1. Mason, Diana J. PhD, RN, FAAN, AJN Editor-in-Chief


The 'shadow workforce' needs our help.


Article Content

In 1976 I was studying health care in Norway when I received a telegram from my family, asking me to come home. A month earlier, I'd learned that my 58-year-old father had metastatic prostate cancer that had spread to his spine. Now radiation treatments had left him paralyzed below the nipple line and without bladder or bowel control. He was in pain; he had to be turned frequently, use an indwelling catheter, and have his stool manually removed. My family had been taking care of him, but they were quickly becoming exhausted. My mother felt unable to manage his care, and although two of my siblings still lived with our parents, they were employed and worked long hours. They asked me to return and help care for him; the alternative was placement in a nursing home.

Figure. No caption a... - Click to enlarge in new windowFigure. No caption available.

My father was a stoic man. On an earlier visit, I'd asked whether he was afraid of dying. He assured me he wasn't. Then he said that he wanted to die at home, not in a hospital. I'd promised to do my best to ensure that he remained at home. I immediately returned and took over his care; he began to rebound. As a nurse I knew the nuances of care, and now I shared them with my family. We gave him calorie-dense, small, frequent feedings. We turned him every two hours, using pillows to support his wasted body. I massaged his back and limbs and smiled inwardly when I heard him sigh, releasing tension and fear. I made sure he was medicated for pain around the clock-I knew he was too proud to ask-and watched for the grimace that told me more medication was needed.


Two weeks before he died, he was hospitalized for surgery to remove clots in his bladder. I stayed with him and continued to care for him, but the nurses seemed to see this as an intrusion. They withheld his pain medication because he didn't ask for it. When I emptied and measured the contents of his catheter bag and recorded the amount, a nurse told me not to touch the bag. His bowel routine was disrupted despite my pleas, resulting in an impaction. Not one nurse asked how I was managing, or what we might need to continue caring for him once he returned home.


A week after being discharged, my father died at home. He had financed my nursing education and given me a bright future. And I had given him a gift as well-that of loving care at the end of his life. But too few people receive that gift. Our country has been shifting responsibility for caregiving back to families, creating what Ann Bookman and Mona Harrington referred to as a "shadow workforce" in the December 2007 issue of the Journal of Health Politics, Policy, and Law. Most families take on this responsibility without the necessary education and support, and the resulting stress compromises their health. AJN has partnered with the AARP Foundation, the Council on Social Work Education, the Family Caregiver Alliance, and others to identify and further develop best practices for professionals supporting family caregivers. The project is funded by grants from the John A. Hartford Foundation and the Jacob and Valeria Langeloth Foundation. We share the results in a state-of-the-science report mailed with this issue; it's also available online at Both of this month's articles from the How to Try This series focus on working with family caregivers.


Caregiving can be a burden; but it can also enrich the lives of all involved, as it did mine. Ask your patients' family members whether they'd like to help provide care and, if so, what they might feel comfortable doing. Ask those already acting as caregivers how they're managing and what support they need. Refer them to resources like the Family Caregiver Alliance. And whatever your practice setting, work with your colleagues in social work to lead workplace discussions about how to better serve family caregivers. We'll all benefit.