Overview:
Family caregivers say aging relatives need more culturally responsive services, adult day programs and financial assistance as they balance work, family and around-the-clock care.
When a Sonoma County caregiver drops her mother off at an adult day program, the difference is visible.
“She paints, she sings, she exercises, she engages,” the caregiver said. “She literally dances out the door.”
Her mother has advanced dementia and can no longer communicate in ways most people understand. For her family, the program offers more than activities and companionship. It provides a brief break from the demands of nearly constant care.
The caregiver was among several Sonoma County residents who shared their experiences at a July 16 community briefing organized by American Community Media and the California Department of Aging. The event was held at Today & Together, a nonprofit adult day program on the Hanna Center campus in Sonoma Valley.
As Sonoma County’s population ages, relatives, friends and neighbors are increasingly helping older adults manage dementia, strokes, chronic illnesses, mobility challenges and other conditions. Much of that care takes place at home without pay, formal training or time off.
“We need more day programs and gatherings,” the caregiver said. “We need more respite, where you can take a weekend or maybe a week and take a vacation.”
For immigrant families, caregiving can also involve language barriers and cultural expectations about who should provide care.
A Vietnamese American caregiver said she helps her mother care for her grandmother, who speaks only Vietnamese. In her family, she said, children and close relatives are expected to care for older family members.
“It’s expected that the children or immediate family help out with caregiving,” she said.
Those expectations can make it difficult for older adults to accept outside help, even when relatives are exhausted. Vietnamese-speaking care providers and culturally familiar services also can be difficult to find.
The caregiver, a social worker and family consultant, said she often helps relatives understand hospital documents, complete forms and communicate with government agencies. Although she was born in the United States, she said her Vietnamese is not always strong enough to translate complex medical and administrative information.
She also is raising two young children, placing her among the “sandwich generation” of adults caring for children and aging relatives at the same time.
Another speaker described becoming a caregiver while raising young children and managing her own health condition.
She first helped care for her father, who became seriously ill in his late 80s. After he died, she believed the most difficult period had ended. Several years later, her mother had a stroke, placing her back in a caregiving role.
She described the strain of making medical and financial decisions alone while not knowing how much her mother would recover.
A Spanish-speaking caregiver told the gathering that she stopped working when her mother became ill. She later cared for her father, who had diabetes and dementia.
Although the caregiver had nine siblings, an interpreter said she often felt alone because other family members did not understand the complexity of her father’s needs. She tried to maintain a part-time job while spending the rest of the week caring for him.
Her experience showed how caregiving can disrupt employment, housing and family relationships. Caregivers who repeatedly miss work or leave their jobs can lose income as medical, transportation and household expenses rise.
“Her life was taken completely over,” the interpreter said.
Adult day programs can help older adults remain at home while giving caregivers time to work, rest or attend to their own health.
Today & Together provides structured activities, meals and supervision for older adults, including people with dementia, memory loss and cognitive changes related to strokes. Participants return home each evening, allowing relatives to continue caring for them at home while receiving support during the day.
California adult day programs also can provide art, music, exercise, meals, health monitoring and caregiver education. The California Department of Aging describes the programs as an option for people who need daytime assistance but do not require 24-hour skilled nursing care.
Sonoma County has identified expanding respite programs and adult day care as priorities in its local caregiving plan. County officials also are considering ways to provide more financial support to people who reduce their work hours or leave their jobs to care for loved ones.
Caregivers can contact the Sonoma County Area Agency on Aging for help finding local programs. California’s Caregiver Resource Centers also provide care planning, counseling, support groups and help arranging temporary respite care.
For families at the Sonoma gathering, the message was clear. Caregivers may provide support out of love, duty or cultural tradition, but they cannot be expected to do the work alone.
“First, you have to get into the system, and you have to navigate that system,” one caregiver said. “And that starts here today.”
