One Hundred Names for Love: A Memoir (20 page)

CHAPTER 16

A
MIDDLE-AGED HOME HEALTH AIDE I’LL CALL FRED HAD
joined us at first, a quiet man with a shaved head, freckled face, and genteel manner, who collected antiques and loved to cook. He had ways both strong and delicate, could hoist a grown man out of bed or arrange flowers in tiny pots with tender precision. One day, after he knew us for a while, he confided that when he was in high school his mother, learning that he would never be in a traditional marriage, encouraged him to take a course called “Housekeeping for Bachelors,” which he had relished. A knowledgeable aide with an understanding of the health care system, he often prepared Paul’s pills and routines and helped him dress and safely roam the house. Fred was a real character, but I’m going to tell you very little about him, because in time we discovered that he was stealing cash from Paul, using Paul’s credit card for personal expenditures, and other misdeeds, and we had to let him go. This was our first experience with “elder abuse,” and it took me the longest time and clearest evidence to accept. Paul suspected Fred sooner, and I’ve since learned that some people with left-hemisphere stroke, like Paul’s, actually improve their skill at interpreting people’s faces and catching people in lies. Unfortunately, I’ve also learned that elder abuse is all too common, and not always easy to spot since one isn’t expecting it and the abusers can be charming. It seems all the more grievous since the victims are the most sick and vulnerable among us.

Fred’s larceny soured Paul on the idea of aides. It was hard for him to understand why home help was so important for
me
, that, just as he found struggling to talk exhausting, I found it exhausting to interpret. It meant changing my mental gait and slowing way down, not peacefully, allowing moments to gather and stream away, but strenuously, as a sort of code-breaking that took total concentration. I was a spy in the service of love. There was no way to do it nimbly, or hastily, or indefatigably. After several hours, I’d blow a mental fuse, my brain would stop decoding, my head would ache, and I’d need to rest. Casual couple’s chitchat that used to wash over me without working the brain too hard had become strenuous. I reminded myself how frightening and formidable it was for Paul. Sometimes, guiltily, waiting for five or ten minutes for him to find words to express one simple thought, I might feel antsy, the physical equivalent of
Get on with it!
When rushed, I didn’t always have the patience to
sit, sit, sit,
waiting for him to make himself known. But mostly I understood, felt sorry for him, and sat.

Fred could wait for longer spells while Paul cast about for words, indeed spend most of the day in quiet reveries. He didn’t talk much to Paul, and I knew that Paul needed an “enriched” environment every bit as much as lab rats do to prompt his brain cells to grow more connections. I wanted him drenched in words every waking hour. And he needed to enjoy the chatter and try to pay attention, not let the words become background noise. I remembered Liz, the energetic nursing student who had nimble skills, a real gift of the gab, and had gotten along so well with Paul. When I phoned her, I explained that the dress code was ultracasual, chatter essential, and she’d be in the pool with Paul a lot.

On one of those summer days whose pristine blue skies make you stand and gape, the blue of calendars, David Hockney swimming pools, or Paul Newman’s eyes, Liz arrived wearing a sunny
red dress with a tropical floral print. Oddly enough for someone who only ever wore swim shorts or velour jogging suits, Paul had a savvy fashion sense, and as she entered he glanced at her dress and back at me, nodding his approval. The dress was sleeveless and showed off very muscular, able-bodied arms. Her face was deeply tanned, and she had the look of someone who really enjoyed the physicality of life.

Liz would become Paul’s part-time nurse, literary assistant, and gal Friday, and from the outset, she seemed uncommonly cheerful. Every morning, she would test Paul’s blood sugar and inject him with Lantus, a long-acting once-a-day insulin, if his fasting blood sugar indicated he needed it. Self-monitoring was out of the question, though he probably could have injected himself. He couldn’t read the fill lines on the syringes or safely interpret the numbers on the test meter. Numbers no longer made any sense to him at all. An 8 could just as easily have been a snowman, a 1 could have been a telephone pole. He didn’t know his address, phone number, birthday. Numbers didn’t just perplex him, he impressively mangled them.

While Liz sat at the kitchen table filling syringes, holding each one at eye level so that light shone through it, sighting tiny silver bubbles and dislodging them with a fillip or two, Paul and I stood at the picture window watching a flock of starlings plaster the sky, back and forth, in synchronized swipes. Then they funneled down and settled on a fence.

“How many birds?” I asked.

“Four hundred . . . no, fifty,” he said uneasily.

“Which is more,” I slowly posed, fifty . . . or four hundred?”

He thought for a long while, and was about to speak when, on a hunch, I said gently: “Try not to guess. Do you know for sure?”

“Fifty.”

“No, four hundred is much more than fifty.”

“Fifty is
m-more
than than four hundred,” he stridently insisted.

Paul used to be an ace at math, and had naturally assumed most of the numerical chores in the household, from calculating taxes to reading the water meter. We used to joke about my getting a 100 percent on my Airman’s Written Exam—which included many navigation and loading problems that had to be solved using a circular slide rule, not a calculator or computer—even though math didn’t come easily to me. I was by no means fluent in arithmetic, algebra, or geometry. I could do my multiplication tables, but not at speed or under pressure. So, keeping airspeed steady while flying the required “teardrop-shaped” holding pattern in gusty winds, while also re-computing my heading, was a living nightmare, and in practice at least, I usually got it wrong, drawing amoebas, not teardrops, across the sky.

Paul, on the other hand, had enjoyed math, which neither captivated nor intimidated him. Once, during an unusually boring seminar, he had even translated what he was being paid per hour into cans of Campbell’s soup! Was a lifetime’s practice with numbers, ratios, measurements, degrees—all of it erased? And to what extent was his right hemisphere singed by the stroke? A network in the left hemisphere identifies the words we assign to numbers, but then the right hemisphere helps picture the magnitudes that are involved, and those also seemed now to elude Paul.

He edged closer to me, close enough that our arms could touch, and I heard him whisper: “Two dollars.”

“Two dollars?”

Crooking a finger backwards, he pointed to Liz.

“We owe Liz two dollars for something?”

He cast me a slanting glance, and uttered a
What do you use for a memory?
sigh of exasperation.

“
Cuisine
,” he whispered emphatically, as if wondering how I planned to help him recover when I couldn’t even remember something that had happened an hour before.

“For picking up the Indian food?”

“Yes!”

“That cost
twenty
dollars, not
two
,
twenty
. Two plus a zero.”

Grimacing, he shook his head. “No—
two
dollars.”

No, for the time being at least, he couldn’t safely do his own blood sugar readings and insulin. Numbers might be shaped differently than words, but they no longer functioned as meaningful symbols.

On top of that, instructions of more than a couple of steps confused him. His
procedural memory
—the “how-to,” long-term memory of skills—was too damaged during the stroke. We couldn’t trust him to reason that IF his blood sugar was over 150, THEN administer insulin; IF less than 150, DON’T. Nor trust him to understand which pills to take when. I hated watching him feel so helpless. But we prefilled the syringes in groups of ten and stored them in the fridge.

We developed a standard breakfast routine which began with sugar-free, cold “hot cocoa” (a childhood favorite) thickened with Thick-It, a tonic surprisingly difficult to prepare. Thick-It clumps in hot water, and cocoa powder clumps in cold water, so we tried a variety of whisks, blenders, right- versus left-handed stirring, shaking while doing the Morris (English folk dance performed by men wearing bells around their knees), the shimmy, flamenco, strange versions of the rumba. After much trial and error, and laughter, we learned to mix the chocolate powder in hot water, stir out the lumps, then add prethickened milk. Still, getting him to eat much wasn’t easy.

For good reason, Kelly and the other speech therapists had alarmed Paul about the danger of food or liquid straying into his lungs and causing pneumonia. The hazard frightened Paul so dreadfully that now I couldn’t get him to eat much food, or even drink much, a more dangerous refusal. Altogether, he’d lost forty-five pounds, and since he started out very much overweight, he looked healthier and his blood pressure was lower. But we were getting to the point where he needed to maintain his weight. Constantly dry-mouthed because he couldn’t drink regular liquids without choking, he craved milk, and often tried to snatch it from the fridge. He needed to have it explained over and over (because he forgot immediately) why he wasn’t allowed to drink cold quenching milk, the satiny liquid with sheets-on-a-line freshness, a hint of vanilla, and a smart finish. He’d once told me that he loved the way it coated the mouth and lingered after swallowing. He loved that it came from female breasts. He couldn’t get enough of it, but had made do with a half gallon or so a day. Now, with the required dose of Thick-It, he refused to drink it at all.

After he had some blood work done, Dr. Ann phoned me.

“He’s still dehydrated,” she said with concern.

“Look, he’s just not eating or drinking,” I lamented. “I’ve tried everything.” Somehow it felt like my fault.

“Do you think it would be helpful if I spoke with him?” she offered. “I could drop by on my way home.”

A family doctor making a house call is now an antique custom, and I appreciated her kindness.

“Yes,” I sighed with relief. “Could you possibly?”

And so she did later that day, sitting on the couch with Paul as Liz and I hovered. Paul cast us the look of someone being cornered by gentle gorgons.

“I don’t want you to worry if there’s a conspiracy going on,” she assured Paul with touching directness. “I’m just going to tell you, there
is
a conspiracy going on. We’re conspiring to get you to eat and drink so that you don’t have to go back to the hospital! You
need
to eat. That’s really important, you need the nourishment and fluids now more than ever. I know you’re scared about maybe aspirating food, but not eating isn’t the answer. Just sit upright or lean forward, and take your time swallowing.”

Paul had trusted Dr. Ann with his life many times in the past. I thought, as I watched the scene, how dear and tribal it seemed: a sick boy fussed over by three caring women.

The next day, try as I might, I couldn’t hide my sadness and fatigue. I felt as if I were becoming Paul’s coach, cheerleader, teammate, teacher, translator, best friend and wife all rolled into one. No one can play so many roles without burning out.

“What’s wrong?” Paul asked

I tried not to say, but confessed anyway: “I’m overwhelmed.”

And a little later, to my surprise, he offered: “Do you . . . mem,
mem, mem . . . ebb outhouse—no! silly, not
outhouse
. . . out
side
. . . house. out for dinner?”

“Yes, I miss our dinners out together,” I sighed, touched that Paul was trying to cheer me up. I did miss them, and was overjoyed he felt brave enough to go out, but it was also a ploy to get him to eat again. Off we went to a local Japanese restaurant, with Paul haphazardly shaven, in a pair of plaid flannel boxers and a short-sleeved blue shirt. Never a dapper dresser, in our early days together he had worn slacks and a shirt, belt, thin socks, lace-up oxfords. During one notable year in the 1980s when he was a visiting professor at Colgate, he’d risen to the sartorial splendor of a blue velour sports jacket, wheat-brown corduroy slacks, white shirt with lightly starched collar, and a colorful tie. He’d often lamented how blandly men were obliged to dress, while women could express themselves through sumptuous colors and textures.