Elderhood

by Louise Aronson

  For the first half of the almost decade I knew her, our appointments took place in her living room, Betty seated in a faded armchair using an exercise device that consisted of bicycle pedals without the rest of the bike—just foot pedals on a stand. As I unpacked my equipment or typed my visit note into my laptop, she would move her feet around and around while discussing her family or listening to talk radio.

  Her radio stayed on from morning until she went to sleep at night, usually playing the sorts of programs that reveled in the denigration of entire categories of human beings. Since those categories described not only the vast majority of California residents but also all her caregivers and many of our medical students, I sometimes wondered what our appointments might have been like if Betty could have seen. But that wasn’t the reason I hesitated to visit Betty on my teaching days.

  The problem wasn’t who she was so much as how she looked. Her appearance didn’t qualify as outright grotesque, but with lost eyesight, worsening debility, out-of-town children, and poorly paid caregivers, she looked as any of us might, given enough decades in old age and care that prioritized the bare necessities. Betty could neither do for herself nor ask her caretakers for the extras that often come to define us: things like a good haircut, a flattering shirt, and, for many pale-skinned women by midlife if not sooner, some foundation face cream and a little rouge or lipstick. In appearance, she embodied people’s deepest fears and prejudices about old age, even if once you knew her she was just Betty: widowed wife, former mother’s club leader and guild president, proud grandmother, and enduring local team sports fan.

  Ironically, Betty was a terrific student “case.” From the perspective of medical science, it was remarkable that she had lived into old age. For as long as anyone could remember, her body had needed insulin injections to keep her blood sugar from surging into the territories of coma and death. Diabetes claimed her vision, a good bit of her kidney and heart function, and much of the feeling in her feet and fingertips. Around the time I met her, the first studies had come out showing an association between diabetes and dementia, so even though we didn’t yet know whether it would help, as Betty’s cognition worsened, I worked hard to keep her sugars fairly normal in the hope of slowing her intellectual losses. That strategy worked really well—until it didn’t. One winter, for no apparent reason, she kept landing in the hospital with astronomic blood sugar levels.

  I should back up. For several years before and after I took over her care, Betty was one of the most stable patients in our housecalls practice. Although I occasionally spoke to her out-of-town family by telephone, mostly I dealt with her live-in caregivers. Then one day, the surly Filipina who often disappeared downstairs to her room behind the garage after letting me in was replaced by a Tongan woman. Her name was Tokoni, and her personality was as expansive as her tall, soft body. By my second or third visit after her appearance in Betty’s life and house, Tokoni was hugging me hello, smiling, joking, and squeezing my arm when I commended her work. Betty seemed to like Tokoni too. She smiled more and began gaining weight.

  The only time I remember discussing Tokoni’s work situation was the second time I met her, when I asked a few questions in order to update the caregiver section of Betty’s social history in our medical record system. For frail patients, it’s essential to know the names and contact numbers of the people playing important roles in their lives.

  “Who else works here now?” I asked.

  “No one,” Tokoni replied, grinning and slapping her big thigh. “I am the only one.”

  We looked at each other. It’s illegal to have someone work twenty-four hours a day, seven days a week. Given the state of the house, I doubted Tokoni was paid overtime, though she obviously got room and board, and the twenty-four-hour rule can sometimes be finessed if the caregiver lives in the same house or apartment and isn’t technically working at all times. At the very least, caregivers need to be allowed to sleep, and it seemed to me likely that Tokoni slept most nights, since Betty slept a lot even during the day. Still, I could only think of one reason why someone would take such a job. Clearly, Tokoni was not only a woman in later middle age with great intelligence but little education; she was also undocumented.

  For a second or two, neither of us blinked while we silently took stock of each other’s priorities and position. The facts were these: Betty needed care, her family didn’t have much money, and they either couldn’t or were unwilling to provide that care themselves. Tokoni needed a job and a place to live and knew how to take care of people, but her legal status left her with few options, and she was satisfied, if not pleased, by her current situation.

  While there may be sectors of the economy in which undocumented workers take jobs from Americans, in twenty years of geriatrics, I had only met a handful of working- or lower-middle-class families who had been able to find an American willing to care for their aging relative for a salary they could afford. Even the upper and upper-middle classes, with enough money to pay the going rate or more, struggle to find caregivers. Often, when they do, they pay higher rates, most of which go to agencies, while the caregivers themselves—those people in whose hands a loved one’s life and well-being are placed—still receive minimum wage.

  My role, it seemed to me, was to make sure my patients got what they needed and that neither they nor their caregivers were endangered. In an ideal world, caregivers would get paid a living wage with benefits and protections, and more people would want to do that work. In the real world, if Betty’s family could not hire people like Tokoni, they would put her in a nursing home—a fate she, like most older adults, dreaded. From what I’d seen of the places Betty could afford, and given her complex medical diagnoses and total care needs, it seemed likely she would suffer, then die within a matter of months. If she didn’t, the family would need to sell her house to pay for her care, and when the money ran out, Medicaid would take over. Those simple realities made my decision easy. As long as Betty was adequately cared for, I had no intention of making trouble.

  Tokoni read my mind. She put her broad, warm hand on my wrist and nodded, sealing our unspoken agreement.

  But there was one other question I had to ask. Betty could not be left alone. Lately, when she tried to get up unassisted, she fell. At the same time, it wouldn’t be good for either of them if Tokoni was a prisoner in Betty’s house.

  “Do you ever get out?” I asked.

  Tokoni laughed and clapped her hands. “Of course, of course! My sister works just there.” She pointed south with her lips and nose. “Just two houses away.”

  We were both grinning. Tokoni’s singsong English and mirth were charming, and I was hugely relieved by her answer.

  “Her patient cannot think but can walk. They walk every day, all day long. When I go out, they come here and watch Betty. That way, I go shopping. I go get the medicines. I go wherever.”

  “Good,” I said, trying to make a point indirectly. “You need fresh air and exercise and time off too. If you aren’t healthy, Betty won’t be either.”

  Tokoni squeezed my shoulder, a look of delight on her face. “Yes, yes! You are right! I do that. You don’t worry.”

  I couldn’t tell whether that was true, but clearly I had pushed far enough. And the rest wasn’t necessarily any of my business as long as Tokoni seemed healthy enough herself and continued to take good care of Betty.

  Over the next few years, I would sometimes encounter Tokoni’s sister, Elenoa, and her charge at Betty’s and marvel at how different the sisters were—practically opposites physically and in terms of personality. Elenoa was shy, reserved, and surprisingly slight for a Tongan. I wondered whether they were actually related or merely “sisters” in the sense of compatriots who had bonded to get through the disappointing and difficult realities of life for the undocumented poor in the United States. Then one late winter afternoon a few months after Tokoni told me Betty was less and less able to walk, I arrived for a visit to see if the physical therapy I’d order
ed had helped, and Elenoa answered the door. The sisters, she informed me, had traded jobs.

  Without elaborating on the when or why of the job exchange, Elenoa stood aside for me to enter the house. On past visits, if she and her former charge had been present, she had always vanished quickly into another room or left the house. Now I noted that—unlike Tokoni, who always wore loud, loose, mismatched shirts and pants—Elenoa had combined similarly bright-colored clothing into an artful, understated outfit.

  Her eyes studied the carpet. She seemed uncomfortable and a bit sad. When it became clear she wouldn’t speak spontaneously, I asked how Betty was.

  “I show you,” she said, turning to walk toward Betty’s bedroom in the back of the house.

  Although considerably smaller and fitter than Tokoni, Elenoa moved in slow motion. She also struggled to answer even fairly straightforward questions. Later in my visit, she took five minutes to get a pill bottle I needed from the next room. I couldn’t tell whether she was bored, not fluent in English, not very smart, nervous, depressed, or some combination of all those factors.

  After I finished with Betty, I asked to see her blood sugar log. Elenoa looked at me and picked up the phone. A few minutes later, Tokoni showed up.

  “Sorry, sorry!” she said, laughing. “Now Betty is too much for me! She need more help. My sister is younger. So we make a trade. Good for everyone, no?!”

  I could see her point. The neighbor woman’s dementia was more advanced and she no longer spoke, but she was thin, agile, and fit appearing, perhaps because she was constantly in motion. Betty had become voluptuous, and although she could still sit up, she could no longer walk, dress herself, or get to the commode. She went into the living room every day and periodically used her pedal exerciser, but she needed a sling lift to get her out of bed and a wheelchair to get around the house.

  “I teach my sister the insulin,” Tokoni said. “You no worry. Look, look—how good is Betty?” And she straightened Betty’s hair, patted her arm, and grinned.

  A few months later, on an early summer’s day, Elenoa called to say that Betty was sick. She couldn’t sit up or get out of bed. She wouldn’t eat. Elenoa couldn’t wake her up completely. Maybe Betty was coughing. Maybe she had a fever, or maybe her urine had an unusual odor—potential signs of infection. Though vague on specifics, Elenoa made clear that Betty was sick.

  One of my colleagues took the urgent call, then spoke to Betty’s grandson, and they sent her to the hospital. Blood tests found her sugar level—less than 110 in healthy people and generally kept at least under 200 in people with diabetes—was over 500. Other blood test results and kidney function were also significantly abnormal. Illness raises the sugar level, even if the person takes their usual medications, pushing them into a cascade of dehydration, higher sugars, dangerous levels of blood salts and acids, coma, and death. Betty had bacteria in her urine and blood. She’d developed a bladder infection, but perhaps because older people usually don’t have the same symptoms as younger people with such infections—they are more likely to feel sleepy, fall, become confused, or lose their appetites than to have painful, frequent urination—Elenoa didn’t notice. The infection spread to Betty’s blood, becoming life-threatening both directly and because of its effect on her diabetes.

  Betty was admitted to the intensive care unit. Although she had two serious conditions, she responded well to careful adjustments of fluids, antibiotics, and insulin. Three days after arriving at the hospital, she went home.

  The next day, I added her to my morning housecalls schedule.

  After I arrived, Elenoa and I exchanged pleasantries, and then she walked not left into the living room but through the dining room toward Betty’s bedroom.

  “How is she?” I asked.

  When people have enough dementia that they give unreliable answers to questions about anything other than that moment in time but not so much mental impairment that they can’t tell they are being discussed, I talk to their caregiver or family in another room before seeing them. That’s what I would have done with Betty, except I’d already learned that Elenoa didn’t feel comfortable with that approach. If I asked her about Betty’s eating, sleeping, and other activities in the hallway, she gave answers that suggested she thought her role was to guess what I wanted rather than provide me with facts.

  “She is okay,” Elenoa said.

  “Has she gotten out of bed?”

  “Not yet.”

  By this time, we were almost at Betty’s open bedroom door. I had time for just one more question.

  “Has she eaten?”

  “Last night.”

  What I really wanted to know was whether Betty was back to herself. Often when older people end up the hospital, even for a few days, the focus is on fixing the medical issue—in Betty’s case, out-of-control diabetes, and bladder and blood infections. Little attention is paid to what illness and a few days in bed can do to the person, and too often people who didn’t know a frail older person before their hospitalization will assume they couldn’t walk or think clearly in the first place. And sometimes they couldn’t, but everyone has a functional baseline. It’s hard for hospital doctors and nurses to assess whether someone is back to a baseline they’ve never seen. In the days when the same doctor took care of a patient in clinic and in the hospital, that doctor would know. Now hospital staff must rely on family or caregiver reports, but what two different people mean by “He walks normally” or “She’s totally with it” can differ dramatically.

  Betty was asleep. At least, I hoped she was asleep.

  I put down my bags and said hello. No response. I touched her shoulder and shook her gently, knowing full well that I wasn’t trying very hard.

  Her eyes opened.

  “Hi,” I said using Ms. and her last name, and then Dr. and mine.

  Her lids fluttered and her lips parted into the best smile she could muster with a dry mouth.

  “Hello,” she said. “You’re here early.”

  It was morning but no longer early. On the other hand, how could she know that when she didn’t have enough vision to tell day from night?

  Betty’s tongue moved inside her mouth and along her lips.

  “Would you like a drink?” I asked.

  She nodded. Elenoa and I exchanged a glance, and she left the room.

  As I asked Betty questions—Was she in pain? Where had she been the last few days? Who was the president? What was her favorite football team?—I turned on my computer. By the time the hospital had sent her home, Betty’s blood sugar and salts had returned to normal and a specialized diabetes test had come back. Unlike a blood sugar level, which measures a single moment in time, the Hemoglobin A1c test gives a sense of the sugar levels over a six-week period. If you think of blood sugar level as how a student does on one quiz, then A1c is more like their grade for the semester.

  For the first that we knew of, not only had Betty badly failed the quiz, but her grade for the entire term was also in jeopardy. Her A1c wasn’t awful, but it was higher than it had been in all the years I’d cared for her.

  The hospital doctors said she needed more medicine. They recommended increasing her long-acting insulin and maybe adding a second type of insulin, suggestions they made with a familiar, irritating confidence. If you’re a primary care doctor and work mostly in clinics, not hospitals, the tone says they are smarter than you and that you have screwed up and that’s why your patient is in the hospital.

  But in caring for Betty, they were more like the blood sugar level and I was more like the A1c, so I knew they were treating a symptom and not the underlying problem. Yes, Betty’s sugars were higher, but why?

  Though she had bruises up and down her arms from hospital IVs and blood draws, Betty seemed back to normal mentally and, for the most part, physically. Looking at her, a person from a distant land might think the hospital staff had beat her up, not saved her life.

  After Elenoa set Betty up with water and the start of her breakfast, I
asked her to join me in the kitchen. A person’s blood sugar can go up for many reasons, the most common being a change in diet, activity, or medications. Elenoa assured me that before the hospitalization Betty had been eating the same amount of the same foods she always ate and nothing else about her routine or activity level had changed. Although it was possible she was deceiving me, it seemed unlikely. While Elenoa had still been in with Betty, I’d had a look around. There was fruit in a bowl and the refrigerator had a good range of foods, including two prepared meals wrapped in cellophane. That meant I needed to review Betty’s medications.

  Elenoa produced a stack of papers from the hospital. The one that mattered listed Betty’s medications. I compared it with the list I had and Elenoa’s, which was years old with a few lines crossed out and added over time. I was relieved to find complete concordance among the three, something that should happen every time a patient goes home from the hospital but which is too often the exception not the rule.

  Next, I asked Elenoa to show me the bottles for Betty’s medication and tell me what she gave her and when.

  She opened one bottle and turned it until a pill dropped onto her palm. “This one in the morning only,” she said.

  She closed that bottle and opened another. “Morning and after dinner,” she said.

  Watching her hands, and the little lines that appeared around her eyes as she stared at the pills, I realized Elenoa was older than I’d always thought, probably in her late fifties or early sixties. I’d been fooled by her graceful movements and lovely skin.

  She continued dropping pills into her palm until she’d been through each bottle, both the prescription medications and the over-the-counter vitamin D. At no time did Elenoa consult any of the medication lists, nor did she read the pill bottles. And she didn’t look at me once as she did this or when she finished.