No. Yes.

My friend Julie Guy is brilliant.

“You will ask organizations for things and they’ll say no,” Julie said on March 23 in accepting her nomination to the YWCA’s NW Women’s Hall of Fame 2013 for her community building and activism. “But no is just the beginning of yes,” she promised.

I said no on Monday. The topic was life and death.

The doctor’s office called to ask for Mom to get a CT scan to try and figure out the cause of her recent lung problems. She’d been in the ER twice this month for this problem, and no one had mentioned the use of this scan as useful in figuring out the cause.

Mom’s decline in the past week is startling. She’s confused, detached, sleeping. She’s losing strength in her limbs. Her hands sometimes tremble. I listen from another room to her breathing over the baby monitor, reminding me of a benevolent Darth Vader. All she seems able to eat is ice cream or applesauce.

No, I said, to the request for the scan. She’s now too weak to get from home to anyplace with a laboratory and scanner on the premises. Here’s why no was hard: the results of the CT scan are needed by the doctors before determining any further or more appropriate treatment. We have Tylenol. A prescription cough medicine that makes her throw up. An inhaler. Every 6 hours.

No one can say if her condition is terminal. Every doctor has a way of saying, with varying degrees of frankness or kindness, that the life expectancy of a 93-year-old woman is probably not that much longer. Is aggressive intervention appropriate, or even desirable?

Without help in sight, I’m on the high drive, staring down into a shallow, empty pool. No way back, no safe way onward. My mission is not getting her more impossible tests or aggressive intervention. My mission is to find more comfort and, hopefully, a bit of grace to her final days. Doesn’t everybody want that, doctors and nurses too? My mission is to spare her the ugly, racking, endless cough and hard-fought breath. Where can I find help for that?

A magnificent RN becomes my lifeline. She calls back and listens when I need to talk through the options. I don’t want to hang up until I see the first step of this new, shortening path.

“What do we need in order to qualify for Hospice care?” I ask. I assume it takes an MD, and/or the results of the CT scan, and/or a terminal diagnosis of exact dimensions.

“I can refer you,” the magnificent RN enlightens me. “Do you want me to call them right now?”

Yes!

That was yesterday. Today Mom is in Hospice care. Oxygen arrives and is helping her breathe. There is a sparkle in her eye again when a dear friend visits, and the pastor. She eats another ice cream cone, licking the chocolate off her fingers.

  1. Thank you, Julie. Thank you, PeaceHealth people and Hospice people. And Jean and Pastor John. And Roberta, Nancy, Hope, and Migden.

I bring Mom daffodils still in bud. She smiles as they blossom.

Daffodils blooming

 

 

Trips

When I wake up this morning and go check on Mom, her bedroom light is on. After using the commode, she’s gotten back into bed to think about things.

“What’s up?” I ask. We’re all vigilant about her breathing these days to be sure she’s not getting fluid around her lung again.

“I was going to go to…” She starts out strong, but the destination disappears before she gets there. “Sit down,” she says to me, moving her legs under the bright flowered bedspread. I accept her invitation and sit on the edge of her bed. She wants to talk about this.

“Where were you going?” I ask.

“I was going with some people, I don’t know who, and we were going to, um, I’m not sure…”

“Um-hmm.” If I don’t interrupt, sometimes she finishes more of her story and I have a better chance of figuring out what she’s talking about.

“I’d been there once before,” she tells me, “so we were going there again.”

“Where is this?” I ask again.

“I don’t know.”

She’s trying to give an accurate report of what a memory feels like, or the look of a dream. Slippery things.

“Who was going with you?” Maybe she remembers faces, or voices.

“I’m not sure.”

“Maybe you’re mixing a dream and a memory and something from TV,” I suggest.

“No, we were going somewhere…” But the destination still eludes her.

She used to be on the go all the time. “Do you miss traveling?” I ask.

“Not at all,” she says immediately. Now she likes being warm and comfortable at home in familiar surroundings.

“So, let me get this straight,” I say. “You’re thinking about going on a trip to someplace you can’t remember with people you don’t know.”

Everything becomes clear. She beams. “That’s why I’m not going!” she declares. `

Photo: Jennifer & Peg at the start of the Chilkoot Trail in Alaska in 1975. The 3-day hike was Peg’s idea. It was rainy & muddy & gorgeous.

Home

Caregiving, like writing, requires constant leaps of faith.

I leave Mom in good hands that aren’t mine, a caregiver she loves. I say goodbye, get in the car, and drive to a writing retreat. When I arrive, the forest air is cool and fresh. The sun shines. I am out in the real world, in my world again. I breathe deeply, but I don’t turn off my cell phone.

I sit by the fire. I laugh. I drink too much wine. That night I sleep 10 hours. I write all the rest of the time. Too soon, it’s time to go home again.

Daffodil1I walk in smiling. I bring Mom an armful of daffodils that haven’t bloomed. She likes to watch them blossom. She’s done fine. I’m not sure she remembers I was gone.

These familiar walls have a few rougher edges, though. I hear the clocks ticking. I want to be still and breathe. And write. But it’s time to cook supper. Make sure she takes her pills. Clean the kitchen.

I turn on swing music. Ella Fitzgerald sings Melancholy Baby. Mom’s lips move and I lean closer to hear her sing-along. She remembers all the words.

Every cloud must have a silver lining.

Wait until the sun shines through.

Smile, my honey dear, while I kiss away each tear

Or else I will be melancholy too.

When it’s bedtime, Mom says, “Well, I guess it’s time for me to go home.”

I used to ask, “Where is home? What home are you thinking of?” but she had no answer. When I ask if she means heaven, she only laughs.

“This is your home,” I say. “You live here with me. You have your own room here and all your clothes.”

“I do? Oh, that’s good.” She’ll forget the worry until it returns tomorrow, or in a few minutes.

“Look.” I point to the vase on the table. “The daffodils are starting to bloom.”

Daffodils2She beams. “They just felt like it.”

I feel a rush of gratitude for this home I’ve made for us together, for the ease I can bring to Mom’s final years. I’m grateful for the challenges and the drama, the sweet times and the sad. I’m grateful for the encouragement I’ve had from other writers to write about my real life.

That’s when I’m home – when I’m writing.

Letters in the attic

Thank heavens no one in the Lybarger family threw anything away. This letter was written in 1864 during the U.S. Civil War to my great-grandfather Lt. Edwin Lewis Lybarger, 43rd regiment, Company K, Ohio Volunteer Infantry, by the woman who would become his wife. More than 125 years after it was written, my Aunt Nancy Lybarger Rhoades found it and 167 other letters written to Edwin during the war, stored and forgotten in a cherry wood trunk in her Ohio attic.

Nancy Lybarger Rhoades on her 91st birthday in 2006.

Nancy Lybarger Rhoades in 2006, on her 91st birthday.

 

Nancy Lybarger Rhoades spent five years transcribing these letters. On her 91st birthday, she received a letter from Ohio University Press,  accepting her manuscript for publication with the addition of social historian Lucy E. Bailey’s commentary as co-editor.

Swallow Press, Ohio University, 2009

WANTED–CORRESPONDENCE: Women’s Letters to a Union Soldier (Swallow Press, 2009)

Aunt Nancy died in 2007, but her last years were much happier knowing that the Lybarger letters would be published in 2009.

Aunt Nancy was always the protector of all things Lybarger, aided by her skills as a legal and reference librarian in Ohio. The letters, though, were all written TO Edwin and we had none of his replies. As soon as I’d read the one-way correspondence, my imagination yearned to fill in the gaps. After two years of patient persistence, I finally gained Aunt Nancy’s permission to use the letters as the basis for a novel. She made a remarkable leap of faith in trusting me–I’d never written a novel before. I began to research and write.

Early on this journey, one day, I phoned her to ask how long she thought it would take a horse to travel from a certain town to another certain town in Knox County, Ohio, since she knew the terrain and distances. “That depends,” she said, “on whether the horse is walking, trotting, or galloping.”

Some years later, I completed my historical novel, The Color of Prayer. 

Nancy Lybarger Rhoades and niece, Jennifer WIlke

Nancy Lybarger Rhoades and Jennifer Wilke, her niece, at Christmas time in Columbus, Ohio in 2004.