Call it the long shadow of caregiving: The sick person may stabilize, but the caregiver's own health worsens. Or both decline and end up needing care. Sometimes the care recipient even outlives the caregiver.
Most people don't enter caregiving thinking that they're putting their own health in harm's way. But those who provide care to a frail or needy loved one tend to live with high chronic stress and skimp on self care -- factors that raise the risk for numerous illnesses. And this, in turn, undermines the ability to continue providing good-quality care.
"Caregivers tend to be a special personality type: big-hearted, sensitive, responsible, well-intentioned -- people who are motivated by and take a deep satisfaction in doing right by their loved one," says geriatric psychiatrist Ken Robbins of the University of Wisconsin-Madison. "But that's often to the exclusion of taking care of themselves." Adding to health risks: Most caregivers are at midlife or beyond themselves, ages when their own chronic illnesses and weaknesses tend to surface.
If you're used to putting others first, how can you shift to not putting your own self last?
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First, make the connection.
Not surprisingly, caregivers report higher levels of psychological stress compared to non-caregivers, according to a 2011 report by the UCLA Center for Health Policy Research. Caregivers also report stress at higher levels than other Americans, according to Stress in America, an annual report of the American Psychological Association, which names caregivers as one of the three most-stressed groups (along with the obese and the depressed -- and many caregivers "win" that triple crown).
Caregivers are more likely than the general public to have a chronic illness (82 percent versus 61 percent) and to rate their own health as "fair" or "poor" (34 percent versus 20 percent). Other research has shown that the longer a caregiver is in the role, the more likely he or she is to report a decline in health.
"The mind and body are connected. When you experience stress, there are a whole range of physiological changes -- every organ in the body is affected," says Vicki Rackner, a clinical faculty member of the University of Washington School of Medicine and the author of Caregiving Without Regrets. "Sustained stress isn't good for the body, which explains why caregivers frequently die before their care recipient dies."
Caregivers in poor health can't provide optimal care for someone else -- and they can't even provide decent care for very long. Both caregiver stress levels and caregiver health play a major role in the decision to shift care to a nursing home or other long-term care facility, research shows.
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"Making the connection between your well-being and your ability to continue providing care is often the 'ah-ha' realization for caregivers whose own health is suffering," Robbins says. "Only then do many make their own healthcare a priority."
The physical toll of caregiving
Among the physical health risks caregivers face:
Heart risk factors. All chronic stress is associated with high blood pressure, diabetes, high cholesterol, and heart disease, but the stress of caregiving, in particular, has been linked to these disorders. A University of Alabama-Birmingham study found that men caring for wives had at least a 24-percent higher stroke risk.
Depression. Caregivers have a higher rate of depression than non-caregiving peers. As many as 40 percent to 70 percent of caregivers report depressive symptoms in surveys.
Compromised immune system. Stress lowers immunity, which is part of the reason caregivers have nearly double the risk of chronic illnesses compared to non-caregvers. Adding to the problem: Studies have shown that spousal caregivers of Alzheimer's patients in high-stress situations are less likely to get flu shots or take their medications when ill and are more likely to skip doctor appointments and not refill prescriptions.
Weight gain -- and related health problems. Weight gain is a good indicator of caregiver stress, according to a 1997 study at the University of Maryland School of Medicine; as stress rises, so do pounds. Stress puts the body in "scarcity mode," Rackner says, causing it to hang onto fat as a protective measure of energy reserves in case of emergency. Emotional eating, poor sleep, and lack of time for exercise compound the problem -- raising the risk of obesity-related illnesses, including diabetes and dementia.
Sleep deprivation. Caregivers' own sleep problems often stem from a loved one's sleep issues, such as someone with dementia who has day and night mixed up. Caregivers may also lose sleep to worry or underlying health issues of their own, such as sleep apnea, restless legs, or a bladder problem. Insomnia raises the risk of depression, high blood pressure, diabetes, and a host of other diseases.
Strains of heavy lifting. Many tasks of caregiving, including bathing, dressing, or helping a loved one in and out of cars and chairs, can be physically demanding. Back problems and other strain can result if the caregiver is petite or has his or her own health issues, especially if the care receiver is large or obese. Women and caregivers over age 65 rate the physical strain of caregiving higher than other groups, according to the National Alliance for Caregiving 2009 report, Caregiving in the U.S.
Unhealthy ways of off-loading stress. Caregivers are twice as likely to report smoking to manage their stress (20 percent versus 10 percent), according to the Stress in America report. And they're 25 percent more likely to binge drink than non-caregiver peers, according to the 2009 California Health Interview Survey. Emotional eating can add unwanted pounds.
What can help?
Those who work with caregivers recommend the following self-protective measures:
Take breaks, take breaks, take breaks. No caregiver can go it alone very long. Ask your local Area Agency on Aging about community adult day programs (some specialize in dementia care), or hire an elder companion or personal care assistant for a few hours a week to stay with your loved one while you run errands or exercise. You might need to get creative: Some caregivers have set up co-op programs that work like babysitting co-ops -- you watch my dad for a few hours, and I'll watch yours.
Depend on others. Family caregivers often make the mistake of trying to go it alone, thinking, "That's what families do," Rackner says. Look into local services that can spare your time and energy, such as those that provide meals, adult day care, transportation, and more. Many are free or low-cost.
Bring your employer into the loop. Caregivers are often reluctant to bring up caregiving distractions at work. But you may be eligible for caregiving-related programs, including leave time, flex time, free needs-assessments by geriatric care managers, and more. Not all companies offer such programs, says Gail Hunt, president of the National Caregiving Alliance in Bethesda, Maryland. But of the 18 percent of the workforce that's eligible for such programs, only 2 percent are using them, she says.
Adopt a problem-solving approach. Ever hear the old saying, "Don't stew! Do!" Male caregivers report lower stress levels overall than women, says I-Fen Lin, a sociologist at Bowling Green State University, who has researched gender and relationship differences among caregivers. In part this is because men tend to approach caregiving by forecasting and then solving problems. "They block their feelings and focus on task, whereas women tend to focus on relationships and expressing their feelings," she says.
Try to break down the tasks of caregiving into specific puzzles to be solved: If bathing is stressful, try to figure out exactly why and what might be done about it. Do you fully understand why people with memory problems say and do the things they do? Are you intimidated by a piece of medical equipment? Defining concrete problems and identifying possible solutions puts you closer to getting help with them and helps you avoid feeling overwhelmed by the big picture.
Address everyone's sleep deprivation. If you can't sleep because someone with dementia or other health issues is disrupting caregiver sleep, talk to the person's doctor, Robbins recommends. Solutions range from better sleep hygiene (dark, cool room, no TV or radio) to behavior modification to medications that can address night waking due to bladder problems or the agitation of dementia sundowning.
Listen when your body talks. "Pain in your body is like a warning light in your car," Rackner says. "You ignore the 'E' on the gas gauge at your own peril. Your body is no different." Chances are that ignoring a new symptom isn't going to help it go away; it will only start shouting at you by getting worse.
Connect with your loved one's doctor. "Everyone is better served -- including the caregiver -- if the caregiver is included as part of the team," Rackner says. Research shows that when doctors find ways to address the unique needs of individual caregivers, the stress load is reduced -- admittedly a tall order when physicians are short on time and have a primary relationship with the care receiver.
Schedule yourself in. Caregivers spend an inordinate amount of time with a loved ones' doctors but seldom see their own. Make your own appointments for regular exams, flu shots, dental visits, and the like at the same time you arrange a loved one's. Some practitioners allow simultaneous visits for pairs who share providers.
Find healthy emotional outlets. Caregivers need at least one safe place to vent. Maybe this is a friend who agrees to listen without judging, or a diary that's scribbled in and then burned. Peer support from others in similar situations is ideal. Most caregivers find it difficult to get out of the house for support groups in their limited free time, though that's one option. (Ask at local hospitals, senior centers, places of worship, or the Alzheimer's Association.) Online caregiver forums provide safe places to vent 24/7.
Find ways to exercise. Although many caregivers are daunted by the idea of finding time or opportunity -- and still others loathe the idea of spending precious free time working up a sweat -- doctors increasingly agree that if you do just one good thing for your overall health, it's moving your muscles and working your heart a bit every day.
Constantly refill what's depleted. "Stress is about scarcity, so you have to figure out what you don't have enough of," Rackner says. Ask yourself: What do I need more of? High-quality food that will make me feel better? Water? Sleep? Air? "A surprising number of people don't take deep breaths," she says.
Is easing your stress as simple as breathing? No -- but many small steps like it may add up to something as huge as saving your life.
Paula Spencer Scott wrote this article as part of a MetLife Foundation Journalists in Aging Fellowship, a project of New America Media and the Gerontological Society of America.