While the media has become infatuated with the glories of successful aging—the vigorous grandfather scuba-diving with his grandson and the sixty-something couple bicycling on some idyllic tree-lined trail—there is another, less visible, reality out there.

Many older people, despite careful attention to exercise and diet, become mentally and physically disabled and, when that happens, more than almost anything else, they wish to stay home for care. Connoting family, security, comfort, treasured memories, and even independence, home means that one is not fully sick even if one needs assistance with many aspects of daily living.

But many older care receivers also experience moral confusion. They do not want to burden their children and will often ask for less help than they need, even at their own peril. With paid caregivers, many feel uneasy with the enforced intimacy and, if they are recipients of public assistance, with the presence of so many strangers in their home.

Older people needing help with day-to-day activities rely heavily on their families, most notably their spouses, daughters, and daughters-in-law for much of that help. Providing 80% of all care, "informal" caregivers either manage alone or get some help from paid caregivers. Such caregiving is exhausting and hard, especially for those women who can neither afford to hire help nor qualify for public benefits.

It can also be weighted with value conflicts. Younger caregivers struggle with divided loyalties, with inequitable divisions of labor among siblings, and perhaps the history of a poor relationship with the very parent they must care for. One caregiver simply said, "He was terrible to me when I was a child but if I don't do it, who will?" Just as often, caregivers view these responsibilities as a blessing—the last gift to the parent who raised them.

Conflict for Agencies
Paid providers may work directly for clients or for private agencies who contract with the state to serve low income clients. Called "bureaucracies of care" by political scientist Deborah Stone, home care agencies have many other concerns, particularly financial ones, that threaten the raison d'etre of their existence—delivering high quality, necessary services to clients. Society fails to provide either the resources or the commitment to meet more than minimal needs.

Most commentators use the term home care generically to include both medical and nonmedical services; in practice, while the services may seem to overlap the funding is quite distinct. Medicare pays only for medically related care. Medicaid or state financed programs, both means-tested and therefore available only to people with low incomes, finances some non-medical home care such as bathing, meal preparation, dressing, and toileting—the services that people with chronic conditions like Alzheimer's disease require.

Today, in the United States, more than 500,000 home care workers, almost all women, mostly poor, and predominantly African-American or immigrants, take care of countless clients. With few exceptions, they earn the minimum wage and receive no benefits, though unionization and a worker shortage is changing this situation in some areas. Because these women rarely control their work schedules or the clients they serve, it is often difficult for clients and care workers to form the relationships central to a successful home care experience.

Paid home care will become more important in the years ahead. The population is aging, and chronic illness is a familiar feature of late age; families are more mobile and so there may be no child near enough to provide regular care. Corporations are also developing "eldercare" programs to help employees care for aging parents and to reduce absenteeism.

The Lived Experience
For the past eighteen months, the Park Ridge Center has been engaged in a Retirement Research Foundation funded project called Home and Community-Based Services for Elders: An Ethics Resource for Providers. The project has sought stories that describe the moral terrain frontline caregivers, care receivers, case managers, and supervisors occupy. These narratives provide a path to perceiving and understanding the moral complexities that infuse home care.

From such narratives, those outside the immediate situation can see how clients and workers do the moral work necesary to make the care situation mutually respectful and satisfying. They can also show the obverse. Narratives reveal how they do (or do not) develop relationships that lead to common moral understandings about decency, dignity, and mutual respect as well as what happens when those relationships fail to develop. These stories demonstrate the threats to those understandings brought about by deepening dementia, physical decline, and family conflict, and the solutions that worker and client often develop to respond to less-than-ideal circumstances. Such narratives not only recount ethical conflict but employ everyday examples that support or impede a client's dignity and a worker's self-respect.

These narratives expand our vision, enlarge our moral perceptions, and suggest ways that care might improve. They tell us how tough it is when workers are unable to sit and talk for a little while so that they can learn what it means to respect and care for this individual, or hold the hand of a lonely and frightened client. These concerns are moral burdens because they hinder caregivers from acting in morally praiseworthy ways. Yet these burdens remain invisible unless caregivers talk about them.

The Ethical in the Everyday
These everyday ethical problems do not negate the importance of dilemmas about client safety or elder abuse; they do not eliminate dangerous neighborhoods or physical threats to clients and caregivers. They do, however, expand the purview of ethics and ask us to think more seriously about the ways in which ethics and practice come together. The voices of caregiver and care receiver, when multiplied many times, give names, faces, and meanings to this essential service.

Caregivers receive little moral praise in the outside world. As historian Emily Abel noted, a society that values independence, distances itself from age, sickness, and suffering rarely gives moral kudos to ordinary women who feed, bathe, clothe, and hold the hands of the sick. Yet, caregivers speak with deep pride: "It takes a certain kind of person to do this work, and I'm that kind of person" and practical wisdom: "I know my mother is shamed when it is time for her bath, so we have special jokes we tell at that time to make it less embarrassing."

As Congress threatens to reduce Medicaid expenditures over the next five years, including a $14 billion reduction in home care expenditures, moral problems will multiply. Hours will be reduced and workers paid even less. Invisibility makes it easier not to think about the effects of budget cuts, not to advocate for improved working conditions and salaries, and not to think about what it means to people with serious mental or physical disabilities.

To make each encounter with clients a moral act, good caregivers learn to listen, to observe, to interpret, and to understand what clients need and what actions mean. Ideally, care receivers also attend to their caregivers so that both find moral sustenance by acting responsibly.

Martha Holstein is a research associate at the Park Ridge Center.