Article by Jordan Rosenfeld
For five years, Julia Tracey and her husband, Patrick, tried every imaginable solution to address his chronic, unremitting back pain—from injected steroids, to an epidural, pain meds, and eventually surgery. But in 2014, after a new spinal stimulator failed to alleviate his pain, the formerly active couple had to accept that Patrick was essentially disabled, and that Julia, a California-based editor, would now be his caregiver.
Suddenly, tasks that she had once counted on Patrick to do such as driving, cooking and paying bills, fell to her—along with laundry, taking care of the house, cooking meals, washing dishes, and tending to the needs of their collective five children.
This led to a level of exhaustion that made normal life feel impossible. “I felt like the wheels came off for me. I had no energy to do anything but throw myself into a chair,” Julia Tracey said.
Situations like Tracey’s are not uncommon in caregiving. According to The Family Caregiver Alliance (FCA), an educational non-profit whose mission is to improve the quality of life for family caregivers, prolonged caregiving, particularly of the chronically ill, negatively impacts mental and physical health of the caregiver. Between 40 and 70 percent of caregivers report depression, and between 11 and 23 percent report that caregiving has negatively impacted their physical health as well.
But physicians who know the risks are in a unique position to offer support and resources to their patients’ caregivers. Even simple measures such as addressing the question of caregiving directly can help, according to Ranak Trivedi, PhD, a clinical health psychologist and assistant professor of psychiatry and behavioral medicine at Stanford University. Dr. Trivedi is interested in identifying barriers and facilitators of chronic illness self-management, and developing family centered self-management programs that address the needs of both patients and their family members.
“A big challenge is that people don’t see themselves as caregivers,” she said. “Just knowing that if you’re providing care for someone who is ill, then you are a caregiver is itself a great place to start.”
Caregivers are prone to “caregiver burnout,” Trivedi explained, which can result in disturbing feelings about their loved one that can be difficult to talk about. “You don’t want to spend as much time doing the caregiving, or even feel resentful toward the [patient]. You might experience symptoms common to stress: disturbance in sleep patterns; not taking enjoyment out of things that used to give you pleasure; anxiety, or worry.”
Even more serious, they can be prone to a form of PTSD resulting from stressful events related to caregiving. “Say you’re taking care of someone with COPD, cancer, or heart failure—you may be worried about when the next exacerbation or bad result will come,” Trivedi explained.
Abigale Johnson, LCSW, a psychotherapist in New York, recommends that caregivers who are experiencing burnout or stress make a list of things they do that qualify as coping skills to get them through challenges. “That might be exercising, listening to music, watching TV, talking to a friend, or going for a walk,” she said.
Also, speaking to a professional mental health care provider can be very important for the caregiver, Johnson said.
Another common form of caregiving is caring for an aging relative, often a parent. Megan Friberg, a California writer, spent the last six years before her father passed away driving several hours to care for him after her mother passed away.
For Friberg, who describes a loving and close relationship with her parents and considered caring for her father “an honor,” nonetheless dedicated so much time to his welfare that it took a toll on hers. She said she didn’t sleep or eat well during those years and gained more than fifteen pounds, mostly from trying to coax her father to eat. She turned down work in order to be there for him, and neglected her own family. She would come home so exhausted after time spent with him that she needed a few days to recover.
Self-care is also key, Johnson urged. “As a social worker we say if you don’t take care of yourselves, how can you treat your patients,” she said. “It’s the same idea with caregivers. If you’re not taking care of yourself, you’re not going to provide adequate care for the patient, which could lead to mistakes.”
Self-care can be as simple as taking a moment to yourself or as big as joining a caregiver support group, Johnson said. She has seen that sometimes there is stigma or pride attached to being a caregiver, be it family or cultural expectation or other.
“Caregivers shouldn’t feel embarrassed about feeling burned out or stretched thin,” she said. “I think a lot of caregivers just don’t tell anyone that they’re struggling and that’s hard.”
Trivedi said that people often confuse self-care as being a day at the spa. “Really it’s just making sure your needs don’t get subsumed by the patient’s needs and it could be woven into the priorities of the day.”
Julia’s husband Patrick did achieve some relief recently with a new surgery, but he is not cured. While he can take short walks with Julia and ride in a car, there are many activities still out of reach for him and many caregiving duties still fall to her. For Friberg, though she is relieved to not have to spread herself so thin after her father’s passing, the emotional burden didn’t end with his death.
“Sometimes I feel guilty I have the freedom to do more now,” she said.
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