In 2008, Helen Colbert, once the fireball of her family, became weak and incoherent. Parkinson's disease and diabetes had slowly overtaken her. Helen's children brought her to the hospital, where she spent two days before being transferred unexpectedly to a nursing home in the middle of the night. When her son Louis visited her there the following day, Helen, now 86, was traumatized, unfed, and apparently untreated. That's when Louis—an executive at an office on aging in suburban Philadelphia—sprang into action.
"Why hasn't my mother been given her medications?" he demanded of a nurse.
Her bureaucratic response: "We can't give her any medication because we don't know who to bill it to."
Louis placed a call to the medical director to have his mother released. The doctor initially refused, calling it an unsafe discharge.
"My voice was getting louder and louder, and I was starting to holler," Louis remembers. "The doctor kept saying, 'So you're going to take your mother out against medical advice?' And I said, 'Yes, I'm going to take her out against medical advice.'"
Louis, now 58, won that battle; the facility let his mother go home that afternoon. But Helen's usual caregivers—two of Louis's sisters—were not at home to watch her. Nor were any of his other four siblings available. That day, for the first time, Louis was solely in charge of his mother's care. He was terrified.
"I'm a social worker, trained and working in the field for 30-some years, but I was frightened to death," he says. "You don't want to do anything to hurt your loved one, and I remember praying, 'Oh, dear Lord, please help me.'"
Such fear is not unusual, especially for men, says Brent Ridge, M.D., a geriatrician at Mount Sinai Hospital in New York City. Ridge often receives panicky calls from men thrust into the caregiving role. The CEO of a major publishing corporation once told him, "My father just had a stroke, and my mother isn't strong enough to care for him. I have no idea how to help them."
No one feels comfortable in an instant-caregiver role, says Ridge, yet most adults will care for an aging loved one at some point in their 40s, 50s, or 60s. The number of unpaid family caregivers in the United States now tops 65 million, involving more than three in ten households, according to "Caregiving in the U.S. 2009," a report conducted by the National Alliance for Caregiving (NAC) in collaboration with AARP, and funded by the MetLife Foundation. Despite a common stereotype that caregiving is women's work, one third of American caregivers are men, the report reveals.
Many male caregivers keep this role a secret. In two years of research and hundreds of interviews for my new book, Passages in Caregiving: Turning Chaos Into Confidence, I discovered that many men fear workplace stigmas: the perception that a frail parent or ill spouse is more important than company profits. Among men and women who work full-time while acting as unpaid caregivers to adults, it's the men who more frequently try to hide emergency phone calls, doctors' visits, and other workday distractions that come with the role.
And men tend to approach the job of caregiving differently from women, I found. Most men who help care for family members opt for long-distance or executive tasks such as dealing with insurance companies or lining up nurse visits. Women caregivers, by contrast, are more likely to do hands-on tasks. The NAC/AARP study confirms this. Though male and female caregivers employ about the same amount of outside help—35 percent used paid aides during the course of a year—among caregivers of people over 50, men are more often the ones who arrange that help. But men are only half as likely as their sisters or wives to assist with the more personal task of bathing. Men who do shoulder the heart-wrenching work of dressing and toileting a family member are particularly reluctant to talk about it. It isn't seen as manly, many told me.
Male caregivers opened up to me after learning I had cared for my late husband for many years. And frequently, when they did confide in me, their painfully buried emotions—embarrassment, inadequacy, despair—would bubble to the surface.
As CEO of the Motion Picture Television Fund Foundation (MPTF), Ken Scherer, 61, is charged with providing health care, counseling, and other services for more than 60,000 members of the entertainment industry. Yet when Scherer, a caregiving novice, faced a life-and-death crisis with his mother, he remained silent.
Six years ago she was 84 and in a rehab hospital in Bethlehem, Pennsylvania, as he tells it: "I flew from California to see her. She refused to eat or talk to me. She rejected a feeding tube. She kept insisting, 'Let me go.' "
As his mother's sole caregiver, Scherer felt isolated and helpless. "I needed to tell someone 'I don't know what to do. I'm lost,' " he says. Scherer followed his mother's wishes and did not allow doctors to feed her through a tube. Events quickly took their course, but Scherer was haunted by regrets as he learned more about caregiving. He realized his mother might have been suffering from a treatable depression. "My mother chose to die," he says, "but she didn't have to."
Since his experience, Scherer has devoted himself to improving support and services for caregivers at MPTF. Members and the parents they may eventually provide care for can now consult with a geriatrician while the parents are healthy, long before they become so frail or depressed that they lose the will to live.
After Louis Colbert rescued his mother from the nursing home, his sisters once again took charge of her care. But six months later his exhausted sisters finally sent an SOS e-mail to the rest of their siblings: "We can't do this anymore. We have to put Mom in a nursing home."
It was the worst-case scenario—and it got the family's attention. Louis called a family meeting. The seven siblings discussed what skills they could offer and when. The beefiest brother became his mother's "elevator," as she called him, doing the heavy lifting from bed to chair or car. Others offered to take a night or weekend. Louis agreed to pick up Helen from the day program she now attends twice a week. The siblings decided that if they all gave up small indulgences such as potato chips, they could each contribute $20 a week to hire a family friend to cover in-between times (at a steeply discounted hourly rate). Mama Helen smiled broadly as she listened to her children's suggestions.
Eighteen months later Louis had shed his guilt and acquired new skills as an advocate for the elderly, which earned him respect from his family—and made him a better administrator at work. He now sees their shared caregiving role as a gift.
"One mother can raise seven children," Louis says, "but it takes seven of us to take care of Mom."
Men are often surprised by the depths of intimacy the caregiver's role awakens in them. In 2001 veteran actor Victor Garber had just moved to Los Angeles to begin the TV series "Alias" when his mother developed early signs of Alzheimer's disease. Hope Garber, then in her mid-70s, was in denial about her illness, yet could not be left alone in her West Los Angeles apartment. Victor—who is single and whose brother and sister live in Canada—arranged for home health aides through a public agency but found them "shockingly inadequate." He had to coerce his mother into moving into an assisted living facility.
"From that point on," he says, "my mother became my child."
Victor, now 61, saw his role as the care manager. He found a take-charge woman willing to spend days with his mother, keeping her engaged with shopping excursions and other activities. He was on the set 12 to 15 hours a day playing a heartlessly cruel CIA agent, but every morning Victor would wake up feeling guilty and empathetic, making plans to call his mother, meet her for lunch, or take her to a film. He built his schedule around his mother, curtailing his social life and travel. "It was my life for those years—about six years—a structured routine," he says.
Victor confesses that there were times he felt he couldn't go on—a feeling shared by most caregivers. "But I was blessed with support from my family and friends," he says, including his costar Jennifer Garner, whom he calls "an angel." Victor also praises the Alzheimer's Association: "They were there all the way. I'd call their help line [800-272-3900] when I didn't know what to do." Victor and his mother looked forward to the organization's annual fundraiser in Los Angeles, the Memory Walk. It drew them out of isolation and made them feel part of a community.
Hope died in 2005, and two years later Victor still feels an undertow of loss after those last, intimate years with his mother. "I miss it, even the hard stuff," he says. "It's all valuable."
Years spent caring for a spouse can be heartbreakingly difficult—particularly for men who aren't used to cooking, shopping, and cleaning—but they can also be among the richest and most precious. That was the case for Karl Eigsti.
The head of the theater design program at Brandeis University, Karl lived with his wife, Berkeley Bottjer, in Lincoln, Massachusetts. In March 2000, Berkeley was diagnosed with squamous cell anal cancer at age 53. "It's pretty dire," says Karl, now 71.
Karl tackled the next two years of treatment like a second job. "I got to know Mass General [Hospital] like the back of my hand," he recalls. "I was always with her for the bone scans and operations, then I went home to take care of the dogs and the house."
That December, Berkeley's oncologist determined that her cancer was incurable and gave her an impossible choice: extend her life with sickening chemotherapy or live no more than six months without it. "That was a tough bullet to take," says Karl, but his wife made a clearheaded decision. She didn't want to be shuttled between hospital and home to have chemicals injected into her body; she wanted to spend every day fulfilling her deepest desires. "I want to get as far away from Mass General as I can," she told her husband. It was her idea to buy an RV so the couple and their two springer spaniels could make a trip across the country.
"We camped out every night for 40 nights," Karl recalls proudly. "I cooked every meal. I'd open up an awning and put out a carpet. We had wine and gourmet dinners. We watched a full moon come up over the mountains in Yellowstone, with our glasses of wine."
The high point was a pilgrimage to a remote island to visit Karl's aunt and uncle. The Eigstis clambered into a four-seater plane with their dogs and flew off the coast of Washington State. There they were welcomed by a community of 20 multigenerational families living off the electric grid, with a generator providing enough power to enjoy the Metropolitan Opera on Saturdays. Karl's aunt, also living with cancer, happily cooked the catch of the day on a wood stove. Berkeley told Karl it had been the best day of her life.
On their return drive, winding through the glaciers of the Canadian Rockies on a brilliant morning, Karl remembers Berkeley saying, "On this trip, I've forgotten I was sick."
When caring for a loved one, that may be the most precious gift any of us can hope to give.
Gail Sheehy was AARP's Caregiving Ambassador in 2009. Her latest book, Passages in Caregiving, comes out in May.
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