Whouley, K. (2011). Remembering the music, forgetting the words: Travels with mom in the land of dementia. Boston, MA: Beacon. $16.00 ISBN 978-0-8070-0331-2
Remembering the music, forgetting the words: Travels with mom in the land of dementia is a memoir written by Kate Whouley, about her experience as a caregiver for her mother, who has Alzheimer’s disease. This book is a comprehensive and detailed autobiographical account of both Whouley’s and her mother’s lives as they experience the disease. The story chronicles the period just prior to diagnosis, until just after the funeral. Whouley’s writing is informal and creative, and tells a story that is easily understood by a variety of readers. For the most part, the book is a chronological story of her mother’s Alzheimer’s disease, and how it affects the lives of the two women. Background information on their lives is integrated very skillfully, in the form of stories, and supplements the present information very well.
Throughout the book, Whouley raises a lot of important issues about living with Alzheimer’s disease, and being a caregiver for someone living with the disease. For example, she writes about how her mother is able to hide the early symptoms of the disease simply by not letting her daughter into her house. Next, she is concerned with her mother’s safety in her own home, and has to make the difficult decision to move her to an assisted living facility. At this point, her mother’s condition has become much worse. Not long after Kate is granted power of attorney and the right to make medical decisions, she must decide whether or not to treat her mother’s newly discovered lung cancer. Meanwhile, Whouley is still going about her daily life; trying to work, play her music and keep up her own house, all in addition to caring for her mother, packing up her house, and preparing it for sale.
Before reading this book, I had been thinking a lot about my grandmother, who is in the early stages of dementia, and I had a lot of questions about how a family might be affected by Alzheimer’s disease. This book answered a lot of those questions very thoroughly, often bringing up things I never would have thought about, yet it also left me with many more questions still to be answered. Prior to reading the book, I had a basic idea of how Alzheimer’s disease affects the body and the brain, but I had never read a firsthand account like this before, and it definitely made me think about the disease in a different way. One particular example which caused me to consider Alzheimer’s disease differently, is Kate’s comparison of Alzheimer’s disease to terminal cancer. In this comparison, she says that, “No one dies of Alzheimer’s. The disease does not ravage the body the same way a terminal cancer does. Alzheimer’s patients simply forget how to stay alive” (Whouley, p.77). That idea really stayed with me, and made me think about what it must be like to just forget how to do the basic things a person needs to do to stay alive, and then to forget that you even need to do them. To be honest, it scared me because it is so devastating to think about.
I found Whouley’s writing to be quite engaging and easy to read, though the subject matter was difficult at times. It is very informative, and gives the reader a clear picture of what it is like to be a caregiver for a relative with Alzheimer’s. Reading this book made me realize what my aunt may be going through as she cares for my grandmother in her early stages of Alzheimer’s disease, and it also prepared me for what may be ahead. I am also now aware of ways that I can help, but which would never have crossed my mind before. For these reasons, I highly recommend this book to anyone who has a friend or loved one that is affected by Alzheimer’s disease. It is by no means a scientific account, or a set of rules, but it does provide insight into the experiences that may lie ahead and gives the reader a good understanding of the subject matter.