FLOATING IN THE DEEP END

Ronald Reagan’s daughter shares her experience as a caregiver for her Alzheimer’s-stricken father.

For the better part of a decade, writer Davis took care of her father during his gradual cognitive descent into dementia. That experience, documented in her heart-rending book The Long Goodbye (2004), forms the foundation for this guide for providers and family members seeking to provide optimal assistance to their loved one while maintaining self-care. Davis generously shares anecdotes from her painful yet always compassionate tenure with her father as well as experiences from those within the support group she founded in 2011, Beyond Alzheimer’s. Throughout, the author weaves in advice for caregivers to better evaluate unfamiliar situations—e.g., sundowning (“as the day winds down, the person gets worse”)—and to improve reactions to more classic dementia scenarios such as emotional outbursts and disorientation. Though she personally battled isolation, exhaustion, helplessness, and a fear of death, her journey was not without small gifts of positive light. Davis shares buoyant revelations about how her family, fractured by “distance and dissonance,” formed a more closely knit bond even as Reagan’s cognitive and physical health declined. During the blessing of shared time, she also learned more intimate details about her father. The author outlines several unique characteristics and types of dementia, moving from initial onset to the debilitating progressive stages. She encourages readers to obtain an accurate diagnosis and offers suggestions on navigating contentious situations like hiring an outside aide and maintaining safety measures and restrictions. She stresses the importance of avoiding guilt and denial and finding an anchoring support group. “Once you let go of the rope,” she writes, “you have to deal with the waters around you.” Her bracing narrative is a vital supportive resource for anyone navigating the choppy waters of Alzheimer’s within a familial network.

A heartbreaking yet hopeful journey through the painful chaos of a loved one’s compassionate care.