Four months after our father's death, Jasmine Mehta, the Trinidadian Indian woman who had been his primary paid caregiver for six years, had the following dream: Our father was sitting in his wheelchair in a beautiful white suit looking very gentlemanly. He told her that they were going on a trip; he had packed his bag, and she should get hers ready. When they got to the airport, he looked confused and said, "I don't understand. Don't you have a husband and children to take care of?" When she acknowledged that she did, he said, "Well, then, you're not going with me." So she returned home alone.
Jasmine told us that this dream helped her realize that a chapter of her life had closed and made her resolve to move on. Our response was very different. Her account of the dream crystalized some uncomfortable realizations about our own lives and what Jasmine's caring work meant to us. Although she tended a man who experienced the confusion of dementia, he continued to give orders; an important component of her job was preserving his dignity by deferring to his authority, even while protecting him from harm. A "gentleman," he was kind, considerate, and sometimes extraordinarily sensitive, but he also was comfortable receiving personal services, especially from women he considered his social inferiors. Jasmine felt so strongly bonded to him that she found it hard to let him go on his final trip alone until he released her. And her closeness to our father came at a terrible cost: Although her wages helped to support her family, she spent every weekday apart from her two young sons.
The last issue was especially troubling to us because it meant we were replicating a pattern we had vowed to repudiate. When we were growing up, our family relied on the household labor of an African-American woman. For approximately eight years, Martha Brown lived with us and did a large share of the child rearing and housework. (The names of both of the individuals employed by our family have been disguised.) She entered our lives in 1944, when our father was in the navy overseas, our mother was working for the government in Washington, D.C., our older sister was four, one of us was two, and the other was an infant. Martha's two sons were grade school age, and she left them with her mother in Virginia and came to live with us. When the war ended, our father returned to resume his career as a lawyer and we moved to a New York suburb. Martha came with us, although she was now hundreds of miles from her sons, and for as long as Martha lived with our family our mother never again worked outside the home. Until 1953 Martha continued to do the cleaning, some of the cooking, and a lot of the child care, especially after our two brothers were born, in 1949 and 1951.
We were taught from a young age to view this relationship as a form of class and race exploitation. Despite her domestic arrangement, our mother was a leftist. One story illustrates the gulf between her politics and the reality of her life, as well as her desperate, sometimes bizarre attempts to close that gulf. When our mother died, we wrote to Martha. She responded with a long letter in which she reminded us of a time during grade school when one of us had brought home an African-American girl who asked our mother whether Martha was our maid. Our mother had answered, "No, she's my cousin."
Our family's reliance on Martha Brown, our own deep attachment to her, and our mother's discomfort with the contradictions of her life helped to shape our research agendas when we became social scientists. Both separately and together, we had studied caregiving. Like other commentators in the field, we had adamantly insisted on a distinction between the household and medical care that people with mental and physical disabilities need and the personal services that the privileged routinely command. As adult daughters, however, we rapidly discovered how easily that distinction dissolves.
For more than a year, it remained unclear whether Jasmine was a domestic servant or an aide to the elderly. She originally had been hired by our mother during her five-month unsuccessful battle with lymphoma. She recruited Jasmine, who was then 22, not through medical channels but by asking friends' housekeepers if they had relatives who needed work.
Our mother's death left the two of us and our three siblings responsible for our father, who had suffered from a series of disabling strokes for several years. Convinced that he viewed his growing infirmities as a terrible embarrassment and a disgrace, the entire family had scrupulously ignored all evidence of frailty and pretended that he remained unchanged. When we timidly suggested that he might need care in our mother's absence, he strongly resisted, and we felt powerless to disagree. He was, however, accustomed to having people wait on him and readily acknowledged that because he never had learned to do any domestic chores (including operating a toaster), he was helpless without his wife. He therefore happily agreed to have Jasmine continue to prepare his meals, do his laundry, and clean the apartment.
Her responsibilities expanded enormously over the next six years as our father experienced medical crises of increasing severity. Not only did she begin to dress, bathe, and feed our father, but she became the case manager, providing information to, and negotiating among, the many different specialists involved in his medical care. When he started requiring night and weekend care, she helped locate new aides (using her extensive contacts within her immigrant community), interviewed those not known to her personally, and both trained and supervised the entire staff. Nevertheless, we continued to refer to her--at least in front of our father--as his housekeeper.
We justified our reliance on Jasmine in various ways. First, we couldn't provide the care ourselves. We had full-time jobs, our own health problems, and competing caregiving responsibilities. We lived far away. And we were confident our father would not have wanted us to be too closely involved. It was much better, we frequently asserted, that someone without a lifelong relationship with him render the most intimate kinds of assistance. Second, we were providing the kind of care everyone should have. And third, we paid Jasmine better and treated her with far greater respect than most other employers would have done.
Despite our rationalizations, we still had nagging doubts. Because Jasmine was a recent immigrant, our standard of comparison was very low. Moreover, the job had several undesirable features, such as monotony, isolation, and the constant need to confront aging and deterioration. And it took us a while to regularize her employment situation. Because it was not immediately clear whether we or our father should set rates, we simply continued our mother's arrangement. A year elapsed before we realized that we were the employers and should provide paid vacations, sick leaves, and annual raises. As our father's health deteriorated and Jasmine's responsibilities mushroomed, however, we gradually took charge and tried to revise her pay scale to reflect her expanded job description.
But our desire to be good employers clashed with other pressures. As we watched our father's savings dwindle away, we worried that he would outlive his ability to pay for help, especially as he began to require around-the-clock care. And we were very aware that Jasmine's pay steadily reduced the size of our inheritance. Jasmine's wages helped her and her husband buy a house, but they still faced serious, ongoing financial difficulties. Because Jasmine's husband stayed home during the day to care for the boys, he was restricted to night work, which paid poorly and was unstable and dangerous. Once, he was badly hurt in a mugging when he returned home at four in the morning, and afterward could not work for several months.
Our willingness to meet Jasmine's needs was constrained in other areas as well. The benefits we provided did not include health insurance, although she had the most stable employment in her family. When she expressed a desire to take the classes that would enable her to enroll in a community college, we were verbally encouraging. We were much less supportive, however, when she began to leave work early to get to class on time. When Jasmine asked if she could bring her newborn son to work with her, we initially believed that this would be an ideal arrangement because it would allow her to care for her own child and help us transcend the pattern set by our mother a generation before. But our father minded the baby's noise and the loss of Jasmine's singular focus on his needs, and we reluctantly asked her to make a different arrangement.
In retrospect, we realize how much self-interest underlay whatever attempts we made to accommodate Jasmine's wishes. We quickly began to feel enormously dependent on her. Not only did she respond to every medical emergency with great competence and calm, but she had a unique relationship with our father. It is possible that they became so close because they recognized in each other a similar mixture of pride, reserve, sensitivity, and sweetness. Although we might have been able to find someone else to attend to our father's basic physical needs, we never could have replaced her special personal characteristics.
But Jasmine's strong tie to our father was itself a source of unease. In our academic writing, we had been strongly influenced by the work of Mary Romero, who argues that demands for empathic care are a way of extracting "emotional labor" from domestic servants. The Chicana servants Romero interviewed tried to restrict their jobs to housecleaning and avoid such highly personalized activities as child or elder care, which undermined attempts to establish more businesslike relationships with employers. Jasmine, however, often asserted that her relationship with our father healed something in her and gave her a sense of personal fulfillment. She also discovered that she performed her job very well. The term "emotional labor" reminds us that effort and skill frequently are required. Caregivers must develop intimate knowledge of particular individuals and attend closely to their needs while applying what Arlie Russell Hochschild calls "feeling rules." The satisfaction Jasmine derived from this aspect of her job led her to revise her occupational choice. She originally had returned to school to pursue a career as a pharmacist. Her growing sense of her own abilities and the unanticipated pleasure she found in caring for someone encouraged her to get a degree in social work.
Jasmine not only forged an important relationship with our father, she also enabled us to sustain our own. We have noted that we believed that a major part of our mission was maintaining the illusion that nothing had changed. By relying on Jasmine (and other helpers), we avoided the most intimate forms of personal care such as bathing and dressing our father, which as his daughters we considered taboo. We also were insulated from witnessing the deterioration that might have disrupted both our image of him and his sense of himself as our father. What we tended to ignore was how difficult it was for Jasmine to provide the types of care we shunned. She, too, initially treated our father with enormous circumspection, watching over him without invading his privacy. We often observed their late-afternoon ritual during their first two years together. When he awoke from his nap, their interaction was limited to her silently handing him a glass with ice, which he took into another room. There he poured himself a drink and sat by himself for the hour and a half before she called him to dinner.
All this changed after his first lengthy hospitalization. While he was away, we asked Jasmine to take a health course, to prepare her for working as a home health aide for a very frail man. But we could offer no guidance about how to reconstitute their relationship, which now included participation in the private tasks of toileting and bathing. Although we valued the sensitivity with which she had protected our father's dignity and bolstered his sense of self, we simply assumed that certain chores were easier for her because she was less emotionally involved. Ours was the primary bond and thus the one that needed to be preserved.
The irony was that in some ways Jasmine became the closest person to him. As he became more and more disabled, we increasingly relied on her understanding of his needs. During his final hospitalization, she was able to offer a type of sympathy and reassurance that greatly surpassed our own. When a question arose about where our father should spend his last weeks, it became clear that Jasmine was more important than any of his children and that he had to remain where she could see him every day. We could reminisce and try to enact old roles, but she related to him on the basis of the life they shared together.
Six days before he died, he woke up, looked around, and, seeing Jasmine, asked where they were. She told him that they were in the hospital but soon would go back home, where they would plant flowers in the window boxes, just as they had every spring for six years. "What colors would you like?" she asked.
Although he had responded to very few other questions since entering the hospital the previous week, he slowly and thoughtfully replied, "Red, white, and blue."
"All right," she promised, "We'll go home and plant red, white, and blue flowers."
This was his last conversation.
As we reflect on our experiences almost three years after our father's death, we realize how easily the "ethic of care" trumps the "ethic of justice" (to use Carol Gilligan's phrases). As daughters, we fulfilled our caregiving responsibilities by putting our father's needs first and, indeed, by encouraging Jasmine to do the same. That, then, took precedence over fulfilling Jasmine's needs and our own commitment to a just society.
Our experiences also remind us that elder care is not the great equalizer. The headline of a New York Times article declares that "As Parents Age, the Personal Becomes the Political." Noting that congressional leaders of both parties recently have dealt with frail elderly parents, the author asserts that personal experiences help to explain politicians' new willingness to place long-term care on the public agenda. But rich and poor confront elder-care responsibilities in fundamentally different ways. Congressmen who can afford to buy their way out of their obligations may have little understanding of the serious, often calamitous costs caregiving can impose on less affluent families. For these families, the few reforms that have gained political support would do little. The Clinton administration, for example, recommended tax credits for family caregivers. Providing all frail elderly Americans with the services the privileged privately purchase would require a far greater outlay of government resources than policy makers currently are willing to contemplate.
We also gained a new awareness of the importance of acknowledging the helplessness and dependency that are part of all human life. Our father was hardly alone in his refusal to confront his growing impairments. In a society that glorifies independence, self-respect rests on autonomy and control, and the disabled are often viewed as lesser human beings. Because Jasmine had to render her caregiving activities invisible, she received far less appreciation than she deserved.
It is equally important to acknowledge what an enormous part of our long-term care system is provided outside the bounds of formal organizations. Although most commentators ignore the vast network of helpers recruited through ad hoc, informal arrangements, our own research suggests that disabled elderly people and their families rely disproportionately on this type of assistance.
Would regulation be a solution for some of the vagaries associated with this kind of care? It is possible that regulation can ensure at least minimum levels of safety for elderly clients, provide mechanisms for corrective action in cases of abuse and neglect, and increase the stability and reliability of workers. Regulation also could provide guidelines for workers about what to expect and ask for in terms of pay, benefits, and vacations.
But our experience suggests the need to wrestle with extremely complicated ethical issues before beginning to consider any form of government action. It also highlights the limits of our ability to rationalize caregiving activities. The close connection that developed between Jasmine and our father reminds us of the randomness of love and the idiosyncrasies of individual experience. Because paid as well as unpaid care frequently is embedded in personal relationships, many aspects of this endeavor defy government regulation and control.