Like most family caregivers, Nancy Okunami didn’t anticipate the job but accepted it without question.

Hideo Okunami’s gradual descent into Alzheimer’s disease has brought on new responsibilities — she does all the driving, pays the bills and makes all the phone calls — and left little time for herself. He’s no longer allowed to use the stove and is unable to do fix-it projects around the house.

“Sometimes you feel like you’re going to crack up,” Nancy, 81, says with a laugh.

Through the local chapter of the Alzheimer’s Association, she learned about a day care program at Love of Christ Lutheran Church in Mesa, where her husband spends Wednesday afternoons. That gives Nancy some quiet time at home to catch up on paperwork and correspondence.

She’s among nearly 600,000 people in Arizona who are providing more than three-fourths of all care for people with chronic, long-term illnesses or disabilities.

The care they offer for free to spouses, children or other family members is estimated to be worth more than $5 billion. But asked in surveys about their needs, most say they’d just like to have a break.

Many caregivers don’t have access to respite care, don’t know how to find it, don’t know that they qualify for it or don’t have time to think about it.

But 24/7 caregiving, even for someone you love, can be a prescription for burnout. That can lead caregivers to give up and put their loved one in an institution.

“It’s the subjugation of your life to someone else. And it wears on people,” said David Besst, caregiver resource specialist with the state Department of Economic Security. “Until you walk in their shoes, you’re never really going to understand.”

After toiling mostly behind the scenes, family caregivers are organizing in Arizona to call attention to their work, their needs and their loved ones.

A rally Thursday at the state Capitol will celebrate a new coalition and a new program that provides a break to these informal caregivers so they can take care of themselves.

With a law passed last year, Arizona became the fifth state to launch a formal respite care program aimed at filling the gaps in services and drawing millions in federal dollars.

The law also led to the Arizona Caregiver Coalition, a group designed to promote caregiving, tackle challenges, advocate and get the word out.
Caregivers for people who are developmentally disabled, over 65 years old, or in the state’s long-term care system can qualify for free respite care.

But a new University of Arizona study shows that tens of thousands of local caregivers don’t fall into those categories.

They care for their own grandchildren, loved ones with terminal illnesses who have more than six months to live, children without a diagnosed disability but who are still impaired, veterans who don’t quality for VA services and spouses in the early stages of dementia.

“It’s kind of a potpourri of people who have fallen through the cracks,” Besst said.

About 75 percent of grandparents who take care of their grandchildren are under 55 years old and too young to qualify for a federal support program.

But they could get help from the new Lifespan Respite Care Program, administered through local Area Agencies on Aging.

Arizona’s respite program is patterned after federal legislation that was supposed to deliver about $50 million to states. Congress has failed to fund the law, but advocates are hopeful that the money will come with a new administration.

Family caregivers who get breaks tend to stay on the job longer, keeping people out of nursing homes and other institutions and saving money for families and taxpayers.

After helping his wife raise three children in suburban Chicago and retiring from a successful engineering career, Hideo Okunami, 81, is negotiating the middle stage of Alzheimer’s disease.

He still helps Nancy with the dishes at their Gilbert home and enjoys their twice weekly exercise classes.

The couple’s eldest daughter and her family live nearby and they recently flew their son in from Austin so he could do some home repairs, including work on the kitchen sink.

Nancy and her children have talked about the future and where Hideo might live, fully aware that dementia holds only one ending.

“It’s stayed at a certain level for a long time,” she says. “But gradually, very slowly, it’s going downhill.”