Books

Progressive Supranuclear Palsy is a rare brain disease affecting only a few thousand people in the U.S. each year; yet, the trajectory of the illness compares with other terminal or degenerative diseases in its overwhelming challenges and everyday triumphs. Killing Mother, one family’s story of coping with this grim disease, narrates a universal struggle as it paints a loving portrait of an ordinary woman on her unique journey toward the only certain ending.

Being a caregiver for a parent can be full of contradiction, devastating and uplifting at the same time. Writing by turns with tenderness, frustration, and humor, the author chronicles in riveting detail the last year of her mother’s life with PSP. Observation and insight blend with revealing dialogue and helpful tips to weave a compelling memoir of profound personal breakthroughs in the face of imminent death. For patients and caregivers alike, this book is sure to encourage reflection, inspire forgiveness, and guide them on their own journeys to find support, clarity, and compassion during a deeply difficult transition.

PSP is a multi-system atrophy disease, with symptoms and characteristics that resemble some other more common degenerative diseases such as ALS, Alzheimer’s, and Parkinson’s. Each of these diseases has its own set of distressing symptoms, and each patient’s experience and timeline with each disease is unique. But the struggles that patients and caregivers face, and their coping strategies, can be surprisingly similar with any terminal disease. Killing Mother speaks to anyone setting out on the life-changing exploration of a degenerative disease.

Available at online booksellers including:

http://www.amazon.com/Killing-Mother-Progressive-Supranuclear-Palsy/dp/1605946443/ref=sr_1_4?ie=UTF8&qid=1304947763&sr=8-4

http://www.llumina.com/store/killingmother.htm

Rita H. Clagett is a writer, photographer, and naturalist who lives in a solar adobe home in western Colorado. She grew up in the suburbs of Washington, D.C., where she returned to help her mother on her final journey with Progressive Supranuclear Palsy. A published and performing poet and essayist, Rita brings a lifetime of observation and writing skills to bear on her chronicle of her family’s struggle to cope with this rare, terminal brain disease. Her writing has appeared in a variety of local and regional publications, including The High Country News, The Denver Post, and The Montrose Mirror.

A graduate of The College of William and Mary with a degree in Anthropology, Rita’s career includes jobs as a state and national park ranger, conservation educator, field ecologist, landscape designer, and now freelance writer, photographer and videographer. An ardent student of both human nature and wild Nature, her insightful writing explores connections and reflections between the two worlds.

 

2 Comments

2 thoughts on “Books

  1. Although Ali’s progression of disease differed from Dad’s somewhat, I found so many experiences I could relate to throughout Dad’s series of new normals until his death in August, 2015. I wish I’d had the Forum to commiserate with others going through the agonizing choices or experiences with feeding tubes, assistive options, guilt, exhaustion, speech problems, guilt, aspiration and choking, guilt, falls, drooling, did I say guilt? I couldn’t “fix” things this time.
    Whatever happened to the orsnge kitten? I hope this is resolved in the last twelve pages. I’m not quite finished. Maybe the experience is never quite finished. Thank you Rita.

    • Cindy, I’m moved to tears. Thank you for your comment, and for appreciating my book. You know you have my empathy for your experience with your dad. I brought the orange kitten home with me to Colorado! He appears in several blog posts, including this one: . He lived many happy years with me and whatever other creatures shared the house with us, and traveled across the country a few more times before he died last summer of complications from diabetes. After a few years of watching his health decline whenever I traveled back east to visit the Colonel and Aunt Rita, I realized that he had “abandonment issues,” and here I’d been abandoning him almost once a year for a month or more. At that point I started taking him with us, and he was a great little traveler, sleeping under the bed while I drove, and basking on the dashboard when I set up camp. Always returned home happy and healthy.

      I think the experience of loss is never quite finished; I still miss my mother madly sometimes. And while it never quite finishes, it is always followed by a fresh loss. I’m still figuring out how to be happy despite that. Maybe that’s the work of being human. May you find your way to healing. And, shed the guilt. My best to you, Cindy.

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