Plus: 6 Things These Caregivers Wish They’d Known Sooner
Lonnie Ali, wife of Muhammad Ali, shares her 10 Best Tips For Being a Caregiver.
There are only four kinds of people in this world,” former first lady Rosalynn Carter once wrote. “Those who have been caregivers, those who currently are caregivers, those who will be caregivers, those who will need caregivers.” Her comment is true now more than ever before. This is a nation of caregivers. You can see it in the numbers: Approximately 50 million Americans provide the majority of the help needed by relatives or friends who are elderly, ill, or disabled. And those figures are only going to grow—the number of people 65 and over is expected to double in the next 40 years, and the number of those over 85 will more than triple.
But the reality of caregiving is best understood not with statistics but through the stories of spouses, children, siblings, and friends who have stepped forward when a loved one needed them. Their experiences illustrate what’s new about caregiving these days, and what never changes.
What’s new: an economic climate that makes the cost of caregiving harder than ever to bear; an increasingly mobile society in which families may be separated by a continent when a crisis unfolds; and the ripple effects of divorce and the increasing numbers of people who are choosing to stay single, which mean that many people are reaching their middle years and beyond without a spouse or child at hand. What never changes: the fact that neither fame nor fortune nor physical gifts protects against sickness and old age. And the fact that no difficulty will keep family and friends from doing what they can to help. Meet some of the caregivers who have risen to the challenge. For all of them, the experience has been stressful. But it has also brought their lives new meaning and stretched their capacity to love.
Hope that floats like a butterfly
Lonnie Ali was six years old and had just gotten home from school in Louisville, Kentucky, when she saw a crowd of boys gathered around a handsome young man in a white shirt, a bow tie, and black dress pants. “Look,” said her mother, standing in the doorway, “that’s Cassius Clay.”
Clay, who would soon claim the first of three heavyweight boxing titles and adopt the Muslim name Muhammad Ali, made a point of calling the shy little girl over. And from then on, she recalls, whenever he visited his mother across the street, he stopped by her house as well. “He was like a big brother,” she says. “He’d sit and talk, and I’d believe what he said before I’d believe my father. I figured my father would tell me stuff just because he wanted to protect me, but Muhammad would tell it to me the way it was.”
They remained friends, even as he became a world champion and she went off to college, where she got a psychology degree and then an MBA. When she was 17, Lonnie says, she realized that she would marry him someday—“I knew it was fate,” she says. Twelve years later, she did, becoming the boxer’s fourth wife. Muhammad had recently been diagnosed with Parkinson’s disease, but the diagnosis didn’t faze Lonnie. “I knew the man, not the celebrity,” she says. “That’s who I loved. And he knew I would always be in his corner.”
For a long time, Muhammad’s disease barely slowed him down. Lonnie was more of a care partner than caregiver, nudging her husband to take his medicine and accompanying him to doctors’ appointments. But gradually, his symptoms became more intrusive. One turning point occurred about 15 years ago, when the couple were out to dinner in Boston. “Muhammad went to put food in his mouth and he froze,” she recalls—temporary immobility is characteristic of the disease. Another was when the famously animated boxer became stone-faced, also a classic sign of the disease. “Then I knew I had some challenges that I really needed to deal with and learn about,” Lonnie says.
The challenges have been practical, emotional, and psychological as much as medical. Lonnie has had to recognize her own limitations: At one point five years ago, as she cared for her husband, mothered their teenage son, Asaad, and ran a business, among other things, she felt so unfocused, she thought she had attention deficit disorder. “I went to the doctor and fell asleep in the waiting room,” she says. “The doctor said, ‘You don’t have ADD. You’re sleep-deprived.’”
She’s also had to learn to accept what she can’t control. Muhammad is still a big man, with piercing eyes and muscular arms, the result of working out every day. But his disease means that this man of unparalleled physical gifts now walks haltingly; once famous for his banter, he often sits in silence. “I’ve been with him for so long, I can basically look at him and tell what he wants and needs,” Lonnie says.
Yet the illness can steal only so much, and Muhammad still has plenty he wants to do. A quarter of a century into his struggle with Parkinson’s disease, he’s taking piano lessons. Most important, this lifelong supporter of humanitarian causes still feels he has a mission to help other people. Early in his disease, Muhammad shied away from the spotlight. “He used to play to the camera, but the camera was no longer his friend,” Lonnie says. But then he made an appearance with Michael J. Fox, also a Parkinson’s sufferer, who has been open about his own movement problems. “I think he thought, If Michael can do it, I can do it.”
Now Muhammad Ali doesn’t care what people think when they see him. Early this year, in an essay for National Public Radio’s “This I Believe,” the boxing legend wrote about carrying the Olympic torch to light the cauldron at the 1996 Summer Games in Atlanta and realizing that his tremors had taken over. “I heard a rumble in the stadium that became a pounding roar and then turned into a deafening applause,” he wrote. He understood then that Parkinson’s had not defeated him.
“There’s still a lot for me to learn from him, and I never forget that,” Lonnie Ali says. “Muhammad was the epitome of strength and beauty, but could someone with physical challenges really relate to him? Probably not. But now they can identify with him. We used to get letters all the time about people with Parkinson’s who wouldn’t go out of the house, but because they saw Muhammad out, now they go out.
“He still has that power to inspire people—without even opening his mouth.”
They didn’t let distance get in the way
As young adults, Julie Winokur and Ed Kashi were both glad—eager, even—to leave their families behind. It wasn’t for a lack of love; they were just excited about making their own way. “When I left for college, on some level I thought, I don’t care if I ever see my hometown again,” Kashi remembers.
Kashi, a photojournalist, and Winokur, a writer and filmmaker, ended up in San Francisco, thousands of miles from their childhood homes. There they established careers, started a family, and founded Talking Eyes Media, a multimedia production company that focuses on social issues neglected by the mainstream press.
But in 1999, everything changed. For seven years, the two of them had collaborated on a project called Aging in America: The Years Ahead, photographing and taping elderly people to draw attention to the challenges confronting the nation as the population ages. Tragedy struck in the midst of the work, when Kashi’s mother unexpectedly died in the Florida condo where she’d lived alone. Though Kashi’s brother lived nearby and had kept tabs on her, it was ten days before he found her.
“I couldn’t stop myself from crying,” recalls Kashi, 52. “All I could think of was the sadness of her life, of dying alone.”
“We get to go wherever we want and be whoever we want to be in this country,” adds Winokur, 46. “The downside is that you sever roots, and when you need the continuity that you get when you live in one place your whole life, you don’t have it.”
So when Winokur’s 80-year-old father, Herbie Winokur, showed early signs of dementia, the couple decided to relocate their family to New Jersey and buy a house where he could live with them. “We’d done all this work on what it’s like to get old in America,” Winokur says. “When my dad needed us, it was one of those ‘walk the walk’ moments.” Over the next few years, the couple worked, raised their children—Isabel and Eli, who were seven and ten years old when their grandfather moved in—and cared for Winokur’s father. It was a hectic, frustrating, sometimes grief-filled, and ultimately deeply satisfying experience. With funds from the sale of Herbie’s house, they were able to hire paid caregivers, but even so, simply getting through the day often took all they had. Winokur juggled working, parenting, managing the caregivers, and providing hands-on care for her father. Kashi, who frequently had to travel for work, also got down in the trenches whenever he was at home. The kids, too, made sacrifices—their parents’ tempers and attention spans were shorter, and they couldn’t always be counted on to make it to school and sports activities. As for together time as a couple: “We had zero space for each other,” Winokur remembers. “For a couple of years, we felt like machines going through the motions just to keep it all moving.”
Early on, Winokur worried that her children would grow to resent Herbie for taking their parents away from them. But ultimately, she thinks Isabel and Eli got something important even from that. “Our kids had to learn that their grandfather’s needs took precedence over theirs,” she recalls. “In fact, his needs took precedence over all our needs. Ed and I felt that in the long run, it wouldn’t hurt the kids but would help them realize what it means to occasionally care for someone else more than yourself. It’s been a valuable life lesson for them.”
Herbie Winokur died at home in 2008, surrounded by his family. Looking back now, his daughter and son-in-law say they feel lucky their circumstances allowed them to make the choices they did.
“I’m convinced he got the best care he possibly could have received,” Winokur says. “The fact that everything was happening right in front of us meant that he was never neglected. Most of all, he had constant love and familiarity around him.
“We had a calling, and we answered the calling,” she continues. “There’s something gratifying about feeling like you did the right thing. What is life about if we don’t prioritize our loved ones?”
On her own, but not alone
Marjorie Baer used to joke about her retirement plans. She wasn’t married and had no kids, but she didn’t intend to be alone—she and all her single friends would move into a fictional home she called Casa de Biddies. Instead, Baer developed terminal brain cancer when she was 52. But just as she’d hoped, her friends and family provided her with love and care to the end.
Baer’s friends Lee Ballance and Mary Selkirk were walking their dog one afternoon in July 2006 when they saw an ambulance in front of her house. Baer had had a seizure and collapsed. Ballance, a physician, hopped in his car and followed the ambulance to the hospital to be at Baer’s side while doctors tried to figure out what was going on. When they did, the news wasn’t good: She had glioblastoma multiforme, a particularly aggressive form of brain cancer.
Ballance was only the first of Baer’s friends who became her unofficial caregivers. Until her brother Phil Baer put his marriage and work in Los Angeles on hold to care for his sister during her final weeks, they cobbled together a system to watch over their friend and allow her to keep some of the privacy and independence she cherished.
Baer’s good friend Ruth Henrich took the lead. That seemed natural: Henrich, then 58, and Baer both worked in publishing and lived in the same duplex. Though busy in her job as an associate managing editor at salon.com, Henrich took Baer to doctors’ appointments and helped her deal with all the aspects of life that were becoming increasingly mysterious to her—answering machines, TV controls, and even phone numbers. After Henrich sent out an e-mail request, a group of volunteers signed up to ferry Baer back and forth to radiation therapy. Others in Baer’s circle offered up particular talents: A nurse friend helped Baer figure out how to get what she was due from Social Security and her disability insurance; an attorney pal helped Baer with her will; a buddy who was an accountant took over her bills when she could no longer manage them. “There was this odd sense that the right person always showed up,” says Ballance.
Not that it was easy. “I had to know at all times who was going to be there and anticipate what Marjorie would need next, so it was always on my mind,” says Henrich. “It was something I wanted to do, but it also never went away.” Still, their jury-rigged arrangement worked remarkably well. Even as Baer lost the ability to read and write and engage in conversation over the course of the year, she was able to continue to live on her own, walk to the market, take the subway to painting classes, and even fly to Iowa by herself to visit her brother Tom and his family.
“She was a generous person,” says another friend, Elizabeth Whipple, “and it came back to her in truckloads.”
Unmarried women are one of the fastest-growing demographic groups in America, and increasing numbers of men are remaining single, too; experts are concerned about how caregiving will be managed for both groups as they age. If the experience of Baer’s friends is a guide, the Internet will play a role. It’s already making it possible to create communities of caregivers who may have only one thing in common: the person who needs their help. On personal “care pages” set up through services such as Lotsa Helping Hands, friends and family members can post a list of tasks that need to be done, volunteer to do them, and keep updated on the person’s condition. As Baer’s cancer progressed, for example, her friends set up a page on Yahoo! where people could sign up to deliver meals or do errands.
Eventually, their help wasn’t enough. One morning, a year after Baer’s diagnosis, Henrich checked in before work and found Baer on the floor. Though she wore a panic button on a chain around her neck, she hadn’t used it. “I don’t know how long she had been there,” Henrich says.
That was when Baer’s brother Phil stepped in. He and Tom had taken turns earlier making trips to Berkeley to care for their sister; now Phil, who lived in Los Angeles, took leave from his job as head of air-conditioning and heating at CBS Studio Center—and from his understanding wife, Joyce—to care for Baer full-time. “There was just no question in my mind that I would do anything I could, including switch places with Marjorie,” he says. “It made me realize how much I loved her.”
For the next few weeks, Phil looked after her during the day. He oversaw the nighttime caregivers and consulted with the hospice workers who assisted with medical issues and helped him prepare for Baer’s death. But even then, his sister’s loyal friends were irreplaceable, he says, providing both practical and emotional sustenance.
Several of Baer’s friends were there when she died. “We were all trying to help ease her passing,” says Whipple. “Phil put his hands on her chest, and she let go.”
Catherine Fox, one of the friends who was present when Baer died, was deeply affected. “It was so comforting to know that if you’re willing to ask for help, the generosity of family and friends can be phenomenal. It makes me feel secure and hopeful to know that help is there when you need it.”
Caring in tough times
Looking back, Susan Morris can’t quite remember how she came to be the “designated daughter” for her parents’ care—it all happened so fast. Morris’s father and mother, John and Althea Orcutt, were happily retired in Maine, where John painted and played clarinet in a community band. But at age 69, three weeks after a checkup concluded with the news that John was in great shape, he had a massive stroke that left him paralyzed on one side.
Althea, who had some medical problems of her own, was quickly overwhelmed. She crashed both of the couple’s cars in a two-month period; by the time an ice storm hit and they were stranded without power, it was clear that something had to change. Fast. “All of a sudden, this charming existence that they had set up for themselves was like a time bomb,” says Morris, 54, who lived in North Carolina with her husband, Gregg, and their sons, Robby and Patrick, then 12 and 8.
“Boom—there they were,” she recalls. “My sister was wheeling Dad off an airplane and I was thinking, Oh, my God.”
Morris set her parents up in an assisted-living residence five minutes from her home. “I had this rosy picture of how things would be: My father would walk kind of funny, but he’d be the same guy he’d always been, and they could be the grandma and grandpa they couldn’t be long-distance. But that’s not how it turned out.”
John Orcutt had always been congenial and capable, mastering everything he set his mind to.?Being incapacitated left him depressed. He was not the grandfather her children remembered:?He was irritable; they were scared. And his daughter was unprepared for the role reversal that occurs when children are suddenly charged with their parents’ care. Morris hadn’t anticipated how heavily her parents would rely on her—to take them to doctors’ appointments and on outings, to pay their bills and make medical decisions. And she hadn’t realized how quickly the costs would add up. One national survey has shown that caregivers typically spend more than $5,000 a year on out-of-pocket expenses. Though Medicare and supplemental insurance covered her father’s medical bills, Morris was the one buying adult diapers, underwear, and other supplies. She can’t even count the number of extra miles she’s put on her car or the unpaid days she’s had to take off from work.
Things came to a head seven years into her new role, in the summer of 2005. She was already anxious because her son Robby was by then in the U.S. military, stationed in Fallujah, Iraq. Then her mother got sick and had to be hospitalized. The family dog was diagnosed with cancer. And although her parents had purchased five years of long-term health insurance (a “financial godsend,” Morris says), she discovered that they were running out of money.
The long-term insurance plan had been covering only her father’s medical expenses; after many phone calls, Morris got her mother certified as eligible too. She was also able to negotiate a lower rate with her parents’ assisted-living residence, in part because they were living in one room. But the whole process, she says, was “excruciating.”
At times, she could barely hold herself together. “Sometimes I thought, Maybe I’ll have a breakdown, and they’ll have to pack me away in a hospital, and I can just get some rest,” she says, laughing. “It sounded kind of appealing, actually.”
It’s been 11 years since Morris began caregiving for her parents. Though her sister, who lives near Boston, flies down every few months to help, Morris is exhausted. Her father has had a seizure and a couple of bad falls. Her mother has been diagnosed with mild dementia. With her sons now in college, Morris works full-time as a teacher’s aide and in a bookstore during the summer. But her husband lost his job as general manager of a software company in the economic downturn last December, putting new financial pressure on the couple.
Yet it’s the emotional anxiety that wears her down. “Raising my kids was a snap compared with this,” she says. “Children go through phases, and when you’re in the midst of one that’s not so fun, you think they’ll grow out of it, and sure enough they do. But with my parents, it’s not going to get better.” Still, there are rewards. “I’m trying really hard to do the right thing by my parents, and I guess there’s a certain satisfaction in that,” she says. “And I hope I’m being a role model for my children. At least maybe when their turn comes, they will have a more realistic picture of what to expect than I did.”