now is all there is

 

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According to an article in the Journal of New England Medicine, there is general agreement that Alzheimer’s disease will become a crisis by the middle of the century. The Alzheimer’s Association estimates that 5 million Americans currently have Alzheimer’s disease and that their loved ones devote nearly 18 billion hours annually toward their care. If the disease remains unchecked, these numbers are projected to more than triple by 2050, and the economic burden will exceed $1 trillion per year.

This report offers a bleak vision of millions of altered beings–our friends, our parents, ourselves–beautiful or not, cycling slowly through the minutes and hours of a day, unable to define waking life from slumber, learning to mistrust the elaborate proposals of their minds.

Giving it a name and searching for a cause is vital. But madness is nothing new, nothing unseen or undiscovered. It manifests differently in each of us. Some forms are potent, others benign. Though my mother suffered from depression, anxiety, and addiction all her life, her decade-long final descent swept me in its cruel undertow.

I heard myself getting louder on the phone, losing patience with customer service and DMV employees, weeping in the hallways of emergency rooms, and flipping off local drivers who honked at me to speed up. I became increasingly sensitive to anything that sounded derogatory.  A desperado suffering from insomnia, unsure of where to bury my sadness, burdened and exhausted by fielding crisis after crisis.

As my mother became less one of us and more one of them, I mourned the loss with every visit. I dreaded walking through the doors of The Gardens and searching in the Common Room for her meager remains.  Would her eyes recognize me? What did she see when she looked at me? Not a stranger exactly, but someone dear whom she couldn’t quite place.

My own identity was always in flux. Some days I was one of her sisters, sometimes her daughter, and sometimes just a pair of arms that wrapped around her. In the last few years, she never found a context for me. It was as if when I arrived, I had been dropped into her freeform narrative.  I was an insider who embodied everything, including her DNA, and I was paradoxically nothing more than a smaller body beside her, touching her, praising her, and styling her hair with brightly colored children’s barrettes.

I had to arrive without expectations and without wanting. I had to arrive with an eclair or a bar of Halvah, a basket of strawberries, or a bouquet of flowers. I had to arrive and be present, since I learned early on that each moment was the only one we had. With no past and no future to reference or borrow from, we learned to face each other with nothing filling the long bouts of silence. Nothing but love.

Some visits lasted an hour without as much as a word from her lips. More often there was a fragmented narrative she repeated, a parade of  faceless characters: “the tall girl,” “the people,” “they always…,” “bring me some of that,”  “…it’s all going to go away..”  There were days when she swore she’d watched my son playing soccer out her window, or she’d seen her own mother, who’d been gone for decades, sewing a school uniform.

In early November of that year we planned a Thanksgiving dinner at The Gardens and invited Mille’s family to join us.  We would bring the turkey and the stuffing, the sweet potatoes and more. We would remind my mother that Thanksgiving was coming, along with her birthday, that events happened and we celebrated them. We told her that life moved in a linear direction, as far as we could tell. We told her all this simply and cheerfully at first, growing wearier with each repetition.

As I drove away that night, I found comfort in believing that the chaos and anguish of my life was nothing more than a moment in time. Our experience of misery, elation, and transcendence exists only now.  Now is all there is.

 

 

 

Who the fuck is Ed?

 

Heavily medicated, Pat began a new chapter at The Gardens. We had to secure her stay by paying for a night nurse, often a young Ukranian woman, who arrived after Arlene left for the night, at about 10 PM. The nurse would sit in the lumpy chair, locked in Pat’s room, crocheting, studying for an exam, or listening to Fox News until Pat stopped weeping or moving. I don’t know if they conversed, or if there were routines. I don’t know if Pat felt relieved to have someone there, or if Pat ever knew if it was night or day.

Questions only lead me to more questions. 

Meals were served in the holiday-themed dining room. I remember it was Halloween for weeks and then Thanksgiving for most of November. The Gardens brought Pat a new set of table mates: Bunny, who had been a clinical nurse and seemed to have found the answer to her suffering in a daylong valium high; Bea, a seemingly kind but uncommunicative woman in her 70s, whose lips were always parted, awaiting whatever food was put in front of her, and later, Ed, a former sales manager for home security systems.

One afternoon while I was at work, Mona called to say that my mother had “settled down.” But the second part of the call was about the fact that my mother had become quite “close” with Ed, whom I had not officially met.

“They’re a couple, trust me,” Mona said, as if I were the only one missing the news flash on TMZ.

“Okay, well, that’s great, I guess. Right?”

“I want to make sure you’re okay with it. Some people don’t like their parents to…”

“If she’s happy, I’m happy.”

I heard about Ed on the phone from the tech ladies and from the activities coordinator, which only helped to grow his legend. “They walk around holding hands,” one said. “He makes sure she gets her tapioca pudding during snack,” said another.

Around this time, I had become friendly with another daughter of a resident who was about my age. I think her name was Millie. She was a beachy type, who had grown up in Orange County, but seemed to have voted for Obama. She explained her job as a “greeter.”  She drove to LAX or the Santa Monica airport five or six times a week from Marina Del Rey and greeted celebrities. Then she made sure they found their drivers, and said good-bye.

“They need someone to greet them when they arrive, said Millie. “I guess we all do.”  

Millie helped me pass the hours during longer visits to The Gardens. It was the first time I had a friend to witness and understand the journey on a weekly basis. Having a witness became increasingly important to me, as small details of my mother’s disappearance became the notes of a dirge. 

(She can no longer feed herself. She can’t cross a threshold from one room to another. She doesn’t recognize herself in the mirror. She’s losing more names of common objects: a shoe, a pencil, a dog, a napkin, the sun, a cactus, a kiss.) 

Millie and I had few things in common: we were both recently separated from our husbands; we were moms to teenagers, and we were our mothers’ only daughters.  Millie was great about bringing snacks and wine, and usually had one of her adult kids along with her. We’d get a little tipsy and laugh through our tears. We’d watch a Bogart-Hepburn movie with our moms in the common room, shushing the residents who snored too loudly. 

Millie’s mother, Heidi, 92, a former pianist from Austria, moved about with a walker. On talent night, she sang a beautiful operatic song, accompanied on piano. Millie liked my mom, and because of her flexible schedule, was able to visit during the week at odd hours. She acted as my spy and part-time confidant, reporting on the questionable aides.

She told me about one aide who had grown impatient with the old folks and deserved to be fired, and another that always got the laundry confused. The laundry one dressed my mother in a pink blouse belonging to the fast-talking, bubble gum-pink clothing resident, which almost caused a fist fight.

Mostly, though, there were kind folks from faraway lands, doing a very thankless job for little pay. Some were downright saintly. Things ran relatively smoothly under Mona’s watchful eye, until the daughter of the owner started showing up to oversee the operation. Things became less relaxed. More rules to follow.

After a week or two of hearing about my mom’s special friend, I finally got a chance to dine at my mother’s table. One of the servers pointed to a jelly roll of a man with a prickly shaved head, and large doughboy hands. This was Ed. I wasn’t expecting Sean Connery or Denzel Washington,  but after all the buildup, I thought maybe Ed would have a smidgen of pizzazz.

“The soup is a little salty tonight, Mom. What do you think?”

This is my sister,” she announced to her table mates for the fifth time.

Bea stared blankly at me, while Bunny repeated her prompted lines about her daughter, a dental hygienist. 

Then I took the leap. “And you must be the famous Ed. I’ve heard so much about.”

Ed stared at me and lifted his fork, as if to say, here, here!  I could not picture Pat having a future with him.

“Mom, this must be your new friend, Ed.”

“Hmn?”

“You know, your buddy that you’ve been hanging around with.”

My mother wanted a ritual cigarette immediately following dinner, even if it meant skipping the tapioca pudding. She turned to me with frustration and said loudly: “I’m sick of hearing about this. Who the fuck is Ed?!”

Even better, was that Ed didn’t quiver or bother to identify himself. Instead, he waited until we got up from the table before plunging his spoon into my mother’s leftover pudding.