Itch Itch Itch: notes on a mother’s death
By: Jamie Berger
Tags: Death And Dying, Creative Non Fiction, Memoir, Mothers

It’s time to go. Two giants arrive to take my mother to hospice. Humongous ambulance men. The smaller one is about 6’2” 250lbs. The huge one is much bigger in every way — he lifts my mom out of bed like she’s a toddler. Her not-5’2” is now well under five feet. Her 135-some pounds that she always wanted to lose five of now down to what must be 85, tops. “Just pretend we’re dancing, sweetheart” the giant says, as he hoists tiny rag-doll Sheila, incredible, into a wheelchair. Sheila Berger is dying, fast, but she’s just 73, not nearly as old as she’s come to look in the past month, flesh hanging off her bones, face sunken more each day, more of a skull than a head. Deathly. The two giants don’t realize they’re taking her in for good and all, they just know we’re going to the hospital. They talk to her in ways that someone talks when someone is going to the hospital for the normal reason, to get well. The way you talk to someone who’s going to be coming home again.

I have always trusted doctors, even liked going to them, because they tell me what’s wrong and eventually fix it. Until they can’t. This is what we learn, now, Sheila and I. Until they can’t. Sheila has always driven doctors up the wall. There’s a public service announcement on TV lately encouraging people to ask their doctor questions. It shows some guy asking a million questions to the phone store clerk, his car mechanic, a waiter, but then in the doctor’s office, Doc says, “Any questions?” and the guys says, nothing, shakes his head, nope, uh-uh, I’m good. That ad was not made for Sheila Berger. She researched and printed out articles and clipped and copied and brought her lists into their offices and got her goddamn questions answered. She’d sit down in their offices, unpack her bag and begin the interrogation. She made doctors miss tee-times. Male doctors especially hated it. But a month from now, when I call the woman who was her long-time GP for the last time to tell her Sheila is gone, she cries. That’s how it is with Sheila Berger. She’s a great pain in the ass, great meaning “big” and “overwhelming” and “wonderful.” A wonderful pain from which I will soon have horrible relief.

Three days after her 73rd birthday, here we are at “The Inn,” The fucking Inn, the hospice wing of St. Peter’s Hospital. No more research to be done, no choices to be made. No more questions to be asked/answered except for a few about time and pain, and I’m the one doing most of the asking. Everyone gets a single room at the Inn. People are dying to get in and then they die to get out. Ba-dum bum, tshhhh. I’ll be here all week. Good, she says, out of nowhere, once we’ve got her set up, I don’t like the number 72. You don’t like twos, it’s true, I agree. You and your nines, she replies. Me and my nines, her and her threes. When my father and I went to the track once or twice a summer, she’d always give me three dollars to bet on the three horse in the third race.

Today, the intake nurse talks to us. Sheila tells her she wished she lived in Washington (state) so she could pull her own plug, that she hates this waiting to die, that she doesn’t want to watch herself waste away. The woman tells us that at hospice they don’t think of it as waiting for death but as “another phase of life.” My mom looks the poor woman dead in the eye: Well I don’t see it that way.

Done versus Finished. I remember a Thanksgiving or Christmas dinner conversation about “done” versus “finished.” Walter, my mother’s mentor and friend, her former professor, former chairman of the English department they were both in for thirty-some years, disgusted with his students for not knowing the difference between the two. “It’s so very simple.” Walter, tall and aristocratic, a British-y, deep-voiced Canadian — formerly competitive tennis player, decorated WWII vet who came back and went to Harvard for his Phd, Walter Knotts, truly elegant, probably life-long closeted gay man. “How, how can they be so daft?” To this day, with my two-going-on-three degrees in English, I can never remember the difference. Sheila is done? Is finished? When food is cooked it’s done, when we’ve eaten it all, it’s finished. Is that it? Is she done, ready to come out of the oven of this life, ready for carving? Or finished, all eaten up, nothing left but scraps.

Sheila Barbara Strongin Berger lies in her hospice room at The Inn becoming a skeleton and I think I am fucking hungry I really want to go eat some fucking KFC I really want to go flirt with that bartender girl (she’s 24, Rachel, a girl compared to me, certainly, if not the word I’d use in public) at the Thai restaurant next to the KFC. I really want to go play online poker. I want to consume, I want action action action! I crave action. There is very little action available to me right now. Sedation is much easier to come by, via drinking, via Mom’s xanax. And so I go the bar of the Thai place next to the KFC where the Rachel girl works and I drink and I chat with her and she chats with me, seems relieved to have a stranger to talk to on a dead night and when she goes off to serve someone, I read my book I’m reading. Action and sedation, perfect. She tells me about school, about her punk-rock boyfriend. I tell her about my mom. I read an amazing page I love and I read it again, and repeat: sip whiskey, flirt, watch her healthy young hands and arms make drinks, watch the rest of her as she walks away, read again, and repeat, and the world softens a bit and I am grateful and thankful for reading and sad for Mom who doesn’t even have the energy to listen to me read to her, and then for myself for not ever taking the time it would take to even conceive of writing such a page I’ve just read and reread, such an important page, a page that makes some people think about something momentous in a new way, makes others think about it for the first time, and laugh and shake their heads and maybe later take action. Read, sip, watch, repeat. I write a note about the page in a small black notebook, and now I’ve typed it here. Scribble.

Back in the apartment, I chomp down my Three-Piece, Original Recipe, holding on as long as I can to this couple-hour respite/reverie. It’s extremely hard right now to see the point in healthy living when someone who, for the past twenty years, measured her portions to the ounce, exercised exactly as much as the books told her to, did her yoga, drank her green tea . . . you get the idea … is where she is right now four weeks to four months from her end, at 73.

No more tiptoeing around the apartment. I stomp the fucking creaky fucking floors. I turn the TV up. I sleep in my mother’s bed. On the sheets she’s been sleeping on. They don’t smell like anything. Nothing left of her to smell, no sweat, no shit or piss, nothing. The idea of sleeping on this bed feels kind of creepy, but what a great mattress! I get good and sedated with one more pill and one more drink, and actually sleep six hours straight.

Through this all, friends on the other end of the phone — enlightened, liberated (what we now, a decade later, call “woke”) men, tell me to “be strong.” BE fucking STRONG. How ridiculously macho and useless a thing to say. What the fuck is in that for me. Women do not tell me this.

“Be weak. Feel EVERYTHING!” That’s my fucking motto.

Not that I live up to it or anything, but it’s good to have a motto. Carpe Mortem.

Five days before my mother is to die, 17 days after they “gave” 28–120, I sit in the huge leather lounge-chair in the fluorescent dayroom at the Inn. A pair of overweight, early-teen cousins watch TV. Visiting a parent or grandparent, I wonder. One is on the phone, she is whiny-sarcastic: You know? Why I don’t? find that funny? she asks.

I play Wurdle, a Boggle-ish word-finding game, on my iPhone, at 3am, at her bedside. I love my iPhone. Each game is three minutes: ready . . . go! Dead, Deadly, Deathly, ade, deed, dad, done, donut, enod (well, I tried), node, noded, nodes. No “mom” this screen but she does seem to show up a lot lately.

I sit, I pace, I watch TV in the day room in the middle of the night. I leave the hospital, I go to the seedy, old-man dive bar across the street. Behind the bar is one very old man, the game on the TV. I am the lone customer. One too many, by the look on his face. I have a shot and a beer and go “home.” I look at porn, I play poker online. I watch TV. All at once. It starts to get light out, so I go to sleep. They will call me if anything happens. I am positive they won’t reach me and I’ll miss it, somehow, and I’ll have fucked up again.

Daytime. I visit my father for lunch. He actually asks “How is she?” I look at him, I look across his living room. I notice he’s bought a home blood-pressure machine.

That time she said she wished I was gay. Or did it ever even happen? I’ll have to ask her. I know it happened, but in what context? There’s a sentence I won’t be thinking for long: “I’ll have to ask her.”

At the end of freshman year of college, she called me in New York and screamed and screamed at me on the phone for looking for an apartment and a summer job before finals were over. Fucking this fucking that, you’re a fuckup! The Sheila rage. (The apology a few hour later, of course.) She, obsessing over my life of distractions, of unfinished projects, flawed, unrealized, undone, distractions stopping scribbles from being more than just scribbles, sketches, beginnings so many beginnings of stories, novels, poems, plays, artifacts of unrealized potential. Teachers telling her that I had a great deal of it, it all the way back to middle school. I remember screaming back at her over the line, until I cried, she was being so unfair, but, as always, also spot-on, a C+, some Bs, an A-: it’s the life I’ve more or less led, a 2.99999 GPA life (back when a 3.0 was a B).

Day two at the Inn. She is finally getting comfort, aka more morphine. Hospice is largely about comfort/morphine. A place to go to be given it, to give in to it. A little more each day. We say we don’t euthanize, but that’s exactly what we do, if subtly. Thank God. The head nurse, an actual her-real-name Donna Reed, is very nice, and good. A bit too hospice spiritual-self-help-y peppy, of course — “What do YOU need?” she asks me, often — but good. She cares. For the first time in weeks Sheila sleeps for hours at a time, and peacefully. It’s just about all she does. When she wakes, one time, I gently rub at the furrow lines between her brow. I am getting used to touching her more. Holding her hand, petting her arm. I will do these things. She will let me. Sheila Berger is teaching me how to die. She is an excellent teacher, as always.

Sitting on the toilet in the little bathroom next to the kitchen that’s available for all to use, at The Inn. They’re nicely set up for people to stay a while, to settle in. Outside someone sits down at the dayroom piano and begins to play a player-piano-sounding version of “We Three Kings of Orient Are.” It is December after all. Plinky plink plink. A rush of memory comes:

Christmastime, years ago. Up our block were two houses shared by six of my mom’s Consciousness-Raising-group friends, her radical lesbian friends, the people she won’t let see her now. Judy wears a cashmere cowl-neck-sweater. Joan plays the piano while Francine directs us in rousing “We Three Queens of Orient Are” and other re-gendered holiday hits. Here at the Inn, the dayroom piano plinks on.

Sheila’s neck is all spine and two ropey hints of muscle. Her body is eating her to stay alive but all the while the cancer belly grows and grows. The cancer still gloating. We let it gloat. We don’t worry about it any more. Just about comfort. To get mad at it now is just to lose again.

Back at the apartment, half-drunk and rageful and full of bad Chinese food, needing sleep and wanting action action action. I google “strip club” and “Albany.” In my life of porn and peeps, I’ve never been to a strip joint in my hometown. A few minutes later, I’m down in a seedy edge of wrong-side-of-the-tracks Albany I never even knew existed. Down by the river, at “Ciro’s Place.” The club has a parking lot with a barbed wire fence around it — promising. Inside the club is very small, dark, not terribly filthy, but somewhat rundown. The dancers are black. As is the bouncer. And the bartender. A Bud is just $4.00, a bargain for a club. It’s an empty weeknight, after midnight, and it’s just me, the bouncer, the dancers, the bartender. A dancer comes up. We have the usual chat, what brings me here, do I want a lap dance, I’ll think about it. She is half drunk and pouty. I buy her a drink. She rubs against me. Hand on my thigh. Tells me about her daughter, about moving up from Philly. Do I want a dance yet? Maybe soon. How ‘bout now? Okay, sure. I really really don’t want a lap dance, but her daughter’s future education really wants me to. I pay her $15 for the dance. She rubs around on me. And I’m not even attracted to her, she’s so obviously bored. I pay for a second dance. I manage to beg off on a third and get out the door. Action, yippee.

In the living room, I watch TV and pretend that I can write while I’m watching TV because I’m allowed to do whatever I want right now, tap out some notes about the evening. Eating is just one of those escapes of mine, Mom. But she knows that. The rest was inferred. I can do whatever I want because my mother is fucking dying and she said I can, that’s why. You got a problem with that? I know how to touch-type because she made me learn how between senior year of high school and college — so YES I CAN ABSOLUTELY write and watch TV — thanks, Mom! I’m doing it right now, to NBA highlights. So there. As I sit here, post Ciro’s, I wonder, what are your secrets, Mom, where are they? You must’ve written something down, you wrote everything down. And if I find something? Or if I find something in my head that I really really want to ask you, something I want to know, some advice I need you to give, I can’t because YOU CAN HARDLY TALK ANYMORE. And in a day, maybe two, you won’t be able to talk at all. And a day or so after that . . . . I stay up late. Late late. 5am late. I will be in no shape tomorrow. I don’t need to be in shape. This is a fucking vacation. A vacation of grief. I have nothing else on my calendar, no commitments at all.

Donna Reed tells us she needs to perform a procedure to see if my mother is retaining urine, something like an ultrasound, to peer through cancer belly and look at her bladder, to insert something in her to drain fluid, maybe. My mother breathes, Is this . . . for longevity . . . or for comfort? Comfort, Donna replies. Sheila nods, this is the answer she wants. If we’d met under more pleasant circumstances, I’d fire “It’s a Wonderful Life” lines at Nurse Donna Reed. “Mary, dontcha know me?” It’s probably on TV every day now. A movie my mother and I watched together many times. My favorite Christmas movie. I think she likes “Miracle on 34th Street” a little better.

Sheila Barbara Strongin Berger is ready for her life to end. Time’s up. Pencils down.

In the day room. Lights are off, late afternoon again, dusky. Quiet but for hum of hospital. I walk down the hall. They have drained the fluid, offering some relief. My mother sits upright, her electric bed has seated her upright. After being scanned, drained, and sleeping all day, she can barely speak: I’ve been sleeping so much. Usually after they drain me I’m so much stronger. Don’t know why I’m sleeping so — . . . The pause is long. She takes a deep breath, a big effort. I’m dying.

We go to doctors, to hospitals, expecting to be made well, no matter what we know to be true. We expect. To go on. To keep scribbling. Stopping makes no sense at all.

I sit in the day room, three-AM, lights out, visitors gone except for the one family on death watch all packed into the room down the hall. I’ve been to the old-man bar plus half a xanax, but I can’t go back to the apartment, can’t bear to leave here, to sleep, can’t risk missing it. So I play poker on the screen with people awake, somewhere, people in Vegas, and Sweden. Notoriously, bizarrely aggressive, the Northern Europeans. I bet and I raise and I fold, I win and I lose, and I . . . go look in on her. I turn out the bedside lamp. “Bedside,” lovely word. Her lungs pump air, in out in out, in and out. The fucking horror. All my life I’ve had nightmares of my father dying. Never her. She is supposed to keep driving me up a wall forever. My heart won’t stop pounding and I have no more drugs for it right here and … fuck. Where’s MY morphine? Does everyone visiting The Inn think this at some point?

I am the only visitor. No one but me. They will not will not will NOT see her like this, her dictum. All those so-called friends, all those people who’ve betrayed her in one way or another. These last years she sees betrayal everywhere. Somehow never in me. They will not remember her this way. This is part of her thinking. See Mom, I do know you. I do. I just hoped there was someone, anyone besides me and Anja, you could let in, we could let in. But I am the gatekeeper, and I have kept that fucking gate. No one has dared disobey Sheila’s rules, certainly not now. The word is out. They don’t come. They sit at home and wait for word from me. At the memorial next spring they will talk to me about it, some of them, their anger a burden, impeding their sadness, their mourning, their closure of the Sheila Berger book, that I try to help them unload, that day, and we will all feel better, at the angriest memorial ever.

My mother is about to die, but I will keep on living. A simple, declarative, complex sentence. Declarative? Complex or compound? How many years teaching English in one way or another and do I even know what that means? It is a sentence making a declaration, but is that what a declarative sentence is? Did she ever teach me this? I don’t think “finished” vs. “done” meant much to her, but yes, I know she taught me compound and complex sentences. Does anyone even use those terms anymore? Sorry Mom, sorry Walter. Words don’t always mean what they mean. This I declare. This is how it goes. It goes this way. Suddenly I’m writing like Laurie Anderson. Yes. “Oh Mom and Dad, Mom and Dad, ha ha ha ha ha ha ha-ahhh.”

One of the nurses tells me she’s stable, that I can go back to the apartment and shower and rest a little. I do shower — long, hot. I hang on to that bar she made them install when she moved in and lower myself into the tub. I sit, and sob, really really go at it. I force it, like puking, until I really am almost gagging. I sleep and wake and go back to the hospital. Morning people coming to work. Others checking out. Shift change. Something very alive about all this. I want to hug them all for this bustle. In her room, Sheila tosses and turns, opens her eyes looks around, but can’t see me, can’t see this world anymore, zombified, her gaze, like nothing I’ve ever seen. Mostly just reflex. She was always so present, direct: Look at me when I’m talking to you, Jamie. Now she’s all horizon, far away. She scratches and scratches her arms, her belly, then she turns, suddenly stronger, turns and looks right at me, out of nowhere, says, Itch itch itch, assertive, almost annoyed, but resolved, an almost comic what can ya do? statement. Lies back down, closes her eyes, scratches and tosses and turns. The pamphlet told me about this restlessness near the end. I tell Donna Reed. She ups the morphine. Mom stops tossing and scratching. Donna Reed turns to tell me something. Then she doesn’t. Knows I know. That Sheila probably won’t be tossing any more. That she’s really not here any more. Nothing more to worry about. No more scribbling, no more itching. Itch itch itch — famous last words.

First the old woman with the big, weepy family was gone. Then, just today, the younger woman, middle-aged at best, heavyset, who would cry out undecipherable sounds for hours to whichever loved one was at her bedside or out in the hall. I could only see her through a crack in the door as I paced the halls. Her people scowled at me, as if I didn’t belong there. But I come this morning and they’re the ones who have no place here anymore. I’ll be staying from now til the end. Getting so close. Can’t miss her going. Can’t bear to let her go alone. Not to see her go, not to see her off. Need to see it to believe it. Sheila’s dying and death itself. To accept it. A boy can dream.

I call Anja, tell her to come in the morning. Morning comes, and here she is. So good. Young woman, those arms so warm with blood. Alive. Her lovely loving face. So alive, so warm. It’s midday, nothing changes, but it’s coming, coming.

Donna Reed adjusts my mom on the bed, ups the morphine again, for comfort, always for comfort. Sheila moves around now a little, but hardly at all. Is a mind working in there, even to dream, or just a brain sending signals to a body pumping stuff around for a last little while? Donna leaves, shutting the door behind her, and soon my mother’s breathing starts to slow. Five seconds, ten, twenty, between breaths. The inhales are gasps, the exhales define expiration. We think it’s over. Then one more…. Then one more…. Shorter and farther apart. Something still fighting. Then nothing for a long time, thirty seconds, a minute, ninety seconds. Nothing. We cry, we hold each other. I take my dead mother’s picture, I don’t know why. She would get it. She always got it, got me. We say goodbye to someone who isn’t there. Soon they will take her away. Unbearable. I keep kissing her right at the bridge of her forehead/nose. The horrible horrible relief. Cold little bones. Done.