by Linda Gartz
He reached out to touch my fingers with his left hand. Certain he had my attention, he lifted his right arm with his left, held it aloft a moment, then released it. The arm dropped heavily onto the bed—like a huge sausage. He repeated the movement two, three, four times, looking up at me or Mom after each fall with that question and terror in his eyes: Why can’t I control my arm? But his voice said, “Oooh, ah, oh, oh, oh.”
Holding his hand and stroking his thinning, gray-streaked hair, I kept repeating, “Don’t worry, Dad. We’re here now.”
Leaning over him, Mom peered into his face, her brow pinched with worry. “Are you okay, Fred?” He shook his head.
A cold wave climbed from my contracted chest to my brain, where it sloshed around.
“We have to get him to X-ray and CAT scan,” the gurney drivers said. “Then the doctors will call you in to discuss what they find.”
Mom and I stood in a darkened room with the neurologist. The doctor flicked a switch, and a panel of flat screens lit up. Kachunk. Kachunk. Kachunk. One by one, he shoved X-rays of Dad’s brain into place, then used a pointer to inscribe circles around part of the image. “The patient has suffered a cerebral infarction, a stroke, to his left brain. There was a blockage in one or more arteries supplying blood and oxygen to the brain, causing brain cells to die.”
“Oh my God!” Mom yelled out, her fist raised to her mouth. Mom’s face had taken on an eerie blue cast from the screen’s glow.
“Will he get better?” I choked out.
“Well, we have him stabilized, and the odds for survival are good. He’ll have to be hospitalized for several weeks. We’ll feed him intravenously until he can learn to swallow again—that can take a while. The left side of the brain controls the right side of the body, so … his right side is paralyzed. He probably won’t walk again, but with physical therapy, he may be able to stand with some help. Since language originates in the left side of the brain, it’s unlikely he’ll regain any speech—or even understand much of what others say.”
“Will he be able to read or write?” I asked.
“I’m afraid not. Those are all language-based skills, and …” he paused and looked down for a beat, as if he hated to say more. “Basically, his left brain has been wiped out.”
My heart went hollow. Not this. Not for my funny, storytelling, garrulous Dad, who lived for conversation and camaraderie! “How long before we know if he’ll improve?”
“Whatever progress we see in six months is about the most you can expect.” His eyes softened. “I’m sorry. I know this is bad news, but we’ll just have to wait and see.”
“I can’t believe this!” Mom blurted out, shaking her head, her mouth turned down. Most people I knew used that phrase when anything bad happened—from a car accident to the phone company cutting off service by mistake. It was a first reactive response to the bitter reality of what had happened. Who could actually believe the truth of it, in all its horror! Paralyzed! Speechless!No! No! No! But it was true.
It’s like when people get a cancer diagnosis. What? I didn’t think this would happen to ME! Even if they lived a perfectly healthy life. Even if they smoked two packs a day and did everything wrong. “I can’t believe this!”
Of course, Dad had received every possible warning sign—as if his future had been stalled on the tracks of a railroad crossing with flashing lights and clanging bells and the screeching, ever-louder whistle of the oncoming train, bearing down on him. He didn’t get off the tracks.
We all had encouraged Dad to lose weight, Mom had set out his blood-pressure pills, but only he could have chosen to change his lifestyle. Still, did he “get what he deserved”? No. That’s too harsh. His generation was simply not as attuned to taking the warning signs seriously. It wasn’t lack of discipline. He had discipline in spades—when it came to work. Eating large amounts was ingrained in his childhood by parents who did heavy physical work twelve to fifteen hours a day: “Finish everything on your plate, or you don’t leave the table. Have seconds—and finish those, too!” For more than twenty years, his day job had been sedentary.
Mom took my arm as we made our way to the elevator and rode up several floors to find Dad in the intensive-care unit. Amid the hospital hum, the green blips, the tonal beeps, and the waves of medical technology, he lay under pale sheets and blankets, his head propped against two crisp, white pillows, his face drained of color. Plastic tubes snaked up his nose, and an IV bag hung from a metal frame next to his bed, dripping sustenance into his veins.
Without his smile and the sparkle in his eyes, Dad’s face looked haggard, much older than seventy. His chest rose and fell rhythmically, the breathing of deep sleep. I stroked his head again and kissed his cheek. “Bye, Dad. I’ll be back. You’ll get better. You’ll see.” I still held some hope. Perhaps the doctors were too pessimistic. Surely my dad would be different. He might be the miracle patient.
“Bye, Fred.” Mom pecked him on the cheek and took a glance back at him, shaking her head again before exiting.
Once in the lobby, I enfolded Mom in my arms, gave her a quick squeeze, and then released her. Emotional expression hadn’t been the strong suit of our family, especially between Mom and me. “It doesn’t sound good,” I said. “Will you be all right tonight?”
“I’ll be okay. But for heaven’s sake! This is just terrible!”
“Horrible. I never even considered a stroke. I thought heart attack was the big risk.” We stood silent a moment, both trying to hold ourselves together. I hugged her again and said, “I’ll call you tomorrow then. Take care, Mom. Bye.”
On my drive back to WTTW, tears flowed down my cheeks, and my knuckles blanched, clutching the steering wheel. “Not my dad! Not my dad,” I howled into the void, but I knew—the universe just shrugged.
I thought about the future, about when Dad would go home. How would Mom treat Dad? Over the last few years, as they’d unloaded two stressful buildings, she’d lost some of her volatility, but she had been so angry with him for so long before that. Would she still be bitter and resentful? Would she dredge up the past, scream at him when he couldn’t respond or escape? Would she dump him in a nursing home, saying, “I’ve had enough trouble with this man”?
I should have known better.
Loyalty. Responsibility. Duty. These values were carved deeply into Mom’s character. With Dad’s daily needs taken care of for now, she jumped right on the practical: following up on insurance and Medicare and making sure his expenses were covered. She and I talked often about a future strategy. Where would he sleep? He couldn’t go up and down stairs, so he’d need a hospital bed. If he couldn’t walk, he’d need a wheelchair. She’d look into all of that. We still hadn’t met with the hospital social worker, who would have suggestions. We’d make an appointment with her.
In between frantic research, planning, and shooting my documentary, I visited Dad at the hospital several times a week, often meeting up with Mom there. For the first few days, he was asleep when we arrived, so we just sat next to him. I caressed his hand, spoke soothing nothings. “They’re taking care of you, Dad. You’ll be okay.”
Mom smoothed his hair, saying “Poor, poor Fred”—her sentiment for sad outcomes.
After about a week, he was awake more often at our visits, able to sit up in bed. Both Mom and I tried to be cheery when entering his room, hoping to raise his spirits. “Hello, Fred,” Mom would say, smiling.
“Hi, Dad!” His head reeled right, left, up—searching for the source of our greetings.
“Mom, Dad can’t see us when we’re on his paralyzed side. Let’s sit on his left.” After we moved, he gave us a tight-lipped semi-smile and a nod—about all he could muster—to let us know he approved of our seating choice.
Mom took his hand and spoke gently. “Are you comfortable, Fred?” We didn’t know if he understood the actual words, but he nodded, probably hearing in her pleading tone that she wanted a positive response. Except for his resistance to Mom’s demands, his
nature was to be agreeable.
When we came during mealtime, we saw how Dad struggled to eat with his left hand, pushing the spoon into the food at awkward angles, dribbling applesauce across the tray and down his chin and chest. Mom wiped away the drips and adjusted a large napkin across his chest. We took turns spoon-feeding him, Mom saying, “You’re swallowing better, Fred.”
Sometimes after a meal, he worked to move his mouth, deliberately shaping his lips into anO. He strained with a mighty concentration to squeeze out whatever was on his mind, like someone trying to lift an impossibly heavy weight. Just insensible syllables emerged. Shaking his head, he closed his eyes and fell back against the pillow, tears trickling out the sides of his eyes. I blinked rapidly. “It’ll be okay, Dad.” I whispered this mantra over and over with false confidence. Mom shook her head, blotting Dad’s tears with a napkin, her mouth in a set line. He forced out a weak smile, put on a brave face.
Dad’s doctor arranged for his transfer to the Rehabilitation Institute of Chicago (RIC), one of the country’s best at helping the brain-injured regain lost abilities—or learn to cope with the limitations that redefined their lives in an instant.
At RIC, if he wasn’t in some kind of therapy when we came to visit, he was seated in his wheelchair in the large central waiting area. He was but one of dozens of wheelchair-bound patients scattered about, their faces washed in a sallow fluorescent glow. When Mom and I walked up to him, I put my face in front of his to be sure he saw me. Mom wasn’t good at remembering this subtlety.
“Hi, Dad!” I smiled brightly and kissed him.
Mom patted his shoulder, but our attempts at cheer couldn’t counter the horror of his disabilities, his severe losses apparent to him now that the initial insult to his brain was healing.
“Oh, ba-ba-ba-ba-ba,” he cried out, sobs wracking his body, his shoulders heaving through unintelligible sounds.
I leaned over to embrace him, vainly trying not to cry at his despondency, muttering over and over, “It’s okay. It’s okay.” I’d seldom seen Dad sad; he could always find a glint of silver within a gathering storm, but now he was bound in a gray shroud of despair. Rubbing his back, Mom stared into space, her inner thoughts visible in her scowl at the injustice of it all—just when she had begun to hope their lives would get easier.
Dad bit his knuckle to stop crying, but his loss was too great. Over and over, he shook his head, looking from Mom to me, repeating, “Ba-ba-ba-ba-ba?” in a tone of anguished questioning, as if to say, “How can this be?”
RIC’s goal was to teach Dad strategies to help him function as well as possible, with the help of caregivers. But he would never again be selbstständig. Four weeks after his stroke, Mom and I went together to RIC to spend the day observing Dad’s multiple therapy sessions. His physical therapist, an energetic and enthusiastic woman of about thirty dressed in green scrubs, introduced herself to us, then got right down to business. “Since he can’t move his right side, we’re going to work those muscles for him so they don’t atrophy and curl up.”
She looked Dad in the eye, telling him what she was about to do, then picked up Dad’s right leg by the ankle, her other hand under his knee. She pressed his lower leg toward his chest. “Keep the knee in a straight line with the trunk,” she instructed us, “and hold it here for thirty seconds while supporting his knee. Do this ten times on each leg.”
Mom practiced, and then I took a turn. Dad’s leg was heavier than I expected. Pushing, lifting, and supporting this dead weight would be a workout for sixty-eight-year-old Mom.
“These exercises should be done at least twice a day: in the morning, in the evening, and, ideally, once more during the day,” said the PT. That was ninety minutes a day just for the exercises. How would Mom handle all this alone?
Dad works with an occupational therapist, 1985.
Dad was assessed by a speech therapist. He suffered from aphasia, the inability to use or comprehend language in any form, even though his intellect and cognition were still intact. An occupational therapist worked with him daily to develop left-hand dexterity. Dad got the tooth-brushing down fairly well, but he missed his face with the razor and usually ran the comb through the air above his head.
On one of our visits, the physical therapist wheeled him to his session. Upon entering the cubicle where they would work, Dad caught his image in a full-length mirror, set up to help patients observe themselves doing the exercises. It was the first time he saw a full-body reflection of the new person he had become. He stared at himself with bitter recognition: an invalid in a wheelchair. His paralyzed right arm was strapped down with Velcro onto a flat board so it wouldn’t flop at his side. A seat belt prevented him from falling out of the chair. He was mute, dependent. He pressed his lips together and slowly shook his head back and forth.
After the first month in rehab, Dad was crying less and less frequently when Mom and I came to visit. His previously enthusiastic personality was beginning to show through after the dark days of sobbing and hopelessness. When we arrived, his eyes lit up, and he smiled broadly. “BA-BA-BA!” he exclaimed in greeting.
Heartened by Dad’s efforts to be cheerful, Mom herself looked less haggard and glum. Her eyes shining, with a bright smile and tone as if she were springing a surprise, she said, “Would you like to come home soon, Fred?” gesturing out the door to indicate “away.”
He picked up her cue. “Oh, ba-ba—BA-ba ba,” he intoned with enthusiasm.
He took first Mom’s hand and then mine, pressing one to each cheek. Mom said, “We want you home, too, Fred.”
CHAPTER 47: Reconciliation
Dad hugs Mom, 1986.
Just before Christmas of 1985, a Medivan drove up to my parents’ home, where Mom and I waited to greet Dad. As the automated lift lowered him to the sidewalk, he looked up at his house, dropped his chin to his chest, and shuddered with silent tears. Mom and I embraced him from both sides.
“Welcome home, Fred.”
“Welcome home, Dad!”
Then I turned his chair around and kalumpfed it backward, step-by-step, up to the front door. Inside, just to the left of the entryway, a hospital bed and portable commode were awaiting him in the music room, where Dad used to feed rats to Lucifer. “Here’s your new bedroom, Fred,” said Mom, gesturing. He nodded, but his eyes registered a whisper of surprise—and resignation at his new space. Perhaps he’d wondered, without being able to use words, how he’d get up to his second-floor bedroom.
Shelley, Dad’s home health-care worker, came every weekday from nine to two thirty. Wearing a turban and a friendly smile, he walked over to Dad’s bed and touched my father’s shoulder. “Hi, Fred. How are you today?”
“Oh, ba-ba-ba-ba-ba,” Dad said, pressing his lips together, shrugging his one shoulder, his eyebrows raised slightly in an expression of “not bad.” Whether he comprehended Shelley’s exact words or not, he understood the rhythm of social interaction.
“Okay, let’s get you going today.” Shelley bantered as he worked with Dad. A sturdy metal triangle, called a “trapeze,” hung from an L-shaped arm above the bed. Grasping the trapeze with his left hand, Dad pulled himself to a seated position with Shelley’s help. Chattering away, Shelley washed and shaved Dad, and combed his hair. Dad joined the conversation with just the right “ba-ba-ba-ba” intonations and facial responses.
After he was dressed, we helped Dad transfer to his wheelchair. Starting from a seated position at the edge of his bed, Dad scooted himself, using his good left hand, across a long, polished board: from bed to wheelchair and back; from wheelchair to commode and back; and, for short trips, from wheelchair to car seat and back.
It took about an hour to prepare him for the day, after which Shelley wheeled him into the kitchen for breakfast. At every meal, Mom tucked a large dish towel into his shirt collar, draping it over his stomach, and placed another on his lap. He’d learned to feed himself with his left hand, but still, something usually spilled.
Shelle
y’s help allowed Mom to run errands and get out for a bit. Before leaving, Shelley put Dad into bed for a nap, arranging the pillows to support Dad’s paralyzed arm. After his nap, Mom took over with afternoon exercises, dinner, and getting Dad ready for bed.
On one weekend visit, I commented, “You know, Mom, you look quite a bit thinner.”
“Really? I wonder why. I’m not dieting.” It came to me. The forty-five or ninety minutes of exercises she performed for Dad each day (morning exercises were performed by the caregiver Monday through Friday) were getting her into shape, too.
Mom seemed oddly content. The perpetual scowl was gone, and she was no longer prone to angry outbursts. Bustling from room to room, she still managed our former West Side home, kept track of the finances, and arranged for workmen as needed; but an inner peace, rather than crackling resentment, now accompanied her efficiency. After arranging for power of attorney, she gained access to the stock portfolio Dad inherited after his parents’ deaths eight years earlier. He hadn’t wanted her involved with it out of misplaced pride, but he had neither the interest in nor the aptitude for boring financial details. Multiple uncashed dividend checks, some over a year old, were stashed in his desk drawer. Mom took charge of the stocks, studied the market, read Kiplinger’s financial newsletter, and talked with Bill and me about investment strategies. “I’m getting everything in order,” she told me, proudly showing off her impeccably neat financial records.
Every garbage day, Mom set out aside piles of Dad’s collected junk, but she waited until just before pickup to bring it to the curb, so he wouldn’t see it. Otherwise, he pointed out the window, wagging his finger up and down at the heap of boards, boxes, ropes, and rickety cabinets, exclaiming in an agitated cavil, “BA-BA-BA-BA!”
Mom mollified him. “Okay, Fred, I’ll bring it back,” she said, then made a big show of taking a few pieces from the curb to the side of the house, throwing it all out at her next chance when he wasn’t looking. “We have more garbage out there every week than anyone else on the block,” she often told me in satisfied tones during my weekend visits. “I’m finally getting ahead.”