The Personal Becomes Political

At the start of the 20th century, three million Americans were over the age of 65. A hundred years later—thanks to advances in medical science, nutrition and workplace safety—the figure has soared to 35 million. This trend is expected to continue and demographers estimate that by 2030 the U.S. will be home to 70 million elderly adults; in fact, the fastest growing population cohort is likely to be comprised of those 85 and older. While many will be healthy, vital and active, others will require a plethora of medical and social services. Not surprisingly, how these services are delivered and paid for, and by whom, has risen to the top of the nation’s policymaking agenda.

Indeed, caregiving got a significant boost in 1999 when President Clinton unveiled a five-year, $121 million proposal for a National Family Caregiver Support Program in his State of the Union address. Although the proposal was stymied by Congress, it cast a spotlight on long-term care issues and prompted a host of conferences, speak-outs and articles about the needs of both care recipients and care givers, most of whom provide in-home assistance to a frail or infirm spouse, parent or other relative. For the first time, a program of tax credits, expanded social services and workplace education landed on the national agenda.

“More than 200 Congress members are baby boomers who see that support for long-term caregivers is an absolute essential reality in the lives of most people,” says Jeanette Takamura, Assistant Secretary of the Administration on Aging. “If we do not support caregivers, we’re going to need to find another way to care for elderly people. We know that people prefer informal care at home. But caregivers who are depleted energy-wise, work-wise, or money-wise present an unfortunate scenario. We are looking at programs and supports to keep whole families well.”

These programs can take a variety of forms, and eldercare advocates approach caregiving from numerous directions. Some have set up model programs at the state and local levels to provide referrals, counseling and concrete services. Others advocate large-scale policy changes—Medicaid, Medicare and nursing home reform—that will have an impact on large numbers of people. Still others are mired in debates about how to undo society’s preoccupation with youth and eradicate the ageism that makes senior citizens—even the able-bodied and self-sufficient—feel invisible. While specific communities, among them Jews, Holocaust survivors, immigrants, people of color and women, have come together to focus on the particular needs of their constituencies, by and large all agree that we are barreling toward a care-giving crisis of unprecedented proportions.

According to “Rough Crossings: Family Caregivers’ Odysseys Through the Health Care System,” a 1998 report published by the New York-based United Hospital Fund, a research and philanthropic group, “Each year more than 60 million Americans are admitted to or discharged from health care facilities. For institutions, these entries and departures are routine processes; for patients and their families, they are often fraught with anxiety and fear.”

The caregivers interviewed for “Rough Crossings” offered poignant testimony about their assumed roles. One woman described being unprepared for her husband’s fury. “‘He was full of anger and insults. It was part of the illness but I didn’t know it,'” she said. When a well-meaning friend advised her to be “more understanding,” she retorted, “‘How can you be understanding when you don’t understand?'” The husband of a woman who underwent leg surgery told interviewers that when his wife was discharged from the hospital he expected her to be “well enough to go home.” During his first night with her, he woke up to find the bed wet and her bandages oozing. ‘”I didn’t know what to do,’ he recalled, ‘who to call or who to get angry at.'”

These caregivers are not anomalies. The United Hospital Fund’s Families and Health Care Project estimates that at least 25 million Americans—one in eight adults—are currently providing ongoing, in-home care to a loved one. Few were knowledgeable about medical issues before they took on this role; most learned everything by trial and error, from how to clean a feeding tube to how to change a bandage. On average, caregivers—at least three-quarters of whom are women—provide 18 hours of care per week for a period of four-and-a-half years; their work represents unpaid labor that the Fund estimates is worth approximately $200 billion per year. In addition, nearly half of the nation’s caregivers have children under 18 living at home and the lion’s share, two-thirds, hold jobs while caring for an elderly family member.

The needs of these often heroic caregivers are complex and by no means monolithic, but advocates believe that federal-level reforms will go a long way in making it easier for caregivers to care. Most would start by altering the scope and purpose of Medicare. “Medicare was started in 1965 as a way to provide acute care services to elderly and disabled people,” says Carol Levine, director of the Families and Health Care Project of the United Hospital Fund. “As the population has aged and as chronic disease has become a more significant part of health care, Medicare no longer fits the bill. It was not designed to be for chronic care. The only people who can get Medicare to pay for homecare are those defined as homebound. People who have cancer, who maintain a life and go out, even if only to the doctor’s office, are not considered homebound even if they are terminal. This works against the well-being of the patient.”

So does Medicare’s policy on prescription drugs. According to Diana Aviv, the D.C.-based associate vice president for Public Policy of United Jewish Communities, an organization created by the merger of United Israel Appeal, the Council of Jewish Federations and United Jewish Appeal, Medicare only pays for prescription drugs if they are prescribed while a person is receiving in-patient care. “There’s a tremendous need to expand coverage for people who are not hospitalized,” she says. “Most treatments now involve shorter hospital stays because of advances in prescription drugs. Well, if the drugs aren’t covered, what good does that do older people?”

Marcia Holman, director of Care Management for the Pelican Health Corp., a for-profit care management agency established by the Jewish Board of Family and Children’s Services in New York, sees the fragmented manner in which services are delivered as another area ripe for reform. “We have programs and policies that vary from state to state and leave big gaps in availability and access. Older people believe that if they have Medicare and supplemental long term care insurance they’re okay. But many supplemental policies only provide homecare if a person is unable to perform the functions of daily living, things like getting dressed, toileting, moving from one place to another, preparing meals and bathing. This means that an insulin-dependent diabetic who can perform the skills of daily living but cannot see well enough to self-inject will probably not be eligible for homecare.”

Holman’s outrage about America’s idiosyncratic provision of care is palpable. “We need to acknowledge that what we have now is a dysfunctional array of services that are not coordinated or easy to obtain. Even without major policy changes it would be nice if within the 50 states the definition of skilled nursing or assisted living was uniform. We could also provide people with information about their right to a health care proxy if they can no longer make their own decisions. We could educate people about Medicare and supplemental insurance and what these policies actually pay for. We could talk about retirement before people are ready to retire. Most families are so overwhelmed they put off facing what they don’t have to. They are already doing too much, but we still expect family caregivers to step in and navigate a hodge-podge of programs when the need arises.”

Attorney Peter J. Strauss, a nationally recognized elder law specialist, agrees that people need coordinated services. In addition, he favors expanding Medicare to cover long term and chronic care. “I would add a Part D to Medicare,” he says. “Everyone says this is not doable, that we cannot add $140 billion to the national budget, but if we increased the payroll tax by about $220 per year, with an employer match, we’d raise more than enough money. There is no alternative except a national system of long term and chronic care. Yes, it will be expensive, but what else are we spending money on?”

What, indeed? Long term care costs an average of $130 per day, an amount beyond the reach of many Americans. Social Security payments to retirees average $745 per month, with a maximum benefit of $1326. Women—the majority of care givers and care recipients because they live longer—receive an average allocation of $611 based on lifetime earnings that are typically less than men’s. Furthermore, time spent outside the paid labor force raising children or caring for elderly or disabled family members is not counted in benefit calculations. Worse, only 16% of retired women receive pensions and once again, those who do are shortchanged. The median female pension totals $2682 per year; mens’ median is $5731. Predictably, poverty among women over the age of 65 is twice as severe as it is for men their age. And the situation is unlikely to improve. A 1998 study by Heinz Family Philanthropies found that 41% of women between the ages of 25 and 55 fear living in poverty as they age because their salaries do not allow them to adequately save for retirement.

Is it any wonder that these women are called the “sandwich generation,” wedged between their jobs and the child and elder care responsibilities that fall to them? “Despite talk about more egalitarian marriages and stay-at-home fathers, I don’t see much evidence of caregiving becoming associated with men,” says Rose Dobrof, Brookdale professor of gerontology at the Hunter College School of Social Work in New York and a nationally renown expert on aging. “It’s a strange thing. Maybe because women know in their guts that they are going to be recipients of care, they become caregivers as a way of shoring up brownie points.”

“Women who were touched by or involved in the feminist movement have a greater willingness to talk about problems and expect the system to meet at least some of their needs,” adds Carol Levine. “But there is still reticence about speaking out, fear that you are being disloyal to family members if you ask for help. Gender is one of the reasons caregiving has received so little attention. Legislatures are dominated by men and for the most part they are not as involved in caregiving. Women need to make alliances with male caregivers and use their power to make this everybody’s issue.”

Levine acknowledges that the anti-feminist backlash of the past 20 years may make this easier said than done. “At the same time as people are speaking out about how hard it is to be a family caregiver, there is a counter theme being promoted,” she continues, “that the rewards of caregiving are so enormous, that this is such a profoundly moving experience, that nothing else compares. It’s a romanticization of caregiving, an indirect way of saying to women that they’re better off going back to this role because of the spiritual rewards. It feeds into a backlash to return women to the home and is something to watch.”

Unfortunately, caregivers rarely have time to ponder political imperatives, grappling instead with the day-to-day realities of work, family obligations and personal needs. “Helping families carry the financial burden of care is by far the most important issue,” says Rose Dobrof, “but families also need support services and respite care. Caregivers need to know that there is a phone call they can make to get information or have someone listen. Groups are essential. There is magic in getting people who are in the same boat together. It is so supportive, transformative, to be in a room and let wives speak about hating their dependent husbands or children speak about hating their dependent parents.” And then there is respite care, something experts consider the most important form of caregiver assistance. State, city and privately-funded respite programs across the country offer a variety of services, from adult day care that affords caregivers a modicum of leisure, to holiday or weekend retreats, to in-home nursing or therapeutic services. The Hebrew Home for the Aged at Riverdale, in the Bronx, began the nation’s first overnight respite program in June 1998. “We started the Elderserve at Night program when we realized that if caregivers could get a good night’s sleep they could probably continue caring for the person at home,” says Ann Marie Levine, Associate Administrator of Adult Day Services at the Home. “Many [elderly] people suffer from sundowning syndrome, a condition that leads them to become confused and agitated when day turns into night. These patients, suffering from dementia, need activities. We do massage, aroma therapy and Raiki to help clients become calmer. Some are up all night, some sleep for an hour or two, but if they are up we engage them with sensory stimulation.” Patients can be at the Home for up to 12 hours per night, seven nights a week; the service is covered by Medicaid, some private insurance plans, or can be paid for out-of-pocket. The model is presently being studied for possible replication in Florida and Rhode Island.

Other locales offer variations on the theme. The Family Caregiver Alliance, a state-funded program in California, runs periodic weekend retreats for care providers. “We give caregivers manicures and massages, things to help them feel better, more cared for,” says Kathleen Kelly, the Alliance’s executive director. “We provide fun and good food on a sliding fee scale.” New Jersey funds respite care and a host of services, including low cost prescription drugs, for the elderly and infirm through an eight percent tax on casino revenues that has been levied since 1977. Pennsylvania funds its services through a state lottery. Still other states have begun to use tobacco settlement monies for eldercare.

While these efforts should be lauded, it is private philanthropies, many of them religious, that have created most of the models that states and cities have duplicated. Jewish philanthropies, from UJA-Federation to Selfhelp Community Services, have created projects to benefit both caregivers and care recipients. Still, it is only in the last few years that the issue has captured the attention of the general Jewish community.

Rabbi Richard Address, director of the three-year-old Department of Jewish Family Concerns at the Union of American Hebrew Congregations, is charged with developing programs to deal with the graying of congregations—it is estimated that 30% of Reform Jews are over 60—and creating forums to deal with changes within the Jewish family. His goal is to raise awareness of aging issues, including caregiving, in the 880 Reform congregations in North America.

But how to do this? According to Address, several synagogues have started committees to provide voluntary services to elderly congregants. Temple Emanu-El in Dallas, for one, has raised money to establish a transportation support program. “It’s a voucher program for people who don’t drive anymore or who don’t drive at night. Say they want to go to a lecture at the Temple. The congregation will send a car to pick them up and drop them off and the cost is picked up by the synagogue,” says Address. Other shuls have organized home visits to shut-ins and taught seniors to use on-line resources to ameliorate their isolation.

“We are also developing rituals for older adults, spinning off the traditional blessings,” says Address, “The Gomel, the traditional blessing for passing through something dangerous, has been adapted so that it can be used to thank God for new life passages, a new relationship, the successful beating of cancer, or the completion of chemotherapy. We are developing rituals to welcome people into nursing homes and prayers to say when someone moves out of the family home. There is a mezuzah ceremony when they move in to a new home. But when they leave the house where they raised children, or sat shiva, or spent 25 years, there is nothing. We’re asking ourselves to what extent a synagogue should take on social service responsibilities. The bottom line is that Judaism commands us to take care of our physical and mental health so that we can be in a relationship with God. We also have a mitzvah-driven responsibility to relate to others.”

In addition to the UAHC’s efforts, the Grotta Foundation has a mandate to serve the Jewish elderly, [see LILITH, Winter 1999] “Public money is usually not venture capital. Philanthropy money is, so we can fund research and develop programs,” says Susan Friedman, executive director of the Foundation. Toward that end, Grotta is funding Synagogue HOPE (Help Opportunity Programs for Elders), an 18-hour caregiver education program that will be offered in 16 New Jersey congregations.

Yet model programs, as good as many are, do not ensure universal benefits for all who need them. “In 1965 we as a nation decided to create Medicare for the elderly and disabled and Medicaid for the indigent,” says Marcia Holman of the Pelican Health Corp. “We now need to revisit what we believe about the obligations of government and individuals. Unfortunately, as a society we’re ambivalent about government’s role in providing or promoting care. We assume that individuals should take full responsibility for family members, but if we want to hold individuals responsible for caregiving, we need to give them the tools to fulfill that responsibility.”

Eleanor J. Bader is a writer and teacher from Brooklyn, NY.

A Day in the Life…

One of my close friends provides a human example to buttress the statistics about how much unpaid labor “informal” caregivers provide to the elderly. “Barbara” – who doesn’t want her real name used because she “doesn’t want any of my dear relatives to think that attending to them presses on me” – triages the needs of elderly family members every day. Here are some of the routines she describes:

My Mom, 85.

Competent, mentally very alert, she lives in an old building in Brooklyn where most of the people her age have either died or moved. Mom’s windows don’t seal, the boiler goes off in winter inexplicably, there are small fires from old wiring. Simple things become complicated. Although she’s able to have deliveries of food, she can’t dispose of her garbage, because the kids in the building leave big windows open in the hall and it’s very drafty. So she’s basically confined to her living quarters. She used to escape to Florida for a few weeks in the coldest weather, but most of the people she saw down there are now in homes or they’re dead. And the inexpensive South Beach hotels have been yuppified, so she doesn’t have a familiar place to go to. I call her twice a day. Every morning now I ask: “Ma, do you have heat?”

When she was sick this winter, the worst thing was that her older friends were afraid to come, afraid of catching the flu. I spend at least one day a week there, and recently more than that. It’s hard for her to shop now, so I’ll bring a whole shopping bag of things I’ve bought; she’ll pick and I’ll return the stuff. Some incidents are sweetly funny. My mother needed a comforter. This comforter is something she puts near her, so it can’t be too heavy, too light, too scratchy. We went out to find one, but the wind picked up, and she was afraid to walk from the car to the bedding store. I went in and explained, so the saleswoman brought a sample out to the car half a block away!

My Mother-In-Law, 86.

Rae took sick with pneumonia Christmas Day. Her boyfriend, who lives with her, kept calling my husband’s work number. Finally my sister-in-law got hold of us at home. We called a private ambulance—911 would have taken her to nearest hospital, which is not a very good one; you know things like that about 911 when you live in Brooklyn—and they took her to the Manhattan hospital where her Alzheimer’s doctors are. After Rae got back home from the hospital, I drove my mother to visit her. Then I drove my mother back and picked up my uncle Morrie (it’s hard to get into a cab in Brooklyn in the snow) and took them to a diner they wanted to go to. While they were eating I went off to buy some plastic so that my husband and I could seal a leaky window in Mom’s apartment. My husband, meanwhile was taking his mother for a walk. (My sister-in-law found Rae’s doctors, and goes with her mother to all her appointments. Then I call to find out what the doctors have said. Then I remind my husband to call his mother, to visit, etc. No surprises here; the women are overinvolved and the men underinvolved.)

My Aunt, 85.

My aunt was also desperate for a visit that same day; her son is “a very important busy man,” she often says. So—after the shopping for my mother and my uncle, and after I go back to the diner to get them and take them home, and return to my mother-in-law’s to talk over her care—we pick up some things for my aunt at the bakery and we go to Queens to brighten her day for half an hour. There is no down time at all. It’s a whole day, from morning to night. I don’t mind doing it, but this is the reason I will not work full time.

My Uncle, 94.

Last winter my Mom went to Florida, so I called Morrie every day. He didn’t answer late one night. Next morning also no answer. I took my husband down to Brooklyn and we knocked. No answer. Then a little voice says “help.” Morrie had fallen between his bed and the wall and had been lying there for 18 hours. He was in hospital for weeks with a respiratory infection from being on that cold floor. But does anybody wear those warning buttons around their necks? No. It’s ridiculous.

UJA-Federation is talking about building assisted living apartments, but rents will be five or six thousand dollars a month! You could work your whole life for a Jewish nonprofit and not be able to retire to one of these facilities. My mom needs an affordable environment where she’s physically comfortable, with some people like herself so she can socialize for meals. Isolation is the worst for her.

I said to her last Sunday, “I’ll see you Tuesday.” And she said sadly “That’s two days away.”

 –Susan Weidman Schneider