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Care for the Caregiver

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loretta williams.jpg"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.

"Caregivers are an absolute necessity," says Williams, now an assistant professor in the Department of Symptom Research at MD Anderson.

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.

"Telling" stories
"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

Williams' research focused on three things:
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.

3 Comments

I am not surprised by these research findings, nor by the estimated dollar value of the contributions made (usually) by family caregivers. I can also appreciate the comments by Mario Garcia. In some ways, this is the way things have always been, especially inside families. The adage that "Home is where, when you have to go there, they have to take you in" speaks to this, perhaps. But today's families are different than they were even a few decades ago. Today, to offer the kind of care once assumed would be available in the home, some people have to take a leave from a job--maybe the only job bringing income into the household. Then, too, with the greater mobility of our population, the aunts, uncles, cousins, children and siblings of the caregiver are often far away, unable to provide support and respite. Somehow governments need to realize the value of what caregivers provide in ways that translate into dollars and good sense. Thanks for this interesting report.
Linda Watson
http://talkaboutdeath.blogspot.com

is there a support group for caregivers at MD Anderson, Houston?

a group to offer a bit of socialization to those isolated in a strange city that are struggling to take care of their loved ones ?

MD Anderson has a variety of resources for caregivers. You may choose to get support at the hospital or communicate with other caregivers over the phone.

Would you like to speak with another caregiver who has cared or is caring for a loved one in treatment?

If so, call the Anderson Network Patient and Caregiver Support Line at (713) 792-2553 or toll-free at (800) 345-6324.

We suggest visiting the website for a full list of resources for caregivers--

http://www.mdanderson.org/patient-and-cancer-information/guide-to-md-anderson/patient-and-family-support/anderson-network/support-programs/anderson-network-support-programs-caregiver-support.html

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