears. She places them on the counter before looking over at Hui with a harried worried expression. Her brow glistens with sweat. Her apron looks as if it’s never been washed. Hui says something to her in (presumably) Chinese, after which the woman nods. She smiles at me and bows ever so slightly then disappears back into the kitchen.

“Your food is ready. You’re going now,” Hui tells me. I don’t know whether she’s relieved or disappointed. She’s eight, I remind myself. What does she know or care of impermanence? Of people flashing in and out of her life like lightning. The moment I walk out the door I will no longer exist. By the time I eat the last fried pork dumpling at my aunt’s kitchen table, our twelve-minute conversation will no longer matter to Hui.

I suddenly picture my mother having her dinner. If no one bothered to cut up her meat I’m sure she’s using her hands instead of a fork to convey what’s on her plate into her mouth. If they gave her thousand island dressing for her salad, she will not remember that she hates thousand island dressing and eat it anyway.

I wish I’d thanked her more than I have for all she’s done. For all she sacrificed for me and my brothers. She never hesitated to give of herself, even if it meant giving away her own happiness.  Sure, my mother is alive, but the woman who raised me to be the person I am today no longer exists. Because I hold close the memories of her, she still matters. She will always matter.

Before I have a chance to reconsider, I unhook the necklace and tie two knots in the twine to make it shorter. Hui asks me what I’m doing.

“I’m giving this to you,” I say as I clasp it around Hui’s small neck.

She looks confused, but unmistakably delighted. “Why?” she asks as she lifts the pendant and peers down at it.

I don’t tell Hui it’s because for the past twelve minutes I didn’t wallow in my own selfish grief and that talking with her brought me the sort of simple joy I rarely experience when I’m in Florida.

I don’t tell her it’s because I am sorry that she has to grow up in a world where she needs to be known by a name not her own.

I don’t tell her it’s because I want something I do to matter.

I don’t tell her it’s because I want her to remember me.

I find my keys, snatch the bags of greasy steaming food and say, “Because I’ve already used the magic and now it’s someone’s else’s turn.” Then I open the door and walk out into the still-hot evening.