Saturday, August 7, 2010

Book Review: Twilight Travels with Mother

Twilight Travels With Mother: How I Found Strength, Hope, and a Sense of Humor Living With Alzheimer's

Mary Ann Mayo
Published in 2003 by Revell
250 pages

Mary Ann Mayo describes the 22 years her mother spent with Alzheimer's Disease, how it affected their relationship, and the impact the disease had on their individual lives. She addresses her own fears of having dementia upon turning 60, the age her mother was diagnosed. She incorporates her research on the disease with her family's experiences and shares information she wishes she had access to while caring for her mom. She also writes about ways to age gracefully and emphasizes the steps she's taken to leave no unasnwered questions for her own children.

Describing the emotional journey with her mother, Mayo writes of traveling on a winding road:
The pace was leisurely - meandering and lingering along the way. Interspersed thoughout and generally with no warning, a corner would be turned leading to a new precipice; some were steep, others gradual. Occasionally the decline proved a mere detour; other times it necessitated a complete remapping and reorganization of her journey. Unremittingly the voyage continued, with each course correction resulting in greater hesitancy, additional anxiety, and less joy (page 11).
Her persepctive as a daughter is valuable to me and I appreciate the personal experiences she shares (stories of her mother's behavior were the most interesting). Not everything in the book applies to me or my mom. One thing I'm thankful not to relate to was the change in her mother's personality as the disease progressed. She writes that throughout her life, her mother was typically passive agressive but pleasant. In the throes of Alzheimer's however, she became paranoid, demanding, and aggressive. Her mom even verbalized that she never wanted Mayo as a baby. Talk about adding insult to injury.

In the first few chapters, Mayo compares her mom's experience to that of her two aunts (one older and one younger than her mother). The oldest lived to age 90 with a sharp mind but unhealthy body. She was afflicted by a series of strokes over several years, but her body gave up before her mind did. Mayo's mother, the second-born, lived a healthy lifestyle and her body remained in good health, but her mind was weakened and eventually destroyed by Alzheimer's. Several minor strokes had a greater, more debilitating mental impact on her than her older sister's more serious strokes. The younger of the two aunts is alive and considerably well (at the time of writing) in her late eighties.

Of the three, she continues on, not having escaped dementia but somehow succeeding in staving it off to the end. Her sisters have passed on, one with a great body but very little functional brain; the other with a functional brain but a body that just quit working (page 49).
Comparison of these three sisters forms the basis for Mayo's research, as she tries to understand the influences on each one's health or lack thereof. While examining her relatives aging, Mayo cites the impact of family history, head injuries, education, and an Alzheimer's gene. With her extensive research on dementia, she quotes studies and statisics, but includes exceptions to every "rule."

I thought it would be easy to keep the content of this book at arm's length and not get emotionally overwhelmed because of the difference in age between myself and the author. However, Mayo spends so much time discussing how to age well, I started feeling like a hypochondriac: I turn 30 next year. It's all downhill from there! I also had a knee-jerk reaction of regret: did Mom have enough vitamin B12 in her diet? Was her depression deeper than I knew? Could this have been avoided? A growing body of information on possible causes and influential factors is mildly comforting, but a recurring message in the book is that every case is highly individualized. The mysteries of the disease don't make coping any easier.

Chapter four focuses on ways to push back the onset of Alzheimer's (including heart health, stress, nutrition, diet supplements, drugs, healthy habits, and faith) and chapter five covers the challenges of diagnosis. Chapters six and seven cover definitions of dementia and Alzheimer's, and the newest research on symptoms and medications (already seven years old, I imagine this information is now outdated, or at least incomplete). Chapter eight is about finding a balance between independence and adequate care (i.e. supervision) for a person with Alzheimer's.

Chapter nine discusses caregiving and the excrutiating task of being responsible for a parent who is less and less the person you know and love. Mayo shares aspects of her mother's progression through Alzheimers:
  • She believed Mayo was trying to steal the family farm.
  • She re-married several years after being diagnosed, but on the way to the wedding, forgot she had said "yes" to the proposal, and demanded Mayo take her home.
  • She had several behavioral problems at the care facilities she lived in (power struggles with staff, fights with other residents, etc), and Mayo was called on more than one occasion and asked to make other arrangments.
  • She told Mayo she did "everything she could to miscarry" when she was pregnant with her.
Despite these harrowing experiences, Mayo still writes the following:
When Mother died, I missed her. The unrelenting responsibility for over twenty years and the contrant second-guessing of what the best care might be had been part of our relationship, not its totatlity. Those who seek to avoid caring for a loved one risk missing an experience that has the portential to heal, teach and satsify (p 181).
Chapter 10 is titled Dying with Dignity. I couldn't read all of it. It's filled with hope and faith and gestures toward eternity, but it's beyond my ability to process right now. When the time comes, this will be a helpful resource, but I'm going to keep it on the shelf until then.

The most poignant message of the book is to live well mentally, physically and spiritually. Mary Ann Mayo sums it up well by stating, "Alzheimer's is a crash course in learning to live in the moment" (p 24).

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