A CAREGIVER’S DILEMMA | Cathy Beres
Morning
In those days, the brain tumor days, each day began the same. My husband, Lou, and I lumped together in bed, snuggled under the comforter, heads touching in the space between our pillows, my arms wrapped around him, or holding one of his hands. In the before-brain-tumor days, the “old days,” we often slept spooned, my body nestled into his strong arms.
But in the brain tumor days, I was the spoon.
We used to set alarm clocks. Rolling over and out to the shower, the shaver, hairdryers, lipstick, suits, ties, pantyhose, high heels, black coffee. Hurrying the kids, pecks on the cheek, “love you,” “talk later,” “see you tonight,” out the door, down the hall.
In the brain tumor days, we slept.
I always awakened first, determined to get our high-schooler off to a good start; his carefree teenage life had been upended by the darkness of his dad’s disease. Then I would tiptoe back to bed to be with Lou. Half mama bear, half Florence Nightingale, I lay there wondering, watching, waiting. Sometimes for longer than an hour. I watched as he slept so soundly, unburdened by the stress of work and his never-ending to-do list. His always active mind still, oblivious to the beast bombarding his brain.
First an eyelash would flutter, then a slight squirm, a squint, a sleepy-eyed frown. He would awaken slowly, taking in his surroundings, absorbing, and probably in some way – his new brain tumor way – assessing. I could almost hear his brain attempting to work, desperately trying to capture the misfired synapses, scattered and dissipated, trying to figure out whatever it was he couldn’t figure out
The sound of his brain not working as my head lay next to his was deafening.
The first words were always the same: “What day is it?” as he stared up at the ceiling quizzically.
“It’s Wednesday, honey.”
“Wednesday. Hmmmm….”
A few moments later, “What time is it?”
“Oh it’s 8:00-ish, I think.”
“What day is it?”
“It’s Wednesday.”
“What time is it?”
“It’s around 8:15.”
“Hmmmmm…what am I doing in bed? Am I going to work? What am I doing today?”
Here it would start, this caregiver’s dilemma: to tell the truth, or a version of it, or a flat out lie? He would not remember what I said a few minutes later, but I hated the idea of lying to him. In our 25 years of marriage we had never lied to each other. He would want me to be honest no matter the pain it might cause, I knew this.
In the beginning, we were instructed by his doctors to tell him the truth. We crafted a notebook together in occupational therapy that explained in childlike terms the necessary facts: his name, my name, his son’s names, his address and phone. The name of his advertising agency. That he was being treated for a brain tumor. That he would be going to radiation treatment daily for five weeks, not to the office. That he would be taking chemotherapy pills. That his progress would be checked in two months.
It seemed ridiculous to me that a man of his intellect would need such a thing, but I went along with it; I wanted to follow the doctor's directions. I wanted to do whatever it would take to obliterate this invader in our lives.
I tried to take Lou through the notebook but quickly abandoned it. The truth derailed him, sent him into a tailspin of tears and anxiety that could take hours to turn around. We would start the day over, missing appointments.
“Am I going to work? What am I doing today?”
I learned it was best to lie, often just little white lies to keep the peace, to stay on task. White lies that I could justify.
“Maybe! Let’s see how you’re feeling a little later.”
“Hmm…have I been sick?”
I was never sure what he meant by that. Sick with a cold or flu, as opposed to a brain tumor?
“Well, you haven’t been feeling well…”
I thought that answer could explain why he was still in bed. And it was true, he had not been feeling well. But the explosion would inevitably begin.
“What’s wrong? Is something wrong with me, why am I still in bed?” Agitated, he would raise himself up on one arm, staring at the clock. 9:05.
“You just haven’t been feeling well these last few days…”
“When was the last time I was in the office?”
Damn.
This was the more difficult dilemma.
“Oh just a few days ago…”
This wasn’t such a lie; I did try to get him into the office every now and then, difficult visits that created confusion for his staff, leaving everyone feeling sad and helpless. Those visits were stopped a month into his illness.
“What’s wrong with me? Why am I not at the office?”
“You know, you haven’t been feeling well and the doctors are trying to figure it out. But maybe today you’ll feel better. Maybe today you’ll be able to go to work.”
“What time is it?”
“9:15.”
“9:15? What am I doing? Why am I still in bed? What day is it? What am I doing? Am I going to work?”
He would then sit up, eyes darting around the room to the clock, to me, and back to the clock. “Why can’t I figure out what’s going on? What's going on? Cath, what is wrong with me?”
This was the most difficult moment that occurred most mornings. The realization that something was wrong that he couldn’t grasp. What was he thinking? How did he feel?
“It’s okay, it’s okay,” holding Lou in my arms, brushing his thinning hair away from his now furrowed brow. “It’s still early, we have time, let’s see how you feel when you get up. Let’s see how it goes, okay? I think you could get to the office in a bit, don’t you? Let’s try, what do you think? Shall we get up?”
With that, our day would begin. With a lie, the only way to keep him moving.
9:30. I would turn on the CD player to our “morning music”: Chopin, Haydn, Sousa. Music was a critical part of my therapy program for Lou. He adored classical music and opera; it was always playing softly in the background at the office while he worked. I envisioned the music notes seeping into his brain, spreading good feelings, healing. Music was a constant companion. It filled the empty spaces. It calmed and cajoled when I couldn’t.
“Come on Lou, let’s go, what d’ya think?”
I would tug him closer to the edge of the bed. Eventually he would untangle from the warmth of the blankets and put his feet on the floor. The first steps, tentative. This, the man who attacked his days full tilt, starting early, ending late, now slowly stepping out of bed, leaning on his wife, unsteady, weakened. His sturdy, strong body now softer, sagging a bit. Head slightly bowed, eyes flat, his once thick and lustrous hair thinning from the radiation/chemo combo. A few greasy strands falling to one side, exposing the beginnings of bald spots.
We moved to the breakfast table as one, amoeba-like, in robes and slippers, shuffling together. We never ate breakfast together on weekdays before the brain tumor. We were in too much of a hurry. Now it was a ritual; we consumed omelets, bacon, bagels, oatmeal.
In the first few weeks after the diagnosis, I tried to interest Lou in the newspaper each morning. That fell by the wayside when it became clear he couldn’t follow the words, even when I read it out loud to him. Stories about the market or world events were stared at blankly. Confronted with a story depicting the Twin Towers up in smoke, he looked at me, wide eyed, “What happened, what is that?” How to explain, five years after the fact? The once national-collegiate-debate-champion-student-body-president who relished any and every historic or political discussion could not recall the name of the president. The newspapers piled up, unread.
After breakfast, we moved on to getting dressed. The radiation appointments were usually at noon. I opted for this, knowing how challenging it was to get Lou acclimated in the morning. On some days we had occupational therapy at 11:00; those mornings were frenetic, fraught with stress.
I wanted Lou to handle his personal care routine on his own to the extent he could. I wanted him to maintain some independence and dignity. It would have been easier and quicker to jump in and help; I tried not to. Every step took longer. Shaving, for instance. Lou used an electric shaver. I could hear it buzzing behind the closed bathroom door for twenty minutes or longer.
I would knock on the door, “Everything okay in there, honey?”
“Yep.”
“Okay, good. We have to leave soon, okay?”
“Yep.”
Buzzing would continue. I figured out that he was shaving and re-shaving his cheeks over and over, forgetting that it had already been done. He would have shaved his skin off had I not interrupted.
Knocking on the door, I would go in and put the shaver away. “Let’s get dressed…,” encouraging him to move on to the closet.
In the beginning, he picked out his clothes, but often I would find him staring into his closet, confused over what he was looking for. I intervened, laying his clothes on the bed each day. Usually he managed to put them on and come out fairly well put together.
That would be the beginning of what would be considered a good day, in those days.
Afternoon
When the weather was decent, we walked several blocks to the hospital for his radiation treatment, arm in arm. “Good morning, Mr. B. How ya doin today?” The doormen in our apartment building were always warm and friendly to him before his illness and throughout. He was a favorite among the staff. His normal response before the brain tumor, “Tip top, couldn’t be better,” was replaced with a “hello” or “have a good day.” His verbal skills were compromised, and he was no longer conversational. He was quieter, not as engaged; he spoke when spoken to.
The radiation oncology department was in the basement of the hospital. It felt like entering a bomb shelter, winding our way through long, gray institutional-looking halls. We went Monday through Friday for six weeks. Every visit, Lou looked at the heavy door with the “Radiation Oncology” department sign and remarked, “What are we doing here?” Difficult to lie confronted by that sign. “You have your treatment today, remember?” He never remembered. He would look at me with that puzzled look he started each day with, but he seemed to know it was something he had to do. He didn’t fight it. It was surprising to me that he was such a cooperative patient for the most part. I was so grateful for that.
We would sit in the waiting room for a few minutes, then a nurse would come and walk with him into the treatment room. They would put the specially made headgear on him, a combination Darth Vader/hockey mask/helmet, and lay him on the table to be “fed” into the machine that bombarded his brain with the prescribed radiation beams. It only took ten minutes, but it took us half a day to get there. On our way home, we sometimes stopped for coffee along the way, sitting quietly across from each other. Those were our “dates” in those days.
Our afternoons might have included physical therapy down in the condo’s gym, or maybe a friend would stop by. Lou loved seeing friends or family even though the conversations were limited. He would ask repeatedly, “How are you?”, “How’s the family?” Easy questions, safe. But true to his nature, caring of others.
Evening
Usually we would end up watching TV. He was a fan of Law and Order and The History Channel, golf tournaments, and college football. This was not new with the illness. He watched these shows when he was healthy, late into the night if he wasn’t reading. It was how he relaxed. But he had lost the ability to read. Watching television became a shared activity, something to fill the empty hours of most evenings. I discovered I enjoyed just sitting with him. We never had much quiet time together before; we were so busy with our full lives and calendars. The brain tumor changed all that.
I don’t know what he thought while he was watching television. I don’t think he followed the storylines. I think he just reacted to what was happening on the screen at that moment. But I think he enjoyed it and was comfortable. He once looked over at me from his beloved leather Lazy Boy chair and said with a little smile, “This isn’t so bad, is it?”
“Hm?” I said, looking at him from where I sat on the couch, right next to his chair, close enough to hold hands.
“This. This isn’t so bad.”
“What do you mean, honey?” What “this” was he referring to? Was it the apartment, the television show, the weather?
“Retirement,” he said. “It isn’t so bad, is it?”
Retirement. That was the “this.” He thought we were retired.
A pause, then a whisper, “No, no, it isn’t. It isn’t so bad,” I responded.
My guess is I had lied in that response, thinking of the retirement he had worked so hard for, the retirement we would never have together. But all these years later I’ve come to know that Lou was right, those days really were not so bad.
Cathy Beres describes herself as a "late bloomer," having received an MA in Creative Writing (nonfiction concentration) from Northwestern University at the age of 64. Beres' work has been published in journals including The Sun, McSweeney's Internet Tendency, Passager, Ruminate (Finalist, Nonfiction), The Examined Life Journal, Fish Anthology, Cork Ireland (Finalist, Short Memoir), and others. She retired from a 35-year-career in advertising and marketing, and resides with her partner, Tony, in Evanston, Illinois with their rescued Golden Retriever, Scout.