Amazing and Disheartening: How We Continue to Fail Family Caregivers

By Shawn Kennedy, AJN interim editor-in-chief

Recently, as part of an ongoing collaborative initiative on supporting family caregivers with AARP (see the comprehensive, and free, AJN supplement called State of the Science: Professional Partners Supporting Family Caregivers), I listened to a group of family caregivers talk about what it’s like to care for sick parents and relatives at home. 

Most of the caregivers were in their 60s and retired, and now found themselves doing the back-breaking work of being on call 24/7, attending to everything from bathing and feeding to chauffeuring to health care appointments, paying the bills, and running the household—sometimes two households, if they lived apart from the person for whom they provided care.

It was amazing and disheartening to listen to them—amazing in terms of the lengths they went to make sure they were doing the right things, and disheartening because they were mostly on their own, with little support from the health care system. And this was right from the start; all said that information to prepare for the transition from hospital to home had been lacking. For the most part, families looked to the family physician to answer questions about what they would need to do at home—nurses were hardly mentioned.

What They Said