Beth became an unexpected caregiver early, when her husband had an extreme reaction to allergy tests a decade ago. The reaction led to an asthmatic condition that shut down his lungs. He went into a coma, but regained his ability to talk and eat once he emerged. The experience, though, left him blind and paralyzed. Their son was only 11 years old at the time.

“Not only did he lose his dad, he basically lost his mom. He didn’t have a normal childhood,” Beth says.

Their son helped care for his father over the years, and Beth appreciated the help she received from their church. 

The church men’s group fixed things around the house, and her church friends and other friends provided meals and socialization.

Beth ended up dedicating a substantial portion of her income to pay a friend of a friend to stay with her husband while she was at work. She looked into Medicaid while her husband was recovering in a long-term care facility; however, it was not a viable financial option because he had owned a business. She has since spent down all of their assets, except the house.

“At this point I’m just hanging on by a thread,” she says.

Utilizing Resources

Beth was unaware of resources for caregivers until recently; nobody had told her how to access them. When her husband turned 60, a coworker who cares for a husband with dementia suggested that Beth call senior services. Beth contacted McHenry County and was assessed through TCARE — software that analyzes caregivers for burnout and connects them with resources. Beth says it was a great experience. “They came in, made an appointment, explained everything to us.” Within 24 hours, Beth was connected with a support program.

Beth and her husband were then approved for in-home service for a couple of hours daily, but the worker was not able to tend to her husband’s most critical needs, such as giving medications and respiratory treatments, feeding, bathing, and going to the bathroom.

“Above all, caregivers need education about available resources and benefits.”

Services providers also referred Beth to a food pantry. She had thought the pantry was for older people with disabilities, but once she started going, she noticed that many of the people in line at the pantry were younger. She commented that she would have gone to the pantry much sooner if she had known about it and was eligible. She says she also felt frustrated with the logistics of getting to the pantry. She could never make it until 15 minutes before closing, when there was little food left.

What Policymakers and Society Need to Know

Above all, caregivers need education about available resources and benefits, Beth says. She envisions a hotline or group for caregivers at the national level. This could be a centralized access point where people find resources based on where they live.

“And I definitely think that the criteria need to be lower. Maybe you are not 60 years old, but maybe you have such a bad disability that you qualify,” Beth says.

In addition, she feels that society needs to pay attention to caregivers’ needs in the workplace. Though the Americans with Disabilities Act offers employees protections in the workplace, Beth says, “It does not cover caregivers.”

Above photo by Jim Vondruska
Originally published in the Winter/Spring 2024 print issue