On October 5, 2007, Renée Norman’s husband, Chris, was diagnosed with ALS or Amyotrophic lateral sclerosis, better known as Lou Gehrig’s disease. When the doctors at the University of Virginia Medical Center diagnosed Chris, Renée wasn’t sure what ALS was. But she soon learned that it is a progressive neuromuscular disease that eventually paralyzes and kills a person. Chris had a very rapid case of ALS, and he passed away with grace and ease thirteen months after that initial visit to UVA.
During that entire time, Renée was her husband’s loving, constant caregiver, and what she experienced and learned as she cared for him is shared in this book. This brutally honest account is no romantic tale like those often portrayed in movies, but a bare-knuckle retelling of the reality of this tragically debilitating and fatal disease and a loved one’s work in dealing with its impact on her husband, her children and herself.
For the 29 percent of adults in this country who serve as unpaid caregivers, this book provides detailed do’s and don’ts for them and for those who want to help support the family. There are chapters that offer specific tips about what to do during hospital stays or operations and their aftermath. There are also suggestions on how to gracefully work with well-wishers who want to visit the home. Included are spreadsheets to help manage the health care, as well as, information on the necessary documents you and your loved one may need.
Thanks to Renée’s meticulous note-taking and list-making, caregivers finally have a handy reference guide that assists the person with practical tools. At the same time, her compelling story brings awareness to the need to be a proactive advocate for your loved one — sometimes in unexpected areas.