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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.
“You’re Not Doing It Right”: Loving My Mother Through An Unpredictable Caregiving Journey is a memoir. But the conversation about how to support caregivers needs to move out of the privacy of our homes and into our workplaces.