A Marathon with No Finish Line

Nov 4, 2011, 12:00 PM, Posted by Linda Wright Moore

By Linda Wright Moore
RWJF Senior Communications Officer

Help wanted: Must be available and on call 24/7, year round. No vacations, no days off, no benefits or retirement plan. Base salary: zip. Likely to require taking time off from paid work (without pay) under the Family and Medical Leave Act. Qualified candidates should expect to use own funds, including savings, for expenses. Preferred applicants should have extensive experience in scheduling and arranging transportation to multiple appointments; administration of medications and treatments; and management of complex, chronic and acute conditions. Most importantly, they must be skilled at coordination of care, with capacity to connect with overburdened primary care providers who are too busy to talk, and a bloodhound’s nose for tracking down elusive specialists for consultation, on the rare days they are not in surgery at dawn, out to lunch or gone for the day at 3:45pm. Must agree to forgo taking care of one’s own health (no time for that!) Total commitment is required and will be rewarded with the satisfaction of doing the right thing for someone close to you – even as personal hopes, hobbies and aspirations are stashed in a lock box for which there is no key. WARNING: Rarely do individuals actively seek this position; like life itself, it generally just happens to people. And once it does, beware: you’re not allowed to quit.

If this sounds like your life – then you’re a family caregiver, and now is your time. Mine too. I’m the primary caregiver for my husband, who has been disabled for over a year now.

Here’s some good news: November is not just for turkey, dressing, Pilgrims and pumpkin pie. Along with Thanksgiving, November is National Family Caregivers Month, a time for recognizing and giving thanks for – and to – the 43.5 million family caregivers over age 18 in America, whose unpaid services to support the health needs of family members aged 50 or older were valued at $375 billion in 2007.

The observance was started by the National Family Caregivers Association during Thanksgiving week in 1994, then morphed to a month-long celebration as “interest grew in family caregiving issues.”

As the population ages, life expectancy lengthens and people survive and thrive while managing multiple ailments – family caregiving is becoming a norm and a necessity for millions of Americans. A study by the National Alliance for Caregiving and AARP broadly defines the typical caregiver as a married and employed 50-year-old white woman, caring for one relative (most often a mother) for about 19 hours per week over a four-year period.

That broad description is one profile among many. About 19 percent of all American adults are caregivers. Their efforts tend to be unsung, and generally invisible to most people. Only when you join their ranks, does the fog clear – and you begin to see others who are in the same boat, on similar journeys.

I’ve gotten encouragement and support from a broad range of people. My closest friends provide unfailing moral support, and a wider array of acquaintances and colleagues has stepped up to provide volunteer help to my husband and me on a regular basis, and sometimes when an urgent issue arises – like when my husband must be at an appointment and I must be at work, for example.

Primary family caregivers also frequently engage paid caregivers: Forty-one percent of caregivers who support family members outside of nursing homes also paid for help from aides over the last 12 months. These home care aides are another invisible pillar of support in a health care system that is disjointed, disconnected and particularly ineffective in meeting the needs of the chronically ill outside of institutional settings. At their best, home care aides can be lifesavers, providing reliable, compassionate care to patients in their homes and respite for weary family caregivers.

What has become clear to me, gradually, is that caregiving is not a sprint – it’s a marathon, with no finish line in sight. If you don’t pace yourself, you can’t go the distance: the demands of caregiving can be extremely stressful, and potentially damaging to caregivers’ health. Pacing yourself requires learning to find joy in small pleasures of life each day: a shared chuckle with a friend, a walk in the sunshine, a few stolen minutes for reflection and relaxation.

Our health system should do more – much more – to support family caregivers. Their multi-billion dollar contribution to the wellbeing of their loved ones is also a generous gift to society. Care coordination assistance is way overdue, as well as access to respite relief and the occasional opportunity to reopen that locked box of dreams and aspirations, set aside in the service of others.

So here’s a shout-out to my fellow caregivers: Now is the time to tell our story and to celebrate. Happy National Family Caregivers’ Month to all: Be proud, stand tall and enjoy!

And don’t forget to take care of yourself.

This commentary originally appeared on the RWJF Human Capital Blog. The views and opinions expressed here are those of the authors.