It Shouldn't Be This Way (PDF)

The failure of long-term care is the country's best-kept embarrassing secret. Almost every adult in the United States will either enter a nursing home or have to deal with a parent or other relative who does. Studies show that 40 percent of all adults who live to age sixty-five will enter a nursing home before they die, while even more will use another form of long-term care.

Part memoir, part practical guide, part prescription for change, It Shouldn't Be This Way is a unique look at the problems of long-term care. Robert L. Kane, a highly experienced physician and gerontologist, and his sister, Joan C. West, tell the painful story of what happened to their mother after she suffered a debilitating stroke and spent the last years of her life in rehabilitation, assisted-living facilities, and finally a nursing home. Along the way, her adult children encountered some professionals who were kind and considerate but also many frustrations—inadequate care and the need to hire private duty aides, as well as poor communication and lack of coordination throughout the system. The situation, they found, proved far more difficult than it needed to be.

As the authors recount their mother's story, they impart various lessons they learned from each phase of the experience. They alert those who are confronting such situations for the first time about what they will likely face and how to approach the problems. Closing with a broader look at why long-term care is the way it is, they propose steps to make necessary reforms, including the development of national organizations to work for change. Their message to families, care professionals, and policy-makers could not be more urgent.