Seeking Caregiver Support

Illinois Family Caregiver Coalition gives caregivers a voice, connects them with resources

Balancing a career with caregiving put Amy Brennan in a precarious position. In 2016, the Chicago resident took five months off work with partial pay, through the Family Medical Leave Act. Her mother was in the final stages of cancer, and Brennan needed to take care of her.

Still, she remained dedicated to her job at a large bank, responding to emails and keeping up with her work in the evenings. It was only during the last two weeks of her mother’s life that Brennan stopped working completely. And that’s when her boss expressed resentment toward her for the work that was piling up on his desk, rather than acknowledging the sacrifices she was making as an unpaid family caregiver.

Brennan says her boss retaliated against her when she returned. Eventually, she walked away, focusing on jobs where she could help others going through unpaid family caregiver challenges.

Today, Brennan serves as the executive director of the Illinois Family Caregiver Coalition, raising awareness about the plight of unpaid family caregivers. She advocates for family caregivers in Illinois, connecting them with the services they need to keep their loved ones at home as long as possible, while also keeping caregivers’ stress levels as low as possible.

One in 5 Americans is an unpaid family caregiver, and although Brennan says Illinois has worked to build a strong network of Caregiver Resource Centers throughout the state, the coalition aims to build on that foundation. “When you’re in the middle of it, it’s overwhelming, almost like a scavenger hunt. You’re going through a maze, trying to find the resources you need. It’s why all of us want to help the folks who are in the midst of this windstorm.”

The Illinois Family Caregiver Coalition formed in 2022 with a $4 million grant from the Retirement Research Foundation for Aging. Stakeholders include upwards of 200 members, such as area agencies on aging, associations, family caregivers, healthcare providers, hospitals, human services organizations, non-profits, veterans’ groups, and more. They participate in monthly calls and stay updated on new developments in the state.

“The goal is to raise awareness of the needs of unpaid caregivers, keep people employed, support them in terms of stress levels, and provide them with enough support to keep them going,” says Diane Slezak, CEO of AgeOptions in Oak Park.

AgeOptions is a local nonprofit agency known as a Triple A — an area agency on aging — that plays an active role in the Illinois Family Caregiver Coalition. One of the services AgeOptions offers caregivers is a tailored assessment tool called TCARE, which hones in on what caregivers need to better support their loved one at home.

Slezak says a study conducted in Washington revealed that caregivers who received tailored services based on TCare assessments kept their care recipients at home, and out of skilled nursing facilities, 18 months longer than those who did not.

“The idea is to provide what the caregiver most needs,” Slezak says. “How can we help pinpoint the individual needs of caregivers, so we can address them specifically? It’s not one-size-fits-all.”

Currently available through AgeOptions and other aging resource centers, the city of Chicago will also soon offer TCare assessments — an example of how the Illinois Family Caregiver Coalition has advocated to bring more tools to more caregivers.

In coalition meetings, members discuss which programs are working, what gaps need to be filled, and what more can be done. The Coalition emulates successful programs from more than a dozen other coalitions already established across the country. They advocate for policy changes and resources, and help employers understand how they can support caregivers in the workplace.

“There’s a lot being done around the country on behalf of unpaid family caregivers, and Illinois didn’t have one organization to speak on behalf of them,” Brennan says.

The Coalition fills that role. “The idea is to bring all voices to the table, to have input on what more we can do in Illinois based on best practices from around the country. There’s more we can do and should do to support folks during this very overwhelming time, so their stress level is reduced, financial burden is not as high, and their jobs aren’t in danger, because they’re giving their time and energy to help loved ones,” Brennan says.

Brennan welcomes current and former caregivers to join the coalition and share their knowledge with the group. Caregivers can learn a lot from each other and in the process, help move the needle forward.

To be connected with an agency on aging in your area, call the Illinois Department on Aging’s senior hotline at 1-800-252-8966.