Medicare pays for hospital stays and short-term, skilled nursing care for older Americans. It does not cover the kind of custodial care Jackie required, and it generally does not pay for long-term stays in a nursing home or a dementia-care unit, a fact nearly 40 percent of Americans over forty don’t fully realize, according to a poll from the Associated Press–NORC Center for Public Affairs Research. Medicaid, designed to provide health care to the poorest Americans, can pay for nursing-home residence and long-term care. However, in some states, such as South Carolina, it cannot be used to cover room and board in assisted living or an assisted-living facility’s dementia-care unit—that is, the kinds of places that provide custodial care to those who don’t qualify for nursing homes. Medicaid supports some at-home services, but only if states apply for waivers. (There is also a program in South Carolina and other states that can supplement payments to assisted-living facilities for Medicaid-eligible residents, but Jackie, like many other seniors, did not meet its stringent income and resource limits.)
Jackie did not qualify for Medicaid outright: Her assets and her monthly Social Security income of $1,223 disqualified her from South Carolina’s basic 2012 Medicaid limits of $2,000 in resources and a monthly income of just over $900 (the limit is now $973). Given her needs, she could have possibly qualified for some in-home benefits—such as visits from a nursing aide—through the state’s Medicaid programs, some of which have higher income thresholds. But it would have taken months to get through the paperwork, and even with some Medicaid supports, I knew she needed full-time caregiving, a role my father could no longer fulfill.
My dad fought me when I first suggested moving Jackie to an assisted-living facility. He didn’t want to institutionalize her. He also didn’t know how we were going to pay for it.
I soon learned what my father already knew: Brochure after brochure in his files showed glossy photos of luxury dementia-care units in our area with twenty-four-hour supervision, secured access to prevent patients from wandering, and life-enrichment programs for the memory-impaired. I called them. A family member toured many of them. Most cost between $4,000 and $6,000 a month out-of-pocket. My dad made just under $29,000 a year working as a welder in the maintenance department at the University of South Carolina. His house was on the brink of foreclosure. Years of health crises had left him and Jackie with very little savings. The annual cost of an assisted-living facility with dementia care was more than double what my father made annually and nearly four times Jackie’s income. What I had assumed was procrastination or denial on my father’s part was really paralysis.
Hospitals, though, do not like you to overstay your welcome, and Jackie had not been a model patient. More than once, she had gotten out of bed and wandered down the hall and into other patients’ rooms. She got agitated, and the staff had to physically restrain her, wrapping her in a vest so she could no longer move. She grew so fitful that a doctor prescribed her a regimen of anti-anxiety drugs, hoping she would just go to sleep.
On the day Jackie was discharged, it was nearly impossible to wake her. The combination of medication and a new environment had made her sleeping patterns even more erratic than usual. She appeared lethargic to the point of being catatonic.
Soon, however, she became more aggresive. She gripped the sheets tighter each time I tried to remove them. When I finally had her sitting up, she didn’t want to put on the pair of pants I had brought her. I lifted her hospital gown to put them on her myself. “Stop! Stop!” she yelled. “What are you doing?” In a flash of anger, she pulled her fist back to hit me. She relented when I grabbed her hand.
“What are you doing?” she kept repeating, as we fought over getting dressed. “What are you doing?”
The truth was I didn’t know what I was doing. And I didn’t know what we were going to do.
The first diagnosed Alzheimer’s patient was a woman named Auguste Deter, who entered a German mental hospital in 1901, at the age of fifty-one, after her family could no longer care for her at home. Her memory and language skills were poor, she had not been sleeping, and she seemed delusional. “I have lost myself,” she told Dr. Alois Alzheimer, the physician who examined her. Deter spent the next four and a half years institutionalized, as her mind and body functions deteriorated. She died in 1906, and afterward, when Alzheimer examined her brain tissue under a microscope, he spotted the atrophy, tangles, and plaques that still signify the disease.
Memory loss has been associated with aging for millennia, but it was not until after Dr. Alzheimer’s discovery that scientists really began to wonder whether senility was an abnormal part of growing old. Until the twentieth century, life expectancy for Americans was relatively low by today’s standards (around forty-seven years in 1900). But as more and more people lived into their seventies and eighties, to the years when dementia most often strikes, the disease became much more common. In 1974, Congress passed a law establishing the National Institute on Aging to deal with the burgeoning elderly population’s needs. Within a decade of its launch, NIA had established ten Alzheimer’s disease research centers. At the same time, there was a growing public awareness of the condition. President Reagan designated National Alzheimer’s Disease Week in November 1982, only to reveal his own struggle with the illness a dozen years later.
Today, as the baby boomers age, Alzheimer’s has reached epidemic proportions. More than 5 million Americans currently have the disease, with more than 400,000 new cases each year—numbers that are expected to at least double by 2050. While Alzheimer’s is the most common cause of dementia, there are dozens of related disorders, including Parkinson’s, dementia with Lewy bodies, vascular dementia, and fronto-temporal dementia.
The rhetoric around Alzheimer’s advocacy in recent years has been focused on finding a cure. But the U.S. government spends less than $600 million annually on Alzheimer’s research—compared with $3 billion for HIV/AIDS and more than $5 billion for cancer. And of the ten leading causes of death in the United States, Alzheimer’s is the only one without a means to prevent or treat it. Although decades of research have yielded important discoveries, Alzheimer’s largely remains a mystery. “Anybody who says we’re getting close to a cure is lying,” says Howard Gleckman, a senior fellow at the Urban Institute and an elder-care expert.
Lost too often in the discussion about a cure has been a much more basic, more immediate, and in many ways more important question: How can we better care for those who suffer from the disease? Dementia comes with staggering economic consequences, but it’s not the drugs or medical interventions that have the biggest price tag; it’s the care that dementia patients need. Last year, a landmark Rand study identified dementia as the most expensive American ailment. The study estimated that dementia care purchased in the marketplace—including nursing-home stays and Medicare expenditures—cost $109 billion in 2010, more than was spent on heart disease or cancer. “It’s so costly because of the intensity of care that a demented person requires,” Michael Hurd, who led the study, told me. Society spends up to $56,000 for each dementia case annually, and the price of dementia care nationwide increases to $215 billion per year when the value of informal care from relatives and volunteers is included.
Most of the care provided to Americans with dementia comes from unpaid family members. “Family caregivers really are the backbone of long-term care in this country,” says John Schall of the Caregiver Action Network. A majority of dementia patients live and die at home—which saves taxpayers in the long run but forces caregivers to sacrifice work and wages. Caregiving can be a long, grueling task: Alzheimer’s patients live, on average, eight to ten years after diagnosis, and they eventually need round-the-clock care. There are more than 15 million unpaid dementia caregivers in the United States, according to the Alzheimer’s Association. Most of them are women, though a growing number are men; nearly 1 million are between the ages of eighteen and twenty-nine; some are seniors themselves, caring for a disabled spouse; and many are in their forties and f
ifties, still working, and sometimes caring for children and an aging parent. At the same time, family systems are changing, with fewer children born to help older adults, and more mobile populations, meaning families live hundreds of miles apart, severing the support networks that traditionally helped spread the burden of care.
“We have no rational policy to support caregivers,” says Dr. Joanne Lynn, director of the Altarum Institute’s Center for Elder Care and Advanced Illness. Public supports such as Medicare and Medicaid do not adequately cover the care dementia patients need at home. There are not appropriate Medicare reimbursements for a family member to meet with medical personnel about care plans and ongoing supports. State programs for relief services—such as respite care or adult day programs that allow family members to take a break—are sporadic. Meanwhile, the average cost of caring for a patient in a skilled nursing facility is more than $80,000 a year. As Dr. Bruce Chernof of the SCAN Foundation, which advocates for better care of older adults, puts it: “We need to move beyond saying family caregivers need to be ‘supported,’ and we need to begin to really think about what that means.”
For years, the go-to public-policy stance has been to recommend that more people buy long-term-care insurance, but very few do. According to the Robert Wood Johnson Foundation, less than 8 percent of Americans have purchased long-term-care insurance policies that could be drawn on in the case of cognitive impairment. These policies can be expensive, and the price only goes up for individuals as they age and their health worsens. Moreover, the financial burden may be compounded when they move onto fixed incomes. In recent years, companies have been pulling out of the long-term-care market, finding the policies unsustainable. Some now only offer policies that provide three to five years of care—about half of the time a typical Alzheimer’s patient needs support.
The Affordable Care Act tried to remedy the dearth of options. Enacted as part of the health-care legislation, the CLASS Act offered voluntary, public long-term-care insurance. But in 2011, the Obama administration canceled the program before it ever got started, saying that it was not financially feasible. “It was not structured in a way that would get enough participation among the healthy to support the populations that would be served,” says Judy Feder, a public-policy professor at Georgetown University who researches long-term care.
Without an insurance safety net, the other option is for Americans to save enough for retirement to cover expenses out-of-pocket, but, again, very few do. The median amount that working-age American households have saved for retirement is $3,000, according to a National Institute on Retirement Security survey, and the Robert Wood Johnson Foundation reports that less than 10 percent of Americans save specifically for long-term care. “The full risk and caregiving burden and financial burden falls on the people who unpredictably get hit with long-term-care needs,” Feder says. “The money and the service is coming from somewhere—it’s coming at enormous cost, personal as well as financial, for families.”
These long-term-care costs were certainly a crucial factor for my family. In those first days in South Carolina, as I sifted through Jackie’s financial records, I found a copy of her old long-term-care policy. A few years before, my dad had begun to fill out a claim, only to find that Jackie had recently canceled the policy. We still don’t know why she stopped the plan—the cost, maybe? By the time we thought to ask, her mind was too far gone to know.
Without that slip of paper, our options were limited and the prices were high. So it seemed like a boon when we came across Lexington Gardens, an assisted-living facility two miles from my dad’s house. He could visit her whenever he wanted. It was clean and bright and had the feel of an upscale apartment building. It did not have a dementia-care unit, but the staff assured me that many residents had dementia and the staff was experienced in caring for residents with memory impairment. At $2,350 a month, it was by far the most affordable option we found. A staffer even mentioned that the cost might go down after Jackie had settled in and needed less help. They put her in a private room on the second floor. At our request, they painted the walls a happy shade of yellow. Extended family helped me haul pieces of her furniture upstairs, and we hung artwork from her home, all meant to give the space some sense of familiarity.
On her first night in the new room, I hesitated to leave her. I couldn’t decide whether to shut her door—what if she needed something? Who would hear her call? As I left, I kept the door open a crack and, walking away, hoped for the best.
There is a story told in my family about a defining moment in the lives of my father and aunt. My dad was eighteen, the last child living at home, when his mother collapsed in the den, likely from a stroke. He ran to her, and she died in his arms. Her death, while sudden, was not unexpected. From the time my father was born, his mother’s body was riddled with diabetes, in an era when the disease meant a certain, steady decline. She suffered a series of debilitating strokes, and by the time he was twelve, she had gone blind. Jackie was the only girl in the family and became a surrogate mother. She cooked and she cleaned and she took care of her younger brother.
When I think of Jackie’s relationship to my father, John, it is this: part sister, part mother. Their bond puts his eventual care of her into sharper focus. After he and my mother divorced, my father moved back to his family homestead, to the house next to Jackie’s. My aunt decorated my room with a floral bedspread and matching curtains. I was nine at the time, and most of the weekends I spent with my dad were really spent next door at Jackie’s house, on her screened-in back porch or sitting with her in the den. She was the keeper of our family stories, the one with all the photo albums and recipes. Every holiday and most Saturdays, I was there in her kitchen, eating at her table.
My aunt was married then, and had been since 1971. Her marriage to my Uncle Gerry was not a happy union. He was a stern man and often absent, away working shifts as a security guard and later as a police officer. Though they never divorced, he finally left while I was in college. He took their savings, opened a line of credit on their house, and moved to Costa Rica. I suspect now that, as her spouse, he saw what we would later learn: that her mind was failing and falling further into dementia. He came home once, but after seeing Jackie’s diminished state, he told my father, “I’m not ever coming back again.” He died in 2011 of a heart attack, leaving Jackie none of his assets. My father and I arranged through the embassy in San Jose to have his body cremated and his ashes scattered off the coast.
By then, it had been six years since I had first noticed something was wrong with Jackie. In 2005, on a trip to my college graduation, she forgot her insulin—a mistake so unlike her, given her mother’s history. A relative had to drive her to a twenty-four-hour pharmacy in the middle of the night. Three months later, when my father was having another round of heart surgery, Jackie was with me in the waiting room, but she seemed confused and incapable of helping me make important decisions. Later that summer, she would call me at odd hours, in tears. She wasn’t sleeping, she said. Soon she stopped calling me altogether.
That fall, after a battery of tests, we had an answer: dementia. Later, it was labeled probable early-onset Alzheimer’s. A lawyer prepared a living will and power-of-attorney papers, which I signed along with my dad. I had always known I would take care of Jackie in her old age. But dementia at age fifty-nine was not what any of us had imagined.
In the initial stages of the disease, my dad and aunt managed quite well. He would walk the well-worn path between their yards, waking her in the morning, cooking her meals, and putting her to bed at night. His job was just a six-minute drive away from their homes, so he could drop by to check on her during the day. She wasn’t a wanderer then, and she easily handed over the keys to her car.
My dad kept a burgundy binder for Jackie with hand-drawn charts, where she recorded her daily activities, keeping a log for doctors’ visits. She could note which medicines she took at what hour, how she was sleeping and feeling. “I’ve just gotten up.
Boy, do I feel rested,” she wrote in May 2007. In the early years, she could busy herself around the house. “Thursday morning, worked in yard, pulling weeds and creating a new flower bed.” But still she knew she wasn’t well. “It’s 3:16 a.m. and I’m still up,” she wrote. “I must remember to set an alarm.… I’ve got to get back to a normal, day-and-night schedule.”
My father became increasingly worried about their futures, and he fretted especially about money. The truth was that Jackie had always been a spender, not a saver. She was terrible with money and had only gotten worse with it as her Alzheimer’s progressed, which is typical of those with the disease. Once, my dad came home to find a pile of boxes from a home-shopping network filled with expensive orders she didn’t remember. She racked up more than $30,000 on her credit cards before he realized it. He closed the accounts and started working with the companies to pay off her debt. The disease seemed to age him alongside her.
Alzheimer’s places a heavy toll on family caregivers. Their own health suffers. Dementia caregivers report higher rates of depression and stress than the general population. Some studies show they have an increased risk for heart disease and stroke as well as higher mortality rates. Their own use of medical services, including emergency-room visits and doctors’ appointments, goes up, and their yearly health-care costs increase by nearly $5,000, according to research from the University of Pittsburgh and the National Alliance for Caregiving. “Caring for a person with dementia is particularly challenging, causing more severe negative health effects than other types of caregiving,” reads an article in the American Journal of Nursing.
When I brought my father home from the hospital, his heart and kidneys were failing. There was talk of more surgery, but only to give him a better quality of life, not to cure him. His body was breaking down, and his own hold on life, we both knew, was tenuous.
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