When the car Carol Levine's husband was driving skidded off an icy road and tumbled down an embankment in 1990, she was plunged in an instant into 17 years as a caregiver. Though Levine, a passenger in the car, was uninjured, Howard Levine sustained serious brain injuries.
"I had a lot of bad days during those 17 years," says Levine, who was diagnosed with posttraumatic stress syndrome as a result of the accident, "but one of the worst was when Howard went from the acute setting, where I thought I finally understood what was going on, to a rehab setting, which was totally different and where there were many different expectations of me."
In acute care, Levine says, she was a considered a "visitor," while nurses and aides took care of everything. "In rehab, I was expected to do laundry, feed my husband (when he was finally off the feeding tube), and keep him quiet and submissive, although he was frustrated and angry, as are many brain injury patients.
"In acute care, following the main doctor's lead, everyone acted as though Howard would recover fully. In rehab, it was assumed that I knew that he would not fully recover and so my questions and prodding were seen as 'denial.'" In fact, Howard Levine recovered significant, though erratic, cognitive function, though he was never able to take care of himself.
"Transitions are extremely difficult," says Levine, the editor of Always on Call: When Illness Turns Families Into Caregivers. "I didn't realize how hard it would be when my husband had to go into the hospital or come out, go into rehab or come out. The discharge process and the whole experience of going back and forth are really traumatic. I wish I had better known how to handle that."
Fortunately, Levine is the director of the Families and Health Care Project of the United Hospital Fund (FHCP), which is devoted to advancing public and professional understanding of the role of family caregivers and developing policies to support them. So she was in a position both to understand the issue firsthand and to try to ease it for other family caregivers. Transitions are a growing issue, says Levine, because hospitals are discharging patients ever earlier, sending them to rehab for part of their recovery.
Early in 2009, FHCP is launching Next Step in Care: Family Caregivers and Health Care Professionals Working Together, a campaign and website that will provide comprehensive materials to help make caregivers more informed and empowered during the process.
"Altogether, we have 16 guides for caregivers and 3 for healthcare providers," Levine says. "For example, one is a guide to medication management, because people are taking so many meds. Yes, the discharge nurse will give you a list of the prescriptions, but then you need to know what they're for, how to make sure that all of the ones that were routine before are back on the list and whether or not the dosages have changed, and what to do when the pharmacy and the hospital formularies are different. That's a big source of confusion and error."
Another downloadable guide focuses on the Health Information and Privacy Act (also known as HIPAA, the Health Insurance Portability and Accountability Act, designed to protect patient privacy and confidentiality of medical information). "That has been so misinterpreted by healthcare providers," says Levine. "This is to help providers and family caregivers know what it's for and how it should not be used as a screen to keep caregivers from getting the information they need."
There's also a family caregiver needs assessment, which Levine calls a "real-world introduction" to homecare and rehabilitation. "It's mostly to assess what things can you do, what things you could do if you were trained in it, and what you just aren't going to do. It gives family caregivers the sense that they're entitled to ask for help and not be expected to do everything. There's a kind of expectation that if you're willing to do one thing, you're willing and able to do everything. And that's just not the case."