About Taming the Chaos of Dementia
Barbara's Story - How this book came about
This book, Taming the Chaos of Dementia, has a back story starting in my childhood. I was a 10-year-old girl scout when I first saw the sadness and hopelessness of dementia. I walked through a warehouse of old people, singing Christmas carols and distributing handmade gifts. The endless row of elderly people confined to their beds at Oak Forest Infirmary haunted me then and haunts me still. As a child, I wondered, "Is this what happens to people when they get old?" As an adult, I still wonder, "How can we improve their lives, and the lives of the people who love them?"I became a caregiver for my loved ones as they started aging. My beloved grandmother, who always lived in our home, developed vascular dementia. My mom developed dementia with Parkinson's and my father-in-law developed Alzheimer's disease. Finally, my dear husband and soul mate was afflicted with the dreaded Alzheimer's disease. Each taught me critical lessons on caring for them on this devastating journey, and these are the lessons that I now share with you.The image of Oak Forest Infirmary is still present in my mind, but I find it diminished. By finding new and creative ways to honor and share our love with our people with dementia, I feel like maybe I've done right by all those haunted eyes. As you read this book, I wish you hope and patience. Whether you're reading this early or late in your journey with your person, I can personally assure you that you still have happiness ahead of you.
Barbara J. Huelat
I began working with my mom on this book as an act of love. I had the skills she needed: I teach a course on epidemiology at Stony Brook University, I had coauthored a peer-reviewed article on the topic of dementia and the caregiver with my mom, and I had written many, many research papers on topics tangential to this one. My mom ached with desire to write this book, and I could help her meet a life goal.
I took on this project because I love my mom, but I was super crabby about it. Writing a book is hard. As a professor with grants, teaching, research, and service, I didn't have a lot of time for her project. Every minute I spent editing and researching was time away from my own research.
I don't think I appreciated the beauty of this project until we began to revise the chapter on music. Part of my job in the writing of this book required that I fact check mom's ideas by reading the peer-reviewed literature. When we got to the music section, I realized that not only can scientists verify that we can reach the minds of people with dementia via music, but we know why. I took a step back at that moment-- we were three quarters of the way through the manuscript-- and I realized that scientists could verify all of the tools my mom had collected in this book. And furthermore, she'd taken those ideas and applied them in her own life. I had a moment when I sat back and thought to myself, "Wow. This book really is going to help a lot of people stay connected with their person while taking care of themselves." My mom is amazing.
I'm sure glad this project was foisted upon me. My crabbiness has been replaced with gratitude and respect.
I hope you find this book as amazing as I do.
Sharon T. Pochron, PhD