Sick To Death > Chapter 4 > Caregivers as a Political Force

Sick To Death book cover This extract from the online edition of Sick to Death and Not Going to Take It Anymore! is used with permission.

Caregivers as a Political Force

The growing numbers of very sick, older people coming to the ends of their lives and the declining numbers of people available to provide direct care create a looming disproportion that presents both a critical challenge and a major opportunity. If very sick and disabled people cannot have competent and caring day-to-day personal assistance, then almost everything else we could have at that phase of life is also largely unobtainable. Without caregivers, nearly all of us, in our turn, will endure otherwise quite avoidable suffering.

Changes in the living conditions of very sick people sometimes ease their need for care. When the Social Security Administration started sending monthly checks directly to banks, many people who previously answered surveys by saying that they needed help with managing financial matters now found they could handle their finances on their own. As housing gradually becomes more adapted to suit people with disabilities, more people will be able to manage getting to the toilet from their wheelchairs; and as more areas have home delivery of groceries, more people will be able to manage to prepare food. These gains are likely to be limited, since many people have disabilities beyond those that these adaptations can circumvent and since the adaptations themselves can be too costly. The burgeoning numbers of people facing progressive chronic illnesses will still need care, so the focus will have to be upon adding to the supply of caregivers. Four approaches seem plausible:

The first approach, making more paid caregivers available, does have promise. Paid caregivers usually earn just above the minimum wage, which is well below the level necessary to support a family. The conditions of their work - at times in cramped apartments up many flights of stairs or in suburban homes far from public transportation - can be wearing; the job itself is difficult and often thankless; patients may be unable or unwilling to show appreciation. Often, friction arises as patients find the need for help embarrassing and frustrating and feel very isolated by being homebound or in a nursing home. And the caregiver's native language and culture often differ from the patient's. In addition, most working situations offer little chance for advancement, further training, or better working conditions.

The opportunities for improving this picture are obvious. Just extending employment benefits for health-care insurance and disability income support would enhance the likelihood that skilled caregivers will enter and stay in the field. Increasing wages and incorporating caregivers into larger health-care teams would create more appealing and honored positions (Callahan 2001). Well-considered training opportunities and career ladders would probably help too. Of course, these changes have costs, but so does the hospitalization or high-cost treatment they may allow a patient to avoid.

Unpaid family caregivers encounter additional challenges. For example, family caregivers contend with thoroughly unfamiliar situations and would benefit from improved training and support to learn essential caregiving skills (such as how to give a bed bath, set up oxygen, and so on; recall Carol Levine's saga, following chapter 1). These caregivers also need protection from severe financial burdens arising from lost current income and retirement savings. Paying for their services at a discounted rate and providing pension contributions are approaches used in some European countries (Merlis 2000). Providing protection against reduced retirement benefits via Social Security and pension arrangements would help. Family caregivers also need ways to pursue some of their personal life goals - through regular outside help or occasional respite care, for example.

It would undoubtedly help too if society valued family caregiving and respected the people who do this hard work. Since family caregivers are serving the community, that community should ensure that caregivers have jobs when they are ready to return to work, health and disability insurance throughout their time of service, the ability to save money for retirement, and approval and collegiality from their community. Family caregivers warrant the kind of respect that society accords to others who do good works as a service to the community, much as reservists in the National Guard have some employment guarantees and benefits. In our present circumstances, we have allowed it to be very hard to be a family caregiver - no training, pay, job security, insurance, pension, or even thanks from the community. At least the current situation presents many opportunities for improvement.

The public costs of supporting family caregivers may turn out to be a good investment in enhancing care and avoiding the costs of institutionalization. For example, I have estimated the likely annual cost of a statute to allow otherwise uninsured caregivers fifty-five to sixty-four years of age to buy into Medicare without paying extra for preexisting conditions. For less than $200 million per year, we would cover an especially vulnerable group of people who need health care themselves (and who often can't reenter the job market when direct caregiving ends because of their own existing health conditions). This kind of strategy would be a visible way to honor and encourage family caregiving.

The use of robotic machines and specially trained animals may seem unrealistic, or at least futuristic, but many chores might well be automated or carried out by companion animals. Computers with video teleconferencing capabilities can monitor the needs of frail elderly. Lifts that help move patients, telephones that respond to vocal signals, lights that turn on with movement, and alerting devices that monitor vital signs all aid in relieving some of the burden of home-care workers and in providing a sense of independence to patients (Mann 2001). Priorities for development of new devices might include better ways to reduce pressure and increase mobility and thereby prevent pressure ulcers, to move and transfer people, and to automate the supervision of people who cannot exercise judgment. Developing these possibilities is important, though neither machines nor service animals should displace human interaction and caring.

The following specific reforms would improve the availability and working conditions of caregivers:

Making caregiving more bearable, and possibly even rewarding, is clearly critical for any reforms to succeed, but another mission makes caregivers especially important: their potential political weight. A very sick person is hardly likely to become a political force. But the family and friends who struggle within the current care system are best able to see the problems and to engage in political activity, either while in the process of caregiving or later. Indeed, family members might even come to voice concerns in political terms in anticipation of caregiving, as the shortcomings of patient care and caregiver support become more widely known. Usually, family caregivers see their problems as intimate and unique. They are unaware that the dysfunctions are systematic, that they belong to a class of people who all have the same problems, and that better legislation, regulation, and social arrangements could lighten their burden. In this case, the personal is truly political, and caregivers could become an important force in the court of public opinion.

What would allow us to forge a group consciousness and political agenda for family caregivers? Here are some possibilities:

All reform faces substantial challenges from inertia, as well as special challenges from the specifics of a particular time and place. The shortage of potential caregivers provides both a powerful motivation and a daunting challenge for any future care arrangements. This predictable need and the problems in providing for it may well be the most powerful motivation for change. As Rosalynn Carter has said, "There are only four kinds of people in the world: those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who need caregiving" (Rosalynn Carter Institute for Human Development 2003). Recognizing this truth may make a broad cross section of citizens into a political force for reform, once people with each of these four perspectives on being a family caregiver realize that political action is essential to address our shared problems.