We enter my mother’s room, and although she looks tiny, she is channeling the suffering of the entire Jewish people. “The nursing staff would do well at Buchenwald! The food is worse than Auschwitz!”
She is visibly shrunken. Her bony hand is clutching Shirley’s Little Book of Big Indignities. She wants to show me the latest entries: scribbled in slanted script are times she’d called for nurses and they hadn’t come, medications, random words, and assessments. There are circled notations, exclamation points, question marks, and underlines, and a list of births and deaths and dates of entry to this country.
11:02 11:04 11:05!!!!!! 11:06
Rang Bell
3:00 3:03 3:04 3:05
Mamushka
xeloda
Anna Akhmatova, Russian tenement poet
zometa
NO????!!!
Didn’t show!!!!!
Faslodex, exemestane, aromasin, Procrit, levothyroxine
3:30 3:31 3:32 3:33 3:34 3:35
Dr. Rodrequez? Which one?
Attitude
Call
3:35 3:36 3:36 3:37 3:38 3:39 3:40
Zede 10/18/83 8/19/62 Geisen, Russia, entered U.S. 2/2/13
Bubbe 8/20/82 11/7/58 Aman, Russia, entered U.S. 8/5/14
Ironing
“Why ironing?”
“I can’t find anyone to iron your father’s shirts.”
“You iron Dad’s shirts?” I can’t believe that after all these years, with so much history between them and her illness, she’s been ironing his shirts. “Mom, please, that’s the last thing you should worry about right now.”
I too have kept lists. Because of the numerous hospital stays we weathered during Ezra’s babyhood, friends facing medical crises often ask my advice. “Keep a notepad handy,” I always recommend, “because when nursing shifts change, things can get dicey,” although I’ve never felt the need to include the dates of births and deaths of family members.
“I don’t understand why I have two colostomy bags. Why did they do this to me?”
I know that things have been explained to her but I carefully and slowly reiterate why the surgery was needed. Then she fires me for not having my shirt tucked in. It is annoying for her to look at me with the shirt untucked. This is when I am exiled to Ross Dress for Less.
There is something perverse in this assignment. Growing up, my mother deemed my taste in clothing too eccentric, and as recently as two months ago, she implored me to wear classic twinsets in demure colors like my sister. If I’d been tasked with this chore even two months earlier, I might have seen it as an opportunity to punish her for her failure to be anything more than the best mother she was able to be. Still, when I see a T-shirt on the rack that reads Keep Calm and Smoke Weed, or the one proclaiming Yes We Cannabis, for only $9.99, I can’t resist imagining the horrified look on her face when I tell her, “This is the shirt you’ll be wearing to Sunday brunch.”
Yes, we cannabis.
“You can shoot a teenager in a hoodie who’s strolling through your neighborhood but you can’t purchase marijuana to relieve nausea from chemotherapy in Florida, which is why I’m proud to be my mother’s drug mule.” That’s what I intend to say should I ever be questioned by the DEA as to why I am transporting drugs across state lines.
Of all the unexpected experiences I’ve had over the last year, becoming a patient of DOC420 is one I really didn’t see coming. The doctor, who advertises with glamorous head shots on billboards in Los Angeles, has the only medical office I’ve ever visited that sells Flamin’ Hot Cheetos. “Arthritis,” I said, holding up my crooked right pinky finger, and promptly received my “doctor’s note,” which looks as official as any of the student-of-the-month certificates my son earned in kindergarten.*
It was almost as easy to get this weed as it was to score pot in high school. Back then I just walked down the hall to my parents’ bedroom. The only time-consuming part was rifling through their belongings until I located the joints in a plastic baggie inside a shoe. Drugs hidden in your parents’ closet? Please, every teenager knows that’s an invitation to partake! I didn’t bother to count them out, assuming that over time they’d smoke some and I’d smoke some and they’d never notice. The thing I hadn’t counted on was that they didn’t actually like it and I was the only one hitting their stash. Years later they told me that it was their way of keeping an eye on how much I was smoking.* “So you see, I owe them, Officer,” I’ll add to the DEA agent. I picked out lemon-drop THC-infused candy for my mother and I’ve successfully traveled with it twice. I told my parents when I arrived I’d brought more with me.
“Thank goodness, those are a godsend, you don’t know how much they’re helping,” my dad said.
“Would you like one now, Mom? It might help you relax.”
“Oh, no, your mother doesn’t like them.” Now his easier acclimation made more sense.
Back at the Gardens, I show her the long shirts that should cover the colostomy bags, light jackets that won’t wrinkle, and several pairs of black pants, as requested. She wants layers so people won’t notice the bags, but ones that won’t make her look heavy. Her obsession with weight has overtaken her cleanliness obsession.
“Do you know that your cat is fat?”
“Yes, Mom. We prefer ‘husky,’ but we’ve noticed that.”
“Well, he’s fat.”
“We’ll be sure to tell him you said so.”
“I read that book you sent me by Jon Cryer. I just loved him in Pretty in Pink. Is he still slim?”
“Yes, he is, Mom.”
“Good for him. Is he gay?”
“No, Mom, he’s not gay.”
“Are you sure? He seems gay.”
“Mom, I know his wife, and I knew his first wife and other . . . he’s just not gay.”
“Well, I think he is.”
“I’ll be sure to tell him you said so.”
“Have you taken anything from the apartment, Sticky Fingers?”
“You’ll have to get better so you can find out for yourself, Shirley.”
I get down to business. I’ve picked up some cucumber facial wipes and lavender room spray to help her feel refreshed, as well as hair clips to hold up her blouses so they don’t get soiled as the bag is emptied. I explain to her that this is something that people refer to as “hacks,” or self-styled tips to make things easier.
The nursing staff doesn’t have much experience with colostomies, and as can happen, the surrounding skin is irritated and bleeding. Because my son had a colostomy bag for the first year of his life, I’ve got firsthand knowledge of all things ostomy. She and my dad have been badgering the staff to send an expert, but I know there is no one coming. The only help I received came from my tribe of mothers of children born without anuses, the most unexpected chosen family I’ve ever been a part of. Ezra’s medical odyssey took place so many years ago that I have to work hard to pull up the information that I filed away in the “Information I Hope to Never Have to Use Again” area of my brain.
I explain how to air out the skin, how powder helps to keep it dry, and how to efficiently open and close the bag, but she’s confused and keeps repeating that she doesn’t understand why they did this to her and that the bags are filling too often.
“What are you eating?” I ask.
“Cherries and plums.”
“That’s the worst thing to eat, especially the cherries. Berries have more skin and fiber than other fruit. Try eating more processed food. Dad, please stop bringing her cherries.”
“I want to bring my beautiful wife cherries!”
He is trying so hard to be kind. On their anniversary, he brought a small bottle of champagne to the hospital. He has also made her promise not to “predecease” him. As much as her mercurial housekeeping is driving him nuts, some deep well of love has been re
awakened, and he is also terrified of being alone. There has been a rupture in the fabric of the universe. I am in bizarro world, the alternate universe that Dr. Handsome McBirkenstock lectured on at Sunday Assembly, trying to talk my father out of doing nice things for my mother.
“I’ve spent half my life with her and now I want to bring her cherries,” he says, voice rising with indignation.
“Okay, Dad. Why don’t you take a break,” I suggest, and send him off with a bag of THC-infused lemon drops.
She is nervous about what will happen when she needs to use the bathroom. Because she is so worried that no one will come to help her, she rings for someone to come before she needs to go just in case it takes a long time. This means she is constantly ringing, which is why the Little Book reads like she is the timekeeper for a track and field team. It’s a terrible cycle.
“That’s why I’m here, Mom.”
We use a walker to get her to the bathroom. I take her diaper off before I sit her down. The colostomy bag needs emptying and I open it up and start to gag. I am instantly transported back in time.
One Easter, my husband, son, and I attended a service at a Unitarian church that Jeff had been attending sporadically. Ezra’s surgically reconstructed bowels hadn’t stabilized yet. Halfway through the service, he got terrible diarrhea. I rushed him into the bathroom, but his clothes were completely ruined. I pulled a curtain down from the church’s bathroom window, wrapped him in it, and carried him out to the car. I was determined to have a nice holiday, so we went home, got new clothes, and headed to a Chinese restaurant. Before the food arrived, he had to use the bathroom again. The smell was so strong that I started throwing up in the stall next to his. “Jesus, what is going on in here?” another patron said, coughing and gagging and quickly fleeing the bathroom. My son called out from his stall that he wished he could glue a toilet seat to his butt.
This odor is even more noxious than I remembered, perhaps because of the drugs in her system. I tell her that I am having allergies. My mother knows I don’t have any allergies, but either because of the drugs or because she wants to believe me, she accepts this explanation. We close the bag up and settle her back into the bed. I execute a convincing “My phone is buzzing in my pocket” move and pretend to see an important number flash on the screen.
“Oh, I have to take this. I’ll be right back,” I say, then jauntily turn and exit her room.*
I wander through Wheelchair City on the hunt for a visitors’ waiting room, but there is none. I find an unused corridor. A steel door slams shut, locking me in a vestibule with an antediluvian transport bed that has metal stirrups and leather hand restraints. I look out of the window to try to get my bearings and I see a bird that has been flattened by time and the decomposing process on the window ledge. I want to call my sister, but I can’t get phone service in my isolation tank. What could she or anyone, for that matter, say that would help? Nothing. Except it would be nice if there were a call center for people taking care of their parents manned with volunteers who listen to you vent and then repeat, “I know, I know,” over and over in a soothing voice. I lie down on the inside ledge and allow myself a good long cry. The window doesn’t open, which is unsurprising; it would be too tempting.
One of my pitiful apartments in New York had an ancient hand-operated radiator. You had to open a valve to let the steam out and put a bowl underneath, otherwise water would drip onto the floor. I have turned into that radiator, requiring regular draining. A nurse’s aide lets me out after only a few minutes of banging on the door and I am strangely comforted by the sound of the man moaning for help down the hall.
When I get back to her room, my mother is asleep, not that you would know it, because the lights are on and she sleeps with her glasses on. She doesn’t want the staff to forget that she’s still alive. When she rouses, she reminds me to go to Friday night services with Rhoda, her temple buddy.
I’m not really crazy about going. I’m not convinced that the rabbi isn’t a memory care patient. He rarely remembers me despite having met me a dozen times, but it can’t be easy shepherding an elderly flock. You’re basically a hospice worker. I couldn’t do it. Still, I wondered whether “Shirley, you must be dying to get out of here” was his best choice of words when paying a visit to my mother after her surgery.
I massage her temples, her scalp, and the back of her neck. She makes happy sounds and only pauses from her enjoyment once to inquire if a certain cousin has gotten as heavy as she’s heard. She resembles her mother more and more with each passing day, and I ask if she’s thinking about Frances. She tells me a memory of holding hands with her sister, Gloria, both of them in pigtails, skipping down the street in Philly, while visiting their grandparents with her mother.
“You could walk by yourself on the street, because everyone in the neighborhood knew Bubbie and Zeyda. The street was always bustling. We’d peer into the open kitchens of restaurants; there was always something wonderful simmering on the stoves. Irish policemen were walking their beats and they’d tip their hats to us, and someone from the bakery would come out; they knew we lived in Delaware and they’d say, ‘Hello, Miss DuPont,’ and give us treats.”
She falls asleep dreaming of warm cookies and her tribe.
Rhoda is waiting in the lobby for me. The Lils mentioned that she’s “losing it” and I have noticed a marked decline. Details are getting a bit fuzzy. This morning she told us she was rushing to get to the bus for an out trip to a daytime concert. The bus was leaving at one thirty p.m. and it was only nine. No one stopped her, though, because you never know at the Gardens; it might take someone from nine until one thirty to make it from the dining room to the driveway, and no one wants to embarrass her.
I don’t know a thing about Rhoda, where she comes from, who she loved or who loved her, or what has transpired in her life to bring her to the same place as my mother, but we hold hands and walk the few steps to the shul.
Outside the building, there’s some new landscaping. A garden gnome in lederhosen is lounging in a hot-pink conch shell. A butterfly with a two-foot wingspan covered with multicolored LED lights and a dog wearing oversized reflective sunglasses frolic nearby. I believe I saw a similar scene when I took mushrooms in Washington Square Park in 1982. It seems like this display could test the mental health of residents whose hold on reality is already waning, but I am just a part-timer here, so what do I know?
Rhoda and I sit together. She doesn’t seem familiar with any of the prayers. Is that memory loss, or has she, like my mother, only recently returned to the fold? Some people sleep, a few recite the prayers, and there’s one guy who insists on singing loudly, calling out page numbers, and correcting the rabbi. Whether or not the rabbi lives in the memory care unit is unimportant; he has the patience of a saint.
Tonight the service is in English, courtesy of my dad. He led a Gardens-wide campaign for the services to be held in English once a month and the rabbi indulged him, even though Dad makes it through only a half an hour before either falling asleep or departing for the casino. Even that is astonishing. It’s possible that he is connecting to his roots, like he’s gotten a contact Judaism from the home. He’s been dreaming of Grandma Rose. In his dreams, she calls him by his Hebrew name, Hershel. “Hershela,” she says, “you didn’t get me the right coffin, the worms are getting in, please come and get me.” As morbid as it sounds, he seems comforted to be hearing from her. It’s probably a terrible sign—you hear about this kind of thing when people are nearing the end of their lives—but it could be that he’s hitting those lemon drops hard or actually listening to the rabbi’s sermons.
The rabbi tells us that night is a scary time in our tradition and we often don’t know if we’ll make it to the morning. No wonder my mother keeps the lights on; she must have heard this one a few times. My muscle memory kicks in and I’m swaying to the familiar melodies and I’m even grateful for Page-Number Guy, because it re
ally is helpful. At the conclusion of our natural sciences lecture, I kiss Rhoda on the cheek, wishing her Shabbat shalom. She smiles and asks politely, “Who are you?” I’m ready for another cry break but a few seconds later she’s remembered who I am and introduces me to the rabbi, who has again forgotten. As much as I want to ask him more about the fearsome properties of Judaic darkness, I can’t, because he asks how my mother is doing and says he’s going to visit her in the morning. I take out my phone, intending to take a picture of Rhoda and me to show my mother, but the rabbi stops me. “No pictures in the temple,” he says. Tomorrow we will be sitting in the same seats, posing for pictures, because the temple room is also the Sunday brunch room, but the sun has gone down and everyone knows now how scary a time it is for Jews, so I leave it at that. It’s seven thirty p.m. and I’m so exhausted that I drink two mini bottles of cheap airline Merlot and fall asleep with the lights on in my mother’s honor. I’m on Gardens Time.
In the morning, we attend the Father’s Day brunch, and although there’s no carving station, the spread includes smoked salmon and whitefish, which my dad and I agree is not at all shabby. We sit at a table with the residents of our building—even within the Gardens, you stick to your own. I’ve got a plane to catch, so I pack and hurry over to the recovery center to say good-bye.
My mother is dressed and seated in a wheelchair, waiting for me by the elevator. She wants to show me she is rallying. She’s wearing one of the outfits I purchased, a zebra-patterned jacket with epaulets, lending her appearance a slightly militaristic air. Shirley Gurwitch, member of the Senior Brigade, reporting for duty.
Wherever You Go, There They Are Page 23