Doris Cawthon had lived her whole life in Jacksonville, Texas, and she didn't see any reason for that to change. But her children did.
Until she fell, it was an ordinary morning. Doris Louise Cawthon, then 86, ambled through the routine she'd savored in her East Texas town for decades. Awake with the chickens, as her three daughters like to say, she popped out to the front porch to water her geraniums, smile at the chirping birds, wave at the neighbors. Then she took some soup bones to the yard for the new love of her life: an adoring spotted mutt named Macy.
The dog wriggled with her usual glee as Doris approached. And then, with one step, the ground beneath Doris's right foot seemed to vanish. She had stumbled into a small grass-tangled hole that Macy had dug while alone, and in an instant, Doris was sprawled on the ground.
It didn't hurt much. Doris wore an emergency-alert device around her neck, as her daughters had insisted, but she didn't think to use it. Instead, she called out to neighbors in the yard next door. They hoisted her onto a lawn chair; soon, she was on the phone with her daughter Paige in Houston.
"I think I bruised my leg," Doris told her.
"Mother," Paige replied, "I think you should go to the emergency room."
By the time Paige arrived at her mother's house, a four-hour drive away, life for both of them had changed forever. Doris had broken her hip. Immediate surgery was needed to replace the joint, and when Doris awoke, the doctor told her bluntly: She could not go back home alone. For all practical purposes, the life Doris loved for most of a century was over.
By 2020 some 6.6 million Americans will be age 85 or older, up from 4.3 million in 2000. In many ways these numbers reflect a triumph: Thanks to better medical care, people live longer than they did a hundred years ago. But the longer we live, the more likely it is we'll need assistance with such tasks as bathing, dressing and eating. The great majority of Americans over age 65 will eventually need such help, according to the U.S. Department of Health and Human Services. Already, about 2 million live in facilities designed to provide it.
Yet despite the wholesale aging of our population, finding a suitable home for an older person tends to be a lonely, bewildering odyssey, as Doris Cawthon's daughters discovered.
"I couldn't eat or hardly even think," Paige recalls of the panicked weeks after her mother's fall. While Doris recuperated in a rehab facility near her longtime home, Paige and the rest of the family scrambled to find a place where she could not only finish healing but live and thrive. As with many American families, it would take more than one try.
The daughter of college-educated schoolteachers, Doris Cawthon had felt lucky to still be part of a community whose members knew and nurtured one another. Even during the Depression, when food could be scarce, Doris remembers, what they ate was fresh, flavorful and always shared: wild blackberries baked into cobblers, sweet potatoes sliced into nutmeg-spiced pies.
Today, with her lovely, lineless skin, merry eyes, and girlish voice, Doris wears the years lightly. But growing up in East Texas, especially for an African American girl like her, meant limitations: on medical care, on jobs, on women's options. When Doris was a newlywed, her mother-in-law was injured in a fall. Because the older woman couldn't take care of herself, she moved in with her son and Doris.
"What alternatives were there?" Doris asks. She, too, expected one day to live with her adult children — in Jacksonville.
"She never verbalized it," Paige says. "But it was assumed."
Paige and her sisters, though, were like millions of other boomers whose frenetic lives differed radically from those of their parents. Their households couldn't easily accommodate extended families. Paige, who is divorced, works outside the home and travels often. She and her sisters also moved far from where they were raised. Even if they could somehow care for their mother at home, that no longer meant the slow-moving East Texas community of their birth but, rather, Houston.
Doris Cawthon had never lived outside of Jacksonville. For their mother, Paige knew, any change at all would represent a form of homelessness.
Like aging itself, some of the pain in finding a new home for an elder relative is unavoidable. "There is a kind of grief associated with this kind of move," says geriatrician Bill Thomas, a leader in the national movement to improve senior living conditions. "The grief is loss. Your dad was this amazing guy who was strong and smart and funny, who took care of you … and now your dad is going to be living on the third floor of a nursing home."
When it's possible to delay or deny that kind of pain, most of us usually will. But that same failure to confront a parent's or spouse's looming needs helps to overwhelm us when those needs spike.
Delay and denial aren't the only complications, though. Systemic factors can make the decision more arduous than it needs to be, activists say. The long-term-care industry is very compartmentalized, with little coordination among the various kinds of facilities or care providers. Navigating the system can be nightmarish for specialists, let alone for neophytes.
"If you want to get good at a skill, you do it over and over again," Thomas says. "But people who do this for relatives get one or two shots. People sometimes complain about how difficult it is to buy a car. You buy a bunch of cars in your lifetime. How many times do you find a place for your elder relative to live?"
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Even for an experienced school administrator like Paige Cawthon, this was a crash course. Mastering local housing and care options, and then assessing whether these choices suited her mother's needs, seemed at times insurmountable. "Someone should write a book about this experience," Paige observes.
Many have. Physician and academic gerontologist Robert L. Kane wrote one of the best-known accounts, after being shocked by the obstacles he encountered finding care for his own mother. The title: It Shouldn't Be This Way.
Doris was failing. In the two weeks since she had entered the rehab center, the color had drained from her face and she'd stopped eating. The woman who had teased her nieces in her living room hours after her fall, and who walked in the hospital just days after surgery, now refused to get out of bed. It wasn't because the facility wasn't caring for her properly. Doris was homesick.
Millions of Americans will eventually face the same violent wrench from their past routines and self-image. Often pressed by finances, two-thirds of disabled elders depend completely on relatives to look after them. According to one estimate, one in four U.S. households now cares for an elderly relative. Paige, while not rich, could at least give her mother more choices than most. An education consultant who had just retired from 27 years directing and owning two schools, she was determined to bring the same authority to finding a home for her mother.
Doris, for her part, spoke little about the future, but she made one thing consistently clear: She wanted to stay in Jacksonville. She had grown up there, raised five children there — including two sons, who died in adulthood — and spent her married life there. As a widow, she remained immersed in the community. Perched on the porch of her old wooden ranch house, she welcomed visiting neighbors and relatives nearly every day. On Sundays she donned a smart hat and sang in the choir of the local Baptist church.
Paige and her sisters had long fretted about their mother's living so far away. Doris, a diabetic, needed twice-daily insulin injections, which she had been giving herself. Once, Paige arrived for a visit to find Doris nearly unconscious from poorly managed blood sugar.
Four years ago, alarmed by their mother's growing frailty, the daughters had coaxed Doris to try an extended visit to Houston. She mostly stayed with Paige's sister Regina in the suburbs. The neighborhood was verdant and quiet, and Doris had a first-floor bedroom suite.
But the setup wasn't ideal. Regina and her husband worked long hours; their teenage children were busy with schoolwork. Straggling home in the evenings, the family had scant energy to socialize with Doris. With no porch, no close-by neighbors, and no place to walk, she felt bored and alone.
Then things got worse. One day, during a short stay at Paige's home, Doris missed the last step on a staircase and tumbled onto the glossy marble hallway, fracturing a knee. The family arranged for home health care aides to visit Doris at Regina's house during her recovery. To Doris' surprise, she didn't entirely mind, though she was taken aback when two male attendants first showed up to bathe her. "But you know," she told Paige later, "they did a good job."
Several months after arriving, Doris decided to return home to Jacksonville, where one of her sons was still living at the time. He died of congestive heart failure in 2010, leaving no spouse or children. About a year after that, Doris fell and broke her hip.
Knowing that Doris was recuperating from her hip injury so far from her surviving children troubled the sisters greatly. Yet respecting her wishes seemed, at that point, just as necessary to her health.
When Paige visited the Jacksonville rehab center, though, Doris looked worse than her daughter had ever seen her. She needed skilled nursing; she couldn't dress or go to the bathroom by herself. Helpless, cut off from a lifetime of relationships even in the midst of her hometown, she had plunged into depression.
"Oh, I'm all right. How are you?" she'd answer softly if someone asked. She had no idea she was depressed, and at first, neither did Paige. She simply thought her mother was dying.
"I did not even know whom to talk to," Paige says. "It was eating me up. My gosh, I thought, 'I just pray this is not the last time I see my mom alive.' "
But Paige already had a rudimentary plan B. Well before Doris's accident, Paige had been visiting facilities near her home in Houston, since she knew she'd never move back to Jacksonville. The place she preferred, a rehab and assisted living facility in the suburb of Sugar Land, wasn't the most elegant of those in her price range. But the daughter of Paige's cousin worked there. "That rapport was more important than having a luxury, plush place," says Paige. And the facility had an opening.
At about $5,000 a month, it was still costly. Paige's late father, a veteran, had planned as well as he could for Doris's future, but the monthly income he left didn't cover the cost of the Sugar Land home. The daughters, all professionals, would have to share the rest of the burden. For now — until they could find some alternative — they could afford it. And Paige had gradually come to understand that her mother was depressed, not dying. She simply needed to be someplace where she felt hope.
Persuading Doris to leave Jacksonville, however, wouldn't be easy.
Paige knew that Doris respected medical authorities and, above all, valued good manners. Inviting a psychiatrist friend to come along, Paige headed to Jacksonville.
When she arrived at the rehab center, Paige first spoke privately to Doris about her concerns. Then she invited the psychiatrist into the room. He told Doris that he believed moving to the Sugar Land facility, closer to family, would be better for her physical health.
Doris changed her mind. Quietly, she let the two pack her possessions, and the three climbed into Paige's Jeep and headed for Houston.
If finding a haven for her mother flummoxed someone like Paige Cawthon, is the process easy for anyone?
Rarely, says Carmen Castro, long-term-care ombudsman for Harris County, Texas, where Houston is located. That's because the choice is often made under intense pressure: A broken bone or dementia-related episode suddenly makes independent living impossible.
On top of this, Castro says, many people have given a parent or spouse an impossible pledge: I'll never put you into a nursing home. It's easy to understand such a promise. Moving to a nursing home, even a well-run one, means giving up control. Busy staff can be slow to answer call lights; simple choices such as when to get coffee or bathe can be ripped away.
But not every elder who needs help needs a nursing home. For people who don't require daily medical care, just some support with tasks such as dressing and cooking, assisted living facilities (ALFs) offer a middle ground. Residents get help as they need it but choose their own activities and make their own schedules.
Even the nursing home experience is changing. Technically, the difference between nursing homes and ALFs has to do with whether medical care is provided round the clock. Recently, though, many nursing homes have added assisted living wings. The two sides of a facility might fall into different categories, but the cultures are often less distinct. Efforts to improve nursing home life further blur the differences, according to Stateline, a publication of the Pew Charitable Trusts. Rhode Island now grades nursing facilities on how much flexibility they permit in residents' routines; Arkansas boosts Medicaid reimbursement for nursing homes that achieve a more homelike feeling.
But the most radical rethinking of long-term care springs from activists such as Bill Thomas, creator of the experimental Green House project. Its stated goal: to replace "large, impersonal nursing facilities with inviting, comfortable, social living spaces that … help elders to live happier, more satisfying lives." Grouped in an airy house with a central dining room, from 9 to 12 Green House residents enjoy private bedrooms and baths. Caregivers attend to their needs and also socialize with them. Skilled health professionals, meanwhile, visit on a rotating basis. Nationwide, more than 100 Green House communities have opened their doors.
Families without such options who must make hard choices now should hire a social worker or other expert to help them sort the alternatives, Thomas says. Those who can't afford this should call their local Area Agency on Aging (AAA), federally funded agencies that serve every county.
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If possible, families should build a relationship with these agencies before the need arises. "There's an old saying: Dig the well before you're thirsty," Thomas says. "Your AAA is the place where you get connected on everything. They'll talk to you for free; they'll be delighted." When people get to know these agencies, it can make a difference on a broader level, he adds: "The more that ordinary people know about what's available to elders in their communities, the more educated they will be as consumers. And as educated consumers, they can demand changes and additions to the existing system."
But often, people don't know precisely what to seek for their older relatives. Start by asking them, while they're still healthy, what they will want when they can no longer take care of themselves, ombudsman Castro urges. "Ask them, 'What if you were to become incapacitated?' Ask about do-not-resuscitate orders. Ask about finances." And, she adds, ask what they would need to feel content in a new environment.
As mundane as they may seem, these details become precious when a family member can no longer speak for him- or herself. When an elder can't communicate, "it's like when a library burns to the ground," Thomas says. "You're losing access to information that right now can seem not that relevant. But at the moment of crisis, it will help you be an advocate."
A few weeks after bringing Doris to Sugar Land, Paige was visiting her mother in the rehabilitation center's garden. Still in a wheelchair, but sitting up straight, prettily dressed and smiling, Doris had clearly improved. But she was still fragile, Paige saw. Though the center was pleasant, Doris could never thrive there.
Born in a generation accustomed to hardship, Doris tended to be laconic about her needs. Paige, for her part, had never thought of quizzing her. Today, though, she decided to ask.
"What do you need to feel happy, Mother?" she asked.
Doris paused to think. "Getting up early," she answered. "Going out to my porch and seeing people coming and going. Hearing the birds. Speaking to people."
"What do you want to be able to eat?"
"Vegetables — fresh vegetables," Doris said. "With seasoning."
"What kind of people do you want to be around?"
"Babies, grandkids, adults. I want to hug people," Doris said. Resolutely, she added: "And I wish I could feed someone, take care of them."
When it was time to leave, Paige looked around fretfully. Even to her critical eye, the facility looked nice. In one corner a woman read aloud from a book to a half-dozen residents. In the dining room, jazz wafted over diners, four to a table. It was an environment Paige herself wouldn't have minded if she were in Doris's position. In addition to the rehab center, which Doris no longer needed, the facility had an assisted living option.
But Doris wanted something different. And that got Paige thinking. She owned a rental property that had just gone vacant. She talked to a niece, a stay-at-home mother of a 3-year-old son, about living there with Doris. The young woman could keep an eye on her mother's health, and Doris, who adored the boy, could spoil him and let him chase her around the house. Even Doris's dog, Macy, who had been left in the care of Doris's handyman back home, would be welcome. It wasn't Jacksonville, but it had some of what Doris loved there.
The basic elements of Paige's plan captured several qualities of the most successful long-term-care elder environments. A key one, says Bill Thomas, is reciprocity: "Each generation has something to contribute to the other."
But the scheme unraveled when Paige's niece realized she needed a full-time job. Instead, Doris moved back in with daughter Regina, who had bought a town house near the Sugar Land facility. Within a year, Doris's third daughter, Janice, bought the town house next door, and Paige moved to a new place within a couple of miles of her sisters. Living closer together, the three could look after their mother more easily.
With everyone still working, no one could keep Doris company during the day. Filled with misgivings, the sisters signed her up for adult day care.
Astonishingly, Doris loved it. "She's more responsive," Paige now says in wonderment. "She's getting around better." A powerful motivator, it seems, is a 92-year-old woman at the facility who seems never to stop moving, albeit with a walker. Doris entered the program in a wheelchair. But soon she swapped the chair for a walker of her own.
Paige knows how lucky the family is for this latest turn. She also knows that this, too, might not work out. Finding long-term care is, at best, a shifting endeavor; the decision-making process, so full of anxieties, is a continuum. All Paige can do is fight to keep her mother physically cared for and emotionally whole.
"We're still feeling our way," Paige says. "At some point my mother is going to be less mobile than she is now, and we have to prepare for that. It may be 2 years from now, or 10. But there will be another change."
Claudia Kolker is the author of The Immigrant Advantage: What We Can Learn From Newcomers to America About Health, Happiness, and Hope. She lives in Houston with her family.
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