About the Book
In "You're Not Doing It Right," Ellen Patnaude bravely opens the door to the haunting reality of Lewy body dementia (LBD) and unravels its profound impact on families. One of the most common types of dementia after Alzheimer's disease, LBD is marked by fluctuations in cognition, hallucinations, and motor symptoms. The journey begins with subtle warnings of small changes in her mother's behavior that worry Patnaude's father, but go unnoticed by the author and her sibling.
Through heartfelt storytelling, Patnaude recounts her challenges in addressing the disturbing shifts in her mother's behavior and managing their long-standing, emotionally charged relationship. The pages unfold with raw honesty, detailing the struggles that ensue when a family is faced with a progressive, life-altering diagnosis. In contrast to the 'long goodbye' of Alzheimer's disease, LBD plunges Patnaude and her family into a roller coaster ride from hell. Every emotion is laid bare, from the initial denial to the desperate attempts to help and connect with a loved one slipping away.
Patnaude offers invaluable insights and lessons learned in the throes of this heartbreaking journey. With unwavering candor, she reflects on what might have made a difference for herself and her family members and shares the resources that may help other struggling families. She acknowledges the commonality of denial and the universal resistance to accepting a devastating diagnosis, especially when glimpses of normalcy persist. The relentless challenges of caring for someone with any type of dementia often lead to heightened stress, exhaustion, and severe emotional strain on caregivers. In this exploration of love, loss, and resilience, Patnaude extends a compassionate hand to those grappling with similar circumstances, offering solace and understanding within the pages of this deeply moving narrative.
About the Author :
In 2016, Ellen Patnaude and her family first observed memory and behavior changes in her mother, Charlotte, that eventually lead to a diagnosis of Lewy body dementia (LBD). Caring for Charlotte during her final months was a trying and isolating experience for Ellen and her family, and contributed to her to become an advocate for caregivers everywhere. Today Ellen is not only an Executive and Team Communication Coach who works with companies around the world, but also a certified Volunteer Community Educator with the Alzheimer's Association of Michigan. A portion of the proceeds from every sale of this book will go towards several caregiver support organizations.
Review :
"The vulnerability that Ellen displays throughout "You're Not Doing It Right," creates an incredibly authentic view into the most difficult experience someone can go through. I went through a spectrum of intense emotions while on the journey of Ellen and her family. I learned so much about dementia, what to look for, and what to expect during different stages, specifically Lewy body dementia. This book is a must-read for anyone who has gone through the loss of a parent or loved one, anyone who is struggling with intergenerational relationships, and anyone who will likely be faced with difficult decisions for aging loved ones, so basically everyone. Ellen has a gift for telling stories in a way that makes them so relatable. Several times while reading the book, I thought, That's me too! The same thing happened to me! I am so grateful to have read this book."
Denette Suddeth; Former Caregiver; Bank Executive
"Our mission at Cariloop is to relieve the stress and anxiety felt by all caregivers. We have a front-row seat to the struggles of many family caregivers. Ellen Patnaude's "You're Not Doing It Right" was a page-turner for me, even though I've been hearing about the struggles of caregivers for many years. Ellen gives us an intimate glimpse into her family's journey in a way that is real, helpful, honest, and heartbreaking-all while being very readable. I couldn't put it down. This is a memoir, not a self-help book, yet I came away feeling like I learned something valuable about my own feelings through Ellen sharing hers. I recommend this book to all caregivers, as so many struggle with self-doubt, and to anyone who can relate to juggling the balance of work, family, and life."
Wendy Whittington, MD, MMM; Chief Care Officer of Cariloop
"I'm not religious, but I found myself saying 'Amen!' during my reading of this book. Ellen's experience resonates with me on so many levels. Her thoughts, the realizations she had about her mother in each moment, and even some of the harsh doctor-speak remind me of my own experiences. The emotional, mental, and physical roller coaster of caregiving is real. Every caregiver needs to read this book. Many themes within caregiving are similar. There will be unknowns, there is always denial, and of course, the person you care for will be less like themselves at the end of the journey. This is life, but if we talk more about this reality, we'll know some of the things to look for and have a few ways to care for ourselves and our loved ones. Thank you, Ellen, for letting your thoughts, feelings, and very clear tips pour out of you."
Erna Alfred Liousas; Caregiver, Strategist, Changemaker; Host of the podcast The Whole Caregiver
"I feel validated. "You're Not Doing It Right" hits so many marks I went through as an only child caring for my mom, who I am the spitting image of. Instead of over-romanticizing the opportunity to be there in ways never imagined, this book is a real take on the hills and valleys of tending to an aging parent with whom one has had a loving yet tension-filled relationship. The dichotomy of spending countless hours with this person you love more than anyone-this person who can pluck your ever-loving last nerve in two seconds flat while they're just trying to be 'helpful' with their suggestion or observation-was mind-numbing. Ellen's experience is one that will resonate widely as she takes us on that roller coaster with her."
Clinton Crow; Former Caregiver; COO of LEAD
