Secret Shame

CURE, Winter 2011, Volume 10, Issue 4

Caregiver stress can sometimes lead to substance abuse.

For Tim M., the pills were a means of escape, a way of coping with the stress and anxiety of caring for his wife, Michelle, who had been diagnosed with breast cancer two years earlier. She underwent a lumpectomy, and things were looking pretty good; but then the cancer returned, spreading to her bones and then to her liver. A bilateral mastectomy followed, then chemotherapy and strong drugs to relieve her pain.

“There is a fatigue that sets in,” observes Tim, an information technology specialist in Los Angeles. “As a caregiver, husband and companion, you’re sort of waiting for the other shoe to drop. Caregiving can be a long, drawn-out process.”

Tim can’t explain why he took that first oxycodone, except that he was having difficulty coming to terms with Michelle’s illness and he thought the pill would help. “Opiates can be a wonderful emotional shield,” he notes. “They make you feel very capable and able to cope.” Pretty soon, he was hooked.

Two months passed before Michelle realized that Tim was routinely dipping into her pain medications. By then, he was starting to experience the consequences of his addiction. He lost his job, went into rehab, then quickly relapsed. He attempted suicide, downing a fistful of sleeping pills, but was found by his 7-year-old son and rushed to a hospital. He was placed in a psychiatric facility, which brought agents from the county’s child welfare services to the door.

Tim is now working through his addiction with the help of Narcotics Anonymous and must submit to regular drug tests. But the possibility of losing his children, both of whom are now in therapy, looms large.

“Everyone wants a defined trigger: ‘What was the thing that made you turn to this?’ But it doesn’t work that way,” Tim says. “It’s something that seemed like a good idea once, and it worked a little bit, but pretty soon I had a habit.”

Substance abuse among family caregivers is relatively uncommon, experts report, but when it does occur, the stress of caregiving is almost always a root cause.

“In the cancer setting, we find that healthcare professionals seldom worry about the caregiver,” says Barbara Given, PhD, RN, associate dean for research and the doctoral program at Michigan State University in East Lansing. “Often, caregivers aren’t incorporated into discussions about the patient’s care plan because of HIPAA regulations.”

There is no question that stress and the health issues that come with it, including depression and anxiety, are common among family caregivers. According to a report on caregiver stress by the Institute on Aging and the National Center on Elder Abuse, the rate of depression for caregivers of non-dementia patients is 35.2 percent—twice that of the general population.

The stressors that affect caregivers are many, says Laurel Northouse, PhD, RN, a nursing professor at the University of Michigan School of Nursing in Ann Arbor.

“The emotional area is where we have the most evidence that it’s really difficult for caregivers,” Northouse notes. “Their loved ones have cancer, they feel helpless, they don’t know what to do. Those kinds of feelings are uncomfortable for people to have, and they want to somehow learn how to deal with them, so they may turn to less healthy ways of coping.”

Social stress, such as strains in relationships, isolation and communication problems, can add to a caregiver’s burden, Northouse says. Similarly burdensome is developmental stress, which includes detachment from peers and a general “missing out on life.”

“I think that’s more common in younger patients and their caregivers,” Northouse says. “They often feel out of synch with people in their own age group. They may fantasize about doing the things their peers are doing, but their loved one’s cancer kind of puts that on hold, and so they may feel cheated.”

The physical stress of caregiving can also exact a heavy toll. The most common effects are fatigue and exhaustion from a lack of sleep, which is often exacerbated by a pervasive sense of anxiety. The onset of chronic illness may also occur. “In many cases, caregivers forget to take care of themselves, and as a result, they suffer from diseases that would have been caught earlier if they had kept up their own health care,” says Marcia Grant, RN, DNSc, director and professor of nursing research and education at City of Hope in Duarte, Calif.

Last, there’s the financial stress of caregiving, which can be devastating if the patient’s treatment is costly and/or long-term. “A big consideration among many caregivers now is taking time off from work because they don’t want to lose their jobs,” Northouse says. “So they go to work even when they think they should be home providing care. Or they may quit their job to provide care, then worry about whether they’ll get that job back.”

These stressors can easily put caregivers at risk of turning to alcohol or drugs to self-medicate, as Tim did. Alcohol is the most commonly abused substance because it is easily obtainable, but illicit drugs may also be used to deal with depression and anxiety. A recent study by Kathleen M. Rospenda, PhD, and colleagues, reported in the Journal of Addictive Diseases, concluded, “Caregivers who experience social and emotional burden related to caregiving are at risk for problematic alcohol use and warrant attention from health and mental health service professionals.”

Indeed, the negative side of caregiving may be a predictor for alcohol or substance abuse, especially if the caregiver already has an addictive personality. “Caregiving is a stressful situation, and if drugs or alcohol were how the person coped with [problems] in the past, certainly that could come to bear now,” Grant says.

Luckily, there is a lot that family caregivers can do to improve their situation and reduce their risk of succumbing to substance abuse. Foremost, experts agree, is that caregivers must accept help and set realistic goals for themselves.

“There are times when caregivers should ask for more help than they are willing to admit they need,” Northouse says. “Caregivers need to recognize that it’s important to accept that help right now. It doesn’t mean they will always need help—as the patient starts to feel better, some of those demands may be less.”

Caregivers may be reluctant to ask for assistance because they don’t want to burden family and friends. But those groups usually are eager to help if the caregiver gives them specific directions. “Caregivers are often very good at making it look like they don’t need help because they want people to focus on the needs of the patient, so their own needs are low on the list,” Northouse says.

Caregivers also must take care of their own physical needs, notes Frances Marcus Lewis, PhD, RN, who teaches at the University of Washington, the University of Pennsylvania and the Fred Hutchinson Cancer Research Center. This means eating properly, exercising regularly, engaging in social activities when able and, perhaps most important, finding time for yourself, even if it’s just a walk around the block. “Take 10 or 15 minutes a day that are just for you,” Lewis advises. “It doesn’t matter what you do, but take that time. Don’t think about caregiving—it must be a mind escape.”

Some caregivers may need professional intervention, such as counseling, to help them address their reliance on alcohol or drugs. Signs of dependency include increasing tolerance, taking a substance in larger amounts or for a longer period than intended and continuing to use even after recognizing the problem.

If you’re unsure where to turn, the patient’s medical team may be able to offer a referral, Grant says. “Don’t hesitate to let them know you need help,” she adds. “They should have access to resources in your area.”

In the majority of cases, caregiving is provided with love—but it can be an arduous responsibility. Substance abuse may seem like an easy answer, but it’s a fool’s game, Tim concludes. “The best advice I can give is don’t try to go it alone,” he says of caregiving. “Make sure there is a support system in place, so you don’t feel the need for chemical fortification.”

There is a fatigue that sets in. As a caregiver, husband and companion, you’re sort of waiting for the other shoe to drop. Caregiving can be a long, drawn-out process.

There are times when caregivers should ask for more help than they are willing to admit they need.