The Caregiver's Tale

Loss and Renewal in Memoirs of Family Life

Ann Burack-Weiss

• Publisher: Columbia University Press
• Year: 2006
• ISBN:
  9780231510776
• Topic: Sciences sociales
• Subtopic: Travail social

Ann Burack-Weiss explores a rich variety of published memoirs by authors who cared for ill or disabled family members. Contrary to the common belief that caregiving is nothing more than a stressful situation to be endured, memoirs describe a life transforming experience-self-discovery, a reordering of one's priorities, and a changed view of the world. The Caregiver's Tale offers insight and comfort to individuals caring for a loved one and is a valuable resource for all health care professionals.

Identifying common themes, Burack-Weiss describes how the illness career and social meaning of cancer, dementia, HIV/AIDS, mental illness, and chemical dependence affect the caregiving experience. She applies the same method to an examination of family roles: parents caring for ailing children, couples and siblings caring for one another, and adult children caring for aging parents.

Jamaica Kincaid, Sue Miller, Paul Monette, Kenzaburo Oë, and Philip Roth are among the many authors who share their caregiving stories. Burack-Weiss provides an annotated bibliography of the more than one hundred memoirs and an accompanying chart to help readers locate those of greatest interest to them.

part 1

Care Situations

Because of the elusive nature of disease, the name is often the only available emblem. Once accepted, specific names quickly come to dominate social reality. The flavor of the name can make a real difference in how the disease is perceived and acted on.

—David Shenk

chapter 1

Introduction

“The Flavor of the Name”

If your son lies dying in hospice, does it matter if he suffers from cancer or AIDS? If your mother denies that she ever gave birth to you, does it matter whether she has Alzheimer’s Disease or schizophrenia? In other words, what practical difference does a medical diagnosis make in the life of a suffering family member?

A case could be made for the lack of difference, for the inadequacy of any disease category to explain or contain the responses of family members. So much seems to do with the individuals involved and the history of their relationship. So little seems to do with the diagnostic label affixed to the medical chart.

A case could also be made for professional terminology making a profound difference. After her own experience with breast cancer, Susan Sontag (1978) uncovered many historical and literary metaphors, ranging from the religious (“cancer” seen as a punishment or retribution for bad deeds) to the psychological (a “cancer personality,” said to result from internalized anger and a lack of self-love). When AIDS emerged a decade later, Sontag revisited the theme with increased fervor (1989). Arguing that metaphors place a cruel burden on patients who are already fighting for their lives, she pled for illness to be stripped of all its connotations and be seen simply for what it is—a malfunctioning of the physical body.

Larry Dossey (1991, 19) terms Sontag’s view a “hopeless ideal” and points out its flaws: “We may tell ourselves that our illness is nothing more than an accidental, purposeless, random event, that it is simply a matter of our atoms and molecules just being themselves. But this denial of meaning is meaning in disguise: It can assure us, for example, right or wrong, that the illness was not our fault, that we were not responsible for it, that it ‘just happened’—which can be a great consolation. Thus, negative meaning is extremely meaningful.”

Why Her, Why Now, the title of Lon Elmer’s memoir of caring for a wife with cancer, poses the age-old question. As Job’s comforters looked to religious lore for an answer, family caregivers turn to their physicians. Yet even when medical diagnoses can be linked to a single cause—muscular dystrophy to a genetic defect, AIDS to infection with a virus—there is no telling why the gene has passed to one child in a family and not another, why one person becomes infected with HIV after a single contact and another remains virus-free after several exposures. And for most diseases there are multiple causes. Genetic predisposition, environmental influences, life choices—all of the above probably interacting in some yet-to-be-discovered way. In the absence of certainty, there is ample room for metaphors to take root.

As each family comes to its own understanding of what is responsible for the fate that has befallen them, they draw upon a larger cultural understanding of illness, what Shenk calls “the flavor of the name.” Some medical diagnoses have come to be seen as “no fault.” Parents may agonize over unknowingly passing on a defective gene to a child, but no one holds them responsible. Some medical diagnoses allow for partial blame. The fact that brain anomalies or chemical imbalances have been found in people suffering from mental illness has not quite taken their families off the hook. Then there are diagnoses that one has acquired on one’s own, such as chemical dependence: whether it is seen as medical disease or moral weakness, hereditary trait or character flaw, belief in free will allows for some degree of personal responsibility to be assumed.

Little has changed since Sontag illuminated the metaphoric uses of illness. If anything, the rhetoric has intensified. Cancer and AIDS continue to resonate with nonmedical meanings. And increasingly we subscribe to the notion of a “war” on disease. The disease is seen as an alien force that is trying to take over the healthy body: patients, physicians, and researchers alike are engaged in battle in which the goal is eradication of the enemy. We wince to remember that once it was quite common to speak of “the deaf and dumb” or “idiot children.” We are careful now to use vocabulary that separates individuals from the conditions that afflict them. By speaking of “people with disabilities” rather than “the disabled” we affirm the primacy of individuals and the areas of their personalities that are untouched by illness. Such a semantic restructuring is tacit recognition that the war on a health-related problem can, despite the best of intentions, become a war on the person who has it. It is also a recognition that health problems may feel very different from the inside than they look from the outside.

Arthur Kleinman (1988) differentiates between the “disease” as recognized by the physician and the “illness” as experienced by the patient, in this way illustrating that it is the meanings attached to the situation rather than the situation itself that determine how patients and caregivers will respond. Kleinman believes that although the illness experience is always culturally shaped, “expectations about how to behave when ill also differ owing to our unique individual biographies. So we can also say of illness experience that it is always distinctive” (5). Sharing this perspective is Harold Brody (1987, 5), who characterizes the histories of his patients as “sickness stories,” observing that “suffering is produced, and alleviated, primarily by the meaning that one attributes to one’s experience.”

James Buchanan (1989) does not look to cultural expectations or individual life histories to uncover the meanings of disease. He believes that meanings emerge from the body itself, arguing that “each disease has a characteristic mark which distinguishes it from each and every other disease. Patients can actually feel, experience, and sense this signature of their disease without being able to give adequate explanations or reasons for possessing such intelligence” (1).

Virtually all of the literary, philosophical, and medical theorizing on the meaning of illness focuses on the patient. There is little recognition of the impact that the social construction of disease has on family members. The memoirs I’ve surveyed suggest that there is as much metaphoric resonance in the lives of family members as in those of patients. And moreover, the meanings that family members ascribe to the illness experience often differ from those of the patient.

Jerome Bruner (2002) believes that “narrative in all its forms is a dialectic between what was expected and what came to pass. For there to be a story, something unforeseen must happen. Story is enormously sensitive to whatever challenges our conception of the canonical” (p. 15).¹ Although authors differ in where they begin their story, they all write of the time that separated before (when family life went on as it always had) and after (when awareness of the problem is first felt). Even when the patient is advanced in years, even when a physician might consider the situation far from rare, family members are initially surprised.

Perhaps this is why so many authors take time to get mobilized—initially denying the severity of the problem or expecting it to go away on its own. When the reality is finally recognized, they begin the search for answers. Shared plot lines, locale, and characters reflect a commonality that is discernible through a welter of flashbacks and digressions. They are introduced to a plethora of new people, institutions, and terminology. They come home with all the conflicting and troubling information and try to make sense of it. The body and mind of the patient may act and react in unaccustomed ways. Family members are uncertain what of past life can remain unchanged and what will be irrevocably altered.

Then the settling in—achievement of a new equilibrium and finding new ways of coping. This period may go on for days, months, years, or decades. The roller coaster analogy is frequently invoked. The ups and downs of the journey are described in detail—particularly the difficulty of making decisions in the face of conflicting medical opinions and a set of care options that is less than ideal. What course of action should be taken? Is the patient cognitively and emotionally capable of deciding for himself? And if (as is often the case) the patient is permanently or temporarily unable to understand his choices, how much risk is the family member willing to assume? There may be plateaus when everything seems under control, but these are invariably short-lived. Authors find, discard, re-find sources of concrete aid and emotional support. They keep on keeping on.

Although there are many positive endings—successful treatments for a range of physical and mental diseases are, thankfully, more prevalent every year—memoirs often end with the death of the patient (sudden or lingering, painful or peaceful), mourning, and the effort to find meaning in the experience—through its ordering and telling in memoir.

If the family-care narrative were a play, a minimum of sets would be needed. The patient’s home—altered from its usual aspect by new uses for familiar objects (the coffee table covered by a tray of medicines) and the intrusion of alien objects (the hospital bed, the wheelchair, the rehabilitation devices). The hospital with its initialed fright-chambers—the ER, the OR, the ICU. And The Waiting Room, where the minutes feel like hours as family members wait—for those who come and go, for what will happen next. Waiting rooms—whether in medical or rehabilitation centers—are the caregiver’s natural habitat. Then there are the offices—offices that look like offices and offices in disguise: the living room for group meetings, the workplace for job training, the classroom for special needs—“congregate” settings where specially equipped vehicles take patients to socialization and training. Rooms redolent of the emotions lived within their walls.

The characters in the caregiver’s narrative are divided between those who are paid to care (health care and social service providers of varying ranks and responsibilities) and those who aren’t (family, friends, colleagues, neighbors).²

Many of the memoirs describe caring situations that require close and constant interaction with physicians: testing, hospitalizations, and high-tech interventions form the backdrop of these stories. (Cancer and HIV/AIDS are two of these situations.) But many more describe a care situation in which interaction with physicians is limited to initial diagnosis, monitoring, and crisis situations. (Chronic diseases, developmental disabilities, and Alzheimer’s Disease among them.) Nevertheless, physicians figure prominently in stories of family care; their importance is less related to the frequency of their appearance than to its significance.

Some authors draw verbal portraits—often caricatures—of the doctors they encountered. Others ponder the dynamics of the relationship they have with them. But all share the same wish: to have their loved ones and themselves “seen” in all their human complexity; to be recognized as individuals rather than forgettable names on a medical chart. In the rare instances when this wish is fulfilled, authors describe the circumstances at length. Overtly songs of acknowledgment and homage, they bear a subtext of pride at being selected for a busy doctor’s special consideration. The most notable men in their field drop everything to come to the care of John Gunther’s son. Hillary Johnson’s mother has a doctor who not only makes home visits but enjoys the family’s company so much he stays on to chat. Janice Burns and her husband share a doctor who becomes a personal friend.

More often, authors feel they have to fight for every moment of time they receive. Molly Haskell—whose husband was hospitalized for months rapidly deteriorating from a condition that had not yet been diagnosed—likens the situation to that of children trying to capture the attention of distracted parents: “Like children, we compensate for our powerlessness by being shrewd manipulators. Instinctively, we try to ferret out and play on a doctor’s vulnerability, present ourselves in a manner calculated to endear or, failing that, intimidate” (Love and Other Infectious Diseases, 29).

Another word for what Haskell sees as “manipulation” is coping—and the authors bring all that they can muster to their interactions with doctors. They promote easier access by making friends with the office staff. They rearrange their lives and schedules to fit into the life and schedule of the doctor. They swallow their anger and rationalize that it is the expertise that matters. They find few doctors who are incompetent. Although some may make mistakes in diagnosis and treatment, patients and families are generally charitable in their appraisals: they accept that medicine is not an exact science and that much is unknown. Not so with the emotional and psychological aspects of the situation. Here the authors cite example after example of arrogance and insensitivity. They write of receiving hasty explanations in darkened rooms, being allowed only one minute to grasp the message of the X-ray or the medical diagnosis (skills which, more than one author notes, took the doctors years to master). Almost as often, they are subject to what Karen Brennan, the mother of a brain-injured daughter, called “more information than we could bear.” Jean Craig will never forget the doctor who didn’t think it worthwhile to identify the source of an infection that was troubling her husband because he was “terminal” and would die soon anyway. Alan Shapiro will never forget the doctor who chose the moment that family members had stepped out of the hospital room to pressure his sister—whose judgment was addled by pain killers—to make a crucial treatment decision. These cuts are deep and the scar outlasts the life of the patient.

There are other health care professionals who appear on the scene at the time of diagnosis and beyond: therapists of every stripe, special education teachers, nutritionists, case managers, social workers, nurses, physical therapists. Putting together a plan that coordinates the contributions of all these people and calibrating it to the changing needs of the patient is an ongoing task of those authors who assume primary responsibility for their family member’s daily functioning.

Authors are generally laudatory of the allied professionals they meet along the way and go to great lengths to praise the balance of personal warmth and skill they encounter. Thanks to them, family members learn a new language (“infant stim”), new skills (injecting needles), and a realistic set of norms against which to measure progress. Over and over, the authors sing the praises of good people met along their journey—people they would never have known if not for the situation that befell them. Their emotional support and practical help are particularly valuable when medical situations stabilize and patients are sent home to live with the consequences of impaired functioning. (The struggle to pay for these services out of pocket or the difficulty in achieving third-party reimbursement features prominently in many family-care narratives.)

Of particular note is the crucial role played by helpers of no specific training, helpers for whom there are no performance expectations, helpers who—nevertheless—employ head and heart in their caring. These indispensable aides are often mentioned by name and their contributions are not only “above and beyond” expectations but fill a void that no one else can. Once-a-week cleaning women give up their other “days” to become round-the-clock health care aides to their employers’ spouses and parents. Babysitters invent games to distract howling children from the pain of treatments. Decades of college students become “friends” to autistic and developmentally disabled adults and prove able to break through to them in ways that many of their family cannot.

Authors may be surprised at the turning away of the few people they thought they could depend upon. But there are others who come through in ways that they could never have anticipated. Neighbors who take care of the children after school. Friends who drop off heat-and-serve dinners. Church members who form a prayer circle. Even if their hours are few and their help is around the edges of the larger problem, the importance of their involvement grows in retrospect.

A curious fact: less than a handful of care situations account for the origin of over two-thirds of the memoirs. I wondered why. Why were there were so many memoirs on Alzheimer’s Disease and none on diabetes? Were there some care situations in which “the flavor of the name” was more compelling than others? Did each care situation have a story that marked it as different from all others, a story that would be the same no matter what the family relationship of patient and author?³

I decided to analyze four commonly narrated situations that occurred in every family relationship: cancer, HIV/AIDS, dementia, and mental illness/chemical dependence. (Developmental delays and autism also had many memoirs, but they were confined to the child-care relationship.)

There are many types of cancer, many dementia-producing illnesses. Mental illness and chemical dependence are frequent, but not inevitable, partners. HIV does not always progress to full-blown AIDS. I expected that intra-diagnostic variations would make a difference, that the age and gender of the patient would make a difference, that the medical, technological, and social changes would mark recent experiences as different from those that came earlier. What I found was that differences within diagnoses, increased treatment options, and changes in the public discourse rippled the surf...