There's no question that they deserve it, and now's an ideal time to observe it: National Family Caregivers Week. Every year since 1986, Congress has designated Thanksgiving Week as a time to acknowledge the vital role of family caregivers.
"We chose this week because it's a time when families get together to give thanks," said Natalie Cannon of the House Select Committee on Aging, which helps coordinate the national observation. And few are more deserving of praise than the daughters and wives, and increasingly sons and husbands, who provide between 80 percent and 90 percent of the care needed by older adults.This year, as in past years, National Family Caregivers Week will be marked by a congressional forum on the topic and public education campaigns.
But do caregivers have blessings to count besides these largely symbolic gestures of gratitude? Consider that Congress, by repealing the Medicare Catastrophic Care Act earlier this year, did away with a respite benefit for family caregivers, which would have provided up to 80 hours of relief from caregiving responsibilities per year. Moreover, President Bush in July vetoed a bill that would have allowed workers to take unpaid leave to care for ill parents. In light of these events, can we claim to be addressing the needs of family caregivers? Opinions vary.
Said Cannon, "There's an awful lot going on (to help family caregivers)." As proof, she pointed to the growing number of corporations that voluntarily provide elder-care benefits to employees and to research by the National Institute of Mental Health on the needs of caregivers. She also extolled the recommendations by the U.S. Bipartisan Commission on Comprehensive Health Care to expand insurance coverage for home-based care.
But others are less sanguine. "In some ways there's been a lot of improvement (in meeting the needs of family caregivers) and in other ways not enough," said Michael Creedon, an expert on aging and the workplace. He, too, cited corporate elder-care programs as markers of progress.
Most families are not forced to provide care for elderly relatives. "They do it as an expression of their love," says Lou Glasse, president of the Older Women's League. A caregiver's love may be limitless, but not so his or her body, budget and tolerance for stress. It's important to remember that family caregivers have rights, as an anonymous writer points out:
"Inasmuch as we, the caregivers, devote ourselves and our internal and external resources to the maintenance and support of a loved one, we declare that we have basic inalienable rights. Furthermore, we recognize that we are not alone in our challenge to maintain a humane lifestyle for ourselves and our loved ones. Therefore, we pledge our support to all who struggle with balancing the responsibilities of daily living. With this in mind, we mandate the following rights:
- "The right to live our own life and retain our dignity and sense of self.
- "The right to choose a plan of caring that accommodates our needs and the needs of those we care about.
- "The right to be recognized as a vital and stabilizing source within our families.
- "The right to be free of guilt, anguish and doubt, knowing that the decisions we make are appropriate for our own well-being and that of our loved one.
- "The right to be ourselves enough to have confidence that we are doing the best that we are able.
"With these rights, the disabled and frail elderly will be provided the highest and best care that we are capable of giving, and we may take pride in ourselves."