Center offers family caregivers coping tools, resources

November 15, 2013


For years, Bridget Lodge worked side by side with her father and fellow chiropractor, Paul Molthen. But when a stroke left him unable to work or live by himself, Lodge took him into her home and quickly found out, "I didn't know what I was doing."

Bridget Lodge with her father, Paul Molthen.

So she got in touch with the Caregiver Resource Center, a program of St. Jude Medical Center in Fullerton, Calif., and part of a statewide system of California Caregiver Resource Centers. For more than 25 years, St. Jude's center has been helping those who care for the aging or disabled to find resources, manage their own stress, learn about their legal and financial options and get support and understanding from others experiencing similar situations.

The National Alliance for Caregiving in Bethesda, Md., estimated in November 2012 that 65.7 million Americans — or 29 percent of the adult population — provide care for someone who is ill, disabled or aged. The AARP Public Policy Institute puts the economic value of these caregiver services at $450 billion a year.

Club sandwich generation

But when caregivers burn out or become ill or disabled themselves, a hospital or nursing home may become the only option for their family member.

"This is going to be a growing problem as baby boomers age," said Claudia Ellano, executive director of the Caregiver Resource Center. For some people, she said, the so-called "sandwich generation" that has been caring for both children and parents is becoming "the club sandwich generation," with grandchildren or great-grandchildren added into the mix.

"Not everyone seeks or needs help, but the research shows that an educated, supported caregiver can make a difference in patient care," Ellano added.

Burnout prevention

Founded in 1988 and offering services in English, Spanish and Vietnamese, the nonprofit Caregiver Resource Center is funded in part through contracts with the California Department of Mental Health.

Barry Ross, vice president, healthy communities at St. Jude, said the caregiver center contract was "the first government program that we ever applied for" and it represented a way for St. Jude "to provide something as a hospital that we were not able to do before.

"In the network of care required by a patient, the role of the family is so critical," he said. "We have to reach beyond when they are in the hospital. If we reach out in the community, we can prevent the (caregiver) burnout that can cause hospitalization" of the patient.

Practical help

The services offered by the Caregiver Resource Center begin with a family consultation, usually in the home. Karin Little, a family consultant and education coordinator for the center, described a typical consultation:

"We do a complete psychosocial assessment and a screening for depression, which is very common among caregivers," she said. "We ask about legal issues and medical insurance" and whether there are family financial difficulties. "We ask: What is the most difficult thing for you as a caregiver? What are your major stressors and how are you coping with them?"

Once a complete picture of the family dynamic has emerged, the consultant begins offering recommendations. One caregiver might benefit from a workshop on legal issues, another might need to know where to go to get someone to help him or her inside the home, and a third might need referrals for respite care to allow the caregiver to rest and recharge. Or one family might need all those and more.

"We help them get access to the somewhat fragmented array of services available for family support," Ellano said.

The Caregiver Resource Center used to provide respite care on an ongoing basis, but due to state budget cuts now only offers short-term, emergency respite care.

At the end of each family consultation, Little said the caregiver and the consultant work together to draw up a self-care plan and to set some goals for the future. The goals might be to get legal documents in order, to join a support group or set up a respite care plan. It could be something as simple as planning to take time every day for a pleasurable and relaxing activity.

"We work with them to recognize the need to take time for (one's self) every day, even if it is just to read the paper with a cup of coffee every morning or take a walk around the block," Little said. "That can make you a better caregiver — less irritable, better able to handle stressors, more loving."

Caregiver education

Education is a big component of the services offered by the Caregiver Resource Center — not "books and homework," Little said, but information about their family member's illness or condition in terms of treatment and prognosis, local programs that can help them and topics such as hospice care that might help them with future caregiving decisions.

Little said some people resist caregiver education, thinking they know all there is to know. But training can make caregivers more self-aware and able to access help when necessary.

"None of us has taken a course in caregiving in high school or college," she said. "And some don't self-identify (as care-givers), but that can be detrimental because if you don't identify that way, you won't look for help."

Time out

Lodge, a member of St. Hedwig Catholic Church in Los Alamitos, Calif., said the resources and workshops available through the St. Jude Caregiver Resource Center have helped her to "maintain my sanity" as she juggles running the family chiropractic business, homeschooling her three daughters (including one with special needs) and caring for her father and herself.

Her best advice for those who are new to caregiving? "As a Catholic, I would say praying the rosary daily. I could not do without it. And my spiritual reading at night."

More generally, Lodge recommends "taking time out for yourself" every day.

"When I wake up, I lie in bed for five or 10 minutes, so that I can get up in a positive frame of mind," she said. "It seems so simple, but you forget to take the time to think and reflect."


Copyright © 2013 by the Catholic Health Association of the United States
For reprint permission, contact Betty Crosby or call (314) 253-3477.

Copyright © 2013 by the Catholic Health Association of the United States

For reprint permission, contact Betty Crosby or call (314) 253-3490.