Recommended Books

There are a variety of books available to assist family caregivers with home care issues and the stress of day-to-day care giving. Although we often acknowledge that care giving can be difficult, we prefer books that offer hopeful, practical perspectives. Rather than focusing on “burden” we assist family caregivers to do what they can, seek help when needed, and be open to the many joyful and quality family moments that caregivers of older adults often experience.

Remembering the Music, Forgetting the Words: Travels with Mom in the Land of Dementia

Kate Whouley, author of Remembering the Music, Forgetting the Words: Travels with Mom in the Land of Dementia, has given us a hopeful example, both of the transformation of a parent-adult child relationship in the context of eldercare and of dementia care itself.  With the Baby-boomer cohort caring for their parents while aging themselves, this memoir provides many opportunities for reflection about what it means to care for others, what all humans need as they age, and what is important in life and in death.  Understanding the power of words, Whouley does not flinch or shy away from Alzheimer’s disease and dementia and describes her journey with clarity and economy. The complex task of handling her mother’s affairs following the dementia diagnosis threatens Whouley’s livelihood and her emotional wellbeing; yet she charts a thoughtful, present-oriented course, managing to preserve both her mother’s dignity and her own sanity.  Whouley enlists the help of a professional care manager, maintains her friendships, and identifies ways that her few extended family members can help.  Using the metaphor of music  the author reminds us both of the essence and the value of human caring.  The words may be forgotten, but a person with dementia is still a person deserving of kindness, attention, and care.

I recommend Remembering the Music not only to those who have already traveled this road or those who face the prospect of the journey, but also to caregivers of all stripes, professional and lay, and to those who care about community. Reading Whouley’s memoir gave me many opportunities to reminisce about my own family caregiving experiences during the five years I helped care for my father, who also had Alzheimer’s disease and who died in 2003 of lung cancer. Coming from a musical family myself and being particular about quality eldercare, I appreciated Kate’s efforts to maintain her mother’s connection to their relationship by helping her to attend concerts. I remembered how I would transport my parents to community band rehearsal, something we did up to two days before my father’s death.  I treasured the director’s and band members’ kindness, allowing my father to continue playing the bass drum. Throughout the book I was moved to tears many times, as a daughter and as a person who cares deeply about the quality of life of older people.

What lessons does Whouley offer to professional caregivers? In honest, direct terms, she highlights the struggles of an only adult child, outlining the challenges, yet demonstrating a lack of burden. As her mother’s strength drains and her health problems expand Whouley describes how her own advocacy role grew. For younger professionals new to the field of eldercare, Whouley portrays many examples of advocacy in action and her honest discussion of her experiences and feelings may help new professionals empathize with family caregivers.

Many educated people, including healthcare professionals, have negative outlooks about declines in memory or health, seeing the glass half empty and viewing the prognosis of an incurable disease as hopeless. Yet those who have dementia teach us all to live in the moment and accept joy. From the perspective of an adult daughter,  Remembering the Music offers a case study highlighting many helpful pointers for family caregivers.  Whouley’s wisdom includes the importance of friendship and creating a support system to sustain the caregiver, learning to accept imperfection, and that forgiveness is possible and worth it.  Also, the book shares one older woman’s situation from dementia diagnosis through death, demonstrating that even an older person who cannot remember can still give, and teach, and enjoy the music.

Review By Martha A. Eastman, PhD, NP-C, CMC

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