TAMPA — It's a role that few people are prepared for: caring for someone with a terminal or chronic health condition. When it happens suddenly, as is so often the case with a diagnosis of cancer, the impact can be especially intense.
That's what happened to Evelyn Johnson-Taylor in 2008. "It was something we never saw coming," said the 53-year-old Tampa woman.
Her husband, Scott Taylor, was treated for Hodgkin's lymphoma in 1977 while he was in high school. More than three decades later he injured his back and had an MRI. It showed some unusually large lymph nodes.
More tests revealed that Taylor had advanced lymphoma; the cancer he thought was beaten back in high school had returned without causing symptoms. "It never occurred to me he would have another bout with the same diagnosis," said Johnson-Taylor.
Practically overnight, everything changed for the couple and their two teenage daughters. He was an IT engineer, she was a writer, and both were pastors of a new church in Wesley Chapel.
"When treatment started with biopsies, scans, chemo, doctor's visits, it became where we scheduled our lives around his appointments. We were at Moffitt (Cancer Center) almost every day or every other day," she said. Eventually the couple had to close their church, and he gave up his full-time job.
A recent study in the Journal of the American Medical Association found that caring for a cancer patient is a full-time job that can take more than 40 hours a week. Not surprisingly, the researchers found that caregivers experience physical and emotional problems including anxiety, fatigue, sleep problems, loneliness and isolation.
None of that was news to Johnson-Taylor, whose days (and sometimes nights) are given over to caregiving and managing family life. Coordinating her husband's medical appointments and complex medication regimen takes top priority. There is still one school-age daughter at home, plus shopping, meal planning, keeping everyone's schedules straight, family finances, housework, yard work, and occasional substitute teaching to help make ends meet.
"It is overwhelming at times. It's isolating and lonely," she said. "You're used to sharing that kind of stress with your life partner, but you don't want to burden someone with a life-threatening illness with your own problems."
The JAMA study also found that the stress of caregiving can lead to hormonal changes that increase the risk of infections, heart disease and diabetes. Other studies estimate that 60 percent of caregivers suffer depression within the first six months of assuming their new role. Guilt, anger and frustration plague those who fear they aren't doing enough for their loved ones. Caregivers can harbor resentment toward family members who don't pitch in.
Dr. Bryan Bognar, chairman of internal medicine at Moffitt Cancer Center and head of the Psychosocial and Palliative Care Program, said he sees the effects of stress in caregivers' body language and in the questions they ask.
"That often lets us know that they are at the end of their tether," said Bognar. Many caregivers don't want to admit that they are struggling, so he may take them aside and ask privately how they are doing. "Sometimes they may just need reassurance that what they are doing, they are doing well," he said.
Not everyone can take on the tough task of caregiving.
"Some people don't have the personality that fits with caregiving, so they struggle to make it work," said Sara Williams McGill, a licensed clinical social worker with Lifepath Hospice in Tampa. For instance, a man who always thought he would predecease his wife might be unable to adjust if it's his wife who falls seriously ill and needs his care, she said.
Or siblings may resent each other deeply if one of them finds he just can't help an ill parent with personal tasks like bathing, dressing and using the toilet.
"Understand that they don't have the skills for certain tasks and rather than getting angry at them, find something else that they can do, like grocery shopping or handling the finances,'' she suggested. "The families who figure this out have more successful outcomes."
Other keys to caregiver success: Accept help when it is offered and ask for help when it is needed. Johnson-Taylor said their network of friends has been invaluable. Even now that her husband's cancer is once more in remission, he still is being treated for issues related to his cancer care.
"We have good people around us and our faith in God has carried us through," she said. "I'm appreciative of what they do because you do need a lot of support."
Williams McGill has this advice for people who want to help a caregiver: Don't say, "Call if you need anything" or "Do you want your lawn mowed?" Instead just go mow it. Call and say, "I'm going to sit with your husband while you go to church or while you lie down for a nap." Or "I'm free from 2 to 4 tomorrow. I'll be over then."
Even if you can't perform physical tasks, simple companionship can be therapeutic. "It is rejuvenating just having someone to talk to," she said.
Contact Irene Maher at [email protected]