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It took three siblings and their spouses to manage the care for Kathy Bandstra’s mother-in-law.
Before the 90-year-old, who had dementia, entered residential care last year, the six middle-aged adults rotated responsibilities for her weekly care. The chores—making and delivering meals, organizing medical care, handling financial and legal issues—were tiring, said Bandstra, 71, who used to make the 90-minute round trip on weekends with her husband from their home in Mount Pleasant in southeastern Wisconsin to the Burlington area. The family also felt worn down by the stresses of communicating and coordinating care among the many health care specialists and home-care services.
Bandstra maintained her equilibrium by reminding herself to enjoy the enthusiasm for friendships and social life of her mother-in-law, who died in September.
“The real stress was seeing her decline and trying to help her,” Bandstra says.
AARP Wisconsin estimates that the state’s 580,000 family caregivers provide the equivalent of about $7 billion in free services annually.
But legislative proposals that would provide financial support for this group remain in limbo, says Helen Marks Dicks, AARP Wisconsin’s state issues advocacy director. A tax credit for family caregivers was included in the 2021–23 state budget proposed by Gov. Tony Evers (D). However, the Legislature ultimately opted for broad reductions in the state income tax, instead of targeted relief to caregivers and other groups that had appealed for specific help.
“I’m extremely disappointed because we had support from both sides,” Dicks says.
Federal tax credit in play
AARP is continuing to advocate for the family caregiver tax credit, which could offset some of the direct costs to family caregivers, such as the transportation expenses the Bandstras picked up for their weekend treks to help her mother-in-law.
The cost to the state would be roughly $200 million over two years, according to Dicks.
Nationwide, 78 percent of family caregivers spend an average of $7,242 annually on caregiving, AARP research shows.
Meanwhile, AARP is pursuing alternatives, such as an expansion of the Wisconsin Family and Medical Leave Act to include caregiving. The law currently provides unpaid time off for certain employees who have a serious health condition, a family member with a serious ailment, or the birth or adoption of a child.
It is also advocating at the national level for the Credit for Caring Act, which would create a federal tax credit to help with family caregiver expenses.
The COVID-19 pandemic has trained a harsh spotlight on the sacrifices that caregivers, especially women, make to ensure the well-being of older loved ones—often to the detriment of the caregivers’ own financial security, says Lisa Lamkins, AARP Wisconsin’s federal issues advocacy director.
Lori Hilgart, 63, of Rudolph, juggled career and caregiving for her two parents, who have since died. As an AARP volunteer advocate, Rudolph has testified at the state Legislature on issues important to older adults and believes that lawmakers should take a comprehensive approach to support for family caregivers.
Reframing paid family leave to include caregiving for older loved ones would ease conflicts for caregivers who must continue to work, she says.
“Employers need to realize that people are actually losing income because of the time they had to leave work to be with their parents,” Hilgart says.
Stay up to date on AARP Wisconsin’s caregiving advocacy efforts and find resources at aarp.org/wi.
Joanne Cleaver is a writer living in Charlotte, North Carolina.
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