Jeanette Nekota, a member of the Central Oahu Caregivers' Support Group, earned her Master's Degree in Social Work from the University of Hawaii and a certificate from the institution's Center on Aging. For years she has served as a social worker at a large local Trust, dispensing advice and suggesting resources to caregivers and others seeking assistance. Previously, clients' blank stares and skeptical looks held little relevance to her. But in 1998, when Jeanette sought help for herself and her mother from the same list of resources, she discovered that "it was easier said than done." The waiting lists, the cost, program limitations, and services that often didn't fit her needs surprised and frustrated her.

"In 1997, my brother called from Seattle to say that my parents had been involved in a car accident." The visit to her home state revealed that her mother, Yoshiko, could no longer manage her own care and had lost the ability to verbalize. "She would pace back and forth, frequently fall, become disoriented, or attempt to wander away from her home." Jeanette's husband and two school-aged daughters agreed that Yoshiko needed to move to Hawaii. Her father and brother remained in Seattle.

Jeanette continues her career, has resumed her neighborhood board chairperson duties, and assists a daughter's efforts to learn with dyslexia. Her husband, suffering from a work-related back injury, offers much support, but physical restrictions hamper the amount of his assistance. Their home proved too small for five people and needed to be expanded and made accessible for a wheelchair. An adult day program needed to be found, records had to be transferred, and numerous unexpected problems had to be solved. All this while still offering long-distance care to her father. With no hospital-type respite available, work-required business trips have become a time of even higher stress, placing more demands on family members.

Yoshiko is no longer able to walk. Her upright appearance belies her total unresponsiveness and need for complete assistance. "If anyone asks, I say that I'm fine," Jeanette explains, "because nobody understands unless they have been a caregiver. I fully understand now. I didn't before. For me, being a caregiver requires constant juggling and rejuggling of schedules, never catching up with all that needs to be done, struggling to find appropriate assistance, living with fatigue, and so much more. But we want to keep my mother at home with us as long as possible, do the best we can to keep her happy and comfortable. We just try to do the best we can."