"You can't sit on the sidelines. You've got to be involved." -- MD Anderson caregiver
Caregivers' concerns are embedded in their stories.
As a nurse caring for patients undergoing stem cell transplantation, Lori Williams, Ph.D., has heard many stories from family caregivers. Bedside and clinic nurses tend to have more contact with caregivers than do other medical personnel, she says,. Her close contact led her to prepare her dissertation on coping and caring for caregivers.
Informal or family caregivers, she explains, typically are unpaid family members, friends or neighbors. According to a 2007 study, if a monetary value were assigned to their contributions, the total would exceed $350 billion.
"Our health care system would come to a screeching halt if that value were added to the current health care deficit," Williams adds.
"I will do anything you want to do. I will go anywhere in the world. But I will not sit here and do nothing." -- MD Anderson caregiver
Thirty-five caregivers who participated in the study were asked to place a mark on a timeline indicating when their caregiving journey began.
The hardest but most enlightening thing, Williams says, was to ask them when they thought the journey would end. The results revealed three similar themes:
Commitment -- make the patient a priority
Manage expectations -- learn to deal with the inevitable twists and turns of treatment
Negotiate the caregiver role -- seek help and share responsibilities; listen to the patient
Takeaways from the research
"He did have a lot of down days; we had disappointments we called bumps in the road. One night I got up and wrote a poem about a bump in the road." -- MD Anderson caregiver
It's important, Williams says, for caregivers to take care of themselves: be in a supportive environment; maintain a healthy diet and exercise; let feelings out and get away from the reminders of the illness.
While Williams says the research confirmed that a support system is in place within MD Anderson, participants also offered a number of suggestions:
Show caregivers how much we appreciate them.
Give them clear, concise, realistic information about what to expect and how to care for the patient.
Provide information and opportunities for self-care.
Have them write stories or journal their experiences.
Recently, during Caregivers Week, Williams shared her data with a group of patients and caregivers at MD Anderson.
Her message resonated with Mario Garcia, whose wife, Missy, has been diagnosed with stage IV colon cancer. The young couple, in their 30s, recently moved to Houston from Oklahoma City to be in a more supportive environment.
"It's so nice to be in a place where people 'get it,' where they understand what the process is like," Garcia says. "I'm in the fight with my wife. I'm just as much a part of this as she is. When there's nothing available, I feel all alone."
Garcia's words reveal yet another life, another story -- one that willspur Williams and other medical professionals to continue to provide the support necessary to sustain caregivers in their journeys.