This highly readable guide for dementia caregivers blends a medical memoir with useful advice.
After the emotionally draining experience lived through by this book’s three authors, they’re undoubtedly thinking the same thing: “If I knew then what I know now.” The sisters share the story of their mother’s five-year mental decline as she went through the various stages of dementia. The sisters had intended to craft a personal memoir; however, they write, “In the course of our research, that goal changed as we gained insight into the hopes and concerns of the people we met in memory care facilities.” This led them to recast the book into a manual for caregivers that recounts their own experience and guides readers to a greater understanding of dementia as well as the care options. With considerable skill, the authors interweave their story with the issues they faced, drawing upon their own situation to illustrate what they didn’t know at the time. “We learned about dementia by trial and error,” they write, “and we stumbled many times, because we didn’t know where to turn. Now we realize the importance of understanding the course of the disease and its outcome—this knowledge would have given us the tools to plan ahead and provide the best possible care for our mother.” It is these tools the authors generously share in a tightly organized, well-written work. They offer a comprehensive discussion of dementia, its types (including Alzheimer’s) and stages; detail the kinds of available care facilities and facility agreements; address paying for dementia care; talk about patient advocacy; cover hospice and palliative care; and include a chapter on advance care directives. Every chapter ends with “Lessons Learned”—not so much a summary as insightful observations. In closing, the authors peek into the future in a fascinating section that demonstrates how social and technological changes might revolutionize dementia care. They also provide an excellent compilation of resources.
Frank and poignant, with the optimum balance of personal storytelling and actionable guidance.