The term "informal" or "family" caregiver refers to anyone who provides unpaid assistance to a loved one who is, in some degree, incapacitated and needs help: a wife with cancer; a grandfather with Alzheimer's; a brother with a traumatic brain injury.
According to the Family Caregiver Alliance, there are approximately 52 million family caregivers in the United States providing either short- or long-term care for an ill or disabled loved one aged 20 or older. Nearly one in five provides more than 40 hours of care per week. These numbers continue to grow due to the high cost and limitations of heathcare and the aging baby boom generation.
"You don't have to be doing it 24/7," says Donna Schempp, program director for the San Francisco-based FCA. "If you are doing things like bringing over meals or helping with laundry, you should identify as a caregiver."
But the caregiver's role also can include full-time cooking, cleaning, running errands and handling bills, feeding, bathing and dressing their loved one and, in some cases, providing complex medical care, such as administering shots and medications, flushing ports and dressing wounds. In addition, they often provide emotional support and manage erratic behavior.
"It's a really tough role," says Kimberly Stump-Sutliff, a registered nurse and associate medical editor for the American Cancer Society. "A leukemia patient in one of my support groups whose wife had lymphoma said that he'd rather be the one with cancer than the caregiver any day."
In light of the overwhelming responsibilities, most caregivers tend to disregard their own health, often skipping routine checkups, eating poorly and failing to get adequate sleep, exercise and personal time. The higher incidence of stress contributes to increased cortisol levels, which make caregivers more susceptible to problems like high blood pressure, compromised immune function and cognitive impairment. Sleep deprivation can lead to weight gain, fatigue and mood disorders.
"Caregivers have a 50-percent higher incidence of depression," Schempp said.
The solution for prevention is to make it a priority to take care of yourself. It may sound selfish or impossible when your loved one is gravely ill, but you can't provide optimal care if you are also sick, said John W. Anderson, author of "Stand by Her: A Breast Cancer Guide for Men."
Anderson had such poor immune function while caring for his wife as she fought breast cancer, that he developed Lyme disease and tested positive for exposure to tuberculosis.
Caregivers must keep up with their own medications and doctor's visits. They also should consider following the ACS Nutrition and Physical Activity Guidelines: Maintain a healthy weight; eat a diet rich in produce and whole grains; limit alcohol consumption; get 30 to 60 minutes of exercise at least five days a week; and don't smoke. These steps reduce the risk of cancer, heart disease, diabetes and other illnesses. And a healthy caregiver is a more capable caregiver.
Taking care of your body includes taking care of your mind. That could mean reading a book, finishing a project or going out to dinner with friends.
"It's easy to think that you always have to be there, but you need breaks to recharge your batteries," Anderson says, "and the truth is that your loved one needs breaks from you, too."
Make the time for self-care by asking for help from family and friends before you desperately need it. Say yes when help is offered. There are many community and federal resources, such as the National Family Caregiver Support Program, which help caregivers by providing free chore services, time off and counseling.
Help yourself by learning more about your loved one's condition and ways to make your job easier. This may be as practical as having a physical therapist demonstrate how to lift your loved one without stressing your back. Or it may be learning new behaviors that at first seem counterintuitive.
"For example, we often spend a lot of time trying to make dementia patients see the truth - I'm your daughter, not your wife - rather than just going with where they're at," Schempp says. "But constantly correcting them just makes them feel put down, angry and anxious, and the reality is that they won't be able to remember later anyway because they have dementia."
More information, as well as support networks and discussion forums specifically for caregivers, can be found online at Caregiver.org, Cancer.org, StandByHer.org and LotsaHelpingHands.com.