When my 87-year-old mother was hospitalized for the second time in as many weeks with congestive heart failure, my siblings and I rallied to her bedside. I was visiting when she was discharged and, along with my brother who lived nearby, I set out to make sure doctors’ orders were followed.
That meant a new medication regime, a low-salt diet and the purchase of some items to help my weakened mother move around safely. It also meant sleeping over at her apartment in case my mom, who was not one to ask for a hand, needed assistance.
The first night I lay awake, listening for a call that never came. The second night, on my brother’s shift, she fell on her way to the bathroom.
Our story is not unique. “More and more, people recover at home,” says Laurel Northouse, a professor emerita at the University of Michigan School of Nursing. “It used to be common to stay in the hospital longer.”
Recovering at home means no more hospital staff dispensing medications, taking vital signs or watching for worrisome symptoms. Very often these tasks are adopted by family members, friends and neighbors who play an increasingly important role in American health care.
An estimated 44 million Americans serve as informal, unpaid caregivers each year, most of them aiding adults, according to the AARP Public Policy Institute.
Often, their role — and the demands placed on them — get little attention. Emotional strain is common, and caregiving can also be physically and financially demanding. But research is finding that giving them more attention may benefit both caregiver and patient.
When Northouse turned her research focus to family caregivers of cancer patients, she would talk to health-care providers for input. “They’d say, ‘I think it’s fine that you’re trying to help caregivers, but my focus is on the patient.’ ” That prompted Northouse to start measuring what happened to both caregivers and patients.
Some advice exists. The National Cancer Institute, for example, has a booklet available online called” Caring for the Caregiver.”
Giving caregivers health information and tools can also help. When doctors acknowledge and support caregivers as part of the health-care team, patients recovering from hospital stays or dealing with chronic illnesses do better.
“There are studies that show caring for the caregiver results in improved outcome of the patient,” says Ana María López, a medical oncologist at the University of Utah.
One study assigned “transition coaches” to 83 elderly patients about to be discharged from hospitals into the care of a family member. The coaches visited patient-caregiver pairs first in the hospital, then at home, and followed up with at least three phone calls. Researchers documented improved medication-taking, improved quality of care, and a high level of satisfaction from both caregivers and patients compared with usual-care scenarios, in which patients alone received diagnosis information and post-discharge instructions.
Northouse’s review of studies found that giving education and support to caregivers improves the physical and emotional well-being of cancer patients. It also decreases the emotional distress experienced by caregivers and improves their confidence in giving care. “Caregivers’ and patients’ well-being are interdependent,” she says.
Now, Northouse says, the challenge is getting this information to hospitals. There are barriers. Doctors don’t have time to work with someone who’s not a patient, and they’re not reimbursed for doing so. When family members are present, doctors include them in the conversation about the patient’s condition but may not ask how they are reacting to their loved ones’ illness.
López, who chairs the ethics, professionalism and human rights committee of the American College of Physicians, says medical practice is undergoing a shift. “There’s increased thinking about integrated medical care — to really partner with the patient in their care,” she says. “And that needs to include family members.”
My mom died six weeks after her first hospitalization. All five of us kids provided full coverage for her and my dad, which ended up being quality time. Truly.
Don’t wait until caring for the caregiver becomes a regular part of health care. Here’s what family caregivers can do now:
●Get the information you need. “Don’t be timid, and don’t worry about bothering the provider,” Northouse says.
●Ask about what to expect in terms of level of care and anticipated recovery.
●Find out what to watch for, when to call for help, when to bring the person back to the physician or the hospital. “Caregivers are the eyes and ears and decision-makers to get patients additional help,” Northouse says.
●Take care of yourself. “It can be as simple as taking a shower or running errands,” López says. “Make a list of things you can do to replenish yourself.”
●Find resources in your community. “Do you have a friend you can call at 2 a.m.?” López says. Even if you never call, it can be helpful to know you could. Lopez also advises to consider joining a caregivers support group.