Your Oxygen First
In discussing family caregiving, the numbers are big.
According to “Caregiving in the U.S.,” a survey by the National Alliance for Caregiving and AARP, nearly 34.2 million Americans provided unpaid care for an adult age 50 or older in the past year. Overall, they estimate that 16.6 percent of Americans, almost 40 million of us, are caring for an adult. An additional 3.7 million (1.6 percent) are caring for a chronically ill child.
Sixty percent of these caregivers are women. The average age is 49; however, 7 percent are 75 or older. About half (49 percent) are caring for a parent or parent-in-law. One in 10 provides care for a spouse. Those delivering more than 21 hours of care per week are almost four times as likely to be caring for a spouse/partner. On average, they have been in their role for four years, with a quarter having provided care for five years or more.
However, these numbers only tell part of the story. Barry J. Jacobs, Psy.D., a clinical psychologist and author of The Emotional Survival Guide for Caregivers, has been investigating caregiving for 25 years. He says that the research suggests there are two groups — those that are stressed by their responsibilities and those that enjoy being caregivers.
Depending on the care recipient’s age and condition, caring for another can be a demanding and stressful job. “Those caregivers who are highly stressed make up over a third of all caregivers,” Jacobs said. “Those people are prone to a whole series of health effects. They have high rates of depression and anxiety. They have a lot of neck and back pain. They have depleted immune systems because they’re stressed out, and they have their own chronic illnesses, such as diabetes and high blood pressure.” He adds that a lot of caregivers tend to focus on the care of their loved ones and neglect their own health, which could lead to early death or hospitalization from chronic illnesses that are not taken care of well.
“The number one message here is if someone is highly stressed by the work that they do as a caregiver, they are prone to both medical and psychological consequences.” Jacobs said. And those consequences are not good for the person receiving care either.
Flight Attendant's Lesson
Anyone who has flown commercially has heard the flight attendant's instruction, if the plane loses pressure and the oxygen masks drop, put on your own mask first before trying to help someone else. This is sage advice for family caregivers as well — if caregivers don’t take care of themselves first, eventually they won’t be able to care for their loved one.
Jacobs illustrates this with a story: A woman in her 70s was taking care of her husband who’d had a series of small strokes, when she was diagnosed with a heart valve problem. The cardiologist said she needed to have it replaced, but she put it off because “who will take care of my darling Bob?” Over the years, the problem got worse, until it was either have the surgery or die. She had the surgery but died of complications afterwards, leaving the care of Bob in the hands of her children, who weren’t related to him. “The thing that strikes me about this situation is that it was needless,” Jacobs said. “If she had taken care of herself years before, then she probably wouldn’t have had that bad outcome.”
Taking responsibility for another person, no matter how noble and compassionate your motivation, is full of stress. One reason for this is that caregivers have a tendency to become isolated over time, because they’re so wrapped up in caregiving. “Family caregivers tend to give up a lot of their social activities, besides which, unfortunately, friends and family members tend to shy away from them,” Jacobs said. “Research suggests that increasing social supports has the tendency to improve coping and decrease stress.” Just reading about caregiving helps because when people see their own circumstances written about, they feel validated. “Support matters tremendously,” Jacobs said.
The other thing that matters tremendously is for caregivers to feel that they have some control of their circumstances. “When people feel like they don’t have any means to change what’s going on with their loved ones or to make them better or to make a difference, they feel helpless and hopeless and become depressed,” Jacobs said. But when a caregiver learns skills and implements them, she or he feels like they can help their loved ones. “Just gaining a sense of mastery helps decrease stress. It actually can give caregivers a sense of satisfaction they wouldn’t get otherwise.”
Another attitude that reduces caregiver stress is to have a sense of purpose and meaning for the work that you are doing. “When caregivers tell me that they feel trapped or obligated, that they’re only doing what they’re doing because they have to, that doesn’t bode well for how they’re going to cope over time,” Jacobs said. “On the other hand, when caregivers feel like they’re providing care to someone they love because they love them, or because they have strong spiritual or religious reasons, or because they believe that the work is important work to do— those types of reasons help sustain caregivers through difficult times.”
In essence, caregivers have to commit to taking care of themselves and not simply sacrifice everything —time, relationships, money — to the needs of their loved one: They have to see their own doctor on a regular basis. If they have a chronic illness like hypertension or diabetes, they have to take their medicines. They have to do the exercises they’re supposed to do. “They have to find a balance between caring for others and caring for themselves,” Jacobs said. When caregivers don’t do that, they place themselves at great risk of dire health consequences.
When caregivers maintain their own health, they’re in a better position to provide ongoing care. “If they feel well and have more energy, then they’re more likely to go about their caregiving duties with gusto and do them with greater effectiveness,” Jacobs said. “On the other hand, when caregivers feel lousy, when they’re dragging, they’re more likely to be irritable. They’re more likely to let things slide. They’re just not being good at the job.”
Dr. Barry Jacobs
A Marathon, Not a Sprint
The best guard against burnout is consciously adopting a wellness plan and following it. Jacobs uses the metaphor of running a marathon. If you’re running a marathon, you better train and wear the right shoes. You better know where the hills are. You better line up people to rally you forward.You better replenish yourself with water along the way. Do all the things that you need to do because you have a long, arduous path ahead of you. “When people consciously start caring for themselves in order to get to the finish, they’re far more likely to finish,” Jacobs said. “They take everything into account that they can control in order to increase the likelihood that they’re going to finish the race.”
When discussing family caregivers, perhaps the best place to start is love, for love is what motivates them to do what they do. However, this abiding love that they have for the person they’re caring for does not mitigate the many stresses and strains that the job entails. That can only be done by making a commitment to put your oxygen mask on first.