“There’s a lot of research out there that points to an increased state of ill health among family caregivers,” says Schulbaum. Indeed, a 2010 study conducted by the National Alliance for Caregiving, the University of Pennsylvania Institute on Aging and the MetLife Mature Market Institute found that caregivers are more likely to suffer health challenges such as depression, hypertension and heart disease.
A caregiver’s work life and finances may also suffer as a result of taking days off to care for family members. “Family caregivers are missing more work, they’re coming in late, they’re leaving during the day and they’re becoming less wealthy,” says Schulbaum.
One thing caregivers can do to avoid problems at work is to talk to their employers about their caregiving responsibilities, says Nicole Cutts, Ph.D., a clinical psychologist and success coach based in Washington, D.C. “Balancing work and caregiving can be especially challenging, so you need to educate yourself and perhaps your employer about this issue,” she says.
For those who are forced to miss work because of caregiving responsibilities, there are some legal protections in place. The Family and Medical Leave Act of 1993 provides employees with up to 12 weeks of unpaid leave per year to care for an immediate family member who is seriously ill.
Organization Is Key
Caregivers for someone with HIV/AIDS can be faced with a broad range of responsibilities, from picking up a loved one’s prescriptions to accompanying that person to the doctor. If someone is in the advanced stages of AIDS, his or her needs may be even greater, with a caregiver having to help out with day-to-day tasks such as cooking and bathing. Janet Taylor, M.D., a psychiatrist based in New York who has written about the challenges faced by caregivers of those with HIV/AIDS, suggests that tasks be written down and prioritized so that the most important ones are more likely to get done.
Amid all the obligations that must be met, it’s important to schedule time for yourself and your own emotional needs, or else you face the risk of becoming overwhelmed, Dr. Cutts points out. “Caregivers might feel typical symptoms of depression or fatigue,” she says. “You could be irritable, edgy, sad, lonely, have trouble sleeping, notice a change in appetite, experience bodily aches and pains, or suffer frequent illnesses.”
A self-assessment (pdf) developed by the American Medical Association can help you determine your own state of well-being, but here are some tips to help ensure that your needs are met:
Seek help in advance. One mistake that caregivers make is waiting until they’re overwhelmed to ask for a hand, Dr. Cutts says. Instead, “schedule some help on a regular basis so you know that there is respite coming,” she says. That way you have something to look forward to on a regular basis.
Create your own support system. Your loved one isn’t the only one who needs support. As a caregiver, you are likely expending an extraordinary amount of physical and emotional resources. Check with local HIV/AIDS organizations to see if they offer any support groups for caregivers. They also may be able to steer you toward programs that provide resources such as meals. In your search for support, don’t overlook informal networks such as relatives or close friends whom you can be honest with about what you’re going through. “A lot of times, people feel guilty because they feel like they’re complaining,” says Dr. Cutts. “But you really need to share with someone how you’re feeling.”
Put nutrition and exercise first. As a caregiver, you’re likely concerned that your loved one gets the nutrition that he or she needs to better manage HIV/AIDS. However, it’s equally important for caregivers to eat right and exercise, Dr. Cutts says. Not only will those habits ward off illnesses, but “a proper diet and exercise are important for managing stress,” she says.
Nurture your spiritual connection. When someone is sick, it’s not uncommon to feel a sense of helplessness about the situation. However, the act of surrendering to a higher power is a central component of most religious and spiritual traditions. If you’re spiritual, look to whatever source you believe to be greater than yourself for comfort during difficult times.
Like the airline passenger who is told to put on his oxygen mask before helping the passenger beside him, you must put your needs first. “You cannot give your best to your loved one or to the other responsibilities in your life if you don’t take care of yourself,” Dr. Cutts says.