Caring For Caregivers

The Record ( — Sunday, July 29, 2007


Kim McKinnon races from her shift as a cashier to get her husband to the doctor on time. His breathing has been labored for days.

Marilyn Kober grades her students' tests while she keeps her husband company in the chemo clinic.

And Steve Radetsky, a treasury manager at a hotel chain, carefully chooses when to take time away from his high-pressure job to escort his wife to her treatments for ovarian cancer.

"As much as I'd like to be there every time she gets poked, she knows I have to bring in the money," says Radetsky, of Fort Lee. "Trying to balance it all, I give her as much attention as I can, but it's not as much as I'd like."

Caregivers perform triage constantly as they weigh responsibilities at work against commitments to sick family members. I've had my share of angst this way. When April's nor'easter poured water into our basement, I felt torn. Should I slog in to work to help cover the floods or stay home with my husband, who has pancreatic cancer? I wanted to do my share when news demanded a huge team effort, but I felt guilty leaving him home alone to bail out the basement. Elliot urged me to go that morning, and fortunately, he managed on his own.

So many of us struggle to balance work and family these days – and serious illness throws a new challenge into the equation. About 46 million Americans serve as unpaid caregivers for chronically ill or disabled adults, according to the U.S. Surgeon General's Office. The ranks of caregivers are expected to grow as baby boomers age, medical advances extend lives, technology improves for home care, and insurers press for shorter hospital stays. About 60 percent of family caregivers juggle paid jobs as well.

When Elliot was diagnosed a year ago, it flashed through our minds to just quit and fly to the Virgin Islands. Of course that's impossible; like many couples, we both need to work to keep our health insurance and paychecks, especially as uncovered medical expenses pile up.

Even so, we do need frequent days off for his treatment. I'm lucky that The Record's editors are compassionate in letting me come and go as need be. I've worked three days a week since having kids, and now I can choose which three days I'll be in, depending on Elliot's appointments. Without this leeway, I'd be a wreck.

Now more than ever, I need the satisfaction and camaraderie of my job, but I want to do my best for my husband. He wants me with him when he gets chemo – 25 treatments so far. Each infusion consumes a full day when you include schlepping into Manhattan and long waits. He needs a driver when he's drowsy from drugs. And when he's stuck in the hospital, I stay overnight, too. Many parents and spouses do the same; there's quiet competition for the recliners that squeeze next to patients' beds. It's touching to see their devotion.

Most caregivers I've met were impressed by their employers' humanity. Thanks to the federal Family and Medical Leave Act, companies with 50 or more employees have to give caregivers 12 weeks of unpaid leave. Some small businesses grant unpaid leaves by choice. Unfortunately, many caregivers can't afford that option. Some are pushing for a New Jersey bill that would guarantee paid leave, but the business community is fighting against it.

Sometimes how you're treated "has to do with whether your boss likes you or not," says Donna Schempp, program director at the Family Caregiver Alliance, an advocacy group in San Francisco. "Sometimes it depends on whether the boss has ever been through it. If your boss is 25 and doesn't have a clue what you're dealing with, often there's no flexibility. People are often told you have to choose whether you're committed to your job or not."

Being at the office can feel like a vacation compared to staying home with a patient in serious condition. If you feel a bit clumsy changing dressings or cleaning medical equipment, it's a relief to go to a job where you know what you're doing. It's also a break from feeding, bathing and driving family members who can be understandably cranky from pain, medicine and anxiety. No matter how much you love the patient, such intensive care can be taxing.

Rita Taub, an administrative assistant from Fair Lawn, clings to her work like a lifeline as she tends to her husband, whose rare form of lymphoma is in remission. "I could not have lived through this without my friends at work," she says. "It's the place where everybody would sit and listen to me. I could go in and scream I hate this [expletive] cancer. I had a cheering squad."

Work can also restore a sense of identity to caregivers who feel unappreciated. When friends and relatives constantly ask "how's the patient?" but forget to ask "how are you?" it's easy to feel undervalued, even invisible. This imbalance might not matter if it lasted only a few weeks, but it can linger for years. One caregiver in an online cancer forum said he felt like a servant living with a celebrity.

McKinnon, of Kinnelon, performs an extraordinary balancing act as she cares for her husband and two daughters – all three had cancer in the past year. For a breather and a paycheck, she recently went back to work at an A&P supermarket and plans to start a second job in tech support Monday. Her husband, maintenance manager at the Smoke Rise community, had prostate cancer, now in remission, and has respiratory problems as well. Their 17-year-old was treated successfully for melanoma. Their 19-year-old, Mandy, is having a rougher time as she fights leukemia and its complications.

"It's hectic, one thing after another," McKinnon says. "If I didn't work, I'd be home very upset, crying. There are times when I think I could lose it if I sit back and think of everything my family's going through. I have to keep moving. My friends at the A&P are constantly asking if there's anything they can do. Their jokes keep me going, though at times at work I've broken down."

An employer's small gift of time can mean the world. Prudential Financial let John De Korte, a project manager from Wyckoff, start his shift an hour or two late so he could help his mother, whose lung cancer had spread. Her left hand was so affected it was locked tight, and her right thumb would lodge between her third and fourth fingers. For six months he visited her at 7 a.m. to massage her "good hand" so she could use it for e-mails and crossword puzzles. He did so right up until she died.

"It meant so much to her," he says. "I was able to work with a clearer mind because I was able to spend time with her each day as opposed to wondering if she was OK and feeling I should be doing more."

Such accommodations engender deep loyalty. Maureen Corcoran, a vice president at Prudential Financial, says managers try to help employees shoulder family obligations, as long as they can get their jobs done. That can mean flexible hours, telecommuting or part-time schedules.

"It's a retention strategy and an engagement strategy," she says. "It's about what helps them focus on the work at hand when they have very demanding issues" at home.

Some companies, however, try to subvert family leave laws. One Camden plumbing inspector took 21 days' leave to tend to his injured son. When he asked for more time off, he got fired. He sued his employer and won. The Center for WorkLife Law, an advocacy group based at the University of California, tracked hundreds of similar cases over the past decade, especially among blue-collar workers.

"Elite jobs have a lot of flexibility," says Joan Williams, director of the center. "If a factory worker has to leave the line because a child is in the ER, she might be fired."

Even generous employers can lose patience. One administrative assistant from Bergen County said that for years her boss let her go to every doctor's appointment with her husband, who had non-Hodgkin's lymphoma. When he became more dependent, she cut back to a four-day workweek. Her rapport with her boss collapsed, she says, after she refused to work extra hours during crunch time for a grant proposal. Suspecting her boss wanted to fire her, she resigned.

"The bottom line is they were only concerned with themselves," she says.

Her former employer wouldn't comment on personnel matters, but a spokesman says that it strives to encourage work/life balance.

Some professionals feel deeply conflicted about taking time off, even when they're entitled to it.

Kober, of Wayne, takes pride in teaching sixth-graders at an inner-city school in Passaic County, and she loves the diversion from the stress of her husband's lung cancer. But she worries that her students suffer when she takes him to appointments.

"The kids need stability," she says. "When I'm not there, even if the substitute is very good, they don't take it well. They kind of resent it. ... There's an underlying 'What about me?' "

Paid leave insurance gains worker favor

Erik had non-Hodgkin's lymphoma at 19. Friends and relatives scraped together all the money they could to help his blue-collar family cope with the bills, but that wasn't enough. His mother had to go back to her cafeteria job, even though it was clear Erik would not survive much longer.

Erik's "biggest fear was that he would die alone," says Peg Kinsell, his godmother. "His mom, my friend, had to leave her son during his last days on earth because she had no other alternative. ... No mother should ever be forced to make that kind of decision."

Kinsell, policy director of the Statewide Parent Advocacy Network, is part of an alliance of caregivers, unions and child advocates pushing for a new bill that would guarantee paid leave of 10 weeks to workers who need time to care for a seriously ill family member, as well as newborns and newly adopted children. This paid leave – providing two-thirds pay up to $488 per week – would supplant most of the unpaid leave provided by federal law. Governor Corzine recently promised to push for it.

Many business leaders vehemently oppose the bill, charging that paid leaves would cut productivity, add overtime costs and encourage companies to set up in states with fewer rules. They also argue workers would abuse it for vacations.

Supporters stress that workers would pay for the program, by chipping in 0.14 percent of taxable wages, up to $48 yearly at first. That pool would function like the state's Temporary Disability Insurance fund. Boosters have begun calling it "paid leave insurance" to underscore the point that employers and state coffers would not contribute. California pioneered a similar system in 2002.

Sen. Stephen Sweeney, D-Gloucester, who lost a brother to cancer, proposed the paid leave bill. It would cover workers in companies of all sizes. That's broader than the federal Family Medical and Leave Act of 1993. FMLA affects only firms with 50 or more workers and requires them to grant 12 weeks of unpaid leave per year for caregivers.

To discourage abuse of paid leave insurance, a doctor would have to certify need and workers would have to use up vacation days to cover absences before they seek checks.

One note in the fine print alarms workers. To appease employers, the proposal says that when a worker takes paid leave, the company does not have to guarantee his job will be held open for him. Sweeney says this compromise was necessary to advance the bill. Even if the worker is replaced and forced to find a new job, he says, at least paid leave insurance would enable him to have income during the 10 weeks when he couldn't work.

John Rogers, a vice president at the New Jersey Business and Industry Association, says companies generally have policies to deal with family emergencies, such as flex time or telecommuting. He said workers are more concerned with getting good health insurance than paid leave. He also criticized the proposal's breadth: "It's a one-size-fits-all mandate that treats the corner store the same as the largest manufacturer."

Both sides expect to tackle the issue when the Legislature reconvenes after November elections.

An Eagleton Institute of Politics poll in November found that New Jerseyans supported the idea of family leave insurance by a ratio of 4-to-1. Twenty percent of adults said there was a time in the past five years when they wanted to take family leave but couldn't afford it.

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