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Who Cares About Caregiving? Part 1

It's not a disease or disability. It's the future of health care.


On November 26, 2002, The Charlotte Observer published the following op-ed I wrote. In an upcoming Part 2, I will discuss how far our society has –– or hasn’t –– come in supporting unpaid family caregivers.

It's 4 a.m. I'm at my job at The Charlotte Observer's dayside copydesk three hours before I'm scheduled to begin. That's because I plan to work a couple of hours before leaving to check on my dad at a local retirement community. Though he's not incapacitated enough to qualify for assisted living, he still needs me on a daily basis, especially when he wakes up, to help him get ready for his day. Then it's back to work for the rest of my 12-hour, two-days-a-week shift. I'm lucky to have been able to work out this unusual part-time arrangement with my supervisors. Most caregivers I know in Charlotte or elsewhere have a much narrower set of options: Work according to company expectations, take an unpaid leave of absence or find another job. That's caregiving in 21st-century America. At a time when one would think our country has figured out how to adequately meet the needs of our growing elderly population, we're still in the Middle Ages. Actually, in this respect, the Middle Ages was probably a better time –– a life expectancy one-third of what it is today, a rare incidence of age-related diseases and a social environment in which families remained intact and in the same community for generations. Today it isn't bad enough that our society marginalizes our elders. Caregiving itself is treated as a disease or disability, and the caregiver is often alienated, neglected and even shunned. It's been my experience that most people don't want to get too close to a caregiver on a regular basis. Much of our lives is not our own, and we are forced to decide which relationships, social engagements and interests to sustain and which to drop. And, let's face it, sometimes we are too exhausted or depressed to be fun company. And so the options society offers us are 1) caregiver support groups (which some of us don't have the time or energy to attend), 2) institutionalized care of our loved one (an option many of us struggle against or reject, given the inadequate, depressing conditions of many nursing homes or other facilities), 3) respite care (which can be sporadic and/or expensive) and 4) stress-reduction techniques, such as meditation, yoga and journaling. It's as if we are reluctant poster children for an insidious condition. But caregiving can be a very rich, spiritual lifestyle. Besides the reward of knowing that we are doing the right thing by helping someone live a dignified, quality life, the commitment we make to that loved one places life's meaning and values squarely in our face each day. We can't help but examine our own needs, fears, achievements and dreams. And when it comes to lovers, friends and even family, we discover that the wheat gets separated from the chaff very quickly. We know quite clearly who's with us for the long haul. And a long haul it often is. Modern medicine can manage such diseases as Alzheimer's, congestive heart failure, stroke, diabetes, kidney failure and osteoporosis to the extent that these illnesses may be more chronic than acute, offering the elderly person years of additional life. And while insurance companies and government policymakers continue to compute and debate the cost-effectiveness of such treatments for the patient, the cost to the caregiver –– in terms of time; physical, mental and emotional health; wages lost and promotions denied –– is barely a blip on economists' radar screens. There's a cruel irony to all of this. Caregiving is not a disease or disability. It's the future of American health care, a future that's arriving very quickly. "& Thou Shalt Honor," the companion book to the recent PBS documentary of the same name, reports that according to 1997 figures from the AARP and Travelers Insurance Co., there were 22.4 million caregiving households in the United States. Current AARP and National Alliance for Caregiving estimates project an increase to 39 million households by 2007. Couple this with the current national nursing-shortage crisis, the gross inadequacies of managed care, and the fact that baby boomers are now reaching senior citizen status (or lack of it), and the conclusion is clear: If you're not a caregiver now, the chances are very good that you will be one in the next five to 10 years. Political and economic perspectives that leave the burden of the time and cost of caregiving to family members are not only arrogant but blind and dangerous. Our entire economy takes a big hit when caregivers must surpass their quota of vacation, personal and sick days or reduce their work hours. Caregivers are rendered less productive and thus less able to earn, save, invest and consume. It doesn't take a crystal ball to see that our political, economic and social views of caregivers have to change -- radically. The way to change them can be inspired by looking more closely at the behavior of caregivers themselves. Commitment, determination, courage, generosity, patience, discipline, ingenuity, compassion –– these aren't hollow virtues. They are indispensable tools that help us survive. Our national policies can be based on these same approaches. And if our society creates, funds and implements such policies, we will find ourselves performing spiritual work that's not merely life-sustaining but life-affirming. Just the kind that caregivers daily struggle to do. As I'm called to do, right now.


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