This is an excerpt from Jennifer’s Berman’s memoir-in-progress, “What Is the Day For?”
Chapter One: The Death People
I’m walking down West End Avenue, not troubled by where I am going, but happy because spring is finally here, and soon I will see my mother. As I cross 82nd Street, I dig the crumpled scrap of paper where I’ve scribbled the address out of my front jeans pocket. I’m at the building twenty minutes early. My mother is always early too, but I have the feeling she’s not here yet, and so I sit on the bench outside and watch for her and my sister.
I see someone way down the street, still just a speck, but I know it’s my mom. My heart leaps! It’s not easy to get to see my mother—a bit like negotiating your way into the castle to see the Queen. She’s always been fiercely independent, and more so since she got sick—the opposite of what people expect from a Jewish mother, nudging her kids to call and visit. It’s my sister and I who are always calling her, asking if we can come to the house, and offering to go with her to doctors. Every once in a while she’ll surprise us by letting us come, and we drop everything to meet her.
When she called and said she wanted Rachel and me to come with her to a meeting with a social worker at a place called “Dying with Dignity,” I didn’t ask questions. My mother doesn’t like questions; I learned that as a girl. She likes clean and she likes order. She likes to iron. A question makes her face sour, like when I used to leave my toys out in my room. It’s a burden that unsettles her, a mess she has to clean up.
I, on the other hand, am a bit of a slob. My college roommate used to say that I always looked like I just rolled out of bed, but had had a good time. At 40, I’m still very casual. I mostly wear jeans, and keep my hair long, letting the curls dry naturally and haphazardly, like an untended garden. I don’t own a brush. I’m always asking questions, thinking out loud, reading self-help books and Eastern philosophy, trying to understand things that can’t be explained. With my mother, I know that unless we are having an especially good moment, unless she’s extremely relaxed, I have to contain myself. She may answer, “I don’t know, Jen,” a seemingly neutral statement to the untrained ear, but I hear the sigh of exasperation in her voice that warns, like thunder before rain, of the tension about to descend upon us, that could last—especially if we are in a car—the rest of the day.
My mother is closer now. I stand up and wave my arms back and forth, but she doesn’t see me yet. She looks like a movie star, dressed to the nines, and wearing full make-up, which is something she started to do when she got sick. Her hair has grown back from her last round of treatments. It’s not the sleek, straight, auburn bob from her pre-cancer life. It comes in grey and curly and when it grows past her scalp she colors it brown. It’s still short, which she’s told me she thinks makes her look butch, but I think she looks athletic and chic. She compensates by playing up her eyes. I’ve seen pictures of her when she was a young ballerina, with false lashes and eyeliner extending past her lids, and now her eyes look the same and her skin has a rosy glow. Whenever I see her I tell her how great she looks. And it’s true. No one would guess she has cancer.
We embrace. Her back feels boney. I admire her bright pink suit and ask, “Is this the Harari?” She’s told me about the Harari—a very expensive outfit she bought when visiting her friend Berta in Beverly Hills.
“Noooo, I wore the “Harr-rar-eee”—my mother over enunciates the word to mock her extravagance, “to the opera last night.” She bought herself a full season at The Met this year, also something she wouldn’t have done before she got sick. She likes to get all dressed up and go by herself. She has also been wearing her best jewelry, as she says, “saving nothing for good.”
My sister Rachel is running up the street towards us as quickly as she can in her strappy heels. As always, she is stylish and feminine, in a soft pink sweater set, gray slacks, and French manicure, but her eyes look glassy and tired. She hugs my mother, and then me, and we file into the heavily air-conditioned lobby where the doorman directs us to an old fashioned elevator. The attendant slides the metal gate closed and pulls the lever, bringing us upstairs.
I had expected an office, but we are standing in the foyer of a quintessential pre-war Upper West Side apartment. Everything is big—the open kitchen to one side of us, the living room with French doors leading out onto a planted terrace on the other, the exotic long-haired dog barking at us, and Judy the social worker herself—tall and expansive with brown frizzy hair to her shoulders and a purple baggy linen suit. She shakes my mother’s hand, while I bend down to pet the dog. I can tell my mother is nervous because she’s talking to Judy in the singsong voice she uses when she’s self-conscious with strangers. I go to her and she puts her arms around Rachel’s and my shoulders. “These are my daughters.” I love when she introduces me with the word “daughter.” She always sounds so proud.
Judy asks, “Which one of you is older?” It’s always hard for people to tell because Rachel and I are only two years apart and look nothing alike. Rachel has a wider face, small and delicate features, and blond hair, which she usually wears up in a bun. I’m narrow and angular, like my father was. Growing up, I was always jealous of Rachel for being the pretty one, but she always wanted to be thin like me.
The doorbell rings and the dog starts barking all over again. A man: bald, very well-dressed in a Brooks Brothers sort of way, mid-fifties, round wire-framed glasses, comes in and hugs my mother. I remember now that she’d said a man came up to her after an A.A. meeting and told her about Judy, but I had no idea he’d be joining us.
My mother introduces John to Rachel and me, and the five of us stand in the hallway and chat—about the dog (Judy tells us it’s an Afghan Hound), the apartment (it was the terrace that sold her) and like all good New Yorkers, about whether we think real estate will go up or down.
Then Judy says, “Let’s go inside.” My sister and John go to use the bathroom before we start, and my mother and I follow Judy into the living room. Judy sits in a black leather recliner and rests her feet on the ottoman. I sit on a small couch, expecting my mother will sit next to me, but instead she sits on an antique wooden chair on the other side of the room. I ask, “Mom why don’t you sit here with me? I think it’s more comfortable.” But she says, “No hon. I’m fine. Her eyes well up with tears. Rachel sits next to Judy, takes her thick Filofax out of her purse, and opens to a section with notepaper. She has been taking notes whenever we go with my mother to medical appointments. Afterwards, she goes home and looks up the information on the Internet, and calls me with statistics on how long our mother is likely to survive. John slumps in a chair on the other side of Judy, draping his leg over the side, which I think is odd.
Judy begins by asking, “So girls, what do you think of your mother’s situation?” This strikes me as cruel. Our mother has cancer in both lungs, her bones, and her brain. The chemo has stopped working and the laser surgery failed, so now she faces full brain radiation. It may shrink the tumors temporarily, but there is the risk she will lose her mind.
I say, “I don’t know how to respond to that.” We are all silent. The dog comes into the room and flops down by Judy’s chair. Birds chirp on the terrace. Judy says, “All we do is provide information that’s all over the Internet. It’s perfectly legal.”
Again we are all quiet. I am lost. Then she says, almost casually, like we are chatting over tea, “Have you been following the Terri Schiavo case? I read in The Times that her parents may win the appeal.” And like a light switched on I get it. “Dying with Dignity.” I thought Judy was going to teach us how to help my mother die as comfortably as possible, but she must be broaching the subject of a DNR so my mother won’t wind up like Terri Schiavo, kept alive by a machine.
I say, “We want to support our mother in whatever she wants to do.”
Judy asks, “Susan, what is your prognosis after the procedure?”
My mother clears her throat, “I expect there will be a process of diminishing cognition.”
“Then you won’t want to be having fancy conversations with doctors.” Judy leans back in her chair. “There are directions for making gas machines on the Internet. But the best, and by far the simplest method is Secanol.”
Slowly I grasp what is happening and wonder why my mother didn’t warn me.
Rachel looks up from her notes and asks, “What is Seconal?
“It’s a sleep medication. Pills. Susan, you should get prescriptions right away. There’s a limit on how much a doctor can legally give you, so you will need three different scripts. You’ll tell the doctors you’re having trouble sleeping. They’ll try to give you Ambien. You’ll say you’ve tried everything in the past and Secanol was the only thing that helped. They’ll probably know what you’re up to, but if they’re sympathetic they’ll cooperate. Are there three doctors you can ask?”
A tear runs down my mother’s cheek, but her voice is steady. “I have a cousin who is a physician.” Then she says to Rachel and me, “I don’t think Phyllis would do it.” Phyllis is a pediatrician, my Aunt Lee’s best friend from childhood. Lee was my mother’s only sibling. She died unexpectedly one year ago, just after my mother’s diagnosis, when undergoing a medical test. Lee had been experiencing shortness of breath and Phyllis had arranged for her see doctors at Columbia Presbyterian during a family visit. The test was considered routine. Lee was supposed to fly home to Santa Fe the next day.
Ten months later, my grandmother died. Phyllis took the limousine with us from the funeral to the burial site. While we were in the car waiting for the rabbi, my mother asked Phyllis what she thought about hospice care. Phyllis said she was against it because often the nurses can’t get enough morphine. And there could be a delay with finding a doctor to pronounce the patient dead. The family could get stuck with a corpse in the house for days.
My mother, who is a realtor in the Hamptons where she lives, said that another drawback is when there’s a death in the house the property value goes down. I wanted to tell my mother that Rachel and I didn’t care about the value of the house, and that Grandpa Jack, my paternal grandfather, had hospice care at home without any problems. But I knew my mother would resent my interfering. She saw Phyllis as the expert, and would think I was being a know-it-all, trying to tell her what to do.
After a moment, my mother looks at Judy and says, “Yes, I think I’ll be able to get three prescriptions.”
“Good. There should one other person involved. Susan, do you have a friend you can ask to help?”
My mother thinks out loud, “Not Whitney, she’s Catholic. Eileen. She lives across the street from me. She’s the one I’ve asked to tell me when my judgment starts to go. I don’t want the girls to have to do that.”
Judy starts to say how important it is that we not tell anyone else, when she’s interrupted by a blast of motorcycle engines outside. She waits for them to pass, but they just keep coming. I think it must be a group of Hells Angels. Judy jumps up, goes to the window, and mimes a machine gun in her hands, “Eh—eh—eh—eh—eh. Don’t you just want to shoot ‘em?”
John, who hasn’t said a word this whole time, laughs manically, and my sister and I lock eyes. I know we’re thinking the same thing. She says it later, as soon as we get to talk, “Those people love death!” It is then that we coin Judy and John “the death people.”
When the motorcycles pass, Judy explains the procedure for administering the drugs. My mother must ask for them on three different occasions. The third time Rachel or I will need to crush the pills into a glass of water.
“Can’t I just swallow them?”
“No, there will be too many pills, hundreds. Susan, where do you plan to be?”
I don’t know what she means, but my mother says, “A hospital in New York. It will be easiest for the girls.”
I think it is Judy being there, knowing my mother won’t blow up at me in front of her, that gives me the nerve to speak up, “Mom, we don’t care about what’s easiest for us. I know Phyllis said that there are problems with hospice getting enough pain medication, but Grandpa Jack had hospice care in the house and it was fine.”
“I’ve worked with hospice for many years, Susan. As long as the nurses order the morphine on time there will be plenty, and it will be a lot easier to give you the Secanol at home. They don’t do autopsies on hospice patients.”
My mother turns to Judy, “I want to protect my daughters.”
“But it doesn’t work, Mom. It’s like when you didn’t let Rachel and me come to the hospital before Lee died because you said you didn’t want us to see her like that, just staring out into space. It just makes it worse.”
Judy says, “Good for you!” like she’s our family therapist, which for the moment she is. She asks, “Susan, where are you most comfortable?”
“In my home. Definitely.”
“Mom, I’m not trying to tell you what to do. I’m just saying I think you should stay at home, because that’s what I’d want for myself.”
My mother gets up, walks over to the couch, and sits beside me. I rest my hand on the back of the couch behind her. It’s very delicate with my mother. I don’t know how she’ll react if I put my arm around her, if it will be too much. I stay like that, almost touching her, until we leave.
The next day I get a voice-mail, “Sweetheart, I would want to know you, I would love you, even if you weren’t my daughter. I’m so grateful you were there.”
I save that message on my answering machine for a very long time.