By Jenny Song

Lessons Learned

By Jenny Song

As the primary caregiver for her husband, Matthew Fleece, Michelle Johnston-Fleece juggled many roles after his sweat gland tumor metastasized in 2001. She worked full time to maintain the couple’s health insurance, took care of their house and dog, and—in her free time—fought with their insurance company over rejected claims and with hospitals over erroneous bills. Stress hit her from all angles.

To blow off steam, Johnston-Fleece would vent to her social worker and others. “I generally tried to rant separate from him,” she says. But a few times she directed her anger at Fleece, she admits. “And he got really upset.”

Five years have passed since her husband died, but Johnston-Fleece, now 33, is still haunted by her rare insensitive words. “After someone dies, you get to live with those moments,” she says.

As harsh as it may sound, it’s quite common for caregivers to feel angry toward a sick relative, says Linda Goorin, a social worker at Beth Israel Deaconess Medical Center in Boston. “In the case of a spouse, they’ve kind of lost what their future would be; they didn’t expect this or plan for this,” she says. They also may feel guilty if they can’t be at the hospital constantly or make it to every doctor’s appointment. “It’s important to recognize that those feelings are common,” she says.

Sometimes the strain of a cancer diagnosis can strengthen relationships, allowing people to talk openly and honestly. But, says Goorin, it can also magnify problems.

According to Johnston-Fleece, caregivers need to be careful to not increase tensions by overstepping their boundaries with the patient. “You don’t want to make them feel like they’re just a passive actor and you’re taking over,” she says. “Make sure you listen to the person and what they actually want. Keep the communication open because you don’t want to create the dynamic that’s in the medical system.”

Scott Kennedy, whose 5-year-old son, Hazen, died of neuroblastoma in 2007, agrees. When that happens, he says, “you become a provider versus being a caregiver.”

During the two years before his son died, Kennedy found it extremely difficult to be both caregiver and parent. “I knew both things were important,” says the New York City resident. “But it was a real challenge because I wanted to do whatever I could to keep him alive.” When Hazen was out of the hospital, Kennedy took a break from researching treatment options so he could just be a dad. “I really did burn out,” he admits.

Johnston-Fleece became so emotionally and physically drained that she hit a mental wall. “I had to take days off [from work] and lie on the couch all day because I was so exhausted,” she says. Since learning that lesson, she has this to say to other caregivers: “You have to consciously remember to take time for yourself though it’s really hard and it seems impossible. You can’t really take care of someone else if you’re a mess.”

Caregivers can also seek out support services from organizations like CancerCare or the National Family Caregivers Association, or from hospital social workers.

“It’s really hard to talk about your fear of your husband dying to your husband, who’s dealing with the illness,” says Johnston-Fleece.

“You don’t want to bring it up, but you’re thinking it, you’re scared of it and you need to express it. Make sure you have an outlet to talk about your own feelings.”  

(photo credit: Danny Wilcox Frazier)