From the intro to Jane Brody's syndicated personal health column in The New York Times:As the number of people with severe disabilities, debilitating chronic diseases and terminal illnesses grows, concern about their care has focused primarily on long-term care facilities, nursing homes, home health aides and hospices. Relatively little official attention has been paid to those who provide the overwhelming bulk of services for people, both young and old, who are unable to care for themselves.
I’m talking about family caregivers — primarily wives and daughters, but also partners, siblings, husbands, sons, grandparents and sometimes young children — who by choice or necessity assume the responsibility of caring for loved ones for months, years or even decades. Family caregivers provide an estimated $237 billion in unpaid services a year.
As Rosalynn Carter, the former first lady, put it, “There are only four kinds of people in the world — those who have been caregivers, those who are currently caregivers, those who will be caregivers and those who will need caregivers.”
Various surveys have found that 20 million to 50 million family members in the United States provide care that has traditionally been performed by nurses and social workers. Family caregivers supply about 80 percent of the care for ill or disabled relatives, and the need for their services will only rise as the population ages and modern medicine improves its ability to prolong lives.
An accident that results in a permanent disabling injury or the birth of a special-needs child can force people to assume a lifelong caregiving role. And with more terminally ill people choosing to remain at home until their final day, family members or friends now serve as informal caregivers for nearly three-fourths of sick or disabled older adults living in the community during their last year of life, according to a report in The Archives of Internal Medicine in January 2007.
The report, by Jennifer L. Wolff and colleagues at the Johns Hopkins Bloomberg School of Public Health, described the findings of a national survey of 1,149 caregivers.
Family caregivers often have what amounts to a full-time job and then some, providing more than 40 hours a week of demanding work, the report noted.
Caregivers sometimes resent others in the family who do little to help.
Yet Dr. Wolff found that fewer than 5 percent of the caregivers she and her colleagues surveyed used caregiver support groups or respite care, in which someone substitutes temporarily.
Still, many family caregivers say that they do not see themselves as martyrs making undue sacrifices. In fact, more than two-thirds of the caregivers in Dr. Wolff’s survey said they found their role rewarding despite the emotional, physical and financial strain.
In an article in The Journal of the American Medical Association in 2004, one woman told an interviewer that helping her mother care for her terminally ill father “just brought us closer.”“I felt very privileged to be helpful to him and to be helpful to my mother,” she said.
“And it occasioned a lot of the most precious moments of connection that I’ll always remember.”
Most family caregivers have no training for the physically and emotionally demanding tasks they take on. And many are struggling themselves with age-related disabilities and chronic ailments. Others are members of the so-called sandwich generation who must juggle caregiving with paying jobs and the needs of their own families.
