Good afternoon, Senators, and thank you especially Senator Breaux for inviting me here today to discuss the subject dearest to my heart: how we care for the most vulnerable in our society, and how that kind of compassionate attention can inform our nation as we enter a new millennium.
I was drifting blithely along in my tidy little life, as naive and immortal as the next fortysomething. Suddenly both my parents at age 70 were catastrophically ill, and my life was abruptly derailed. Everything that had been familiar vanished; what might come was terrifyingly uncertain. The initial severing came the instant my father informed me, at the end of my work day over aching distance, that my mother had Lou Gehrig’s disease, not arthritis. She also had a dementia of the Alzheimer’s type. His own life was already on the line after a fifth and final surgery to remove a viciously recurring rare form of cancer.
In that moment I became a family caregiver, a term I didn’t even hear until six months after both my parents died, five weeks apart in a nursing home, so far from the lives of dignity and service they had known. They felt humiliated by diseases they had no control over — and especially by a long-term care delivery system that saw them only as a burden rather than as whole human beings worthy of dignity and value.
The Baby Boomers
Although I felt isolated and helpless, I was only one of 22.4 million family caregivers in the United States today, and one of 76 million Baby Boomers — those born between 1946 and 1964 and whose lives are about to change drastically as we enter the mid-life wave. I turned 50 last Christmas, a watershed event that is as symbolic as it is real. It marks the turning of my life from a passenger to an advocate for long-term care issues. I write extensively for national magazines and newspapers, speak around the country, and have written a new book called CAREGIVING: THE SPIRITUAL JOURNEY OF LOVE, LOSS, AND RENEWAL (John Wiley & Sons, 1999) to help bring awareness to an unprecedented, historic wave that threatens to engulf us if we do not wake up now to the demographics and their implications.
I belong to the largest generation in U.S. history, but it not our size that matters: It is the mindset with which we have transformed every life passage to date. We were coddled by parents who knew hunger and poverty through the Depression and World War II, and by grandparents who hoped that two world wars would put an end to violence and tribalism.
We were the “me” generation, the youth generation, and the protest generation. We grew up with television and grow older with computers — and reruns. We had a profound impact on education, then on the workforce. We spent our youth as hippies preaching peace and love. We are the first generation to address the importance of respecting ethnic diversity and nontraditional family structures. We are the first generation to have two working parents and especially working mothers. We put off marriage and having families, and then had fewer children. We put child care on the map as a work and family issue, and are beginning to do so with elder care. We fought for civil rights and looked to nonviolent ways of negotiating peace. We brought the rights of women to the forefront of the social order, and asked that equality extend to everyone regardless of race, religion, and gender. We also became Perrier-swigging yuppies and came to exemplify the worst in greed and ambition in business, peaking early and wondering, “Is that all there is?”
We who pioneered the sexual revolution and a renaissance in spiritual seeking are now bringing the aging revolution — not, mind you, the “anti-aging” movement, but a wholesale turnaround in how we perceive and respect aging and end-of-life issues. We have always been opinionated and self-involved and we will remain so as we age. Now we will bring these scary issues out of the closet.
Baby Boomers are coming of age; we are becoming the elders of the tribe. The times they are a-changin’. There is a new mid-life crisis, and it has to do with personal and social values. All of the Boomers’ youthful characteristics dovetail into the new demographics. Because of longer lifespans and falling fertility rates, American society is graying. The Boomer bulge will swell the ranks of those over 65 to some 60 million in the next 30 years — a fifth of the entire population. The era of the United States as a youth-focused nation is ending, and it will not come again in our lifetime. Soon there will be more grandparents than grandchildren. Aging is no longer just about financial and budgetary considerations, however; the social dimension of an aging society demands an equal hearing.
We are becoming responsible, not just for ourselves but for future generations as well. Individualism is giving way to a cry for community. Baby Boomers will change the face of aging and retirement, consumerism and leisure, politics and media, marketing and housing. We are better educated, healthier, more vocal than any generation to date. We will demand the good older life, but this time, with an eye to the greater good of society as a whole. We are bringing the idealism of the flower children into action today, with an eye to service and righting the wrongs of inequality. We are attempting to move society toward compassion and tolerance and an acceptance of the stages and cycles of life. The Boomers are coming, and we are coming to change the social order to make this rite of passage inclusive, supportive, and relevant.
Family Caregiving
My parents left a double-edged legacy: awareness of both the sorrow and the generosity of the human heart. Nowhere perhaps is this paradox more widely played out than on the daily stage of family caregiving, where the unsuspecting can find themselves on a chaotic journey in which the only certainty is the demise of their loved one. These caregivers are on a path seemingly without end, subjected to the stresses and guilts of watching another’s pain without being able to erase it, witnessing a loved one’s dying without being able to prevent it. They quietly sacrifice personal agendas to look after those in need, often sandwiched between childcare and career, and usually without advance planning. They live a world apart from everyday reality and wonder if they will ever be normal again. They have one goal: to maintain the dignity and well-being of their loved one until the end. The burden is great, the information insufficient, the doubt overpowering. Yet these loyal souls — many of whom do not recognize themselves as caregivers — work largely without professional help, feeling they can and must do everything alone. There is no question about taking on this role: They do so compelled not only by the dictates of society, but also the mandates of the heart.
Along with global graying, we have entered what geriatric experts call the “third age,” the extension of healthy middle age well into what used to be known as the sunset years. Until the Industrial Revolution, only one in 10 could expect to live to 65. Today most will reach that age — and well beyond. Though most elderly are healthier than ever, it is a time when the ravages of oldest age require the most support services. The rapid growth in the numbers of elderly people who need nursing home care or care at home will be a significant issue in the next century. I thank you for addressing these issues today.
In the United States, the number of family caregivers has exploded by 300 percent in only nine years, reaching into a quarter of all households because most long-term needs of the chronically ill are not skilled nursing but help with daily activities such as grooming or getting out of bed. We become caregivers by choice, default, and obligation; we assume the role because the alternatives are unacceptable. In a culture defined by short attention spans and sound bites, family caregiving demands investment for the long-term, often an abrogation of dreams and a wholesale reconstruction of the future, one slow brick at a time.
Caregiving — the act of providing assistance to someone ill or frail — is emerging from the modest recesses of everyday life into one of the most catalytic challenges any of us will face. Even when families have made preparations for possible disability, it is the unanticipated events — a fall, a stroke, a creeping inability to maintain a checkbook — that define the turning point from a life so familiar to one filled with incalculable unknowns.
It is estimated that a quarter of all North Americans over 65, and half over 85, cannot get through the day without some assistance like bathing or transportation. The typical informal, unpaid family caregiver is an employed 46-year-old woman who spends another 18 hours a week caring for her mother. The typical recipient is a 77-year-old woman who lives nearby but alone and has at least one chronic condition, such as heart disease or osteoporosis. Eighty-nine percent of all women over age 18 will be caregivers either of children or parents, or both; nearly 90 percent will care for a disabled adult. Three-quarters of caregivers are women, many at mid-life or in retirement themselves, with their own families and health problems to attend to. Most give care seven days a week, many as much as 10 or more hours a day; at least a third work full or part time, and more than half also care for children under age 17. Despite myths to the contrary, families do not abandon their loved ones to institutions when they become disabled or terminally ill. Most are cared for at home, in their communities, at all costs.
Family caregiving is an emotional roller coaster that can leave a person exhausted, bewildered, dislodged, wondering how she or he can feel so helpless in a period so supposedly grown-up. Each stage of an illness presents a succession of hurdles, stretching complacency and hearts more than it seems possible to bear. Yet caregivers abide, because it is human instinct to do so.
America prides itself on rugged individualism, but in caregiving that sense of “independence” can become a handicap. Because most people are reluctant to ask for help or admit they may be in trouble, caregivers can face obstacles merely sorting out what the problems are. Often there is only a sense of something amiss: a hesitant phrase, increased isolation. Adult children suddenly must pry out of secretive or distrustful parents the most private of details about estate matters; spouses who have never made decisions now must make all of them. Parents may have divorced or been unloving; siblings or relatives may have vanished at the first spot of trouble. For young adults who couldn’t wait to leave the parental yoke, time and distance now complicate the best intentions, hide the worst scenarios. Few people want to think about death, let alone plan for it. The lucky ones discover that their parents or spouses have already seen to legal documents, health insurance, and funeral arrangements. For others, the discovery phase can be a long ride into purgatory.
Lack of knowledge about how to manage in a fragmented health care delivery system kicks many families into disarray. One caregiver told me there isn’t really a long-term care “system” because you have to pull all the parts together yourself. These services must be uncovered and paid for through an overlapping array of providers with different eligibility requirements. An easy solution may become complicated because services are approved based not on need but on funding availability. Because there is no single entry point into the maze of programs — medical, housing, social, legal, financial problems can all be doorways into caregiving — families may feel pressured to accept the most expedient or high-profile option, such as a nursing home, when the actual solution may be sound fiscal management, proper hydration and nutrition, or home modifications to accommodate a creeping disability.
There are 100 million Americans with chronic illness today. We can expect the number of people with age-related disabilities will vastly increase, particularly because the fastest-growing segment of the older population is those over 85. By 2050, according to the U.S. Census Bureau, that group will make up nearly a quarter of the elderly population — the group considered most disabled and in need of long-term care services. Almost 6 million elders receive home health care services today, five times as many as those in nursing homes — a number likely to double in the next 30 years as Boomers reach their golden years en masse.
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This is the text from a speech at Sen. John Breaux
