The Cost of Caring
Millions of people like my brother care for loved ones--sacrificing time, careers, and money.
BY: Robert Nylen
For years, my brother John and I have had eerily similar nightmares starring our older sister, Sue. One began when we were kids. We dream that we're riding in our old family car, a 1954 Chevy wagon. Sue is behind the wheel.
We're terrified. Sue is cerebral palsied. She can't drive. We go over a cliff.
We can laugh now about that dark dream because it won't come true. But recently, we've each had a scary new dream involving Sue. This one isn't funny because it could happen. In this dream, Sue gets sick and needs costly treatment. The modest estate Dad left for her runs out, leaving John, with whom she lives, homeless.
We're not the only people having such nightmares. My brother is one of millions of caretakers who voluntarily look after sick, elderly, or disabled family members.
A recent study by the National Family Caregiving Association (NFCA) found that there are 54 million caregivers in the U.S. Follow the math: 54 million caregivers plus an equal number of care recipients means 108 million Americans either give or receive care. That staggering sum encompasses one in three Americans.
As the U.S. population ages, care recipients are increasingly likely to be aging adult relatives like Sue, who is 63. Most of the people providing care are family members like John, who, at 51, is no kid himself.
Like many family caretakers, John essentially has two jobs. He earns his living as a salesman and display decorator at the Winterthur Museum Store in Wilmington, Del., and he spends over 20 hours each week helping Sue. When she gets physical therapy, John gives more than 30 weekly hours to Sue's care.
Although his duties aren't hard labor, their cumulative effects are draining and isolating. When I called John on his birthday last August 15, he was exhausted. For the first time in the five years he's been Sue's primary caregiver, John wasn't too polite to say so. "I'm at the end of my rope," he admitted. "You don’t know how demanding my life is."
I knew he was often frazzled, sure, but he was right: I never dwelled on his plight; doing so would have made me feel guilty. So until his call awakened me, I ignored the problem. Now I had to help, or John might burn out.
From August to November, my wife, Kit, and I went to Delaware several times. We did small chores, easing John’s grind a bit. We shopped for groceries and took Sue to therapy and the library. I puttered around the house. Kit worked on family finances and took John on an antiquing jaunt. We rented a couple of movies, cooked some meals, and hung out together.
John's chores never end. Fortunately, Sue isn't sick and doesn't need special nursing--yet. Her congenital condition is not an illness. Cerebral palsy, however, makes her susceptible to accident and illness; it can't be cured and worsens over time. She needs help with simple daily tasks like shopping, cooking, cleaning, and taking medication.
There's nothing technical about John's work. It just takes commitment. John has devoted hours, weeks, and months to the family for 11 years. For six years, he cared for our father, Bert, too. Along the way, John has lost a dream of buying his own house and reduced his management ambitions.
As hard as he works, John actually devotes fewer weekly hours to his good deeds than most caregivers. NFCA reports that more than 30 million Americans spend over 40 hours a week caring for dependent loved ones. (Check www.nfcacares.org for data and good tips about how to cope.) For givers whose loved ones have serious problems like Alzheimer's disease, spinal injury, pronounced retardation, or severe breathing disorders, caregiving is virtually constant.
For some caregivers, merely arranging a night at the movies can be as hard as planning a two-week vacation is for an unencumbered person. Caregivers suffer frustration, fatigue, and depression. It is a lonely, unremitting grind.