CAREGIVER STORIES: CAREGIVER'S HANDBOOK
Often, we try to protect children from the suffering, the pain, the helpless confusion of caregiving. Yet often, they are the best ones to show us the truth in it all. Sometimes the innocence of childhood brings a kind of caregiving no one else can offer.
LeAnn Thieman, coauthor Chicken Soup for the Caregiver’s Soul
Pretty much all the honest truth telling there is in the world today is done by children.
Oliver Wendell Holmes
I heard the sounds of car doors opening and shutting and nine-year-old Ellen's eager hop-skippity. In the flick of an eyelash she stood at the door, arms stretched wide. “Grandma, I've been missing you!" The radiance of that smile made me forget the punishing weight of relentless July heat.
Her arms locked around my waist, her head pressed against my chest.
I looked down. "New shoes?"
She nodded. "Fast ones," she said, then announced, "I came to give Grandpa a big hug."
Red flags whipped from my caregiver's antennae. For the be-zillionth time in the past three years, my frustration level shot off the chart. I needed a caregiving how-to book where I could run my finger down the table of contents, point to a key word, flip to that page, and read the answer. Should I let her see him?
I drew Ellen closer and gazed over her to meet my son's eyes. She'd seen her grandpa two days ago, but….
"He's much worse," I mouthed. "Seeing him might frighten her.”
My son’s gaze held steady. "She'll be all right, Mom. She needs to hug him."
And I felt just as compelled to protect my husband. Yesterday's words from our hospice nurse still echoed sharply inside me. "He needs to relax and let go," she'd advised. "Distractions now will disrupt the dying process."
How could I take responsibility for even a single minute's extra suffering? Yet how could I deny either of them a last hug? I teetered on the edge of denial and consent.
Where was that caregiver's handbook?
My son's arm circled my shoulders. "She'll be okay, Mom, I know."
My emotional teetering steadied. I nodded at Ellen, whose face glowed with expectation. "He's sleeping," I said, "but he'll wake when he knows you're there."
Tip-toeing into the bedroom, she gazed at the still, slight form beneath the covers. In seconds she was on the bed beside him, arms gentle around his neck. He turned to her with a sun-and-stars smile that matched hers. "Hello, Ellen. How's my buddy?"
"I love you, Papa," she said.
"I love you, too."
She snuggled beside him, stroking his face. "I have new sneakers."
"They'll help you run faster," he said. His eyelids grew heavy.
My son signaled Ellen and with a farewell pat on Grandpa's shoulder, she climbed down.
"Did I help him feel better, Grandma?"
"Yes, you did. Much better." I watched as he rolled again to the place where his body rested more at ease.
Leaving him, the three of us moved to the cool shade of the deck for ice cream bars.
"I wish he could get well," Ellen said. "But I'm glad I made him smile."
"Yes, and he gave you the best smile ever."
Last week she'd asked when he would get better. I'd tried to explain that he couldn't get well, that his body had used up all its strength. The cancer, I told her, was taking his body, but it could never take away who he really is—his sparkling smile, the light in his eyes, his love for her.
Looking back on the countless teams of caregivers—the teams shifting and changing with each new twist and turn, every team giving their all to his care—I saw that Ellen herself had been a constant. For the entire three years of his illness, her steel thread of caregiving never wavered. She brought a kind of caregiving no one else could offer, partly out of the innocence of childhood. There was more, though. She and her grandfather had always shared a special bond, but his illness had deepened their connection.
Since infancy Ellen herself had been in and out of clinics, emergency rooms, and hospitals but the summer her Grandpa underwent major surgery, she seemed to set aside her own fear of hospitals. During the month of his stay, she often rode the elevator to his fourth floor room and blended into the sterile atmosphere with the nurses and doctors bustling in and out, the beeping monitors, the medicinal smells, the tubes and needles attached to his body. With a clinical interest, she inspected each object, asking how it would help Grandpa get better, the way she'd gotten better.
He explained, "I'm trying to be brave, just like you, Ellen."
How do you tell a child about dying? How do you tell her that soon Grandpa won't be with us?
How I yearned for that caregiver's book.
As she ate her ice cream bar she said, "I'll miss him, Grandma. It makes me sad." After a moment her brown eyes grew round. "Will he be an angel soon?"
"Yes, he'll be an angel watching over us even when we can't see him. And he'll stay in our hearts always."
My son knew his little girl. She had needed to see her Grandpa one more time.
I thought about how as a teenager I'd felt hurt and left out when my parents kept me from seeing my dying grandmother. Now I'd nearly repeated history, trying to protect my own granddaughter.
Did her visit disrupt his dying process? Maybe. But her farewell touch gave a loving grandfather a last moment's earthly treasure. He, in turn, gave the gift of that moment back to her, to our son, and to me.
Ellen didn't need a caregiver's handbook. She opened her heart and followed it.
*Excerpt taken from “Chicken Soup for the Caregiver’s Soul. Reprinted with permission.