Even if you’ve avoided major illnesses or injuries, you’ve probably comforted a friend in pain. But for some, caregiving is a way of life. According to a study conducted by the National Alliance for Caregiving in collaboration with AARP1, “More than 65 million people, 29 percent of the U.S. population, provide care for a chronically ill, disabled or aged family member or friend during any given year and spend an average of 20 hours per week providing care for their loved one.” While the age and other vital statistics of caregivers vary, 66 percent of American caregivers are women.
BRIDGING THE COMMUNICATION GAP
When you are the one in pain, you usually know what you need. But when you’re the caregiver, you’re not always sure. Effective communication is critical to a successful partnership between caregivers and those in pain.
Taylor Johnson Victor, who has lived with the pain of chronic disseminated Lyme disease for over six years, explains, “Loved ones seem to want to do something practical for me like cleaning my house, when sometimes what I need most is just for them to watch a movie, play a board game or simply sit with me in my pain and not ask me how I’m feeling.”
According to the American Pain Foundation, “Describing pain to others … whether they are family members, friends, colleagues or even health care providers — is among the biggest (and most frustrating) challenges reported by people living with pain.” Victor agrees. “I appreciate that friends and family members ask about me, but sometimes they ask the wrong questions,” she says. “I want them to ask, what would you feel comfortable doing today? Or, what sounds like a great plan for today?” What Victor hears most often, however, is the exhausting refrain, “How much pain are you in today?” Like so many people in pain, she grows tired of constantly trying to explain her pain level to others. A
BETTER WAY TO
The American Pain Foundation offers a comprehensive list of suggestions for helping others discuss their pain in a non-threatening way. Instead of asking, “On a scale of one to ten, where is your pain level?” try asking them to compare last week’s pain with this week’s. Or consider these options: ask about what triggers their pain and how their sleep cycle has been affected, encourage them to paint a descriptive picture of how they’re feeling or have them describe what a good day looks like compared to a difficult one. Jeff Huber, president and chief operating officer of Home Instead Senior Care, offers this method: “The best way to learn about the pain a person is feeling is to ask open-ended questions. You might want to ask a question like, ‘Tell me about the pain you are feeling now.’ Allowing the person to describe their pain in a more detailed way will help you understand their condition and enable you to assist them better.” Another suggestion is to consider discussing and doing other things. Victor shares that over time her family replaced the question “How do you feel today?” with suggestions to do something enjoyable, like taking a ride, going to an art museum or attending a theatrical or musical event. Victor says this helped get her mind off of her relentless pain. WHAT TO DO In addition to effective communication, there are several important steps to becoming an effective caregiver. LEARN ABOUT THEIR CONDITION One basic principle for providing care to those in chronic pain is to study and research their condition. By learning to identify the symptoms, side effects and treatments, you will be able to serve your loved one more effectively. Many websites offer reliable health information. When possible, accompany the patient to medical appointments so you can stay current on changes and suggestions from health care providers. Huber also suggests turning to nearby organizations for information and resources. “Local associations are terrific resources and can offer advice for specific conditions,” he says. “For example, organizations such as the Arthritis Foundation offer disease-specific information, and the National Family Caregivers Association lists helpful resources in many communities. You can also look into local support groups.” Caregivers can also encourage loved ones to begin a wellness journal. Recording health information (medications, appointments, test results, etc.) and even writing about their feelings is valuable for the individual and for caregivers. REFOCUS THOUGHTS According to Christopher Foetisch, MD, an orthopedic surgeon in Toledo, Ohio, a caregiver’s primary responsibility (apart from meeting the pain sufferer’s physical needs) is to help the person avoid becoming obsessed with his or her pain. Dr. Foetisch encourages patients to put their efforts into living their lives as normally as possible despite the pain. “Many people have multiple, severe problems that cause