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Modesto Ellano is dying of chronic obstructive pulmonary disease.
He's been dying of the disease - and on a hospice program - for 18 months. Average time for a terminally ill person on hospice is six months.
"I'm still hanging in here," Mo says when the hospice team arrives every week.
And his "hanging in here" is turning into an educational experience for his wife, Claudia. An experience she would rather not have but one that she is determined to share.
Claudia is the director of Orange Caregiver Resource Center in California, an agency serving more than 5,000 families in which someone is caring for an adult over 60.
She's also among 52 million Americans assisting an older person or disabled adult. And like 65 percent of these caregivers, she juggles personal and work responsibilities.
When Mo first went on hospice, Claudia worried each breath was the last. She telecommuted from home. She sat beside him on the couch in their modest home and ate ice cream every night. She gained 40 pounds, and he kept wasting away. They comforted each other.
They knew what they were doing. Both of them are social workers. Both know the dynamics, the professional analysis. They understand bouts of anger, dependency on each other, their close relationship after 14 years of marriage.
But Claudia is learning something more.
"Caregiving is a journey," she says. "There are lots of detours and challenges along the way. What helps at one stage may not work at another."
As she cared for Mo, as she measured her days to his, she became dependent and isolated, she says.
His medicines, his laptop computer, his nebulizer and other inhalers, all were the measurements of her life.
"At one stage, being at home a lot might be best for everyone. But six months down the road it might not be," she says today.
It took a professional colleague to point out to Claudia that she needed to get back into the mainstream of life.
"We are managing the caregiving now," she says. "The days have become routine, and it was time to retool. It was good for me to have an outside interest like work. But it took someone else to make me realize I had to take advantage of that opportunity. I had to learn to rebalance my life."
Too many women - and 75 percent of caregivers are women - take no breaks from their full-time caregiving job.
They often die first. Succumbing to exhaustion, mental fatigue, depression.
Fewer than 20 percent of the families who need care receive formal support through paid services, Claudia says. She labored to expand benefits for working caregivers, including rallying local support for California's new Family Medical Leave Act.
Under the act, workers are guaranteed six weeks of benefits payments a year.
She's an advocate for respite care for caregivers - programs offered through various public agencies, such as Orange Caregiver Resource Center - that provide outside help for a day or a week. Help that lets the 24/7 family caregiver take a day off.
She knows the signs of fatigue in others, but it took an outsider to point out her own decline.
"I had to be confronted just like everyone else," she says.
Caring about others is what makes us human. But we often have to learn how to take care of ourselves at the same time.
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(Jane Glenn Haas is the author of "Time of Your Life: Why Almost Everything Gets Better After Fifty." She writes for The Orange County Register. Write to her at: The Register, P.O. Box 11626, Santa Ana, Calif. 92711, or send e-mail to jghaas@aol.com, or through her Web site, www.womansage.com.)
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(c) 2004, The Orange County Register (Santa Ana, Calif.). Distributed by Knight Ridder/Tribune News Service.
