“What Is The Day For?”

Jennifer Berman

Like a light switched on, I get it. “Dying with Dignity.”

It is the first warm day in spring. I am walking down West End Avenue, singing a song to myself, early to meet my mother and sister. My mother, like me, is always early, but when I get to the address on the yellow sticky pad sheet crumpled in my jeans pocket I have the feeling she isn’t here yet, and sit on a small bench opposite the building, my face turned towards the sun.

I see someone way down the street, still just a speck, but I know it is her. My heart leaps. It is not easy to get to see my mother—a bit like getting in to see the Queen. My mother has 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 visit.  It is my sister and I who are always calling her, asking if we can come to the house, 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 I called last week she said she wanted my sister 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 because I was afraid she might get flustered and tell me not to come. I’d learned as a girl that my mother didn’t like questions. She liked clean, and she liked order. She liked to iron. A question was the same as leaving my toys in the middle of the floor. It was a burden. It unsettled her. I think it is because she felt such pressure to have the right answer. A question knocked her off balance. It was a mess she had to clean up.

I, on the other hand, am a bit of a slob. My roommate said to me in college that I always looked like I just rolled out of bed, but had had a good time. At forty, I am still very casual. I keep my hair long and let the curls dry naturally and haphazardly. 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 is 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 between 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 beautiful, dressed to the nines, which is something she’s been doing since she got sick. Her hair has grown back. It’s not the glamorous straight auburn hair from her pre-cancer life. It’s grown back curly, and is still short, which she told me she thinks makes her look butch. The last time I saw her it was grey, but now she’s colored it brown. She is wearing an exquisite bright pink suit with gorgeous suede pumps she must have bought in Italy. She sees me now, and her face lights up. She looks like a movie star. I have seen pictures of her when she was in a ballet and young, with false eyelashes and thick eyeliner extending past the lid, and now her eyes look the same. She is so good with make-up. The mascara brings out her already huge green eyes, and her skin is glowing. I have told her many times that she looks so healthy that, “If I didn’t know, I wouldn’t know.”

We embrace. Her back feels tiny. I admire her jacket and ask, “Is this the Herrarah? She has told me about the Herrarah — a very expensive designer outfit she bought when visiting her friend Berta in Beverly Hills. She would have never spent that kind of money when she was well.

“Noooo, I wore the “Herr-rar-aaah” — my mother over enunciates the word to mock her extravagance, “to the opera last night.” She had bought herself a full season at The Met this year, also something she wouldn’t have done before. She likes to get all dressed up and go by herself. She also has been wearing her best jewelry, as she says, “saving nothing for good.”

My sister walks up from behind my mother. As always, she is stylish and feminine, in a pink cashmere sweater, grey slacks, and a French manicure, but her eyes look glassy and tired. She hugs my mother and then me, and we file into the heavily air conditioned building, where the doorman directs us to the elevator. The attendant slides the door closed and pulls the lever, bringing us upstairs.

I expected an office, but my mother, my sister, and I are standing in the foyer of a quintessential Upper West Side apartment. Everything is big–the tremendous open kitchen to one side of us, the living room with a grand piano on the other, the exotic dog barking at us — and Judy the social worker—tall and expansive with shoulder length frizzy hair, and a loose fitting suit. Judy shakes my mother’s hand, and I bend down to pet the dog. I can tell my mother is nervous because she is talking to Judy in a singsong voice she uses when she is self-conscious with strangers, and for some reason when ordering at Chinese restaurants. I go to her, and she puts her arms around me and my sister, “These are my daughters.” I love when she introduces me as her daughter. She always sounds so proud. I shake Judy’s hand and say, I’m Jennifer, and this is Rachel.” Judy asks who is older. I think part of what throws people, besides us being close in age, is we look so different. Rachel has a cherub face, straight hair she colors blonde, and usually wears in a bun. I have more angular features, like my father. Growing up, I was always jealous of my sister for being the pretty one. My mother put it diplomatically once when she said that it was just that I had more awkward years. But Rachel has always been jealous of me for being thin. I tell Judy, “I am two years older.”
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, obviously gay, comes in and hugs my mother. I remember now that my mother told me that it was a man in AA who told her about Judy, but it didn’t occur to me that he would be here. My mother introduces John to me and my sister, and we all 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 in the city will go up or down.

Then Judy says, “Let’s go inside.” While my sister and John use the bathroom before we start, my mother and I follow Judy into the living room. I sit on a small couch, expecting my mother will sit next to me, but she sits on an antique wooden chair on the other side of the room.

I say, “Mom, why don’t you sit here with me? I think it’s more comfortable.”

“No hon. I’m fine.” Her eyes well up. Judy sits on a big leather chair in front of the French doors that open out to her terrace. Rachel comes in and sits on a wingback chair next to Judy, takes her giant Filofax out of her bag, and turns to a section with paper. She has been taking notes whenever we go to doctors with my mother. Afterwards she goes home and looks everything up on the internet, and calls me with statistics on how long our mother is likely to survive. John sits slumped on an easy chair, and drapes one leg over the side, which I think is odd.

Judy begins by asking, “So girls, what do you think of your mother’s situation?” What a bizarre question! My mother has cancer in both lungs, her bones, and her brain. The laser brain surgery has failed, so the last resort is full brain radiation, which at best will shrink the tumors for a few months, but there is a great risk of my mother losing her mind. Gee, Judy. So glad you asked. We think it’s swell.

I say, “I don’t know how to respond to that.” We are all silent. The dog walks into the room and flops down by Judy’s chair. Judy says, “All we do is provide information that is available all over the internet. It is 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 just read in The Times that there is good chance her parents will win the appeal.”

Oh! Like a light switched on, I get it. “Dying with Dignity.” I just assumed we were going to discuss how to help my mother die in the most humane way possible. I thought it was a patients advocate group, something like hospice. But Judy must be talking about a Do-Not-Resuscitate order or making sure my mother doesn’t wind up chained to a machine. I say, “My sister and I want to support my mother in whatever she wants us to.”

Judy turns to my mother, “Susan, what is your prognosis after the procedure?”

“I expect there will be a process of diminishing cognition.”

“Then you won’t want to be having fancy conversations with doctors.” She 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 Seconal.”

Slowly, I grasp what is happening, and wonder why my mother didn’t warn me.

My sister looks up from her writing, “What is Seconal?”

“It is a sleep medication. Pills. Susan, you should get the prescription right away. There is a limit on how much a doctor can legally prescribe, so you will need three different scripts. You’ll have to tell the doctor you are having trouble sleeping. He’ll try to give you Ambien. You tell him you’ve had this trouble in the past and Seconal was the only thing that helped. He’ll probably know what you’re up to, but if he’s sympathetic, he’ll cooperate. Are there three doctors you can ask?”

A tear is running 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 was my aunt’s best friend from childhood and a pediatrician. She took the limousine with us to my grandmother’s funeral a few weeks ago. My mother and she were talking about hospice. Phyllis said she was against it because she knew of many instances where the patient was unable to get enough pain medication. I wanted to say how my grandfather–my father’s father–had hospice in the house and it was fine, but I knew my mother would resent my interfering. She saw Phyllis as the expert, and would take it as my being controlling, imposing my view.

After a moment my mother says,” Yes, I think I’ll be able to get three prescriptions.”

“Good. There should be 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. She wouldn’t do it…Eileen. Yes, Eileen. 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, but is interrupted by the noise of motorcycles going by outside. She waits for them to pass, but they just keep coming. I think it must be a group of Hells Angels. All of a sudden, Judy jumps up, mimes a machine gun with her hands, and intones the sound of bullets, “Eh-eh-eh-eh-eh–Don’t you just want to shoot ‘em?” John, who has been silent this whole time, laughs maniacally, and my sister and I lock eyes. I know we are thinking the same thing. She says it to me later in the restaurant, “Those people love death!”

When the motorcycles pass, Judy explains the procedure for giving my mother the pills. My mother will ask for them on three different occasions. The third time someone will need to crush the pills into a glass of water.

“Can’t I just swallow them?” Judy tells my mother, “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 freak out in front of her that gives me the nerve to speak up, “Rachel and I don’t care about what is easiest for us.

I know what Phyllis said about problems with hospice not being able to get enough pain medication, but Grandpa Jack had hospice care in the house and it was fine.”

Judy says, “I have worked with hospice for many years. As long as the nurses order the morphine on time there will be plenty, and it will be a lot easier to give you Seconal at home. They don’t do autopsies on hospice patients.”

“Mom, I’m not telling you what to do. I’m just saying that I think you should stay home, because it is what I’d want for myself.”

Judy asks, “Susan, where are you most comfortable?”

“My home. Definitely.”

My mother gets up, walks over to the couch, and sits next to me. I rest my hand on the back of the couch behind her.  It is very delicate with my mother. I don’t know how she’ll react if I put my arm around her shoulder, if it will be too much. I leave my arm on the couch like that the rest of the time we are there.

The next day there is voice-mail from my mother. She says, “I would want to know you. I would love you, even if you weren’t my daughter. I am so grateful you were there.”

I save that message on my answering machine for a very long time.

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