Caring for Caregivers

If you’re one of 50 million Americans looking after an ailing or aging family member
or friend, you have taken on a selfless yet extremely demanding role. But your own
health could be at risk if you don't manage your stress and care for thyself as well.

By Joanne Gallo

September 2005

Barbara Peterson is like a lot of other 46-year-old American women: This working, married mother of two from Phoenix, Arizona struggles to balance career, marriage, family and her health…while also serving as a caregiver for her ailing 85-year-old father who lives with her and her family.

“I’m always tired,” Peterson says with a wry laugh. “I have two teenage girls, one’s 14 and one’s 16, and it’s real important for me to be available for them. But you get worn out, to the point where you just want to crawl into a hole.” In an effort to have more time and flexibility, she changed careers from working for a home builder, which required weekend work and set hours, to starting her own residential real estate sales business.

Still, all of her caregiving duties leave Peterson with little time to take care of herself. “Sometimes my dad requires IVs that we put in to hydrate him. When those are running, I have to set my alarm for 3:30 [a.m.] because you don’t want it to run out when you’re not there. I wanted to exercise, because I’m heavier than I’ve ever been. But something has to go, so it’s kind of like, ‘Well, I’ll get in shape later.’”

Peterson is the new picture of your average middle-aged woman, caught between raising children and caring for aging parents—with her own health and well-being sacrificed along the way. Members of this so-called “sandwich generation” are the largest growing segment of caregivers in the nation, accounting for 40% of the 22 million Americans caring for elderly parents, according to CNN.

But even if you’re looking after an aging relative without the added responsibility of children at home, the experience can be extremely stressful, requiring an enormous investment of time, energy and spirit. Though much of the time caregivers are adult children who bring ailing parents into their home to care for them, the term “caregiver” in the broadest sense encompasses anyone who provides assistance to an adult who is ill, disabled or in need of help—which accounts for 50 million Americans, according to the largest estimates. A caregiver may live by herself and bring a parent to doctor visits or physical therapy, she could be caring for a husband with Alzheimer’s disease or she could even be a neighbor who visits and helps out an aging friend.

If caregiving hasn’t touched your life up to this point, there’s more than a good chance it will in the future. (Former first lady Rosalynn Carter once wrote that there are only four kinds of people: caregivers, former caregivers, future caregivers and those who will need caregivers.) Surveys suggest that today’s baby boomers, those born between 1946 and 1965 during the post-war population “boom,” will likely spend more years caring for a parent than for their own offspring, rendering the notion of the child becoming the parent and the parent the child not such a cliché. The need for caregiving in the future is also expected to increase dramatically as the boomers themselves age, people continue to live longer and the incidence of Alzheimer’s disease increases. 

Helping Out & Stressing Out

Unfortunately, the downside of this noble, selfless act is the toll it takes on a person’s health.
Richard Shulz, PhD, an expert on caregiving and stress at the University of Pittsburgh and Home Instead Senior Care advisory board member, has been researching how caregiving affects individuals for about 30 years. “The most surprising finding has to be the extent to which it has a negative impact on the health of caregivers,” he reveals. “It goes all the way from things like increased depression and anxiety, to neglecting to take care of themselves, to increased prevalence of disease and finally to higher probability of dying. We did a study in JAMA [Journal of the American Medical Association], published in 1999, that looked at caregiving as a risk factor for mortality, and showed that—controlling for all other things, like your health status and age—the chances of dying were 63% greater if you were a stressed caregiver versus if you were not.”

That’s because caregivers who are under the gun tend to avoid going to the doctor and don’t slow down when they have a health condition, which can contribute to serious health  problems. The warning signs that stress is having a harmful impact include a vast array of physical symptoms like disturbed sleep, headaches, digestive problems, hair loss, fatigue, high blood pressure and sexual dysfunction, while emotional issues can include moodiness, memory problems, phobias and increased substance abuse.

That’s not to say that there isn’t a positive side to the experience of caregiving, especially when the condition of the person being looked after is not so grave. “Caregivers can feel like they’re making an important contribution,” Shulz points out. “In the early stages of helping someone, people get a lot more rewards out of it because the recipient is able to express their appreciation of what is being done for them.”

However, as time marches on, caregiving becomes a greater challenge and the resulting stress is potentially more dangerous. “It can last such a long period of time, especially if you’re looking at a situation where someone’s taking care of an individual with Alzheimer’s disease, which is extremely challenging because of   the nature of the disease, the disabilities and the problem behaviors it creates in the patient,” says Shulz. “Watching someone close to you suffer and not being able to do anything about it can be devastating. Then, the fact that you have to deal with this for years and years, with no hope of the situation ever improving and the ultimate outcome is that the person will die, makes it an extreme chronic stress situation.”

Care for Thyself

It’s natural for caregivers to have negative feelings—and to feel guilty about them—but simply ignoring them and trudging forward will only make things worse. Caregivers who act as martyrs without acknowledging their own needs will foster internal resentment, worsen their own health and become less capable caregivers.

It’s not surprising that caregivers are usually women—about three-quarters of all caregivers, in fact—and they are more likely to accept this as their duty and suffer in silence. “It is perceived to be a woman’s role,” notes Shulz. “But if you’re in a situation where you have high levels of stress, you have to be concerned with ways you can deal with it. In many situations, one family member, either a spouse or an adult daughter, is the primary caregiver and everyone else is relatively uninvolved. One way to deal with that is by getting other family members involved.” (Of course, there are many men who provide loving care to relatives and friends, especially ailing wives.) 

Shulz also suggests bringing in respite or home health services, if you can afford to. “It doesn’t help a whole lot to have somebody come over for an hour and help you out with something and then disappear. If you can have someone take over for a day or a couple of days or maybe even a week, that can be extremely beneficial and give you a chance to escape the stress for a prolonged period of time.” Older caregivers, such as a wife who cares for a husband, should consider having an adult child help negotiate health care services and the healthcare system, which can be very complicated and challenging. Also, seeking out support groups for specific diseases like Alzheimer’s, stroke and cancer, so that you have empathetic people to vent to about the challenges you’re facing, is also beneficial.

Small changes in your everyday life can have a big impact. If you can’t find the time to exercise, incorporate more walking into your daily routine by taking the stairs instead of the elevator, and parking your car at the far end of the lot. Or try meditation, which in as little as five minutes can help you focus and recharge when you’re feeling fatigued. Simply pick a quiet space, sit still and breathe deeply while you try to clear your mind of all thoughts. Treat yourself to something you think you don’t have the time for: a manicure, a nice dinner out or a movie, to reward yourself for your extra efforts.

One thing you should not do is succumb to the quick fix of “comfort food” or fast food for energy; you’ll only be headed for a crash later. Stick to a diet that includes plenty of fresh vegetables and fruits, whole grains and lean protein for well-sustained energy levels.

The bottom line is to be good to yourself, or you won’t be able to be good to anyone else. Barbara Peterson decided the way to cope with her caregiver stress was to hit the road. “We went and bought motorcycles, if you can believe it, and about two weekends every month we go for a ride,” she says with a hint of glee. Peterson’s college-age nephew, who also lives with her family, watches her dad while she’s away. “We have to take some time for ourselves, because if we don’t, we’re going to go crazy and we’re going to resent my father. The kids won’t get any time. We finally said we have to have a life.”

Other resources for caregivers:
Administration on Aging (AoA): www.aoa.gov/eldfam/eldfam.aspx, 800-677-1116
ElderCare Online: www.ec-online.net
Family Caregiver Alliance (FCA): www.caregiver.org, 800-445-8106
Home Instead Senior Care’s Guide to Caregiver Stress: www.caregiverstress.com
National Alzheimer’s Association: www.alz.org, 800-272-3900
National Family Caregivers Association (NFCA): www.nfcacares.org, 800-896-3650