Jackie Banes climbed up onto a trunk at the head of her grandmother’s bed. She put her right foot on the bed frame, inches from Cora Jackson’s ear, and her left on the wheelchair that was wedged between the bed and the dresser. Legs spread, her head almost touching the ceiling, she stood there for a second, towering over her 69-year-old grandmother. Jackie crouched down and grabbed her grandmother underneath her arms. She pulled. Mrs. Jackson jerked back a few inches. Jackie yanked again. Mrs. Jackson drooped in Jackie’s arms, where Jackie wanted her. Still supporting her grandmother, Jackie carefully stepped down from the wheelchair and gave one last pull, this time to the left. Mrs. Jackson plopped into the wheelchair.
“We push and pull each other all day,” Jackie said later, “and we don’t get anywhere.”
Mrs. Jackson’s right leg had been amputated several months before, in the spring of 1989, because of a diabetes-related infection that would not heal. First doctors had removed half of her foot, hoping there would be no need for further amputation. But after a month and a half of erratic outpatient care, Mrs. Jackson’s condition worsened and her leg had to be amputated too. Like many poor patients, she did not have a private doctor and instead went to Mount Sinai Hospital’s outpatient department or emergency room for basic care. During that delicate time when she needed to be followed carefully were she to have any chance of keeping the rest of her foot and leg, no one had aggressively managed her case.
To make matters worse, she had missed several doctors’ appointments because the family had no car and could not afford a medical van, which charged $70 for the two-mile round-trip ride from the family’s North Lawndale apartment to Mount Sinai. Medicaid, the state and federal health-insurance program for the poor, will pay for the vans, but Mrs. Jackson was not poor enough to qualify for anything other than its “spend-down” program, which meant she was eligible for medicaid only during the months when she put at least $394 of her $619 social-security check toward medical expenses.
Because of her age, Mrs. Jackson did qualify for medicare, the federal health-insurance program for the elderly, but medicare does not cover transportation to doctors’ appointments. Generally it pays only for visits that result in hospital admissions, even though consistent primary care can keep the elderly from needing costly hospital stays.
Unfortunately, the amputation of Mrs. Jackson’s right leg had not put an end to her troubles. Peripheral vascular disease continued to impede her circulation, and now Jackie was struggling to keep her grandmother from losing her remaining leg.
Jackie also had her husband, Robert, to worry about. That morning he was at a downtown dialysis clinic. His kidneys failed when he was in his late 20s, and he needed dialysis treatments three times a week to stay alive.
Then there were the couple’s three children, who were healthy but still a handful. At the moment 11-year-old Latrice and her year-old sister, Brianna, were squeezed together on a vinyl recliner sharing a bowl of corn flakes. Their 4-year-old brother, DeMarest, considered the big eater of the household, was also busy with his breakfast; he sat across from his sisters on the couch, scooping soggy cereal from his own bowl. Applause erupted every few minutes from the game show on the television outside Mrs. Jackson’s bedroom door, but as was often the case no one was watching it.
After Jackie got her grandmother settled in her wheelchair, she bent over the front windows to inspect her plants. It had rained hard that morning, and the sun was trying to break through the clouds and make its way through the dusty windows. Jackie picked up the plants’ tangled vines, pulling them apart. “Latrice, get me some tacks,” she said.
Latrice was her mother’s shadow. Like most children, she pouted when she got angry, but she often obeyed her mother without a murmur of complaint. A gangly girl whose legs seemed to be growing faster than the rest of her body, she tagged along after Jackie even when she was doing something as simple as tacking vines to the wooden windowsill.
Latrice’s attention to her mother was not unappreciated. Jackie valued her eldest daughter’s company so much that when she felt overwhelmed caring for her grandmother she sometimes kept Latrice home from school. Jackie could discuss more adult topics with her oldest daughter, and the two had forged a special bond during the five years they’d lived alone with Mrs. Jackson before Robert and Jackie married.
Brianna, who had just learned to walk, waddled up to her mother and sister. She whined for attention. “Whatsa matter, pooch?” Jackie asked, turning away from the window.
Before she could say anything else the phone rang. “If that’s my father, tell him I left the planet,” Jackie grumbled.
Tommy Markham called Jackie at least once a day to chat. “That’s my heart,” he says of the daughter he rarely saw when she was growing up. “She is number one. Anytime I call her, if I need anything, she’s right there.”
Though Jackie did not want to be bothered by her father right then, she often expressed sympathy for him. When he was 48 he had suffered a stroke caused by high blood pressure and was now partially paralyzed. He lived at his girlfriend’s house, but since the stroke the couple had not been getting along too well. Jackie worried about where her father would go if they broke up. She took the phone from Latrice. It was her father. The conversation was brief.
Jackie returned to the kitchen to start her grandmother’s breakfast. With the sausage sizzling on the stove, she rejoined her children, bringing them a small glass jar that held a grasshopperlike insect. The family had been collecting bugs that summer. She sat down between Brianna and Latrice on the couch, and they peered through the jar at the bug, which Jackie thought might be a locust. “Isn’t there a page in the dictionary with all the insects?” she asked.
Latrice jumped up and pulled a thick dictionary from a stack of books and papers that sat next to the couch. They found the right page, but were not sure from the drawings which creature they had caught.
“Monday a holiday, ain’t it?” Latrice asked, bored by the bug.
“Ain’t it?” Jackie scolded.
“Isn’t it, I mean,” Latrice said.
Monday was Labor Day, Jackie told her. Jackie sometimes reminded her children to speak standard English, though she frequently injected slang into her own speech. But changing their speech patterns was an uphill battle, since almost everyone they knew usually, as Jackie put it, “talks black.”
Back in the kitchen Jackie fixed a plate of sausage and grits, the breakfast Mrs. Jackson had requested. Jackie had stopped paying careful attention to her grandmother’s dietary restrictions. “When I bring Mama food the way Rose [the home nurse] say to fix it, she don’t want it,” Jackie said.
That morning Mrs. Jackson also decided she did not want the breakfast she had asked for a half hour before. A few minutes after Jackie gave her grandmother her plate, Mrs. Jackson called for Latrice to take it away.
“Are you through eating?” Jackie called to her.
“Yes,” Mrs. Jackson said.
“Why didn’t you try to eat more?”
“I didn’t feel like it.”
“Don’t tell me you want something else later on,” Jackie warned, now standing by Mrs. Jackson’s door.
“Jackie, I stop eating something when it makes me sick,” Mrs. Jackson snapped.
“That’s all you had to say, Mom,” Jackie said quietly.
“I want something else,” Mrs. Jackson continued. Jackie walked away muttering. A few minutes later she sent Latrice and DeMarest to the store to buy a tomato.
At 30, Jackie was mothering the woman who had mothered her after her real mother, who was a teenager when she had Jackie, gave her up. But it was harder to care for an old, sick woman than a little girl, Jackie thought. She could not tell her grandmother to eat what was in front of her or go hungry. Her grandmother needed food for strength, and Jackie knew the old woman might feel fine one minute and queasy the next. She could not console herself with the knowledge that one day her grandmother would stop needing so much help; her dependence seemed permanent.
A home physical therapist had visited once in June, but in nearly three months since then Mrs. Jackson had not had any at-home physical therapy. She had returned to the hospital in late July and stayed through the first week in August. In the four weeks since she had come home only the home nurse, Rose, had visited her.
The physical-therapy supervisor at the Mount Sinai Home Health Agency, Robert Prischman, reviewed Mrs. Jackson’s case some months later. He was troubled that Mrs. Jackson had received so little physical therapy and had not even mastered moving from her bed to her wheelchair. He attributed the void primarily to restrictive medicare policies. Even though Mrs. Jackson might have benefited from more therapy, he said, the hospital had to consider the possibility that medicare might not pay for it because Mrs. Jackson’s chances for substantial improvement were slim. “We are being looked at all the time for overutilization of services,” he said. “If medicare turned around and said the service was unnecessary, we’re out thousands.”
Mrs. Jackson was unfortunate to require home care at the tail end of a conservative era in the home-health-care industry. Companies that were once quick to provide services had become wary of taking on medicare clients. The chill came about because of a marked increase in medicare’s denial of home-health-care claims, a trend spurred by 1984 legislation intended to curb fraud and abuse in the industry. Medicare refused to pay these bills on many grounds: services were not medically necessary, too frequent, or excessive given the medical-treatment plans.
A General Accounting Office study showed that, nationwide, denials of home-health-care bills increased from 3.1 percent of all bills in 1985 to 9 percent in 1987. The rate of denials varied across the country because in each region bills are processed by different “fiscal intermediaries,” insurance companies the federal Health Care Financing Administration hires to handle medicare billing. The Chicago region had one of the highest denial rates: nearly a fifth of home-health-care claims processed in the second quarter of 1987 were rejected.
The denials were viewed by many as no more than a sneaky method of cost control, and in late 1988 a federal judge ruled that many of them were “arbitrary” and “contrary to law.” Subsequently an organization that was part of the suit, the National Association for Home Care, was allowed to help write new rules for medicare’s home program. The changes made the rules more specific and broadened coverage. For example, physical therapists now can provide more services to help patients maintain their functioning. For the first time they are allowed to visit invalids like Mrs. Jackson once a month to assess such things as their compliance with exercise plans.
The new rules were issued in July 1989, but it was some time before home-health-care agencies began to take full advantage of them. “We were afraid of getting burned,” Prischman said. A Mount Sinai internal report showed that its Home Health Agency made 36 percent (or 437) more medicare-funded visits in March 1990 than it had in July 1989.
Medicare restrictions aside, overworked home nurses sometimes simply forgot to request physical therapy for their patients, Prischman said. “The nurses are so busy teaching patients how to take their medications, how to do their dressing changes, that they don’t always cue into the need for physical therapy.” The nurses’ workload had also increased in the winter of 1989, when Mount Sinai administrators directed home nurses to visit more patients each day. Many hospitals rely on programs like home health care to help subsidize their operations. Notwithstanding the spate of denials in 1987, home health care is reimbursed relatively well by medicare.
Whatever the reasons Mrs. Jackson’s physical therapy was cut short, Prischman regretted that it had happened. “The more somebody’s in bed, the worse everything gets. Everything slows down. You need to increase blood flow to the extremity as much as possible to prevent further amputation. You also want to get people up to feel like they’re making progress.” Better mobility for Mrs. Jackson would have made Jackie’s job easier, he said. “Once the family sees nothing is happening they don’t want to help as much–because they’re not seeing any change. They give up hope.”
Sometimes Jackie did feel hopeless. When her grandmother first got sick and part of her foot was amputated, Jackie delighted in watching her gradual improvement. She progressed from a walker to a cane and occasionally even set that aside. “We would whisper to each other, ‘Look, look at her. She’s going without the cane,'” Jackie remembered.
But when Mrs. Jackson’s leg was amputated, the light at the end of the tunnel–some degree of recovery–became dimmer and dimmer. “Mom never did move her own self forward in her wheelchair,” Jackie lamented. “She wouldn’t even make a couple of rolls forward to answer the phone.”
So Jackie did the rolling. And just about everything else. Once a day she washed the wound where her grandmother’s leg was amputated and changed the dressing on her foot ulcer. Before meals she tested Mrs. Jackson’s blood sugar with a home kit. She tried to remember to give her a high-blood-pressure pill in the evenings. She gave her sponge baths, changed the pads in her bed, and emptied the catheter Mrs. Jackson was given in the fall. She washed her grandmother’s soiled sheets and nightgowns, and fixed her a plate of food when she called. She dragged her out of bed once a day so she could sit in the living room. She collected bills from hospitals, medical suppliers, and ambulance companies so her grandmother could meet her spend-down requirement and become eligible for medicaid.
Caring for small children while taking on responsibility for an older relative is not unusual for black and Hispanic women. Poor minorities are debilitated by chronic diseases earlier in life than whites, which means their care givers will be younger too. Other factors make black and Hispanic women of any age more likely than whites to become responsible for elderly family members: more minorities suffer from chronic diseases, many cannot afford outside help, and a smaller proportion live in nursing homes.
Blacks fill fewer nursing-home beds than whites, mainly because they are more likely to be poor medicaid recipients, a group that is no more lucrative for nursing homes than it is for hospitals and doctors. But medicaid’s relationship to nursing homes is more complicated than its relationship to other health-care providers. First, neither commercial insurers nor medicare pays for much nursing-home care. Medicare pays only for highly skilled care for a limited time, covering less than 5 percent of the country’s total nursing-home bill. Commercial insurers pay even less. Medicaid, however, pays for those who need custodial care, highly skilled or not, as long as they’re poor enough. It has become the nation’s de facto long-term-care insurer, covering a whopping 45 percent of national nursing-home costs. With nursing-home rates running at least $30,000 a year, many middle-class people who enter them eventually exhaust their savings and become eligible for medicaid. Blacks’ chances of being admitted to nursing homes are worse than whites’ because they are more likely to be poor from the start. And some nursing homes, especially the best ones, require potential residents to prove they personally can afford to pay for at least one year of care before turning to the lower-paying, slower-paying medicaid. Ann Hilton Fisher, an attorney who represents nursing-home residents for Chicago’s Legal Assistance Foundation, said one local nonprofit nursing home requires residents to show available assets of $140,000 before admission.
Latrice pushed open the front door and threw her book bag onto the recliner. She was dressed in school clothes, red stretch pants and a black-and-red striped shirt. Jackie came from the kitchen to greet her, Brianna resting on her hip. The little girl had just been rousted from her nap. Her eyes were still puffy from sleep, which made her resemble her father before his dialysis treatments, when his face sometimes gets swollen from fluid retention.
Latrice, who had just started sixth grade, handed her mother a notice about an upcoming meeting to discuss the new local school councils. Jackie used to serve as secretary for the PTA. Latrice’s teacher asked if Jackie would attend the meeting. “She can’t,” Latrice answered. “Not with grandma here.”
“Jackie,” Mrs. Jackson called out.
“Yes, ma’am,” Jackie answered as she walked toward her grandmother’s room, leaving Latrice to watch Brianna.
Mrs. Jackson was lying in the middle of her bed with a pink blanket wrapped around her and crossed in front, making her look like an old Navaho woman. Without opening her eyes, she asked Jackie to turn off the small fan on her dresser. She had been sick to her stomach that day but had declined Jackie’s offer to call an ambulance to take her to the hospital.
Jackie returned to her children, who were playing in the rear of the living room, where the family spent much of its time. Sometimes Jackie and the children stayed there so as not to disturb Mrs. Jackson in the front bedroom; other times they stayed there so as not to be disturbed by her.
With her grandmother asleep, Jackie was enjoying some time alone with her children. She showed Latrice how to do a card trick, then helped with her math homework. She pulled out the dictionary and tried to identify another insect the children had caught.
Jackie did not even flinch when DeMarest leapt onto the couch brandishing Brianna’s tiny shoe, intent on smacking a roach that was crawling up the wall. She and her daughters joined in on the attack in what seemed almost a family ritual.
“Here, use Latrice’s shoe,” Jackie said.
Latrice quickly pulled off her shoe, long enough to give DeMarest room for error, and handed it to her brother. DeMarest watched the bug’s progress up the wall, then whacked it. Jackie handed him a piece of paper to wipe away the remains.
“That’s one I don’t have to worry about,” Jackie said, thanking him. DeMarest smiled proudly and walked to the kitchen with his kill.
Later, as Jackie walked into her grandmother’s bedroom to straighten it up, she paused before Mrs. Jackson’s dresser and picked up a snapshot-size photo album. She began to flip slowly through it, stopping at a picture of her and Latrice taken on the little girl’s third birthday. “That’s the way it should have been,” Jackie sighed. “Just me and Latrice.”
It almost was just Jackie and Latrice–and Mrs. Jackson. Jackie first met Robert when she was 18, at a birthday party for his mother. What she remembered most about their first encounter was not Robert, whom she considered “kind and nice,” but the yellow-brick bungalow where he lived. It was decorated with gold-trimmed mirrors, a marble-topped table that hung from the ceiling on gold chains, and an illuminated picture of a French village. And it was a home; Robert’s mother owned it. “These are people with lots of cash,” Jackie thought to herself as she surveyed the living room. “Everybody has a nice job.” Robert’s mother worked in an office; Robert had a job at a nearby hospital.
Right away Robert and Jackie began spending much of their time together. “The very first week he was buying me gifts and whatnot–clothes and rings and stuff.” Within a few months Jackie was pregnant, and as quickly as it began her new relationship ended.
Jackie refused to see Robert because his mother let it be known that she thought the baby wasn’t her son’s. Robert continued to call on Jackie, imploring her to ignore his mother, but Jackie would not let him any further than the front steps. She was stoic about the matter. When she feels she is in the right, she will not try to win others over with pleas or persuasion. It’s as if such acts are beneath her. “I just let it go,” she says.
But soon after Latrice was born Mrs. Jackson saw Robert on the bus and told him he was a father. Then one morning Robert’s mother came by and asked if she could see the baby. Jackie was in the midst of going through Latrice’s baby clothes, something she did regularly. “Every day I took them all out and smelled them, touched them, planned what I was going to put on her on Monday, Tuesday . . . ”
Jackie invited Robert’s mother in, pleased that she would see all of the baby’s finery, proof that Jackie did not need Robert or her. Robert’s mother took one look at Latrice and burst into tears. “She was pointing to different parts of her face: ‘I can see Robert here and here and here.'”
Amends were made, and Jackie and Robert resumed seeing each other daily, though Jackie continued to live with her grandmother. The couple married five years later, in 1983.
Now Jackie was wishing she had stayed single. Robert, she strongly suspected, was back taking drugs. In mid-September he had been fired from his security-guard job; scrap metal had been stolen during his watch, and he had been accused of the crime. Jackie had no idea whether he had something to do with the theft, because when Robert used drugs there was no telling what would happen. One thing always happened though, and this time was no exception. Robert stopped giving Jackie money to pay the bills. She was broke.
At the same time Jackie had become increasingly frazzled being at her grandmother’s beck and call 24 hours a day. When the old woman awoke she asked her granddaughter for a plate of greens, and became annoyed when she had to wait while Jackie warmed them.
“Jackie, did them greens heat up?” Mrs. Jackson called out from her bedroom.
“Come and get them,” Jackie said in a rare display of spite.
“I can’t,” Mrs. Jackson said flatly.
Mrs. Jackson remained in a foul mood. When DeMarest climbed onto her bed, she gruffly ordered him out of her room. Sometimes DeMarest and Brianna wandered into their grandmother’s room on their own; other times Jackie sent them in to keep her alert. This time she was alert all right; DeMarest scurried out of the room.
A few minutes later though he and Brianna followed Jackie back in when she brought her grandmother some juice. They lingered, playing with the pill bottles on her dresser. “Put them pills back on the dresser,” Mrs. Jackson said. But almost immediately she relented and told the children they could play with a couple of the empty bottles. Once more DeMarest crawled onto her bed, but this time Mrs. Jackson did not seem to mind his presence, until she began to slide off her pillow. “Pull me over, DeMarest,” she barked. “Grab me by the arm and pull me that way.”
DeMarest stopped his play, a perplexed look on his face. “I can’t,” he said, realizing that he was too small for the task.
“Get off the bed then. If I slap you, you’re going to feel it.”
In the late afternoon Rose, the nurse, arrived to check on Mrs. Jackson, whose combativeness occasionally could be transformed into pleasant talkativeness with outsiders, something Jackie had a hard time understanding. “In good spirits,” Rose wrote in Mrs. Jackson’s progress note for that day.
Before she left, Rose asked Jackie if she had tested her grandmother’s blood sugar.
“No. You want to do it?” Jackie asked. She handed Rose the test kit so that the nurse had no choice.
That was typical of Jackie’s attitude that fall. She gave her grandmother sponge baths only on the three days a week that Rose visited. She cleaned Mrs. Jackson’s foot ulcer once a day, though she thought she was supposed to do it more often. And when she got a muscle spasm in her back, she stopped taking her grandmother out of bed.
“DeWayne tell you what I wanted?” Mrs. Jackson called from her bedroom immediately after Rose left.
“You mean DeMarest,” Jackie said. DeWayne is Jackie’s cousin; Mrs. Jackson every once in a while confused him with DeMarest.
“Get me a piece of watermelon.”
“Cool down, Mama,” Jackie sighed.
Both the Illinois Department on Aging and to some extent medicare pay for homemakers who might have relieved Jackie. But her tight budget and confusion about how the system works have prevented her from taking advantage of them.
In February, when part of Mrs. Jackson’s foot was amputated, a hospital social worker told Jackie about the Department on Aging’s homemaker service. Through what is called the Community Care Program the department provides homemakers to the elderly in an attempt to prevent inappropriate placement in nursing homes.
Mrs. Jackson qualified for four hours of service each weekday, according to a needs assessment administered by the social worker in early March. A homemaker could bathe and dress her, help her get in and out of bed, do her shopping, fix her meals, and launder her clothes. A state-contracted agency called Staff Builders sent a homemaker for two weeks before Jackie canceled the service. She decided she could not afford the homemaker’s help, which cost $110 a month, a fifth of her grandmother’s social-security check. Then too, in March Jackie had not realized how demanding caring for her grandmother would become. She assumed she would not need any extra help–since her teens she had cooked and cleaned for her grandmother–and she preferred not to have another stranger in her home if she could help it. Still, the decisive factor was the $110 monthly fee.
The Department on Aging did not always charge for homemakers. Before 1982 they were free to anyone 60 or older. But a long waiting list developed because the state agency could serve only a small number of clients with the fixed budget set by the Illinois General Assembly. By the time many elderly people got to the top of the list, they were already in nursing homes or dead. In response to a lawsuit, a federal court ruled in 1982 that all eligible clients had to be served. To comply without increasing costs, the state required a copayment from anyone whose income was more than $426 a month, $74 below the federal poverty level for one person in 1989. (The income cutoff is now $498.)
The theory behind the cost sharing was that by requiring the less-poor elderly to make copayments the Community Care Program could serve more people. The problem was that with an income cutoff of $426 many of the elderly required to make a copayment were still quite poor. They may desperately need help around the house, but cannot spare $100 or even $50 of their small fixed incomes. A third of elderly black women in Illinois have incomes at or below the poverty level, and another 20 percent are in Mrs. Jackson’s situation, with incomes between 100 and 150 percent of the poverty level.
The state’s short-term savings may translate into long-term waste. More than half of the clients who withdrew from the Community Care Program did so because of the fee, one study found. The fee was intended to weed out elderly who could get by without a homemaker, but the study showed that people who needed help–judging by their high scores on a disability needs assessment–still withdrew, because they could not afford the copayment. Many of them ended up in nursing homes. The state and federal government spend $16,000 a year on each of the nearly 50,000 nursing-home residents eligible for medicaid in Illinois. Elderly people living at home may use other government money, but the Community Care Program spends only about $4,000 a year on each of its clients.
After Mrs. Jackson dropped out of the homemaker program, a Staff Builders case manager offered Jackie another option. If she completed a 12-hour class, Jackie could earn about four dollars an hour for the 20 hours of care authorized for her grandmother.
At first Jackie was intrigued, but she worried that if she lost the welfare grant she received from AFDC her children would no longer get medicaid. Few employers provide health insurance for part-time workers, and in low-paying industries such as home care even full-time employees often do not receive health benefits. No one knows how many women stay on welfare primarily to retain medicaid coverage, but policy experts say that stories like Jackie’s suggest that the group may be quite large. “It’s the number-one thing women say they fear they’d lose out on if they left AFDC,” said Kathryn Edin, a sociologist conducting research on the subject. “National health care and subsidized child care . . . are essential in any package of benefits these women would need to make it in a low-wage job.”
The reasons Jackie chose not to become a homemaker for her grandmother–low pay, no health benefits–account for the rapid turnover in the industry as a whole. The Department on Aging’s Community Care Program contracts with agencies like Staff Builders, paying them about $7 for each hour of service their homemakers provide. That means that after subtracting administrative costs the homemakers themselves earn at most $5 an hour. Larry Lee, the owner of a home-health-care agency south of Chicago, explained the dilemma the state’s low rate created for him and his workers, who were almost all women: “It’s not enough money for them to survive. We pay a trash hauler better than we pay people to take care of our mothers. They have to go back on public aid because they have to have the green card if their kids get sick.” The situation had gotten so bad, he said, that he was offering his homemakers the option of working for wages or health insurance.
Although Jackie feared losing her medical benefits if she worked part-time, that might not have happened. Her income would have been about $320 a month; Illinois and some other states have a medically needy program that allows some families whose incomes are a shade higher than welfare grants to continue receiving medicaid. The 1989 AFDC payment for a family of four in Illinois was $386 a month, but four-member families that earned up to $517 could still get green cards. (In July 1988 new federal laws began to be implemented that required states to give medicaid to pregnant women and infants in families with still higher incomes. Under these changes, even if Jackie made more than $517, Brianna might have been eligible for medicaid, although Latrice and DeMarest would have been too old.)
But Jackie’s cash grant definitely would have been reduced or eliminated, since Illinois and other states take away nearly a dollar for each dollar increase in earnings–a policy welfare expert David Ellwood, a professor at Harvard University’s John F. Kennedy School of Government, compares to an almost 100 percent tax on welfare recipients’ work. For Jackie, the situation was even worse, because caring for her grandmother was not steady work. “With Mama in the hospital so much, a lot of times I wouldn’t have had a patient, so I wouldn’t have had any income.”
Ellwood says part-time work is irrational for women on welfare. “A woman is crazy to try and work part of the time and stay home with her children part of the time. She gets into even more hassles with the welfare system because she must constantly report her earnings, she must arrange for day care, and she must cope with work, children, and sometimes several forms of welfare. Her reward for all this is a tiny amount of extra income and often less medical protection.”
There was still one other program that could have lifted some of the burden from Jackie, but she did not understand that it would have been free, paid for by medicare. In a limited number of situations, the federal program will pay for home-health-care aides, who perform many of the same tasks as Department on Aging homemakers, such as bathing, dressing, changing bandages, and preparing light meals. Medicare only covers these aides when patients are sick enough to require visits from a home nurse, a category that included Mrs. Jackson.
Mount Sinai’s home-health-care agency offered Jackie one of these aides after her grandmother’s leg was amputated, but Jackie assumed that someone who performed the same tasks as the Staff Builders homemaker would cost the same $110 a month. No one told her different. “I don’t know if we ever say [home-health-care aides] are ‘free,'” said Joyce Kaires, the director of the Mount Sinai agency. “Maybe [Jackie] just didn’t understand.” In fact, Jackie has never been quite sure how the various government health and social programs intersect, although she has been using them for much of her life. “For a long time I was thinking medicaid and medicare were the same thing,” she said.
Her confusion is not unusual. An expert on women and poverty who works in Philadelphia summed it up this way: “Show me the poor woman who finds a way to get everything she’s entitled to in the system, and I’ll show you a woman who could run General Motors.”
Mount Sinai’s home-health-care agency may not have been exactly forthcoming about the homemaker benefit, however. The agency was just emerging from a period when it sharply curtailed home visits in response to medicare denials, a time when one hospital administrator concluded that staff had “probably become too conservative and [were] not rendering as many visits as may be allowed by third-party payers.”
It was the first week of October, and Jackie had not taken her grandmother to the doctor since she had been released from the hospital nearly two months before. Part of the reason was transportation; Mrs. Jackson’s medicaid spend-down coverage had expired at the end of July. Jackie also was angry at her grandmother’s doctors; she did not think that they were trying hard enough to cure Mrs. Jackson or that they understood the family’s plight.
One two-week hospital stay in June had particularly rankled Jackie. She thought her grandmother had been admitted so that the darkening sore on her left heel could be treated. But doctors subsequently discovered a bigger problem. A bypass graft that had been inserted in Mrs. Jackson’s right thigh in a vain attempt to save her leg had become infected. It was surgically removed, and Mrs. Jackson’s condition improved.
The Friday her grandmother had been discharged, Jackie was told that if she remained concerned about the heel she could take her grandmother to the podiatry clinic on Monday. The podiatrist had not debrided the wound (surgically removed infected tissue) because he was not sure the procedure would help, but he was willing to consider it again. That seemed absurd to Jackie. “Why didn’t they clean it out while she was there?” she complained. “They make me feel so helpless.” For their part, doctors did not feel they could justify keeping Mrs. Jackson in the hospital over the weekend simply because of her heel; wounds can be debrided as an outpatient procedure.
While Jackie indicted the doctors for what she thought was foolishness, she also felt judged by them. She thought doctors talked about her behind her back. “I look like the bad granddaughter to them. Every time she goes to the hospital they tell me not to worry about her heel,” Jackie said, her voice rising. “Then when we get home, it’s a problem. Now I might go in there and they’ll say the whole root of the problem is that I haven’t brought her back. I don’t even want to talk to those doctors, they make me so mad.”
Jackie’s resentment toward Mount Sinai and its doctors grew in August, when once again she complained that her grandmother had been sent home before she was well. Mrs. Jackson had stayed in the hospital for two weeks while doctors tried to treat a urinary-tract infection and determine the cause of her persistent vomiting. Several tests were inconclusive, and efforts to take a CAT scan of her abdomen were thwarted because of barium Mrs. Jackson had retained from an earlier test. So doctors decided to discharge her. “We will bring her back as outpatient in 1 wk. to assess [her kidneys, ureter, and bladder] at that time,” a medical resident wrote in her chart.
Of course the doctor would not bring her back. That was Jackie’s job. And since Mrs. Jackson had not met her medicaid spend-down for August, Jackie would have to spend $70 she did not have for the round-trip to the hospital. “That’s stupid,” she said. “I’m not bringing her back. Forget it. I’ll bring her back when she’s sick.” And that’s what happened.
Mrs. Jackson was readmitted to the hospital two months later, on October 8, with sharp abdominal pain. She was diagnosed with acute diverticulitis, an inflammation of the small pockets in the wall of the large intestine. It’s impossible to know if the missed CAT scan would have detected the disease before it reached a serious stage, but it seems likely. Complicating the diverticulitis were two other conditions: Mrs. Jackson’s umpteenth urinary-tract infection and a stomach ulcer.
Mrs. Jackson sat in a chair next to her bed with a dinner tray in front of her. She had taken only a few bites of the beef, mashed potatoes, and spinach. She was swallowing a lot, as if she felt sick to her stomach. “Feeling a little rough,” she said.
Her skin sagged from her cheeks as if weighted, and almost seemed to drag her prominent lips downward into a frown. It was obvious that it had been a while since Jackie had done her hair; a few braids poked out from the gray frizz that framed her face. Her hospital gown was awry and did not cover the stump of her right leg; amputated well above the knee, it looked like a sack of potatoes sewn up at the end by a zigzag scar. Her other leg was as skinny as a bird’s. A quarter-size black sore had developed on her shin, similar to the one on her heel.
Having had more than enough of her dinner, Mrs. Jackson called for the nurse’s aide, who appeared a few minutes later. “I’m done,” Mrs. Jackson said.
“I’ll move you as soon as I get me some help,” the large, good-natured aide responded.
Jackie had witnessed the same scene many times: nurse’s aides declining to move her grandmother by themselves. But on one occasion an aide had started to lift Mrs. Jackson on her own. “No, baby, you can’t do it,” Mrs. Jackson had said. “It takes more than one of you to move me.”
Jackie was surprised.
“What about Jackie? There’s only one Jackie,” she said to her grandmother, miffed that Mrs. Jackson had never acknowledged how hard she was to move. Mrs. Jackson did not respond. “She just stare at me,” Jackie said.
Jackie did not know what to make of the flashes of anger she felt toward her grandmother. How could she get mad at a woman who was so sickly, who was a pale shadow of her former self? Jackie frequently talked about feeling guilty for all manner of supposed sins: for wanting time away from the old woman, for not taking her to the doctor, for considering putting her in a nursing home, for not putting her in a nursing home, for using part of her social-security check for household expenses, for not visiting her enough at the hospital. “I got a guilt streak running down the middle of my back,” she said.
Eventually the aide found some help, and after much pushing and pulling Mrs. Jackson sat upright in bed. “What day is it?” she asked dejectedly. It was the tenth day of her October hospitalization, the 90th day she had spent in Mount Sinai that year. The answer did not seem to mean much to her.
“I want to go home,” she pleaded somewhat uncharacteristically. Mrs. Jackson rarely said much to anyone other than Jackie and her children, and it was extraordinary for her to express such heartfelt sentiment. Over and over again in her medical chart nurses had written that she refused to use the call button when she needed something. Once when asked why she so often watched the hospital television without sound, she replied, “I’d listen if somebody turn it on.” But she never asked anyone. One of the hospital social workers suggested that such pronounced passivity explained why she sometimes got so surly. By the time she asked for something she had waited so long–and become so resentful that nobody had provided it–that she lashed out.
This October evening Mrs. Jackson was more morose than irritable. The other patients on her floor certainly did not help lift her spirits. For the first time she had been put on Mount Sinai’s geriatric floor, which was reserved for the sickest elderly patients, many transferred from nursing homes.
The floor was extremely quiet. No resident physicians stood outside patients’ rooms animatedly discussing cases. New doctors were not assigned to the geriatric unit because the hospital had decided that patients with such chronic illnesses did not need the constant medical attention residents provide. (Patients with acute illnesses make better “teaching material” for residents anyway.) For the same reason only a registered nurse, two licensed practical nurses, and two nursing aides were assigned to care for 20 patients. Which leads to another reason the floor was so subdued: the few aides were uneasy about their ability to control some of the demented patients, so they tied them down, whether a doctor had ordered it or not. To do this is a violation of state law, but the law is hard to enforce.
As Mrs. Jackson looked through her open door, an old man on a gurney rolled slowly by, pushed by an orderly. His shrunken head was thrown back, his mouth open. He looked closer to dead than alive. Mrs. Jackson turned away.
The old woman seemed lonely. Jackie had visited her three days before, on a Sunday. She used to take the bus to Mount Sinai every day, but it was the 90th day of Mrs. Jackson’s hospitalizations for her too. In addition, the hospital was enforcing a rule that forbade children younger than 16 to visit patients, which meant Latrice could not come with her mother anymore. Jackie sometimes had considered the bus ride to the hospital with her daughter a break from her usual routine, but going alone was not as appealing.
Jackie had expected her grandmother to come home the day after she visited her, but Mrs. Jackson was not discharged that day because her ulcer flared up. Four days later, however, on a Friday, doctors again thought she was well enough to return home. This time the Baneses were not ready to take her back.
When the ward clerk called home, Robert told her that Jackie had gone out of town. “There’s no way we can take her,” he said. Robert lied because Jackie wanted to go to a suburban mall with his sister on Saturday. Robert’s sister had a car, and the two of them were planning to do some early Christmas shopping. Jackie was excited about the day away.
Mrs. Jackson’s social worker during that hospitalization, Marion Garmaise, later said she suspected Robert wasn’t telling the truth but chose not to confront him. “There’s no point in getting people all riled up if you’re not going to change the situation,” she said. “It might have gotten [Jackie] mad, and then her grandmother would have ended up staying even longer.”
Jackie did not like lying and had tried the straightforward approach in August, when her 28-year-old brother died of pancreatic cancer in Mississippi. It had not worked. She had hoped to drive south for his funeral with some cousins, but her grandmother was to be discharged from the hospital the day after he died. She asked the hospital to keep Mrs. Jackson a few extra days, but Mount Sinai refused because medicare would not pay for such custodial care. “It’s a problem because no one can do what I do,” Jackie said. “I don’t guess the hospital would go bankrupt keeping her an extra day, but I guess they couldn’t keep her all the days I wanted them to.”
Jackie did not get much help from her family. Mrs. Jackson’s younger sister, Eldora, lived nearby, but she was blind from diabetes. Mrs. Jackson’s son and Jackie’s father, Tommy, could not provide much help; since his stroke it was Jackie who ran errands for him.
Had she not been so poor, Jackie might have been able to put Mrs. Jackson in a nursing home for a few days, or might have contacted Kin Care, a private agency in Chicago that arranges respite in other families’ homes. Marion Garmaise pointed out that money makes care giving easier in many ways. “You can hire help. You can hire taxis. You can get a car with a wheelchair lift. You can go traveling.”
No one told Jackie about a $69,596 federal grant that had been given to Chicago’s Department on Aging that year to provide free respite care. The money was to be doled out through agencies like the one that arranged a homemaker for Mrs. Jackson. But the grant was so small that the city did not openly promote the service, fearing the demand would be too great, said Mary Lou Budnick, the department’s grants-management director. Ironically, half the money was not spent and was therefore transferred to the fiscal 1990 budget.
Being solely responsible for her grandmother, Jackie experienced what is known as “care-giver burnout.” Dozens of studies have reported on the factors that take the greatest physical and emotional toll on care givers. Among them are other family stresses, of which Jackie had no shortage; a high level of dependency on the part of the disabled person; little potential for improvement; the inability of the sick relative to communicate with the care giver by, for example, expressing gratitude; and lack of help from other family members or from formal respite services.
Much of the literature about care giving is obviously written with middle- and upper-class women in mind. One publication offered a “checklist/guide” to help potential care givers assess whether they have the “physical and emotional resources” to keep a relative at home, or whether they should consider a nursing home. Here are some of the questions care givers are supposed to ask themselves:
If Jackie had used these questions as her guide, Mrs. Jackson would have been put in a nursing home immediately after her leg was amputated. Care giving is trying no matter how affluent one is, and Jackie certainly never had the financial flexibility or family support that the checklist suggests are necessary. Did Jackie make the wrong decision in keeping her grandmother at home? Mrs. Jackson certainly did not think so.
But the old woman was becoming ever more pessimistic. “It look like my body just getting black things all over it,” she told Jackie one day after she came home from the hospital in October. Her grandmother’s continued deterioration distressed Jackie too. She considered a nursing home. “That might be best for her. They would do better than me. I guess she gets depressed just laying in here.” She thought about her grandmother dying. “Sometimes it seems like Mama might be better off dead,” she said. “You want it, but you don’t.”
Jackie’s passing thoughts about her grandmother’s death were mixed with a desperate desire for her to live. The feeling peaked early in the morning, before another long day of caretaking had begun. Sometimes as soon as Jackie awoke she shook DeMarest, who slept in a trundle bed beside her. “Go in there and see how your Nana’s doing,” she told him. DeMarest, who eagerly helped his mother by performing such tasks as reporting on the level of urine in his grandmother’s catheter bag, hurried off to perform his “grown-up” chore.
“She didn’t say anything,” he said when he returned.
“What?” Jackie demanded, her voice rising with fear. “Go back there and ask her how she’s doing.”
DeMarest turned and ran to the front of the house, then came back. “She said she’s doing all right.”
Jackie threw off her bed covers. “Thank you, DeMarest,” she said.
The family members’ names have been changed to protect their privacy. This article is excerpted from the book Mama Might Be Better Off Dead, to be published this month by the University of Chicago Press. By arrangement with the University of Chicago Press copyright 1993 by the University of Chicago. All rights reserved.
Art accompanying story in printed newspaper (not available in this archive): illustration/John Zielinski.