Elderhood
Page 30
What we know about aging depends on whom we look to for information. There are medical, developmental (biopsychological), institutional (socioeconomic), and cultural (stereotypes, perceptions) approaches. The sociologist Carroll Estes has examined the medicalization of American aging15 that began in the late nineteenth century and continues today. Until then, aging was seen as a natural process and survival to advanced old age as an accomplishment.16 With medicalization, medicine gained the power to define normal and pathological. Behaviors, body functions, and physical states were reinterpreted, and what had once been considered natural or cultural became amenable to diagnosis, management, and treatment. Popular magazines stopped discussing longevity in favor of articles on senescence and its medical symptoms. Old age began to be formulated as a social problem by people across sectors. The focus moved to its “pathologies”: physical and mental limitations, poverty and dependency.
The problem with medicalization is that while it opens up opportunities in some ways, legitimizing aging changes by drawing on the authority of medicine and creating work for people who tackle that “disease,” it also limits the types of responses we have to it as individuals and as a society. Not infrequently, we forgo the more helpful for the more medical.
The medicalization of old age defined normal in the image of those who deemed it so, the powerful and usually not-old (or not seeing themselves as “old” regardless of their actual chronological age). Others, meaning well and hoping to steer clear of the inevitable pathologizing of medicalization, assert that old age has different norms. It’s normal for older people to have thinner skin than younger people, for example, even if such skin is clearly more prone to tearing, bruising, and breaking down. But although it’s common to have trouble seeing in the dark or hearing high-pitched sounds in old age, does that mean they aren’t challenges and pathologies? And though most eighty-year-old men will have an enlarged prostate, is that normal? Most people would answer no: everyone wants to see and hear and urinate with ease, and not doing so is not normal; it’s pathological.
In his breathtaking cultural history of American old age, The Journey of Life, the insightful Thomas Cole calls this our “paradigmatic polarity of normality and pathology.”17
I know that now, and can quote him, since I finally read the fantastic books he sent me. I’m also asking better questions.
For thousands of years, scientists and philosophers have noted this blurring between normal and pathological in old age. In Terence’s play Phormio from around 161 B.C., the following exchange: Demipho—What kept you there so long then? Chremes—A disease. Demipho—How came it? What disease? Chremes—Is that a question? Old age itself is a disease.18 If old age is a disease, then a medical approach logically follows.
But if old age and disease cannot be reliably distinguished, is the problem old age, or is it something far more fundamental, such as our classification system and our compulsion to classify ourselves and each other in particular ways? If that’s the case, is normal versus abnormal a useful paradigm?
Old age is partly defined by illness, but it is also a normal, natural part of life. If we want to understand and optimize it, we must look not only at medicine but into all other realms of human thought and experience.
COMMUNICATION
By the time I arrived at the emergency department, George had been there for several hours, and the usual late-afternoon busyness was in full swing. I scanned the monitor, found his name, and saw the telltale five-letter word beside it: ADMIT.
They’d put him in one of the smaller rooms, and his wife, Bessie, had moved out of the way just outside the door to make room for the admitting team. They were stationed around his bed, interviewing him as Bessie and I greeted each other. In the silence that followed, we listened while George explained the circumstances of the fall that had landed him in the hospital.
“He’s always loved an audience,” whispered Bessie.
Inside the room, a young man wearing the short white coat given to medical students asked, “And that was when you felt faint?”
“Right,” George said. “I’d gone over to inspect the workmanship. Woodwork wasn’t my job but I’ve always liked it, and I wasn’t half bad at it back in the day either.” He looked around for Bessie, and she nodded. He smiled. “I’ve never done that kind of work myself, you know, pews and altars and like that, but I sure do enjoy seeing it.”
“Sorry,” said a small woman who was clearly the team leader. “Can you describe exactly what you felt just before you fainted?”
Bessie glanced over at me, her face silently posing a question, but I held off from moving into the room. George looked good—better than I’d expected based on the phone call I’d received from the administrator telling me what had happened. Luckily, I’d been in a meeting the next building over. From the doorway, it seemed that he’d suffered no serious injury and was pleasantly surprised to be the center of so much youthful attention.
“Yes, yes, of course,” he said. “So I leaned forward to get a better look, and the next thing I knew, I was on the ground.”
Darkness, said George conspiratorially, had come over him all of a sudden. He made eye contact with each team member, waving his arms for emphasis.
“You know he told a completely different story to the first doctors,” Bessie said, referring to the emergency doctors. “They understand he’s making all this up, don’t they?”
I shook my head. The intern and medical students were taking notes, and the resident was listening attentively. This was one of the main reasons I’d rushed to the emergency department. George’s dementia was of a type and severity that although he couldn’t remember how he’d fallen, he could still invent a darn good story and relay it convincingly.
“Did you have any pain in your chest?” asked the resident.
“Oh, no. Nothing like that.”
“What about a feeling like your heart was beating really fast or irregularly?”
George squinted with concentration. “Maybe.” He folded his hands in front of him and looked down at them pensively. “Yes, definitely. I almost forgot! It was a funny sort of feeling …” He smiled, ready for the next question.
Unable to recall actual events, a person with dementia may construct a new, plausible version of reality. From the thoughtful pauses before he answered questions and his attention to detail, I was fairly sure that George believed his own inventive story.
In the little crowd of doctors, the intern stood closest to the door. I touched his shoulder to get his attention and asked to speak to him for a moment in the hallway.
“Oh,” he said when I explained that George was confabulating. Bessie relayed that he had not fainted but tripped. They had gone out for a walk and stopped at the church, as was their habit. Needing the restroom, she had left him seated on a bench in the foyer and returned just a few minutes later to find him on the ground near the side altar, bleeding from his head. A parishioner who had seen the fall told Bessie that she’d watched George trip over one of the raised wooden baseboards connecting the pews. His cane was still propped by the bench in the foyer; this wasn’t the first time he’d forgotten that he needed it.
To their credit, the medical team regrouped swiftly and a care plan was made based on the accurate information provided by Bessie rather than on George’s misleading and potentially dangerous account of events. This spared George the considerable risks of a hospital stay and evaluation and treatment of problems he didn’t have.
If George had received a workup for heart conditions that cause fainting, he would have unnecessarily incurred all the risks of those tests and of treatment for any positive test results, which were more likely given his age but might not require management given his lack of symptoms and limited life expectancy. During a hospital stay, he also would have developed delirium with all its grave risks—he always did. Equally dangerous, the true reasons for his fall would not have been addressed, leaving him at increased risk for more injuries. Kno
wing the real story helped us get him home that evening, which was what he and Bessie preferred.
People hearing George’s story might reasonably assume that his dementia was missed because the doctors caring for him were still in training. Or that the medical team hadn’t seen the Alzheimer’s diagnosis on the long list of his medical problems. In fact, every few years studies come out demonstrating that fully trained doctors of all types frequently miss dementia or misjudge its stage and severity. Those same clinicians rarely fail to properly diagnose or stage other, similarly common problems in vital organs, such as heart disease or kidney failure. Like dementia, each has many causes and at least one validated severity scale that starts with disease the patient can’t yet feel or see and progresses to fatal illness. All these conditions become more prevalent with age, but dementia is the only one handled this way.
A man will say he’s got kidney problems, but on the medical record it will say “diabetic nephrosclerosis” and “stage III kidney disease.” A woman may tell her friends she’s got breast cancer, but her doctors will know its cell type, receptor status, grade, and stage. In dementia, the medical record often lacks that specificity. This is partly because of what information counts in medicine. Most dementia diagnoses are based on constellations of symptoms and behaviors. That approach is considered less useful and definitive than tissue pathology from a biopsy. Yet diagnostic criteria can be quite accurate—in the hands of a trained clinician. They take time, however, and there’s no more precious commodity for clinic doctors. Biopsies take time, too, but someone else’s time, and the billing is high, so health systems are pleased by the profitability and appearance of efficiency. Never mind that biopsies carry risks of bleeding, infection, and injury, while clinical assessments allow relationship building and insight into key health- and wellness-relevant aspects of a patient’s life. Thus patients often are noted to have “dementia,” even though in the absence of a more specific diagnosis it’s impossible to give them and their families good advice about what to expect and when.
Doctors do many things when it comes to geriatric syndromes like dementia that would be considered sloppy or unacceptable for other chronic conditions. We are taught how to approach toddlers in order to look in their ears, how to use translators when patients don’t speak English, and how to make a woman comfortable in advance of a pelvic exam, but most clinicians receive no training in how to communicate optimally with someone with dementia. As a result, history, physical exam, and rapport suffer. Some clinicians resort to infantilizing patients with dementia, ignoring them and speaking to their family member or caregiver instead. Unless the patient is in a more advanced stage of disease, they will know they are being ignored, insulted, and infantilized.
Because so many health professionals don’t know the techniques that aid in communication with people with dementia, families assume such techniques don’t exist. In a sick twist on Tolstoy’s “each unhappy family is unhappy in its own way,” millions are left to struggle independently, enduring years of frustration and misunderstandings with their loved ones. Fortunately, many community organizations offer online information and in-person trainings, filling some gaps left by the health care system. But many families, well trained by medical culture, believe if a treatment was useful, it would be used by doctors themselves or come from a doctor in the form of a pill or procedure.
At least George’s care team began by talking to him. Their mistake was in not assessing his cognitive ability early on to determine his ability to provide the information they needed. They proceeded as they’d been trained to do, following a time-honored sequence for hospital admission questions, a process that places cognitive evaluation late in the interview and considers it extra, not essential. A one-size-fits-all approach that only works on patients whose lives fit within the approach’s underlying assumptions.
FREEDOM
In her early hundreds, Sadie Delany said of herself and her sister, also a centenarian: “You know, when you are this old, you don’t know if you’re going to wake up in the morning. But I don’t worry about dying,19 and neither does Bessie. We are at peace.” And there was also this: “We’ve buried so many people we’ve loved; that is the hard part of living this long. Most everyone we know has turned to dust.” Roger Angell concurs: “Here in my tenth decade, I can testify that the downside of great age is the room it provides for rotten news.”20
But then again—in old age, there is always not only an “on the other hand” but a third hand, and a fourth, and so on—there was this, too, from Angell: “A majority of us people over seventy-five keep surprising ourselves with happiness. Put me on that list.” His take echoes that of the physician-writer Oliver Sacks’s thoughts on his eightieth birthday in a New York Times article titled “The Joy of Old Age. (No Kidding.).” The title captures the essence of the piece, which includes this reflection: “My father, who lived to 94, often said that the 80s had been one of the most enjoyable decades of his life. He felt, as I begin to feel, not a shrinking but an enlargement of mental life and perspective. One has had a long experience of life, not only one’s own life, but others’, too.”21
What these writers say about old age echoes what is told to me by my patients—educated and illiterate, rich and poor, immigrants and American born. More than old age itself, it’s the insults and exclusion from conversations, buildings, and activities, and the threat or reality of life in an institution that deprives them of autonomy and humanity that transform ordinary hardships into the miseries and suffering we associate with being old.
Consider these casual degradations known as “microaggressions”22 routine in the lives of old people: You’re still up and around! You’re not old! How are you, really? Or: She’s so cute! What can we do for him today? Hello there, young lady! I know it’s awful to ask, but how old are you? Consider, too, the many nonverbal microaggressions against old people: Discounting. Ignoring. Assuming. Condescending. “Helping” without asking. Pushing by on the street. Stairs without rails. Chairs without arms. No clothing that fits. Technology made for different fingers, eyes, ears, preferences. Laughter. Eye-rolling. Speaking over. Looking through. Baby talk.
If we don’t much like the idea of aging, certainly we don’t want to be old, or associated with the portion of later life we think of as “old.” In youth and adulthood we dread and in old age we lament the lost functions, faculties, and friends, occupational redundancy, social trivialization, societal marginalization, and isolation that eventually accompany old age. We don’t want to have to constantly contend with what doesn’t work and isn’t attractive. And uniformly we don’t want to end up dependent, hopeless, helpless, and institutionalized.
Most of us will experience at least a few of those fates in our lifetimes. But to look at old age and see only those situations is equivalent to looking at parenthood and seeing only the months of sleepless nights with a screeching, colicky baby or the midnights waiting and worrying about an increasingly distant and reckless teenager. Although the concerns are real, they represent just part of a much larger picture.
Glance at cartoons or quotes about the human life span, and you’re likely to come away with two mistaken impressions: first, that half our years are spent in the transit from infancy to early adulthood, and second, that life is great fun until sometime in early midlife, when it becomes unpleasant, serious, and confusing, and then heads unremittingly downhill. Such portraits are fairly accurate appraisals of middle age, but completely wrong about old age in America. To most people’s surprise, a large study of the United States found that midlife is the time of least happiness, greatest anxiety, and lowest life satisfaction23 for both men and women. Things begin looking up around age sixty—and not because the “younger old” are skewing the curve. The Gallup World Poll, which studies countries large and small, poor and rich, agrarian and industrialized, finds that life satisfaction assumes a U-shape across life24 in wealthier countries but different patterns elsewhere. Data from the United States
and Western Europe confirm that most people are around sixty before they achieve levels of well-being comparable to those of twenty-year-olds,25 and rates climb thereafter.
The increased well-being of old people seems made up of both declines in negatives and increases in positives. In one recent study, anxiety marched steadily upward26 from the teenage years to its greatest heights between ages thirty-five and fifty-nine. In the early sixties, it dropped markedly, falling again at sixty-five, then staying at the life span’s lowest levels thereafter. Conversely, sixty- to sixty-four-year-olds were happier and more satisfied with their lives than people aged twenty to fifty-nine, but not nearly as happy as those aged sixty-five and over. Even those over age ninety were happier than the middle-aged. As the poet Mary Ruefle has said, “You should never fear aging because you have absolutely no idea the absolute freedom in aging; it’s astounding and mind-blowing. You no longer care what people think. As soon as you become invisible—which happens much more quickly to women than men—there is a freedom that’s astounding. And all your authority figures drift away. Your parents die. And yes, of course, it’s heartbreaking, but it’s also wonderfully freeing.”27 In sum, depending on the measure, by their later sixties or early seventies, older adults surpass younger adults on all measures, showing less stress, depression, worry, and anger, and more enjoyment, happiness, and satisfaction. In these and similar studies, people between sixty-five and seventy-nine years old report the highest average levels of personal well-being, followed by those over eighty, and then those who are eighteen to twenty-one years old.
Such findings are equally remarkable for their near universality and how they confound common lore. Ironically, it’s the in-betweens, those generally thought to have the most power and influence in society, who are actually the unhappiest and least satisfied among us. It may not be coincidence, then, that this is the group most responsible for the nearly ubiquitous false messages about old age.