After Jackie had lived at Lexington Gardens a few months, I wondered if I had made a mistake. The staff did not seem well trained to handle Alzheimer’s after all. They would try to administer her medication in the early evening, even though this was the time of day she was most agitated—a very common syndrome in dementia patients, called sundowning. After an inspection from the state health department, Lexington Gardens informed me that they had been told to move Jackie from the second to the first floor because she couldn’t walk well. She was getting frequent urinary tract infections. Staffers didn’t seem to keep her on a schedule. Several times when I stopped by after eleven a.m. she was still in bed, not dressed or fed or toileted, which I felt only made her night outbursts more frequent.
I got calls from Lexington Gardens in the middle of the night and at the office. I had trouble sleeping. My job suffered. I barely wrote anything. I took days and weeks off. I answered work calls from the assisted-living parking lot. I tried to work in waiting rooms.
In some respects, it felt hard to complain about the facility, though. Many of the staffers were nursing aides and medication technicians making low wages—on average these jobs pay between eight and twelve dollars an hour—and they labored long hours doing the work I deemed too difficult.
Some incidents were more dangerous than others. One night, a staff member called to let me know that Jackie had walked out the back door unnoticed and wandered over to a nearby building. Another time, the facility notified me that Jackie had gone out the front door and was found sitting on the sidewalk. How long she was out there, I don’t know. Lexington Gardens sits on a frontage road where cars speed past. Just over a grassy hill is a busy interstate. All I could think about was what would have happened if she had walked a little farther.
Jackie was also falling frequently. She was found in the kitchen on the floor; she was found repeatedly on the floor of her room, according to her medical records. Each time, the facility would send her unaccompanied to the emergency room to be examined. (This is not an unusual practice for some assisted-living facilities.) Jackie went to the ER eleven times in nine months for mostly routine examinations. My mother often became the proxy for her former sister-in-law when I wasn’t in town. She would meet her at the hospital and keep me posted if I needed to catch the next flight home.
The hospital seemed like the least efficient place to treat Jackie. “You go in hospital emergency departments and they’re filled with patients with dementia who are there because they fell, because they got bedsores or urinary tract infections, because they wandered,” Gleckman explains. Says Carol Steinberg of the Alzheimer’s Foundation of America: “Because there is a lack of medical-school training in dementia care, sometimes I think there’s a lack of understanding on the part of the hospital staff. If you think of a typical ER—massive confusion, crowds of people—then think of an Alzheimer’s patient who has confusion already and limited communication skills, that environment can be very frightening at a time when a person’s health is at risk already.”
Health-care providers often didn’t know what to tell me. I couldn’t seem to find an expert who could really help me navigate the system. “I don’t want to blame my primary-care colleagues, but they haven’t been trained,” says Dr. Pierre Tariot, an internist and psychiatrist who runs the Banner Alzheimer’s Institute. Only “a very small minority of patients with dementia” are treated appropriately for their diagnosis, he explains. Meanwhile, “more than half of dementia patients receive grossly inappropriate treatment that actually makes symptoms worse,” including drugs to calm agitation that make patients more prone to falling.
After one of my aunt’s more harrowing trips to the hospital, a kind emergency-room doctor wrote the name of a neurologist she trusted on a slip of paper. We had an appointment the following month, and that specialist was the closest I ever came to coordinating Jackie’s care. But aside from removing extraneous drugs from Jackie’s regimen, there wasn’t much she could do. It was hard to tell where Jackie fit in the Alzheimer’s staging process. Given her youth and her relatively good physical health, the neurologist advised me to prepare for the long haul: She could live with the disease another ten years.
To prepare financially for the impending decade, I began selling off Jackie’s possessions. I hired an auction house to sell anything of value—her china, her furniture, her silver. A veteran bought her used car. A local jeweler offered cash for her gold bangles and necklaces. For a few months, checks began showing up, in amounts of $100 and $500 and $2,000. But the money was gone to the assisted-living facility almost as soon as it arrived.
By chance, I also discovered that there was one bright spot in Jackie’s marriage to Gerry: Through him, she was entitled to monetary military benefits. Gerry had been a decorated Vietnam veteran and served in the army for more than twenty years, and Jackie should have been receiving a pension since his death. She was also due funds from the underused and little-known Aid and Attendance program, which supplements the pensions of veterans and their spouses to meet needs including custodial care. Both benefits together could have given Jackie an additional income of at least $2,500 per month. I filled out the paperwork with the Veterans Benefits Administration. We were told to sit tight. The process for Aid and Attendance can take up to nine months or more. So we waited.
My father died on a Saturday morning at the end of October 2012. I was underground on the New York City subway when I found out. A family member had been trying to reach me and couldn’t because of the lack of cell service, so in her own state of shock she frantically texted, “911 911 please call johnny passed!”—which went through. At the next stop I rushed out of the station and up the stairs, exiting somewhere on the Upper West Side. I called my mom. I started crying hysterically. A man digging through a garbage can asked if I was OK. Two women saw me from the corner and rushed to my side. “My dad died,” I told them. “My dad just died.” They hailed me a taxi, which whisked me off to the airport and onto a flight to South Carolina.
The day my father died, he had gotten up and showered. He was freshly shaven when he was found. He had the radio on, and his lunch was cooking in the oven. Somewhere in the midst of this routine, he sat down on the sofa and closed his eyes and didn’t wake up. In a way, it was the ending he had wanted. He died at home, not in a hospital. He was sixty-three.
I decided to tell Jackie the news, against the advice of some clinicians and on the advice of others. No one seemed in agreement on whether it would inflict undue pain, and I felt a compulsion to let her know, even if she didn’t remember. Perhaps it was selfish; she was the only other person who would have mourned him like I did. When I told her, she said she couldn’t believe it. She didn’t cry. We sat in silence for a few minutes. Then she said, “My mother will be here soon.” “She will?” I asked. “We’re going to Georgia for a funeral,” she said, and began to recall in barely coherent phrases the death of a relative who had passed some sixty years ago.
For months afterward, when we got into the car or were sitting at the doctor’s office, Jackie would ask, “Where is Johnny? Have you seen Johnny?” And I would reply, in the calmest voice I could muster, “He’s not here right now,” as if at any moment he would walk through the door.
In January 2013, Jackie’s primary-care doctor, whom she saw through Lexington Gardens, spotted a sore on the bottom of her toe. Such lesions can be dangerous for the ill or elderly, especially those with a history of diabetes; they can lead to infection, gangrene, or possible amputation. Lexington Gardens had just hired a new resident-care director, who called to let me know that the situation was being handled. She said Jackie needed to see a wound-care specialist as soon as possible and that she would make the arrangements. But in late March, I learned that Jackie had not been to the specialist at all over the past two months.
In a meeting the next day with the executive director and another staffer, I was told the care director responsible for that lapse had left some weeks before fo
r unrelated reasons. I also learned there were limits to how long a resident can stay in assisted living with a wound like Jackie’s. Her foot was noticeably worse. She would now need home-health nurses to come in several times a week to change bandages, and she would need weekly appointments at a local wound-care center.
She would also need more-intensive care at the facility—including added assistance getting to and from meals, more frequent safety checks, and extra help with hygiene. For these tasks and others, we would need to pay Lexington Gardens a higher rate of $3,220 per month, which I signed off on. One of the most dedicated staffers took to keeping Jackie in the office with her, to make sure she didn’t fall. I wanted the arrangement to work. I knew that transferring her to another facility with more supports would be twice the cost. I kept thinking if I could just get her veterans’ benefits, if I could just sell her house, if I could just get my feet under me, we could find a better situation.
Ultimately, the decision wasn’t mine to make. Three weeks after my meeting with the executive director, I received a letter in the mail from Lexington Gardens. “In review of Ms. Belcoe’s incidents and her daily care needs, it appears that Ms. Belcoe has reached her maximum benefit from residing in an assisted living environment,” the executive director wrote. “Ms. Belcoe has had some type of unsafe event every month consistently since August 2012. She remains an extremely high fall risk and her cognition has declined to the point where she has become a threat to herself.”
Jackie was being kicked out. In hindsight, it was the responsible thing for Lexington Gardens to do: The home simply wasn’t capable of taking care of a patient at her stage of dementia. The problem was that the types of homes which could provide this care all seemed out of our price range. Still, I had no choice: I had thirty days to find her a new place to live.
Assisted-living facilities are regulated by the states, unlike nursing homes, which are regulated by the federal government. Assisted living has become a booming industry over the last twenty years and provides many Americans with stopgap care that is less intensive than the skilled medical assistance provided by nursing homes. Despite the lower level of care, these facilities often house very ill people, including those with advanced dementia. (At least 42 percent of assisted-living residents have dementia, according to the Centers for Disease Control and Prevention.) The definition of what constitutes an assisted-living facility is murky, and the quality of care varies. These facilities can range from dementia care units for late-stage Alzheimer’s patients to rooms that a health-care worker rents out of his or her private home. “Some of these places are absolute hellholes,” Gleckman says. “They’re frankly dangerous, and you need to have enough regulation to prevent that.”
Lexington Gardens was part of Emeritus Senior Living, the largest chain of assisted-living facilities in the country. Two months after Jackie was discharged from Lexington Gardens, ProPublica and Frontline released an investigative series alleging a host of problems and neglect at Emeritus residences. Reporters A. C. Thompson and Jonathan Jones wrote that in 2004 a woman with Alzheimer’s in a Texas Emeritus facility had wandered outside and frozen to death. At an Emeritus home in Georgia in 2009, a man with dementia died after swallowing dishwashing liquid that was supposed to be in a secured cabinet. In 2012, a woman in a Pennsylvania Emeritus facility died in a locked bathroom, and it took the staff thirty-six hours to notice. In some of the reported incidents, families had already brought lawsuits against Emeritus; one case involved a woman who died after her wounds were not properly treated, resulting in a $22.9 million verdict against the company.
In an employee memo at the time (which ProPublica published), Emeritus characterized the series as an account of “some isolated and unfortunate incidents.” The company encouraged staff members to post positive comments about Emeritus through social media “to offset the potential negative backlash created.” Its public-relations team created a website called “Emeritus Facts” to counter twenty-nine negative claims in the report. Recently, company spokeswoman Kristin Puckett told me via e-mail, “The incidents that Frontline/ProPublica featured happened years ago and were exceptions to the quality care that takes place in our communities. We continue to make sure that our associates are well trained and our company has policies and procedures in place that promote quality care.”
In February 2014, Thompson broke the news that Emeritus was under federal investigation for its billing and business practices. Puckett told me that the company is “cooperating fully with this ongoing investigation.” (Lexington Gardens was not mentioned in the original ProPublica/Frontline series, or in Thompson’s February report.) On July 31, 2014, Emeritus merged with another large company, Brookdale Senior Living. The merger means the new company—to be known as Brookdale Senior Living—will now care for more than 112,000 seniors in forty-six states.
Less than a year after we left Lexington Gardens, but before the merger with Brookdale, there was a complete turnover in the facility’s management staff, except for maintenance, according to the home’s online newsletter—a shift the company confirmed. Lexington Gardens did not comment for this article, referring questions to Brookdale, though it did send me a copy of Jackie’s records. Due to privacy concerns, Brookdale would not comment on the specifics of Jackie’s care.
Last year, I sent a letter to the South Carolina Department of Health and Environmental Control, detailing our family’s experiences at the facility. An official called me after he received my note and said the department would be looking into the case. When I followed up recently, I received a letter from the department stating that inspectors made an unannounced visit to Lexington Gardens in June 2014. They found that the facility was in violation of state laws and rules “in the areas of enforcing regulations, record maintenance, resident care/services and resident physical examination.” According to Puckett, “A plan of correction was submitted to the state within the required 15 days after receiving the citation.” She added, “The community has implemented the corrective action and is awaiting the state’s annual inspection.”
Last Summer, I began reaching out to other families dealing with Alzheimer’s. I wondered whether my family was alone in our struggles. What began as a personal endeavor quickly became a reporting project as I called people from local support groups, online networks, and regional chapters of the Alzheimer’s Association. Most of the family caregivers I found were as lost as I was.
I talked to a seventy-five-year-old man taking care of his eighty-two-year-old wife with Alzheimer’s. He had to keep working to support them, so he left her home during the day. “We’ve got a gas stove, and I’ve got to make sure the burners are off,” he said. Nights had so far been calm, but she wandered sometimes. “A couple of neighbors have caught her down at the end of the street. What kind of locks do I have to put on the door?” he asked me.
In Northern Virginia, I sat at Sarah Harris’s kitchen table and listened to her describe the night she decided to institutionalize her husband, who eventually died from Alzheimer’s. “He didn’t sleep at all. He walked around the house. He would walk and walk,” she said. “It was probably the one time that I was fearful. I was afraid to go to sleep because I didn’t know what he was going to do.” He cycled through three different facilities during the last two years of his life. “The first home, I hate to say it, but they were abusing him.” She said she found him soiled and tied down in restraints. The next assisted-living facility kicked him out because they were afraid he would injure another resident.
Joan Gershman, who lives in Florida, detailed her battles with Medicaid to get help for her husband in the months before he qualified for a nursing home. “You have to fight for every single thing. They deny, deny, deny. I asked for help at night because I couldn’t shower and change him by myself. ‘We’ll give you three days a week.’ When I said I needed more, they said, ‘You have to put him in assisted living.’ ‘I can’t afford assisted living.’ They said, ‘That’s too bad.’”
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In a support group I attended as a reporter, a woman about my age cried over putting her early-onset mother in a facility. For years, through college and after, she had shared an apartment with her mother so she could take care of her, but eventually she no longer could.
I began to think about bringing Jackie home to live with me. I was spending so much time with her and beginning to know her again and see the parts of her that had not disappeared. She was still funny. She tried to tell jokes. She liked riding in the car and eating ice cream. But the prospect of being her at-home caregiver was also terrifying. I would likely have to quit my job and leave behind my career, which I didn’t want to do. It was also unclear how we would make ends meet if I did. Some states have programs that pay family caregivers out of Medicaid funds, but the District of Columbia, where I live, does not. In South Carolina, I could have been paid as a caregiver if I was related to Jackie but not if I was her legal guardian, which I was. Then there was the matter of duration. I could imagine taking care of Jackie for a year, maybe two—but ten?
MaryAnne Sterling’s story resonated. An only child, she had been caring for her aging parents, both of whom developed dementia, since she was thirty. Last year, after she turned forty-seven, she and her husband realized they needed to start thinking about their own futures. She said, “We don’t have children. We don’t want to be a burden on anybody. If we don’t begin saving earnestly for retirement, who’s going to look after us?”
On an NBC broadcast with Maria Shriver, I heard Jim Crabtree’s experience, which was particularly chilling. His wife was diagnosed with Alzheimer’s at fifty-seven. “I was looking at ten years of care at six grand a month. Who has the money to do that?” he said to the camera. His ailing parents often looked after his wife while he was at work. In 2013, his eighty-four-year-old father, who also had dementia, shot Crabtree’s wife and mother before killing himself. “It sounds like a horrible, violent end, but in actuality it was a euthanasia that my father did,” Crabtree said. He called the triple murder-suicide a “mercy killing.”
The Best American Magazine Writing 2015 Page 40
