by Leslie Brody
We had reached some kind of serious crossroads but nobody at the hospital brought up the idea of hospice. That was not only baffling, it was hurtful. I needed experienced help, and the medical staff should have made it easier for me to say so, especially when Elliot would never acknowledge hospice as the next step. Apparently doctors don’t like to admit defeat either.
A case manager started to arrange for a visiting nurse and a high-tech nurse who would teach me how to do a complicated type of home IV.
“I need more help,” I said. “Do you think we should get hospice?”
“That is one option,” the case manager said, not very usefully.
“I think we need to try it. I’ve heard some people regret it when they wait too long. If he gets better we can cancel it, right?”
“Yes. I’ll ask the doctor to write the order.”
I was losing my grip, everything seemed to be happening so fast. I told Elliot I was signing up for an agency that would give us more help. He would be shaken by the H-word. To get hospice care, a doctor has to confirm that a patient has less than six months to live. This was a truly dire step, but I needed backup. I didn’t see it as giving up but as recruiting more hands to manage the inevitable. After more than two years of weekly or biweekly chemo trips, then radiation, and nine emergency hospital stays, including four in the past month, I was wrung out. Drained. Out of gas. Just when my responsibilities at home were mounting astronomically. And this had to be my decision. Doctors had already asked me to sign an updated Do Not Resuscitate order. By calling on me as Elliot’s health care proxy, they were signaling they thought he was no longer coherent enough to make choices on his own.
A high-tech nurse, a dedicated woman from a different agency than the hospice company, came to teach me how to give Elliot an IV antibiotic called Invanz. You had to mix the chemicals with sterile technique, keeping all the various pieces clean with alcohol wipes at every step. You had to be an octopus to hold all the pieces. The fifteen-step instruction sheet took a full page, single-spaced. It was full of intimidating warnings in capital letters, like REMEMBER TO KEEP THE NEEDLE BELOW THE LEVEL OF THE FLUID! And DO NOT TOUCH SPIKE!
There were so many opportunities to screw up. During my practice session I felt my face flush hot. After dissolving the medicine I couldn’t suck it back into the syringe properly. I needed multiple do-overs. Then I couldn’t get the IV flow adjusted to the ideal speed of six drops per fifteen seconds. It kept going too fast or too slow. I felt the sting behind my eyes that told me tears were coming.
“You’re overwhelmed,” the nurse said. “But this IV isn’t what’s overwhelming you. It’s the whole situation. You can do this. Take a deep breath.”
After a few days I got the hang of it. I don’t know how anyone with poor language skills, a disorganized life or a dirty house could handle it.
The hospice people started coming by. I thought they would make things easier. I was dead wrong. The case manager had recommended an agency that turned out to be a farce. We were supposed to get one steady nurse who would get to know us. Didn’t happen. One lady arrived at our house reeking of cigarette smoke. It was hard to take medical advice from her. She didn’t do much anyway, just stopped by for fifteen minutes, took Elliot’s blood pressure and filled out paperwork. The next nurse kept arriving late. Another simply didn’t show up. A physical therapist kept postponing and never came at all.
Hospice has an angelic glow, a reputation for helping people die with dignity, without all the painful tubes and grueling interventions that ultimately do no good. In our case, hospice was like lemon juice on a raw wound. The only helpful thing the company did was arrange deliveries of medical equipment—an oxygen machine, a walker, a shower chair. No doubt there are wonderful hospices out there. This one was just a profitable system for reimbursement. During the deepest crisis of my life, I felt cruelly ripped off. I berated myself for signing up with this company, but there was no time to find a better one.
Ironically, Elliot, the one in a methadone fog, saw through them right away.
“Who are these people?” he asked me one morning, his words slurring. “What’s their business model?”
“Honey, I just need some more help around here.”
I started my days crying silently in bed before dawn, before anyone could hear me. I tried to savor my husband’s skin against mine, to etch the feeling in my mind. How long, I wondered, will I wake up next to him? How long can we limp along like this? Who will fall apart first, Elliot or me?
Then I would dry my face, get up to count out his seventeen pills, help him get down the stairs, cook him breakfast, drive the kids to school, help him shower and wrestle clean socks onto his strangely swollen feet. By the time I got him cleaned up I was sweating and exhausted. And it was only 10:00 a.m.
The real help came from our family.
Elliot’s mother, who hated to sleep anywhere but her own bed, couldn’t bear to be away from him, so she moved in to Max’s old Star Wars crash pad in the attic. Helen busied herself cleaning. She needed something to do with her hands. My house has never been so spic-and-span. Elliot’s sister Marjorie flew in from England. It was almost Thanksgiving, so Max and Aaron didn’t go back to college or Chicago after their dramatic middle-of-the-night appearance at the hospital. They camped out at our house too. Backpacks, laptops and cell phone chargers spontaneously generated all over the living room, along with sleeping bags and pillows for the couch and a cot. They did errands, picked up milk and brought home bagels. Devon and Alex, who were on Thanksgiving break too, helped with the dishes. Kate and her boyfriend came by all the time. Aaron’s girlfriend, Sallie, joined us.
Overnight, it seemed, our home had become a hotel and mini-hospital. With eight to eleven of us around at any time, mountains of groceries came in. Mountains of garbage went out. The older kids took turns making dinner. Aaron made stir-fried chicken and broccoli for everyone; Kate made baked fish with spinach.
I was touched to see how much they wanted to help me as well as their dad. It had occurred to me in the past that if their father was gone their connection to me might fade away. But they were being so supportive and thoughtful, I came to have faith that their tie to me and my kids would last even after their father’s presence no longer bound them to us.
Everyone pitched in. Their mother brought over two huge pans of lasagna and two apple pies with a cheery mid-Western smile.
“I know how my group eats,” Janet said.
Friends dropped by at a moment’s notice to say hi and entertain us, adding to a communal feeling of warmth. Nobody fussed over table manners, nobody put out fancy glasses for company. We burned through tons of paper plates.
After I got my private pre-dawn tears out of my system, those days were remarkably rich. Elliot smiled as he dozed on the couch, listening to the hubbub of having us all around, fussing over him. We watched movies and took walks. Everybody teased me as I sat at the dining room table, finishing a goofy centerpiece I started in the Sloan-Kettering art room using paper maché, crumpled newspapers and gold spray paint. It was a turkey. I made a pilgrim’s hat out of black construction paper and glued it on his head at a jaunty angle. Elliot loved it, as I knew he would.
“That’s my girl,” he said with a chuckle.
When we could ignore the backdrop, we could actually have some fun.
Nobody used the word “hospice.”
So much was left unsaid, yet as a family we had never felt closer.
One day I was out getting provisions when Elliot felt a little burst of energy and hatched a plan. He craved a slice from Brooklyn Pizza, a Hackensack joint he loved taking his kids to when they were little. He hadn’t had pizza in two years. The girls were busy and out of the house. This would be an adventure for the guys.
It took until 5:00 p.m. for Aaron to help Elliot get showered and dressed. Alex and Max waited patiently but hoped to get out the door before I came home. They thought I’d say no, the expedition was too risk
y, like I was some kind of Nurse Ratched from One Flew Over the Cuckoo’s Nest. Their presumption of my disapproval made the whole scheme that much more delicious.
I got home just as they were leaving.
“We’re going for pizza,” Elliot announced. “I’m just going to have one slice.”
“Okay” I said, surprised. “Be careful. Don’t forget your medicine.”
Alex had his hands in his pockets, trying to look nonchalant, but it was clear he was excited to be heading off on a mission with the men.
I acted concerned so they could relish their rebelliousness, but in truth, I couldn’t have been happier with their prison break. If Elliot could get such a thrill from a simple piece of pizza with our boys, that was a beautiful thing.
I wanted them to have these moments to remember. These seemed to be our last chances. Elliot seemed to be slipping away.
One day, he was sitting at the dining room table, hunched over a small lined notebook, writing painstakingly in capital letters.
“TO WHOM IT MAY” he wrote on the top of one page.
“TO WHOM IT” he wrote on top of the next page. Every time he thought he’d made a mistake, he moved to another page, another try.
TO W
TO WHOM IT MAY CONCERN
TO WHO
He went on for several more pages. Was this some kind of will?
“What are you doing?” I asked softly.
He looked perturbed. “I’m not really sure.”
“Okay,” I said, squeezing his shoulder. And we left it at that.
Another day I found him staring at his computer for hours, thinking he was working. Only a few random letters were typed on the screen. Doctors said this confusion might come from a lack of oxygen, a buildup of drugs, and the accumulation of toxins in his blood due to his weakening liver. Unsettling incidents often revolved around food. He looked at his cereal bowl at breakfast one morning and thought it was a steaming bowl of meat and vegetables. Another day he thought his oxygen machine was feeding him his favorite soup from the Italian restaurant nearby.
“Where’s the ribollita?” he asked, disconcerted. I said there wasn’t any.
“I must be losing my mind,” he said. He looked disappointed in himself.
I knew things were really bad one evening when he was watching TV. His show ended and Alvin and the Chipmunks came on. Those squeaky sing-song cartoon voices were so nasal and annoying. Even though Elliot was holding the remote, he didn’t change the channel.
His legs were so heavy with swelling he couldn’t move easily in bed at night. He nodded and put out his hands to let me know he wanted to spoon. So I pulled him onto his side, stacking his right leg onto his left, and then nestled into his side to get in position.
I couldn’t bear the thought he might reach a place where he didn’t seem to love me anymore. I wrote myself a note for the day I would need reassurance.
“He uses oxygen more and more—all evening watching TV after dinner,” I typed in an email to myself. “But he still says I love you back every time I say I love you. He still puts his hand on my ass to take a nap. Even when he seems asleep, if I kiss him he kisses back, or if I say I love you he kisses the air. I have to keep remembering he loves me in case there’s a time he can’t show it so well.”
I charted his affection the way nurses chart vital signs. I had to document what mattered.
THANKSGIVING
2008
“Do you think this year we could maybe have just one Thanksgiving?” Kate asked one night while we were doing dishes. Usually she went to her mom’s house with her brothers for one holiday meal, and then came to our house for another.
“That’s fine with me, but we should poll the troops,” I said. Everyone agreed. Ease ruled.
I made turkey, corn bread stuffing, mashed potatoes and salad. Janet brought over casseroles: one with sweet potatoes and marshmallows, one with string beans, onions and almonds.
We decided to start the festivities around 5:00 to take advantage of Elliot’s most alert phase of the day. About an hour and a half beforehand I began helping him shower and get dressed. He wore sweatpants and a loose black fleece with a little Mets logo that Alex had given him years ago. Now it was useful for hiding his swollen belly. It took ages to work the socks up over his feet. They were as round as bear paws. His new size twelve slippers hardly fit. I held Elliot’s arm as he trudged slowly, step by step, down the stairs. He leaned so hard on the banister I was afraid it might break.
I set the table for twelve with the maroon tablecloth that I brought out for special occasions. I’d always loved that tablecloth. My mother had made it out of a patterned print from India when I was little and passed it on to me. It had some rips and fraying seams, but it gave me sentimental comfort.
Nobody said it, but we all sensed it would likely be our last holiday with Elliot. We hauled out the video camera. Devon shot a hectic scene as everyone carried out heaping platters, searched for serving spoons, decided who would go to the buffet first. The shot caught Elliot taking his place at the head of the table, wincing as he lowered himself down to his chair.
He looked so weary. His face was so thin you could see the lines of his skull. His cheeks were gaunt and sunken like that ghost in the Munsch painting, The Scream. There were deep circles under his eyes. His cheekbones were sharp.
“We’re not, like, saying stuff?” Max asked.
“Sure, Max you start,” I said. “Make a nice toast. It was your idea.”
“I’m not good at stand-up.”
“You don’t have to stand up,” said Elliot’s sister Marjorie.
“I mean improv, or whatever you call it. But okay,” Max paused. “Yeah, well…We’re all here.”
There was nervous laughter.
“May I?” asked Aaron, ever the older brother, showing he thought he could do it better. I couldn’t help rushing to Max’s defense. The fact that Elliot didn’t do so himself showed he was in a daze.
“Wait,” I said. “Max got very much to the point. That’s exactly it. We’re all here is a really profound thing to say.”
“Our glasses to that,” Max’s mother said to back me up. We held our glasses high and took a sip.
I told Aaron he could have a turn. He took on a master-of-ceremonies formality.
“I’d just like to thank everyone for being here,” he said with an endearing bit of pomp, “and for working together to make this really great dinner, so we could all be together, really all of us, the entire family here now.”
“Look, now he’s the boss,” his aunt Marjorie teased.
“Oh come on,” Aaron continued. “As a family, a somewhat extended family, we get together so infrequently it’s great to have everyone sitting around the table tonight.’
I took another quick video shot of everyone digging in but didn’t want to film too long. I didn’t want to seem too conspicuous about saving the moment for the future.
Afterwards we all sat around the fire playing one of our favorite games, “Twenty-five words or less.” You got a card naming five nouns, celebrities, places or works of art. You had to use pithy clues—twenty-five words at the most—to get your team to say all five words on the card within sixty seconds.
The kids were competitive. Alex, who was good at this despite being the youngest, wanted to trade Marjorie off our team. As always, Kate and I were on the same wavelength to an uncanny degree. Elliot tried to keep up, but it was difficult so he was quiet. Still, he smiled with fatherly pride at all the antics around him.
“A prickly animal,” Janet prompted.
“A hedgehog,” Kate said. “Porcupine.”
“Yes!”
Soon it was Kate’s turn to give clues.
“Build a better…”
“Mousetrap!” Elliot answered.
“Yes!” We all beamed. He was back in the game.
His turn to give clues, however, was a challenge. He forgot that you had to use as few words as possible. He chatt
ered on and on. “This is something you could try to eat but that would be highly unlikely,” he said.
Alex looked at me and I looked at Devon, the scorekeeper. She had the sensitivity to stop counting his words—he had far exceeded his limit. She hid the hourglass under the table and we all humored him, bending the rules the way we would for a child.
Kate made a fantastic spread for dessert. Chocolate tarts with strawberries on top in a walnut crust. Homemade walnut pepper ice cream. Chocolate port ice cream. Coffee gelato with chocolate-covered coffee beans. Pumpkin bread pudding.
Devon must have picked up the camera. The video shows us all passing plates and digging in. Elliot’s head is drooping, almost on to the table. I’m standing by his chair and lean over to put my arms around him.
“Oh, Sweetie’s so tired,” I say quietly. It sounds like I’m soothing a baby.
9-1-1
After Thanksgiving, Elliot seemed stable, like he’d reached a plateau, so Elliot’s kids and sister went back home. It was up to me and Helen to look after him. We thought he was safe in his green armchair.
He loved that chair. It was ugly as sin, a hand-me-down covered in fake velvet with olive and gold stripes, but it was incredibly comfortable. It took up an inviting spot by our bedroom window.
I had no clue how hard it had become for Elliot to push himself out of its soft, deep cushions.
Then late one night, I was stealing a few minutes of peace in front of the TV downstairs when I heard a giant crash above me. I raced upstairs. Elliot lay face down on the floor. He had tried get out of the chair but fallen straight over, like a tree in the cartoons when a logger yells “timber.” The round coffee table had broken his fall and the impact had split off a wooden leg. The tabletop lay beside him like a slanted moon. Magazines were scattered everywhere. Luckily an empty water glass hadn’t shattered. Elliot looked humiliated lying immobile in the mess. His jaw was clenched.
It took every ounce of my strength to reposition his leaden legs and swivel him around to face the heavy chair. It took every ounce of his to hoist himself up on it by his arms. We didn’t say much about the accident. I just kissed him.
