Ethnic Minority Caregivers
A 1991 Alliance for Aging Research survey found that although many Americans want to live to be 100, most are afraid of losing their independence and ending up in a nursing home. Blacks were less optimistic about living longer yet were less fearful of being in a nursing home.
In fact, minority populations are aging the fastest. They also have the greatest financial stresses in providing that care. According to A Profile of Older Americans, 1993 (AARP, from U.S. Census Bureau), between 1990 and 2030 the older white population will grow by 92 percent, compared with 160 percent for non-Hispanic blacks, 693 percent for all Native Americans, and 555 percent for Hispanics. Minorities comprised 12 percent of the population in 1992; by 2010 the percentage will be one-fifth, and by 2040, it will be 31 percent.
For many minority caregivers, the problems of access and availability of proper medical care are compounded by finances: Poverty may mean improved access to some health services, no access to others. Many minorities lack health insurance and pension benefits, are low-income and suffer from poor health. Most health and insurance programs serve the mainstream and aren't culturally competent for ethnic minorities. Care providers may restrict access on the basis of citizenship, immigration status, or HMO membership. Minority families may not use the health-care system because of religious beliefs, the pressure of family responsibilities, institutional racism, lack of transportation, lost pay or other employment issues, or ignorance of how to enter the network. Moreover, access to care isn't always provided to a patient in his or her own language.
Asians and African Americans are more likely than whites to be caring for more than one person, and minority women are more likely to have greater stresses balancing low-paying jobs and caregiving.
Because of cultural values, tradition dictates that families care for their elders themselves . It is also a tradition born of harsh reality: Minorities historically have lacked access to good medical care, public support and the kinds of jobs that guarantee a secure old age. Because of discrimination, African Americans for example are quite reluctant to even consider nursing homes or mainstream institutions, even if they need them.
Yet often, blacks financially may have no option but to enter a nursing home on Medicaid. They are less likely than white people to have spouses to help with their care. Black caregivers also have less money than most white families to care for an elder, and cannot afford to hire help. They are also more likely to be sandwiched with child care: More than have have one or more children under 18 living at home, compared with 39 percent of white caregivers. Many black caregivers are single working mothers. Yet thirty-four percent of blacks over 65 live in multigenerational homes, compared with 18 percent of white people.
Key Caregiving Issues
What are the key issues that caregivers face today? In five years of on-line chats, in interviewing hundreds of caregivers and aging experts for my book, CAREGIVING: THE SPIRITUAL JOURNEY OF LOVE, LOSS, AND RENEWAL, in traveling the country and talking with my peers, these are the areas of greatest concern:
1) Affordable long-term health care at home.
Most people want to live out their days at home; most caregivers want to take care of their loved ones at home. Yet most insurance, and certainly Medicare, does not respect or reflect this desire to remain at home. Reimbursement systems are skewed toward expensive institutionalization rather than family care. In my own case, home care eventually cost $15,000 a month. Of course we had to move my parents to a nursing home, at $6,000 a month. I'm convinced that "transfer trauma" was partially responsible for their dying only a few weeks later. And all along I thought it was my fault for being ignorant; I didn't realize there were no safety nets out there for the middle class. Researchers at the Brookings Institution ("Caring for the Disabled Elderly: Who Will Pay?" 1988) estimate the number of elderly using paid home care services during the course of a year will rise from 4 million in 1988 to 6.4 million in 2018, an increase of 60 percent. How viable will reliance on family care be in the future, especially when surveys show that women Boomers are not planning well for their financial future?
2) Aging and caregiving as women's issues.
Because most caregivers are women, and most older people are also women, aging and caregiving are the new women's issues. In a 1998 National Alliance for Caregiving/Equitable survey of Boomer women caregivers, over half said they felt relatively unprepared for their own possible long-term care needs. Only 6 percent felt very well prepared. Those who experience financial burdens also suffered a lot of daily caregiver stress and needed more help with in-home assistance. Support for older women's issues has never been strong, but to ignore them now is to create a future fiasco in health care financing.
3) Respite care for the caregiver.
This means time away from duties, especially when the loved one needs 24-hour care, such as in lat er stages of Alzheimer's or any ravaging terminal illness. Caregivers say they either cannot afford someone to come in to watch their loved one even for a few hours, or they can't find anyone suitable, reliable, or affordable, especially in rural areas. Caregiver burnout is a greater cause for institutionalization of a loved one than an exacerbation of the medical condition. I personally lost my health and fell into a clinical depression for two years. I know many caregivers who fared much worse, including several who attempted suicide. When caregivers fall apart, then the care of their loved ones become a burden on the formal system. They need support.
4) Education and awareness of long-term care issues.
Too many caregivers don't self-identify and therefore don't realize there are supports and services available to assist them. Most families don't even know there is a professional network of aging services, even after crisis hits. Too often families are scrambling -- usually in a state of shock and not able to pay full attention -- to make decisions about medical care, housing, financial or legal planning when they really don't know what they're doing. We have not been trained to do this work. And socialization in an age- and death-denying culture rob us of our ability to function fully in a crisis.
5) Work/family issues.
A 1997 National Alliance for Caregiving and AARP survey estimated the national economic value of informal caregiving at $196 billion. That dwarfs national spending for formal home health care at $32 billion, and nursing home care at $83 billion. To balance work and family roles, many caregivers -- usually women -- reduce their hours or quit altogether to make the pieces fit. The Older Women's League estimates that women spend 11.5 years out of the labor force for child and elder care, which already puts them behind the eight-ball economically when they become elderly. And yet, a 1999 survey for Genesis ElderCare and the National Association of Female Executives revealed that only 19 percent of employers support caregivers "a great deal," despite an environment in which 95 percent of the professional women surveyed said they want defined elder care benefits.
The Future of Caregiving
No matter how much we fight aging, the end is inevitable. We won't all have a healthy death. Because birth rates are declining and the lifespan is increasing, there will be fewer family caregivers in 50 years than there are today. Who will care for us, and for the next generation? How much should government become involved? How can government and the private sector become partners in long-term care? And what will happen if we maintain the status quo?
In his quest to understand the ideas and beliefs that hold a society together, gerontologist Robert Kastenbaum has taken the study of aging into the realm of the spirit. His conclusions extend well beyond tradition, and illuminate the heart of caregiving. He proposes that aging is not about how we grow old, but what life means if our fate is to both age and die -- that how we define old age, and what it should be, is one of society's most critical tests of strength.
Ultimately, he believes, the well-being of the elderly -- and by extension, humanity itself -- can be protected only by appreciating the intimate interdependence of life and respect for the whole person. He writes: "Limitations and distortions in our core vision of what it means to be a person become starkly evident in old age. If to be an old person is to suffer abandonment, disappointment and humiliation, this is not a 'geriatric problem.' It is the disproof of our whole shaky pudding, technology, science, and all. If our old people are empty, our vision of life is empty."
This is the context in which I ask you to consider long-term care issues, health and social policy. It cannot be ignored if we are to build a system that truly responds to the needs of the aging in their own very special context, one in which death is not looked at as failure, and aging as a complex series of disorders to be avoided.
What will be the face of family caregiving in 50 years? Here are some possible scenarios:
- It will be a far more diverse face, as ethnic elders become a majority. If we do not put culturally relevant supports and services in place, the drain on federal programs -- if they are even still in effect -- will be staggering.
- It will be a much older face, as caregivers themselves move from an average age of 47 to the late 50s and 60s. Thirty-five percent of caregivers today are already over age 65, according to OWL; the percentage will be much higher and include people -- mostly women -- who are themselves in need of caregiving.
- It will be a face with smaller families, with fewer siblings to care for longer-living, aging parents. Who will care for these elderly?
- It will be a far more technologically advanced society, so that assistive devices and medical care will provide much greater support than they do today. But that will also mean that even more care will likely be given at home, and families will continue to need support there.
- It may be a world in which Social Security and Medicare are at risk or already bankrupt, depending on courses of action taken in the near future. Because there will be fewer workers paying into entitlement systems, the U.S. will need new, creative systems to pay for public programs. Where finances will come from to pay for expensive long-term care services might involve public/private partnerships and greater incentives for families to save toward these events. Long-term care insurance may be in its flowering.
- It will be a world in which people not only live much longer, but extend their working lives longer as well. They will have greater access to lifelong learning and post-retirement work, which will keep them active and vigorous. So we will see much healthier elders along with more disabled oldest-old people. But with a smaller pool of caregivers, there will need to be more community-based resources and support services.
- It be a world in which geriatrics and elder specialties are sought-after professions because of the rewards in focusing on dignity and compassion. Older women will no longer be dismissed in medical care with a Valium and a pat on the head, but listened to and supported in their special health issues.
- It will be a world in which housing is adapted to the disabled and to extended families, reducing the burden on nursing homes and other expensive institutions. Yet there will still be so many older people, that the risk of needing skilled nursing care at some point will remain high.
- Lastly, it will be a world in which old age is not a competition or something to be avoided. It will be embraced as wiser cultures view it: as an opportunity to share the wisdom of experience and guide younger generations to living more harmoniously and graciously.
Doomsayers would preach that the world has been overtaken by rage, greed, and resignation. I think that if you look into the back rooms of caregiving families, you will find the true nature of things as they are, beneath the veneer of social conditioning and confusion, stereotype and illusion. There you will find great kindness and devotion, a trust of life that surpasses doubt or pain. There you will find the highest expression of who we are.
If we close our hearts to suffering, we cannot open them to love. Every benevolent act counts. By surviving difficulties and holding onto goodness, caregivers inspire others to summon the power of the spirit. Humanity can emerge from violence and carelessness into an enlightened age of caring when the lessons of grief will be honored, exemplified by modern-day heroes who fulfill the age-old mandate: to give.