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Thousands of Iowans are caregivers. Most are doing it without pay

A map of nine Midwest states show how many unpaid caregivers there are. It ranges from 62,000 in North Dakota to more than one million in Illinois.
Phineas Pope
/
IPR

Caregivers in Iowa are struggling: thousands of them aren't being compensated for their care and must dip into their own savings to pay for caregiving expenses.

According to the AARP, 330,000 caregivers are working without paywhile caring for loved ones and family members who are unable to care for themselves due to age, illness or disability.

The costs of caregiving

Elise Free is a caregiver to her 17-year-old daughter, who was born with cystic fibrosis and needs professional care regularly. A single mother, Free and her daughter moved back to Des Moines from California to be near family. Free told Talk of Iowa she's lucky to work from home and has supervisors who are very understanding, but that support doesn't ease the ongoing financial obligations she faces in caring for her daughter. She says that people assume caregiving is a hands-on job only, and forget about insurance and financial challenges.

"Dealing with health insurance companies and getting the right care — that is so time-consuming. That maybe takes up more of my time than actually caring for her, physically," she said. "And that has probably been one of the biggest struggles, just managing care."

Medications aren't cheap, either. Just one of her daughter's medications costs more than $300,000 a year — and every single one of her medications is life-saving.

"She has a medication that is a pancreatic enzyme, and without it, she can't eat food," said Free. "It's not like, okay, she can miss a couple of days or miss a dose."

"There is a sense of guilt, too, that comes with it, because I wish I could do a lot more than I can."
Elise Free, caregiver

Free's daughter lives independently for the most part. She drives, goes out with friends, comes home late and takes her medications on time. Free handles phone calls and various appointments. She notes it will be tricky preparing her daughter to deal with insurance red tape.

"It's going to be a gentle transition," she said.

 Elise Free stands with her daughter on a large rock.
Gary Rhoades
/
Courtesy of Elise Free
Elise Free with her daughter (age 7)

Free also identifies with the "sandwich generation." Like Free, these are adults "sandwiched" between raising their own children and caring for their parents. Since moving back to Des Moines, Free has also been able to help care for her father, who has Alzheimer's disease. Her mother is the primary caregiver, but Free worries that her mother may not be able to continue the more demanding tasks as both of her parents get older.

"There is a sense of guilt too that comes with it, because I wish I could do a lot more than I can," she said.

Caregiving also has an emotional toll. The job can be stressful and isolating. For her emotional and physical health, Free goes on daily hikes, even in Iowa winters. She's active in maintaining her emotional and physical health, but personal care is an added challenge in considering and managing care for others.

For others, personal health can fall to the wayside.

"I've read some studies that have shown that an average caregiver their life expectancy will decrease four to eight years, just because of being a caregiver and the stress that it takes on them." Alisha Frady is a caregiver specialist at Connections Area Agency on Aging. "Caregivers are constantly worried about the person they're caring for. They have a lack of support, or they're hesitant to ask for help. They can be lonely because you're, you're just focused on, on your loved one and taking time for them instead of reaching out to others."

Caregiver resources provide community tools

Support systems around the state are in place to alleviate the challenges unpaid caregivers face. Frady works with older Iowans and caregivers to assist with things like finding rides to appointments — which is especially important for caregivers living in rural Iowa — and offering workshops and tools.

Frady says people often call the agency when they are "at their wit's end." She says that for people who find themselves in a caregiving situation, "the earlier the better" when it comes to planning and asking for help or advice. That way "you know about what resources are out there."

She says that sometimes, though, caregivers just need someone to listen to them.

Jan Blevins, a caregiver to her husband in Cedar Falls, found the Alzheimer's Association after she started to notice her husband showing signs of memory loss about a decade ago. "They say caregiving is 24/7, I say with my husband, it was 24/7/3. Because for many months, and probably years, he just wanted to be about three feet away from me." Blevins said she understands that her husband was searching for comfort, but it was still hard. "There gets to be a point when it's just overwhelming ... there was never really any breathing point."

Blevins now is a member of support groups with other caregivers who are going through and have been through similar experiences. "You could just talk about it. You could share anything and everything. We laughed more than we cried, because you had to look at things with a good sense of humor," she said.

What can we do better?

"I think we are failing our caregivers right now.”

Paige Yontz is the State Advocacy Manager at AARP Iowa. The organization recently released a report that shows the unpaid labor that caregivers contribute around the state and makes suggestions about changes that can be implemented to help caregivers.

Yontz said the resources available to caregivers aren't able to help all Iowans in the short term. In the long term, however, increasing education and awareness as well as expanding statewide access to aging agencies and respite care may help take some of the pressure off of caregivers.

In addition to education and awareness, Yontz says expanding research into caregiving populations and unmet needs is crucial. This would "provide some numerical data to back up these anecdotal stories that we're hearing from people."

Finally, expanding access to address gaps in care is crucial, says Yontz. One example of this would be increasing sources of and access to respite care. "We have a lot of home and community-based service deserts in the state of Iowa. But we know that more than 85% of Iowans want to age in place in their own home."

The next step, says Yontz, is to have these conversations on federal and state levels. “There is actuallya billthat's sitting out there right now called the Credit for Caring Act. And Sen. Joni Ernst is actually a huge proponent of this. And she indicates providing a federal tax credit for up to $5,000 for eligible caregivers could be a huge relief and provide some financial support to them.”

Resources
If you provide care for an individual and need support yourself, here are some resources available to you:

Free, Frady, Blevins and Yontz made their comments on Talk of Iowa. Listen to that conversation here.

Phineas Pope is a digital production assistant at Iowa Public Radio
Caitlin Troutman is a talk show producer at Iowa Public Radio
Charity Nebbe is the host of IPR's Talk of Iowa