Jim Danowski has been living with multiple sclerosis for more than 30 years, with good days and not-so-good days.
The Scottsdale man’s wife, Bonnie, has seen him through, providing the kind of 24-hour care only a devoted family member can.
It’s because of Bonnie Danowski, and 500,000 other family caregivers in Arizona, that the infirm and the elderly can remain in their homes — not go to a nursing home, assisted living facility or group home.
"That scares the hell out of me," Jim Danowski said. "I don’t want to go."
Family caregivers in Arizona provide services valued at $4.6 billion a year, according to a new study by the National Family Caregivers Association.
The report was released last week in Washington, D.C., at a town hall meeting with congressional members and family caregivers, including Bonnie Danowski. The group is calling for a national movement to raise awareness and funding to help families care for their loved ones, thereby reducing health care costs.
A bill to provide $90 million in respite care is working its way through the U.S. House of Representatives. Respite care allows caregivers to get a break for a few hours or a few days.
It’s difficult to find consistent help, as Bonnie Danowski discovered several years ago when she took a trip out of town.
Jim had suffered a severe MS attack and required constant care for more than a year, during which time Bonnie barely left the house. She needed a break, so she arranged for their son to stay at the house overnight and a paid caregiver to come during the day. Jim had six different caregivers in five days.
"I kind of went on a mission . . . to find out if other family caregivers were going through the same thing," Bonnie said.
Arizona receives about $2 million for respite care through the federal Older Americans Act. In Maricopa County, the money serves 160 low-income families, with 70 families on a waiting list, said Laraine Stewart, deputy director of the Area Agency on Aging, which administers the county’s funding.
Family caregivers have been around as long as families, but Stewart said their role is beginning to be recognized.
"People are saying, as a matter of public policy, if we don’t start caring for (our own) family members, we’re never going to be able to afford long-term care for this growing population," she said.
The demographic trends are undeniable. Since 1990, the number of Arizonans 65 and older has increased by almost 40 percent. Within 20 years, one in five Arizonans will be 65 years or older.
"Now, all of a sudden, we’ve got a whole generation that’s taking care of their parents," said Paula Goblet, a nurse who runs an independent living service at the Foundation for Senior Living. "And we’ve never done this before. We don’t know how to do it."
Goblet usually hears from families in crisis, when a parent or spouse has been hospitalized and needs more care than the family can provide at home. Her fee-forservice agency does everything from shopping to nursing care, above and beyond what is covered by insurance or Medicare.
Among seven siblings, Goblet said her family has arranged services that will keep her parents in their home "until the day they die."
"We need to educate people about what the options are, and that nursing homes are not always the appropriate placement," she said.