With a Little Help

At 83, Bill Kruse has traveled to more than 50 countries—Ireland, China, Russia, Peru, and Greece all in the last decade and all on the budget of a retired federal civil servant. “I don’t do those big sissy cruises,” Kruse boasts. “I’m a blue collar New Jersey guy. I’ve worked on the docks. I don’t play golf or fish—my thing is travel.”

Since 2000, though, he’s had to alternate his international trips with doctor’s visits, including cancer treatment. First, it was melanoma on his face in 2000, soon after he retired to Fort Walton Beach, Florida (“for the best beaches in the world”). Then, he got aggressive prostate cancer in 2006. In addition, a serious old leg injury was acting up, resulting in osteomyelitis, or bone infection, and requiring several surgeries.

Kruse had been single since 2005 when his wife died of breast cancer. The younger of his two daughters lives in Virginia, and the older was poised to move to Maryland. With some convincing from the older daughter, Kruse decided he needed some help. He didn’t need medical help so much as he needed help simply managing life at home, from cooking and cleaning to moving around the house. Kruse didn’t want to move into an assisted living facility. “There’s plenty of places like that here in Fort Walton,” Kruse says, “but I opted out.”

Instead, he let his older daughter call a professional home caregiving organization. Kruse’s first caregiver, hired primarily to cook for a few hours a week, was helpful, he says; Amy Thompson, who has now been his caregiver for nearly four years, is “amazing.”

Anne Coscarelli, PhD, director of the Simms/Mann-UCLA Center for Integrative Oncology, calls such a moment—when patients or families recognize the need for a difficult change in living circumstances—a “moment of transition.” These moments are a common experience for people with cancer and their families, and one that often involves significant loss, Coscarelli says.

The primary challenge may not be figuring out how to find and hire a caregiver, Anne Coscarelli, PH, says, “rather, it’s often about helping a patient and family identify losses occurring, recognizing them, grieving them, and then developing a plan to manage them.”

“The need for professional caregiving is a transition period, where there’s some change in status, and often a loss of independence,” she notes, and it’s often a time of great psychological and social need. The primary challenge may not be figuring out how to find and hire a caregiver, she says, “rather, it’s often about helping a patient and family identify losses occurring, recognizing them, grieving them, and then developing a plan to manage them.”

Dealing with the psychological adaptation as well as loss and grief, Coscarelli says, can make the practical parts—finding and hiring a professional caregiver, negotiating payment or insurance coverage—somewhat easier.

Professional caregiving—which may include cooking, cleaning, and personal assistance with other daily activities—is generally considered non-medical, although caregivers may help clients track their medications.

The Simms/Mann Center (part of UCLA’s Jonsson Comprehensive Cancer Center) helps families manage such psycho-social transitions, Coscarelli says, and many other cancer centers have oncology social workers who can help. Often, she begins “laying pipe,” as she calls it, well before patients and their families face critical transitions.

It might begin with brief conversations about the future, and the ways cancer might affect a person’s abilities. “You might initially hear, “‘Oh, I can never imagine that,’” Coscarelli says. “And you say, ‘I see you have a strong reaction to that.’ And maybe you start talking about tools. A car is a tool that enables us to go farther than if we walk. Having someone help you may be a tool that enables you to remain living in your own home, avoid more significant losses, and preserve your independence.”

Although professional caregivers may serve key practical roles—ensuring that a cancer patient recovering from treatment keeps nourished, perhaps—it’s often the social support of a caregiver that proves most important to clients, says Paul Hogan, co-founder of a professional caregiving company called Home Instead. Local franchise owners screen, hire, train, and insure professionals to help individuals and families in transition, whether it’s for a few days after chemotherapy, when some patients may be at risk of falling, or around-the-clock care for those in greater need.

Because the services are non-medical, health insurance rarely covers the cost. People with long-term care insurance may be covered; other times, families simply pool diverse resources, from savings to reverse mortgages.

Caregiving through Home Instead typically ranges from $17-$22 an hour, says Hogan, who recognizes that cost is often a stressful part of the caregiving decision. Home Instead—which has offices in all 50 states—is beginning a free series of family caregiver education sessions to help families assess their options. That may include taking an inventory of resources, from churches and synagogues, to friends who may be able to look in on a person or bring in a meal.

In Broomfield, Colorado, Dan Whipple says he felt lucky that his parents-in-law had the resources to hire caregiving help. But little else about his experience with professional caregiving was easy.

“Frankly, it was hard on everybody,” Whipple says. “It’s not something you really want to do.”

Whipple’s in-laws lived with him, his wife, and their younger son for three years, and the entire family struggled with the aftermath of his mother-in-law’s stroke and father-in-law’s growing dementia and lung cancer. Whipple says he felt they needed professional help right away, but his in-laws were reluctant. After a series of incidents—burners left on, a scary fall—Whipple and his wife hired professional caregivers to attend to his in-laws during the day.

The caregivers were very helpful, Whipple says. “They were good, and they worked very hard.” But his in-laws were often resentful of their need for help, Whipple says. And he and his wife—both quiet people—sometimes felt the strain of sharing their home and making constant conversation with the caregivers.

Still, having the help let Whipple and his wife get out on occasional hikes without worrying about his in-laws alone at home. “My wife says that basically, it kept us from killing them,” he says jokingly. “But even with help, it was pretty hard on us,” Whipple says. “We know people who have done this more or less on their own. I don’t know how they do it.”

While Kruse, too, resisted outside help at first, the tough-guy former dock worker says the assistance has become a great source of comfort. Thompson now comes in twice a week, about four hours each time. She cooks, drives him to appointments, and is teaching him how to archive his travel photography on a computer. She also has planted him a garden, helped him lose weight, and assisted him in breaking in new hearing aids.

“I think we passed caretaker,” Kruse says. “She’s a dear friend.”