About the Book:

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.

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 and The Denver Post, and online at www.virtualteahouse.com.

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.

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Excerpt:

Friday, June 25

All week she’s waked at night and tried to do math. She called one morning and told me, urgently, “The formula is three.”

“Okay,” I said. Later, when I got there, I found on her bed an envelope on which she showed me a formula: If 80=a+b then what? There were all kinds of scribbled numbers with plus and minus and equal signs, and question marks.

Now, Mom has never been a math person. She understands nothing about numbers—or technology. She asks me every time I give her a long distance phone number, “Do I dial a 1 before that?” How many years has she been making long distance phone calls by dialing a 1 first? Every time, she asks me. Every time, until I took over dialing for her. I was stunned to find her doing nonsensical equations in the middle of the night.

Are these numbers, questions, symbols, the ramblings of the brain disease, or do they come from some deeper wisdom? Is this answer in a book somewhere? Is it in all the books? What is she trying to do?

We spend a week trying to figure out what this is about. Every day she shows me new numbers, tells me about new numerical contortions she has attempted.

“If I subtract it I get it back,” she says, “but I can’t do it. Say it says 3:04. I subtract 3:04, then I get it back, but I can’t do it.”

One evening I begin to discover the meaning of the calculations—after dinner she says, “If it says 20 then I subtract 20.”

“If what says 20?” I ask. I try to understand, to think, What is the referent here? But I can not come up with any connection to reality, so I say, “You have a brain disease and there aren’t any numbers and there’s nothing you have to do.”

“I’ll show you, I’ll have to show you what I mean.”

“OK, you show me, and you have to trust me if I say this is your brain disease talking, this isn’t real, OK?”

“OK.”

We get her in to the bedroom, and she sits on the edge of the bed, and points to my father’s digital clock on his bureau, which she can see from her bed, its big red numerals looming across the room.

“It says 10:03… and then it says 10:04, and then 10:05, and then I have to do something, I have to do 10:04, then 10:03—”

“No,” I interrupt, and wrap my arms around her thin shoulders, rubbing the soft silk of her new pajamas and her frail arms beneath. “That is your brain disease talking. There is nothing you have to do. You don’t have to think about numbers.”

“That’s such a relief,” she says, her voice cracking.

She has been watching the two-inch-tall digits defining the minutes as they pass, and that has made her afraid to go to bed, afraid she will not sleep. I tell the Colonel that we have to unplug the clock for the night and see if that helps.

“Why not just turn it around?” he suggests with evident relief. I am touched by the simplicity of the solution, and I turn the clock around. The numbers will not trouble her this night.

Yet she continues her calculations.

Finally, today after breakfast she asked me, “Do you understand why I need to do it?”

“Do what?”

She furrows her brow. “What I do.”

“Subtract time?” I suggest—her face lights up.

“Yes!”

I sadly shake my head. She sags a little. “To get it back,” she explains.

“To get back time?”

“Yes!” again, smiling.

“No,” I say.

“You don’t understand why I want it back?”

“Time?” I ask, as it begins to dawn on me. I realize that at night she hopes to lengthen her numbered days. “Oh, well sure—you want time back. Of course! Anyone would. You want more time?”

“I want more time!”

“But we can’t do that,” I explain, “it’s not the way the world works. Yeah, time is a man-made construct and all, but we can’t make it go backwards in the real world.”

She wants more time. She wants more time. I finally understand, after struggling with the mixed-up math for a week, as I sit here this afternoon and tumble it over, that she wants more time.

The feeding tube—will it buy her time? She has enough time. What will she choose to do with it?

I call to tell her I understand. “You want more time,” I say. “You have enough time. You have enough time to do all that you need to do. It’s okay. You have enough time.”

She smiled, I could hear her smile over the phone, and she said, “I’m not going to do it tonight.”

“You’re not going to do it tonight? Why not?”

“I don’t need to.”

I heave a huge sigh, and tell her that I love her, and we hang up the telephones. It has taken me too long to understand. Outside, three hummingbirds at once have settled on the balcony feeder. I have reached a little epiphany as the little birds have reached a resting place. I need a little more time, too.