Dispensing medications according to a rigorous timetable. Making critical medical decisions. Attending to the continuous physical and emotional needs of an ailing loved one. Even the most dedicated, dependable family caregiver will eventually feel overstressed, overloaded and overwhelmed.
There are more than 65 million caregivers in the United States who spend an average of 20 hours a week caring for a friend or loved one. Nearly one-quarter of those who have been in a caregiving role for five or more years report that their health is fair or poor. More bad news: Family caregivers who provide 36 or more hours of care weekly are more likely than noncaregivers to experience symptoms of depression or anxiety.
WHEN YOU'RE WEARY, FEELING SMALL
Experts say it's not uncommon for caregivers to be too proud—or, paradoxically, too ashamed—to ask for help with routine activities, or to believe that they've somehow failed in their caregiving roles if they need to turn to outside resources for help. Those attitudes can set the stage for caregiver burnout—zapped energy, an inability to eat or sleep and feelings of despair.
Caregivers can avoid burnout by recognizing the warning signs and taking preventive steps to help maintain their balance and well being. The signs of burnout typically involve personality or behavioral changes, explains Donna Schempp, LCSW, interim program director at Family Caregiver Alliance in San Francisco. These include:
▪ Changes in sleep patterns: Either not being able to get out of bed or not being able to sleep at all
▪ Stress eating: Either loading up on junk food or comfort food to relieve stress, or losing their appetites
▪ Mood slips: Easily-triggered emotional swings, or frequently feeling angry or frustrated
▪ Depression: Feeling helpless, hopeless or unmotivated
▪ Social withdrawal: Becoming isolated and no longer connected to the outside world
▪ Resentment toward the person they're caring for: Feeling stuck and running out of patience.
Even when experiencing one or more of these signs of burnout, caregivers typically don't seek help because they tend to minimize the importance and demands of their role (“I'm just helping Mom out”), says Schempp. But by thinking of themselves as “caregivers” rather than “helpers” they may develop a greater appreciation and understanding of their role and be more inclined to tap local resources for help, she adds.
IF YOU NEED A FRIEND
When a relative becomes ill, some family members jump in with both feet, not realizing what they've signed up for, observes psychologist Barry J. Jacobs, Psy.D., author of The Emotional Survival Guide for Caregivers (Guilford Press, 2006).
Jacobs says it's important for caregivers to develop a long-range view of the type of care their loved one requires. He advises caregivers to think realistically and act strategically so they can draw assistance from appropriate sources, or what he refers to as “three circles of support”: family and friends, community and neighbors, and healthcare and social service professionals.
But Jacobs acknowledges, “Many caregivers are not being served because they're not aware of the resources; are aware of the resources but don't think they are applicable to their situation; or they won't accept them [because of the erroneous] belief that if they accept help [it's] somehow tantamount to shirking their duties.”
Jacobs compares caregiving to running a marathon. If athletes want to improve their chances of winning, they train, learn the lay of the land—where the uphills and downhills are—and don't run past the water station at mile five, saying, “No thank you, I'm not thirsty.”
“Unless they can step back and reflect—‘This is now really cutting into my work life, cutting into my relationships with other family members and it's affecting my health’—people just kind of get stuck and feel helpless changing it,” he says. “Getting that long view, availing themselves of whatever help is out there, is a way of empowering caregivers to get from start to finish and do the very best job they can.”
WHEN TIMES GET ROUGH
Schempp suggests a variety of strategies for caregivers to use to avoid burnout. For instance, learning about the illness they're helping a loved one manage. Seeking information from healthcare providers or associations that focus on that condition can prepare them for what to expect over time and helps them make better healthcare choices and reduce their stress. Here are some other things caregivers can do to maintain physical and emotional equilibrium:
▪ Take small breaks throughout the day: Read a magazine article, set aside 20 minutes for a favorite hobby, or take a bubble bath.
▪ Stay connected to the outside world: Dine with friends; join a caregiver support group or chat on a social network site for caregivers, such as www.tyze.com, www.SharetheCare.org, or www.CaringBridge.org.
▪ Keep a sense of humor: Watch sitcoms on TV, rent funny movies, or talk with that one friend who always makes you laugh.
▪ Exercise: Your day is filled with hours of purposeful activity, but a walk around the block to admire your neighbor's flowers or doing a stretching routine with a yoga DVD can be relaxing.
▪ Go outside yourself: Whatever your faith, attend services and talk with a clergy member to help put your role into perspective.
▪ Recognize your limits: Draw a bright red circle in your mind around what you can do. Don't feel embarrassed or guilty to ask for help with anything that falls outside that circle.
▪ Pet a pet: Animals can be an excellent source of comfort and support, so buy a pet if you can handle the additional responsibility or play with the neighbor's dog or cat.
▪ Don't bottle up your emotions: Caregiving can provoke many emotions, from anger to grief. Unburden yourself by sharing your true feelings with friends, family, clergy or other caregivers. You will get perceptive counsel and practical advice—especially from other caregivers “in the trenches” like you.
WHEN FRIENDS JUST CAN'T BE FOUND
Caregiving is not a one-person job. It requires a community effort, a fact that all caregivers need to accept, and even embrace. For this reason, the National Family Caregivers Alliance (NFCA) has an online tool to enable a caregiver to establish a volunteer care team of friends, family members and neighbors, and to coordinate their activities on an online calendar (visit www.nfca.lotsahelpinghands.com).
Volunteers can view and fill the calendar with various errands, chores and projects — not all of them involving caregiving. For instance, to free up some time for a caregiver to take a relaxing long soak in the tub, a neighbor may weed her garden, a family member may clean out the roof gutters, or a friend may prepare and deliver dinner.
“Regardless of the situation, [volunteer care teams] can be set up,” says Suzanne Mintz, president and chief executive officer of NFCA. “This is the most significant thing people can do to prevent and deal with burnout.”
If you need more help—or more specialized help—than your immediate circle of friends, family and neighbors can provide, these resources can help.
Great tools and information for helping caregivers take care of their loved ones and themselves.
Blogs for caregivers of all ages, product reviews, webinars, weekly newsletter and online garage sales.
National Caregivers Library
Access to hundreds of useful articles, forms and checklists that address the key needs of caregivers and their loved ones.
Family Caregiving 101
Basic tools and information caregivers need to preserve their own physical and mental health.
National Family Caregivers Association
Free membership offered to caregivers, who can then receive a newsletter, resource referrals and other benefits.
The Stroke Network
Online stroke support, a caregivers handbook and information resources.
Well Spouse Association
Services include a national network of support groups, newsletters, mentor program, respite weekends and round robin letter-writing groups that enable caregivers without computer access to write and share letters of support.
© 2011 American Heart Association, Inc.