by Susan Moon
OK, we could wait “a few days.”
We slept, or tried to sleep, in our mother’s apartment at the other end of the city, and we spent long days at the hospital. We took turns staying with her, watching the monitors, calling the nurses to raise or lower the bed, or to brush her mouth with a wet swab, surrendering ourselves to her care with an unfamiliar abandon. This room that was cluttered with medical equipment was miraculously swept clean of all our habitual impediments to love; I wasn’t worried, for example, about what she thought of my hair.
“That clamp looks so tight on her upper lip,” I said to the nurse.
“It has to be tight,” the nurse said, “to keep her from pulling it out.”
My mother was trying to communicate something: she was waving her arms, she leaned forward and shook her head in frustration, then fell back on the pillow, exhausted. A nurse brought a felt-tipped pen and a whiteboard, and we wrapped her fingers around the pen, but the marks she made were too wobbly to read, and the pen soon fell from her hand. Next we gave her a board with the alphabet on it, and her hand moved across the smooth surface like the pointer on a Ouija board, but it was hard to tell when she was stopping over a letter and when she was just on her way to another letter. We kept guessing the wrong letters, until she pushed away the letter board with a frustrated shrug.
We supposed she was trying to say something about the breathing tube. “We know you hate this tube, Mom, but we promise it’s going to come out, and then you’ll be able to say whatever you want!”
A few more days went by—it had been a week now—and we were told she had pneumonia, probably because of the breathing tube, and she was put on massive doses of antibiotics. This was a big bump in the road. They wouldn’t be able to take the tube out until she got better from the pneumonia.
THE SECOND WEEK
A respiratory therapist came a couple of times a day to suction her out—a dreaded procedure. He pushed a tube the width of a straw down inside the wider ventilator tube, working it down, inch by inch, into my mother’s lungs, as her left eye opened wider and wider in alarm, and even the heavy right lid lifted enough to show a slit of eyeball. I gave her my hand, and she squeezed it. Then came the bad part, when the RT pulled the little tube back out, creating suction. There was a rasping noise for a few seconds, like the sound a straw makes at the bottom of a milkshake, and my mother shuddered, and we watched the yellow phlegm come up through the translucent plastic tubing.
“Thank you, Alice,” said the RT cheerfully.
My mother reached her sausage fingers up, trailing a wire that was clamped to her forefinger, and her hand came within inches of the breathing tube before it was stopped by the wrist restraint.
My brother and I took the elevator down to the hospital café for a break. There was no getting out of this situation—wherever I went I was always in it. Still, it was a relief to sit in the café downstairs, surrounded by the hum of strangers’ voices and the clacking of food trays. “I feel like I’ve lived in this hospital all my life,” I said.
“Yes, it seems like time has stopped,” my brother said. The skin of his tired face looked like soft flannel.
“Well, she’s going to get better or she’s going to get worse,” I said. This was an oddly comforting thought.
One morning when we came into the room, the breathing tube was attached with tape to our mother’s chin, and there was a bandage on her upper lip. The nurse said, “I have bad news—the clamp made a hole in her lip. I’m terribly sorry. I’ve called down to plastic surgery—someone will be up later to look at her—I don’t think it will seriously disfigure her.” She lifted the bandage to show us a hole in our mother’s lip the size of a dime—a window with a bloody frame, through which I could see gums and teeth. “Remember,” the nurse said, “she’s been heavily sedated, so I doubt it feels as bad as it looks.”
On the ninth morning, a Tuesday, she looked paler and more remote than ever. Discouraged, we told Dr. M. we didn’t know how much longer we could put her through this. “We’re thinking about asking you to take that tube out now, whether she’s ready or not.”
He took us seriously. “I understand that you want to honor Alice’s wishes, and I respect that. I won’t stand in the way of whatever you decide. But she still has a good chance.” He straightened up and spoke with a burst of fresh energy. “Give me until Friday! I’m making it my goal to get her off the ventilator by Friday.”
Encouraged by the vigor of his new vow, we agreed to hang in there for three more days.
In the meantime, with Dr. M.’s support, we had an exploratory meeting with Dr. Z. from palliative care, in case the time came that we decided to withdraw life support. He was tall and thin, an angel of death in a white coat, and he described some possible scenarios in answer to our questions, but it was hard to absorb the information—it was so hypothetical. “Feel free to call on me again,” he said as we shook hands all around. “I’m here to help you with your decisions, not to persuade you one way or the other.”
As our mother’s spirits went up and down, so did ours. We were adults in our fifties and sixties, parents ourselves, and yet our moods depended on whether our mother blinked at us when we spoke to her. I brought my laptop into the room and tried to attend to some business, but I couldn’t concentrate on anything in the unreal world beyond the hospital. So I worked on crocheting a shawl for my mother—zigzag blue and green stripes, colors she liked.
Friday came and she still had a tube down her throat. She stared unblinking when I came into the room, and she didn’t even wiggle her toes when the nurse asked her to. She still had pneumonia, and the numbers on the monitor had not improved. We didn’t see Dr. M. all morning. This was clearly not the day she’d be liberated from the ventilator.
The four of us met in a windowless cubicle down the corridor called the Family Conference Room. “This is exactly what she never wanted,” my sister said.
“He keeps saying just a few more days,” my other sister said, “and then a few more days go by and she’s worse, and then he says give me just a few more days.”
My brother said, “She’s tied to the bed—you know what I mean?” His voice broke. “We’re her children, and we’re choosing to put her through this.”
Huddled together in that stuffy chamber, exhausted beyond all reason, we agreed it was time to let her go. We left word at the nurses’ station that we wanted to talk to Dr. M.
We telephoned our children—her grandchildren. “We have to let her go,” we sang, like sailors preparing to loose the mooring line from its bow cleat and drop it into the salty water.
My older son, the first grandchild, far away in Texas, said, “I thought she was getting better. Yesterday you said she was getting better.” I was curled up on the floor under the pay phone in the waiting room.
“We thought she was,” I said, “but today she’s worse. If you could see her, all full of tubes, with her hands tied, just staring out with one eye open . . . She asked us not to put a tube down her throat. She’s counting on us.”
“But maybe the antibiotics just need more time to cure the pneumonia,” he said.
“We’re going to ask the doctor about that,” I promised him.
Dr. M. came around at last, and we went out into the corridor to talk. When we told him we thought it was time to let her go, he seemed surprised. “Why today?” he asked.
“Well, it’s Friday,” I said. “You said you’d get her off the breathing tube by Friday.”
“She’s holding steady,” he said. “I’d like to get her oxygen support down to forty percent, but the pneumonia is slowing us down.”
“Shouldn’t the antibiotics have gotten rid of the pneumonia by now?” my brother asked.
“I want to give them a few more days to work. I know you’re worrying about keeping her on the ventilator, and I respect that. As I told you, I don’t like to go more than two weeks with the ventilator, but it won’t be two weeks until Monday.”
We agreed to a third extension.
When we went back into the room, our mother was sitting up in bed, and for the first time since the accident she stretched her mouth into her version of a smile around the blue pipe. We looked at each other in amazement. Did she guess what we’d been saying in the hall?
We called the grandchildren back. We couldn’t believe that a couple of hours before, we had decided this was to be her last day on earth.
THE THIRD WEEK
We wanted to help her rally her strength by Monday. I asked my son Noah to come from Texas to cheer her on, and the very next morning, Saturday, he walked into her hospital room. She brightened and reached her tethered hands toward him. He was a tall man now, and he leaned way down until she got her hands onto his shoulders, and she pulled him down into her bower of tubes to give him the fumbling kiss of a bridled horse. He held a picture of his two-month-old daughter, her first great-grandchild, in front of her open eye, and she studied it hard.
On Monday, after morning rounds, Dr. M. called us into the corridor outside our mother’s room. “It looks like a good day for an extubation!” he said.
Quite a crowd of family members and medical people gathered in the room for the big event, including Dr. Z., the one who helped patients die; his presence worried me.
“Hello, Alice,” said Dr. M. “You’ll be happy to hear that we’re going to take out the breathing tube now. Are you ready for that?” She nodded enthusiastically.
It turned out there was nothing to it. The respiratory therapist pulled the tube out as easily as if she was pulling up a weed with a long root, and Mom was breathing.
The RT put an oxygen mask on her face to give her a little extra help in the transition. It was fastened around the back of her head with elastic, like a Halloween mask. They finally took off the wrist restraints.
Dr. M. had said she probably wouldn’t talk right away because her vocal cords would be sore, but she was already lifting the mask and moving her lips, finding her voice after the long mute weeks. She was the diva and we, her eager audience, strained to hear. The words came out, one at a time, hoarse and irritated: “I just want to wipe my chin!”
Dr. M. was proud of her, and he brought a couple of the residents into the room to show her off to. Everybody was jubilant.
“Do you know where you are, Alice?” asked Dr. M.
“I’m not quite sure,” she said. “Am I in the kitchen?”
He told her she was in the hospital. “And can you tell me how many grandchildren you have?”
“Nine,” she said proudly. “I have nine grandchildren.”
Dr. M. looked at me. “She does,” I said.
“And do you remember,” Noah asked her, “that you have a great-granddaughter?”
“Yes,” she said proudly. “I certainly do remember that!”
Noah, having seen her over the hump, was ready to say good-bye. “You’re getting better, Grandma! I’m coming back to Chicago in the spring, and I’ll bring your new great-granddaughter to meet you!”
“I can’t wait,” my mother said. “That will be wonderful.”
The day after the tube came out, a Tuesday, she told the nurse she wanted to turn on her side, and the nurse helped her do that. “It’s time to get ready for the baby,” she explained.
“You’re not having a baby, Mom,” I said.
“I know that!” she said, annoyed at my obtuseness. “I have to get ready for my great-grandbaby. I have to make a place for her.” She curled up and made a half-moon of a nest in the bed for her great-granddaughter to lie beside her. She patted the spot.
“You’ll see her in a few months,” I said.
Dr. M. told us not to worry that our mother was sometimes confused. He said it was normal for a person who’s been in the ICU for a while to become disoriented. It would go away, he said.
The next morning she was in a grateful mood. I was sitting in the corner crocheting when she waved her hand at the ceiling over her bed. “I’m giving you that one for a present,” she told my sister.
“You mean that tile right there?” my sister asked, pointing to one of the six-inch square acoustic tiles over Mom’s head. I was impressed that she had understood.
“Yes,” Mom said, and turning to me, she continued, “that one’s for you, and that one . . .” She gave each of her children the gift of a ceiling tile. She didn’t have anything else to give.
On Wednesday, the third day off the ventilator, she seemed to be weakening. “What’s going on?” we asked Dr. M.
“I don’t know,” he said. “We’re delivering as much oxygen as we can through the mask, and she’s just maintaining.” He paused, as if gathering himself, and said, “You should think about what you want to do if she gets to the point where she won’t make it without mechanical support. Would you want us to do a tracheotomy?”
Once the tube was out, we couldn’t bear the thought of putting it back in, and we already had her instructions. Still, people can change their minds, and now that she could talk to us, we decided to ask her.
We waited for one of her brief windows of alertness. Dr. Z., the palliative care doctor, came into the room to support us. He pulled up a chair beside her bed, so he was at eye level with her. The rest of us stood around the bed, and my sister asked her that terrible question again and again: “Do you want us to put the tube back in if it turns out you’ll die without it?” She asked in different ways, and our mother said nothing. We thought she didn’t understand. Then Dr. Z. leaned in to help. “Alice, would you object if we put the breathing tube back in?”
“Yes, I would,” she said quietly.
“Now listen carefully. If you need it to live and we don’t put the tube back in, you’ll die. If that happens, we’ll make you comfortable. How do you feel about that?”
She suddenly sat up in the bed and exclaimed, “Shit! This is a lousy time to ask a question like that!” Then, as if to explain her loss of temper, she added in a softer voice, “I’ve already discussed these matters with my children.”
On Thursday morning she perked up a little—she could still be getting better. One of my nieces, visiting from college, brought her violin into the room. “Want me to play something for you, Grandma?” she asked.
“Yes, play me something cheerful,” said my mother.
So my niece played a Scottish tune called “Ships Are Sailing,” and my mother tapped her fingers on the bedrail in time, to show her pleasure.
But that afternoon she became increasingly anxious and agitated, shaking her shoulders, waving her hands, shifting her legs. Her breathing got faster and shallower. “Just breathe slow and easy, Mom, just slow and easy,” I said, and though my words couldn’t put more oxygen into her lungs, they calmed us both for a moment.
Dr. M. relinquished her as his patient to Dr. Z. who put her on a morphine drip to relieve her feeling of air hunger. Dr. Z. said she’d be more comfortable on the palliative care floor, and my sisters and brother were ready for the transition. “But isn’t that giving up on her?” I asked.
Dr. Z. said that they could do everything in palliative care to help her live that they could do for her down below, and she would be more comfortable besides. So I agreed, telling myself it wasn’t beyond the realm of possibility that she could still get better.
The next day, Friday, a bed became available in palliative care—meaning I suppose, that someone had died—and in the afternoon my mother was moved to a hotel-like room on the sixteenth floor, the top floor of the hospital, closest to heaven, with fabric drapes and upholstered armchairs. She had always held a good view to be one of life’s greatest pleasures, and so, even though the morphine had put her to sleep and she seemed to see nothing out of her still-open eye, we wheeled her bed around so that she faced the picture window looking east, over the stone turrets and steel roofs of Chicago to the darkening expanse of Lake Michigan.
Dr. Z. said it could take several hours or several days for her to die. It was a relief to get her out of th
e technological brambles of the ICU, though the monitor that measured her blood gases was still hooked up, and I was still watching it, as if there was meaning in it.
Out in the hall I told Dr. Z., “Her oxygen level keeps going down to eighty.”
He put his hand on my arm. “Mom is dying,” he told me in the voice of a kindergarten teacher. “Now is the time to make her comfortable.” I knew he was trying to be kind, but I spun away from him and marched down the hall—she wasn’t his “Mom.” But it wasn’t really his use of the word Mom that was upsetting me; it was the rest of the sentence.
There were six of us family members in the room—children and grandchildren—when the palliative care nurse took off the oxygen mask and put on the nasal cannula: “She’ll be more comfortable.” I looked back and forth from my mother’s face to the monitor, and I saw the numbers drop like an elevator—into the seventies, sixties, fifties. My son Sandy was sitting across the room in an armchair. “Grandma’s dying,” I heard myself say, and he jumped up to join us at the bedside. Helpless, we watched her sternum rise and fall like the prow of a ship in heavy seas; helpless, we watched her face turn white as the red blood drained out of the capillaries.
In less than two minutes she stopped breathing. We stood there, waiting for something to happen, waiting for our mother to tell us what to do next. But she had left the room. I don’t know how she managed this disappearing act—I never saw her get up and go, and I was beside her the whole time. After a pause, all six of us began to cry. It was ten o’clock on a Friday night.
The nurse slipped out while we wept, and after a polite absence of ten minutes or so, she came back in with some papers for us to sign. “You can stay here with the body for two hours,” she said. “Then we have to remove it.” Time swung around and slammed into a wall. How suddenly the nurse’s patient had turned into a body. Now that my mother was truly comfortable, the nurse’s job was done.