DON'T BURN OUT!
Caregiver stress can take its toll, physically and mentally. Here's how to keep the pressure low and your personal well-being high.
BY:MARY MEDLAND
Suzanne Mintz, co-founder and president of the National Family Caregivers Association (NFCA), likens the caregiver who is about to suffer burnout to a tea kettle. "When all the heat and steam build up inside and you hear the kettle whistling," she says, "it is like a scream for help."
Caregiving is demanding and difficult work—both physically and emotionally—and it can take a toll so great that many caregivers feel they simply cannot go on any longer, that they are utterly burned out. However, there are many avenues that enable you to take care of yourself while continuing to provide quality care for a loved one.
"The problem for many caregivers is that they are isolated," says Dorothy Threlkeld of Huntsville, Alabama, who took care of her husband for five years before he passed away. "We were very lucky in that I had a great support system with people from our church, people my husband had worked with at NASA, and friends and family. I know I was very fortunate, but in the middle of the night, when you are alone with someone who is totally disabled...people really do not understand caregiving unless they have been there."
"Caregiving is not a one-person job," Mintz states emphatically in concurrence with Threlkeld's point.
It is a point of view echoed over and over: No one can do this work without help. And, equally important to bear in mind is that asking for help is not a sign that you're an inadequate caregiver. If anything, accepting assistance is an indication of a well-adjusted individual. Of course, getting to that point is seldom easy.
Don't Be a Martyr, Get a Life
"If you don't take care of yourself, you will end up giving a piece of yourself away, and then more and more pieces of yourself," says Colette H. LaFosse, MSG, director of rehabilitation and recovery programs with the Colorado-based National Stroke Association. "You will eventually lose who you are. When your caregiving duties end, you will have to completely re-create who you once were."
LaFosse advises that caregivers take time out for themselves, whether it is 15 minutes for a cup of coffee or to chat on the phone with a friend at least once a day or as often as you can fit such breaks in. "Caregivers need to take time out—even if it is only a few tiny moments—to step back and relax," she says. "Caregiving is crucial to the recovery process of a stroke survivor, and it is important to take care of yourself both physically and emotionally."
But the temptation for caregivers to go it alone remains strong.
"At one point, when I was trying to do everything for my son, who has cerebral palsy, I wasn't reaching out to friends. What he saw was an artificial mother who was trying to be upbeat and always there for him," says Susan S.*, who lives in Chicago. "However, I was also developing a drinking problem and finally joined Alcoholics Anonymous.
"Once I stopped trying to do it all and decided to get myself a life," Susan adds, "I was able to take an hour or so every day for myself, whether that involved going to meet friends or taking in a movie."
Before she stepped back to evaluate her life, Susan was holding down a full-time job, taking care of her son's needs and doing advocacy work. She says that reclaiming her life made it possible for her son's life to be enriched. "People who would come in to take care of my son shared themselves with him as they would do with anyone else," says Susan. "You have to learn to trust that others will keep your child safe."
Know Your Resources, Accept Help
To assist family caregivers, the National Stroke Association (NSA) has developed StrokeLinks (800-787-6537), a pilot program to identify their needs and help to coordinate assistance from others. "Often people are willing to help, but they don't understand what the family needs, whether it is help mowing the grass or picking up groceries," says the NSA's LaFosse. "Those taking care of people who have had strokes are not only taking care of an individual's physical needs, but often are coping with problems with language and mood swings."
Caregivers need to educate themselves about the resources that are available for their loved ones, as well as the support groups and networks that are helpful for those providing care. "There were so many times I thought I just could not continue to take care of my husband," says Threlkeld. However, she managed to find a stroke support group online. "I could post questions and discuss problems I was having and, in turn, receive support from other women."
In addition to accepting help, it is important to keep a balance in your life. "It is highly recommended that caregivers try to limit their hours of caregiving to eight hours a day," says Doreen Horan, LCPC, manager/clinician of the Center for Grief and Loss at Stella Maris, a medical facility in Baltimore, Maryland. "This is realistic if we ask for help."
Know Your Body, Sidestep Trouble
Caregivers who do not seek help run the risk of landing in the hospital themselves. According to the NFCA's Winter 2006 newsletter, an Arizona caregiver reported: "Shortly after my husband died, I was rushed to the hospital, practically at death's door myself. It turns out that my body was almost completely depleted of potassium. When the doctors asked why I didn't realize how tired I was getting, I told them that I did realize it. But since I was working and taking care of my husband, I assumed that the tiredness just came with the territory."
Furthermore, in a study of female caregivers between the ages of 20 and 50, Elissa Epel, PhD, assistant professor of psychology at the University of California at San Francisco, found that these women who were under extreme stress were increasing the aging process in themselves, both physically and mentally.
"It is critical," Horan notes, "for caregivers to take time for exercise, to eat properly and to get enough sleep." Not only that, but the demands on caregivers who are not taking proper care of themselves has led more than one to become depressed or to unwisely and unproductively turn to alcohol or drugs. And, as a caregiver, you must pay attention to your own physical responses. Nausea, chest pain and tension in one's shoulders often are warning signs that your situation needs to be reevaluated.
"Usually, caregivers are strong enough to survive. But when they really become washed out and fatigued, they are weakening their immune system and they will get sick," says Michael Imring, MD, a board-certified internist at Mercy Medical Center in Baltimore, who treats many elderly patients. "Plus, those caregivers who have given up jobs or have to take a lot of time off from their work are stressing their own health." Dr. Imring urges caregivers to get assistance and take time for themselves. "You want to be sure your loved one is comfortable," he says, "but you cannot let your caregiving responsibilities ruin your life."
Find Peace of Mind, Update Documents
In addition to physical warnings, the NFCA's Mintz differentiates between burnout and depression. Depression, she says, "is almost a physical inner pain and an inability to think clearly." But, she adds, "burnout is all about the exhaustion one feels, the overwhelming nature of handling this situation and the feeling of ‘I just can't do this anymore.' When this occurs, you have to ask for help....This is critical, especially in a society with a healthcare system that is really not geared to helping caregivers and their families."
Indeed, in the case of 39-year-old Virginia Zuccari, few of her peers understand the pressure she is under. "My mother, who had me when she was 41, is in a nursing home," says Zuccari, a stay-at-home mom who has two children in school and one pre-schooler. "Most of my friends still have parents who are in the workforce, so they don't understand what I have to deal with."
She freely acknowledges that there are times when she feels at the end of her rope, when she feels "I just can't do this any longer, but I know I have to." Zuccari says that what has helped her is her strong belief in God and the support of her church in Sanborn, New York. "Without my faith, I'd be lost," she says. "Our pastor's sermons are usually very down to earth, with lessons that one can apply to whatever is happening in one's daily life. Plus, it is nice to be able to sit and just be quiet for an hour."
Making sure everything is in place and up-to-date legally and financially will go a long way to provide peace of mind. "You had better have your finances in order, as well as a will and power of attorney," says Threlkeld. Luckily for her and her husband, the couple had just taken out a long-term-care policy before he had his stroke. That policy made it possible for her to hire professional caregivers so she could continue teaching English as a Second Language at her church and do volunteer work at the local botanical garden. "The only drawback," she recalls, "was that there were always so many people in my house that I had to leave the home to get any privacy."
Finally, it bears repeating that caregivers must find ways to take care of their own minds, bodies, hearts and souls. "We need to allow ourselves to be an instrument for compassion and caring, but not the end-all," says Horan. "There is loss and death, but there also is birth and renewal. Even when there is trauma, there is the opportunity for the seeds of a new life."
*Name and city have been changed to protect anonymity.