Patients and Their Caregivers Learn to Live in the Moment

WASHINGTON, DC-"On the day that changed my life, I heard the words, ‘Congratulations! It’s a girl!’ followed by, ‘Oh, no-this is advanced ovarian cancer," Joan Sommer, RN, recalled. "I kept thinking, Baby? Cancer? Baby? Cancer? How can this be?"

The cancer was discovered just after Ms. Sommer gave birth by caesarian section to her third child. The story of how she and her husband Joe Sommer have coped during the past 9 years (and 3 recurrences) was the centerpiece of a symposium on "Empowering the Caregiver."

"I knew that I might not wake up from the extensive debulking surgery," said Ms. Sommer, who is a rehabilitation nurse. "I woke up somewhere between postpartum, postoperative, and postmenopausal." She described the relief of getting out of the intensive care unit onto the oncology floor, "where they are used to cancer and know what to do to help."

The Sommers’ then had to deal with both a new baby and cancer. Ms. Sommers noted particularly "the incredible fatigue. There has to be a better word for the feeling when you get out of bed to go to the bathroom and have to take a break before you can walk 12 feet."

In Denial at First

Mr. Sommers, meanwhile, was trying to pick up the slack. "At first I was in denial. My attitude was that everything could be the same. That I could take care of a newborn, a wife with ovarian cancer, a 4-year old, an 8-year old, a house, laundry, shopping, the car, and a job to pay the bills," Mr. Sommers said. "I learned how important it is for the caregiver to let other people such as neighbors and family give. I also learned that just sitting with my wife while she rested or fell asleep was more important than doing the laundry, shopping, and even giving baths to the kids. It is important not to leave your spouse alone during all those hours. Other things can be delegated."

The Sommers’ had some advice for others: caregivers must take care of themselves first, must learn to focus on "what really matters," and must create a vision of the new status quo and a plan for maintaining it. Mr. Sommers stressed the importance of trying to, "Live every moment, and live in the moment."

Skills Needed Change

Gary S. Wolfe, RN, put the Sommers’ experience into broader context. Mr. Wolfe is a case manager in private practice and editor-in-chief of CareManagement.

Mr. Wolfe defined a caregiver as "a nonprofessionally trained health worker caring for a relative or friend." He said that 36% of family caregivers report devoting more than 40 hours per week to care giving in addition to working at a fulltime job, and almost half of these caregivers are over age 50. Nearly 40% report that their own health has suffered, and 25% have their own physical limitations.

Some of the stress can be reduced by equipping caregivers with a core of knowledge and training about cancer, Mr. Wolfe said. That should include training in causes and interventions to relieve fatigue (both of patient and of caregiver), pain, nutritional problems, and immobility. He pointed out that depression and anemia are both treatable and are both commonly associated with fatigue in cancer patients. The skills caregivers need change over time as the patient’s condition changes but typically include bowel and bladder, mobility, and personal care.

"We need to ask what the caregiver needs to know about the disease itself and about expected changes, so he or she can plan for future care. Caregivers also need to have basic information about the patient’s medications, including what side effects should be monitored and reported to the clinician. Caregivers also need to have advance directives, if they have been prepared, handy immediately for paramedics and emergency personnel," Mr. Wolfe said.

Dealing With Employers

Kathi Mooney, RN, PhD, discussed ways to empower the employed caregiver. She said that many are able to maintain employment but lose promotions due to the time constraints of care giving. "There is a tension between the caregiver role, staying employed, and the employer’s desire to have a fully functional employee," she said.

Dr. Mooney said that oncology nurses can assist by helping family members understand what to ask their employers and by helping employers tap support resources for their employees. She also reminded attendees that the support required by the Family and Medical Leave Act (FMLA) is unpaid leave, covers only 12 weeks per year, and is required only of companies with 50 or more employees.

Employers’ human resources programs can be another source of support for family caregivers. Such "in house" aid can include flexible schedules, employee assistance programs such as counseling or case managers, benefit time donation programs, or resource centers or services.

"You can make a difference," Dr. Mooney concluded. "Assist caregivers to negotiate with their employers. Assist employers to develop supportive resources. And advocate for policies at the national level that support care giving."