After Michelle Mercer’s husband, Doug, got in a severe motorcycle accident near their home of McAlester, Okla., he needed four years of rehabilitative care. That included stays in places as far away as Dallas and Tulsa and long lists of complex caregiving tasks once he was discharged. Those tasks fell to Michelle to manage.
At times, it has been overwhelming.
Michelle wasn’t always with Doug during his medical appointments, so she couldn’t learn by watching what medical staff did. If she wasn’t there to observe and take notes, she says, there was no follow up, nobody teaching her how to clean and bandage his open wound, transfer him from his wheelchair to a shower chair or keep his medications straight.
Caregivers Face Stress and Confusion
“You just get home with this pile of prescriptions and you’re looking at them going, ‘What are these all for?'” says Michelle.
At one point, while Michelle was moving Doug from their converted van to his wheelchair, his leg got pinned in the door and was broken, requiring 12 weeks in a cast and throwing off his rehabilitation schedule completely.
That’s one reason she decided to join a campaign to pass legislation in Oklahoma known as the Caregiver Advise, Record, Enable (CARE) Act. It’s supported by the AARP in Oklahoma and other legislatures around the country.
The bill has three main provisions:
- Require the hospital or rehabilitation facility to record the name of the family caregiver when a loved one is admitted for treatment.
- Require the family caregiver to be notified if a loved one is going to be discharged to another facility or released to their home.
- Require hospitals and rehabilitation facilities to provide explanations and in-person instruction about medical tasks that the family caregiver will need to provide at home, such as transferring a person out of their wheelchair, giving them medications or caring for wounds.
Ten states are working to pass the CARE Act this year, with Oklahoma — where the bill has passed in the Senate and awaits action in the House of Representatives — leading the way. Hawaii, Illinois and New Jersey are following close behind, said Elaine Ryan, vice president of State Advocacy and Strategy Integration for the AARP’s lobbying group.
The Need for CARE
A 2012 AARP study titled Home Alone: Family Caregivers Providing Complex Chronic Care concluded that American family caregivers are increasingly being asked to provide medical tasks for loved ones.
This study, along with a previous report, concluded that caregivers provided the equivalent of $450 billion in unpaid care in 2009, more than the cost of Medicaid that year. The reports also showed that, once discharged, 69 percent of care recipients didn’t receive any follow-up healthcare visits.
Common Sense Measures
Ryan, who was a caregiver for her mother and father for 15 years, said roughly half of the 42 million family caregivers in America have provided medical care for their loved ones.
“My father learned how to do the draw for the injections my mother needed, even though he could hardly see,” she said. “When he had to have several toes amputated, I learned how to change the dressings."
After four years of learning, Michelle Mercer said she doesn’t expect to benefit if the Oklahoma Legislature passes the CARE Act. But she favors it because “maybe it will be a little easier for the next person who has to deal with all of this.”
Other ideas to deal with the stresses put on caregivers are also under consideration by politicians, including providing support through caregiver tax credits, granting nurses more authority to provide care services and raising wages for in-home professional care providers, Ryan said.
“We’re not trying to turn family caregivers into medically-trained professionals,” she said. “But we’re reacting to the reality of the situation and appealing to common sense to help where we can.”
Larry Schumacher regularly writes about politics, policy and government. His work has been featured in USA Today and the Columbia Journalism Review, among other publications.