SECOND EDITION NOW AVAILABLE: February 2018
Draft cover of the second edition. Don’t be fooled on Amazon by the old edition, which is out of print but still shows up. That one is purple. The new one is the blue it was meant to be all along!
Now available for $16 on Amazon
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.
Now available for $16 on Amazon
NOTES ABOUT THE SECOND EDITION
First, my apologies. Due to circumstances beyond my control, Killing Mother became unavailable a few years ago. A new edition is now available, thanks to Carol’s gentle nudging, and Emily’s kind comments.
It’s been hard to go back and read through the book again, for the first time since before the Colonel died. I had barely made peace with my mother’s death when my father descended into dementia and that came with its own stresses. It’s been over a decade of loss, and I’m finally feeling like I’m getting my life back together. Losing parents, whether you’re close to them or not, can have huge ramifications for a person, depending on how sensitive you are, how resilient, your social and family support network or lack thereof, and many other factors.
But it’s been educational, and thought-provoking, and maybe even a little bit restorative. I wish for all caregivers that they cultivate self-compassion even if they find themselves short on compassion for others. Living with dying is hard. Even just living is hard sometimes, for everyone. Mindfulness meditation has helped me take care of myself.
ABOUT THE AUTHOR:
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.
NOTES ABOUT THE SECOND EDITION
First, my apologies. Due to circumstances beyond my control, Killing Mother became unavailable a few years ago. A new edition is now available, thanks to Carol’s gentle nudging, and Emily’s kind comments.
It’s been hard to go back and read through the book again, for the first time since before the Colonel died. I had barely made peace with my mother’s death when my father descended into dementia and that came with its own stresses. It’s been over a decade of loss, and I’m finally feeling like I’m getting my life back together. Losing parents, whether you’re close to them or not, can have huge ramifications for a person, depending on how sensitive you are, how resilient, your social and family support network or lack thereof, and many other factors.
But it’s been educational, and thought-provoking, and maybe even a little bit restorative. I wish for all caregivers that they cultivate self-compassion even if they find themselves short on compassion for others. Living with dying is hard. Even just living is hard sometimes, for everyone. Mindfulness meditation has helped me take care of myself.
14 Comments
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.
Thank you so much for writing this book. It’s been a lighting the way for me on my mother’s journey with PSP.
I’m so glad it’s helpful for you. And so sorry to hear that your mother has PSP. The book’s gone out of print, and I need to get it back onto Amazon. Your comment adds incentive for me to do it fast. Thank you.
YES, PLEASE!! We have an 11 person waiting list in our family/friends for my copy. I bought it for $50 on amazon from a 3rd party. Would love to buy copies from you. So many times I’d read a page, I immediately went on our text chain to say “Rita says…”. You are the lighthouse!! There are just no other stories shared in such depth about this disease. From your perspective it’s so soothing because its the voice and feelings we didn’t even realize as caretakers we felt. PLEASE MORE COPIES!!
OH! I will go to Kindle Direct today as soon as I walk the dogs, and start the process. I think I can make it available in paperback as well as for kindle. You have lit the fire under me that I needed. It’s been very hard to go back to this book after the first publisher let it slide out of print and was nasty about it. It was hard to write it, and I have just kept putting off returning to it because it’s still painful for me. But not as painful as what you’re going through now, and so many others. I cannot thank you enough for this encouragement!
They should link to it on http://www.PSP.org. I’m going to write them. THANK YOU!! I’m chanting your name like in the Rocky movies right now “Rita! Rita! Rita!”
Hee! OK, but wait to write to them until I’ve got it up and available. It’s going to take a few days. I’ve started, and I need to reformat the whole thing to get it up on Amazon. You will be the first to know when I’ve finished! Should be by the end of the week. Thank YOU!
rita hines clagett writer, photographer, artist harriett115@skybeam.com http://dukkaqueen.com 970.921.6689
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Hi Emily. Well, I’ve worked on it for two full days this week, and it is going to take some more time. But I’ve made progress in understanding both the programs I need to use to reformat the text, and to redesign the cover, and I’ve begun the layout process at Amazon Kindle Direct. So though it’s taking more time than I anticipated, I am moving toward having it available again in paperback on Amazon. Perhaps by the end of this coming week. There are legal prohibitions from the previous publisher against using the same cover and the same pdf file, so I have to reformat both of them, and I’m no computer whiz. But I’m getting there! Thank you again for the inspiration. I just wanted to let you know that it IS happening.
Rita- THANK YOU!! I can not wait to share this book. I will keep checking for updates. This book is such a gift.
Hi Emily,
Have you noticed any typos in the book? As I remember there were two that I noticed after it went to press. It would be really helpful if you have spotted any if you could let me know what they are and what page, etc., so I can zip right to them to correct. I know there are a couple of other changes that were made between the version I’m using and the pdf version that went to print, and am trying to avoid reading the whole thing with a fine toothed comb. In the interest of expediting it, I may just use the version I have as is and ask readers to let me know any errors, so it would be great if you see any I could correct before uploading it. Knuckling down to it again finally, after a crazy and distracting week with work and other adventures! So grateful for your encouragement!
rita hines clagett writer, photographer, artist harriett115@skybeam.com http://dukkaqueen.com 970.921.6689
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Hi Emily,
I hope you’re doing well. Thank you again for the inspiration. The book is uploaded to Amazon, and I await a proof copy which should arrive Thursday. So by some time next week, the book will be available again on Amazon for a reasonable price! It took me far longer than I naively anticipated to get it prepared, and necessitated learning or relearning several programs, but except for my impatience to make it available for you, that was all good exercise for me! I should give Amazon the go-ahead this weekend, and within a few days it will be on the site, and take a few more days to process any orders. You have been much on my mind during this process, and I send you and your family all my best wishes.
Rita
rita hines clagett writer, photographer, artist harriett115@skybeam.com http://dukkaqueen.com 970.921.6689
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At last! It’s now available on Amazon. They haven’t removed the old version yet, so don’t be fooled. This one has a blue cover, rather than purple. Thank you again for the nudge that tipped the balance of my procrastination. I hope you are coping well and taking care of yourself, and that your mother is making peace as she can with this grueling change in her circumstances. My best wishes to you all for ease and comfort.
Rita!! I was just checking back and saw these comments. I am so happy this book is back. THANK YOU!! I will buying and sending copies.