Beyond Help

If you were to see William on the street, you might think he’s the model of serenity. In his mid-60s, unshaven, casually dressed with a baseball cap atop his greying head, you could easily assume he’s a contented retiree. And you’d be correct—at least regarding the retiree part. Studying his face more intently, however, you’d detect unmistakable signs of weariness. William is one of the millions across the country whose daily life is a silent struggle. “As a caregiver,” he says, with a sigh of resignation, “I have lost my life to dedicate it to my wife’s care. Nobody wants this responsibility, and people stay at a distance.” When you ask if there is no one he can turn to for help, he shrugs, “I don’t have extended family to provide support and take the responsibility on a consistent and constant basis.” Then he adds, “When I hear the word family, the only person that comes to mind is myself. Nobody else wants to assume the role of caregiver.” Today in the United States, about one in five adults aged 18 or older lives with severe mental illness (SMI). That represents more than 13 million Americans. Of these, 78%, or well over 10 million, rely on family members as their primary caregivers. These numbers show that William is part of a large cohort. However, as his quote indicates, each member of this cohort shoulders a lonely burden, one that is often overlooked. People like William are increasingly falling through the cracks of our porous health care system. This book seeks to shed light on the invisible struggles of family caregivers of those diagnosed with SMI. To better understand their challenges, I conducted interviews with seven caregivers. The interviews were designed to answer the following question: What are the lived experiences of family caregivers who support relatives with SMI symptoms during mental health treatment? From these interviews, I identified eight themes, each of which offers a different perspective on that question.