Content starts here
AARP AARP States Caregiving

Protecting Respite Care for Family Caregivers

Norma Jongsma helps her husband Sidney with lunch at a rehabilitation center in Zeeland. Photo by Matthew Gilson.

By Melissa Preddy

When Sidney Jongsma, 64, developed early-onset Alzheimer’s disease eight years ago, his wife, Norma, became his round-the-clock caregiver. Her only break was an hour and a half on Saturdays, when a relative would take Sidney to lunch.

“We are empty nesters, and I did it all myself,” said Norma Jongsma, 68, recalling the loneliness and exhaustion of dealing with her husband’s fading memory, hallucinations, outbursts and physical limitations. Finding help near their Zeeland home was a challenge, logistically and financially.

Eventually, until he entered a nursing home in July, Sidney was able to spend up to three days a week at an adult day center in nearby Holland. Norma knows that she was fortunate to afford the $68-per-day fee on her teacher’s pension, as the price tag puts even a day or two of adult care beyond the reach of many households.

“The more care they need, the more expensive it becomes—but the more they need care, the more of a break you need,” she said. “And I needed it desperately.”

Beefing up funding for such respite care and other assistance to the nearly 1.3 million family caregivers in the state will be one of AARP Michigan’s major goals when state lawmakers convene Jan. 13, said Lisa Dedden Cooper, advocacy manager.

AARP Michigan will be working with legislators to increase funding for subsidized respite care, which comes from a variety of state and federal programs.

“We know it works to reenergize the family and improve the quality of life for everyone,” said Dedden Cooper. “And we’ll be urging lawmakers to increase access to respite care in Michigan.”

Another priority of AARP Michigan is passage of the state’s version of the Caregiver Advise, Record, Enable (CARE) Act, introduced in 2015 by state Sen. Margaret O’Brien (R-Portage). It aims to better equip family caregivers with information and assistance when a relative or friend leaves the hospital.

The legislation would require hospitals to provide a designated caregiver with training in such tasks as wound care and administering medication when a patient is discharged. A version of the CARE Act has passed in 18 states.

A growing need
Residents 65 and older represent the fastest-growing age group in Michigan, and an increasing number of state residents can expect to provide support for frail or ailing family members. Currently, family caregivers in the state provide an estimated 1.2 billion hours of unpaid care, valued at $14.5 billion, according to AARP Public Policy Institute figures. Many, though, are ill-equipped for the task.

Advocates hope the CARE Act will improve communication and lead to fewer readmissions and better outcomes for patients.

“If you identify a caregiver when the patient is still in the hospital, you can talk about the environment they will be discharged to,” said Robert Schlueter, executive director of the Area Agency on Aging of Northwest Michigan.

Discharge plans can also address common concerns such as how to provide meals for the patient, or whether or not a wheelchair will fit through the doors in the home.

“It helps put them on the hospital’s radar screen and opens up a lot of doors for assistance and training,” Schlueter said. “People don’t have to struggle so much to get information.”

Last month, the Michigan Health & Hospital Association dropped its opposition to the act, declaring it was neutral because a revised bill reduced some mandates.

AARP Michigan’s legislative agenda also includes support for a bill giving advanced practice registered nurses (APRNs) greater authority in treating patients, to address shortages of primary care physicians.

Other goals include increasing retirement savings options for employees of small businesses and bolstering older citizens’ access to broadband and other telecommunications services.

“All of our efforts are about increasing access to resources people need in everyday life,” Dedden Cooper said.

AARP relies on volunteers from across Michigan to talk about legislative priorities with their elected officials as well as in their communities. To learn about advocacy volunteering, contact Careena Eggleston at or 517-267-8900.

Melissa Preddy is a writer living in Plymouth, Mich.

About AARP States
AARP is active in all 50 states and Washington, DC, Puerto Rico and the U.S. Virgin Islands. Connect with AARP in your state.