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Posted: January 06, 2006

Spousal Caregiving

A Grandchild's View of Caregiving

Bill Andrew

Most of us have grandchildren who might be intimidated by the disease or illness that afflicts our spouse -- their grandmother or grandfather. How do we go about preparing those grandchildren for the "journey" that you and your spouse are taking? Often, the grandchild is either not informed or does not understand what is taking place -- especially the younger children.
Carol and I have only one grandchild. Stephen will be 15 in April and is quite mature for his age. Both of his grandmothers have a dementia-related illness, and he seems to grasp what is happening. This young man and his parents are survivors of Hurricane Katrina. They lived in a pop-up camper for 11 weeks and now reside in a FEMA trailer while my son goes through the process of redoing the inside of their house over the next year. So he has a pretty good grasp on the reality of life.
But what about those younger grandchildren who may not understand what is taking place? Once again, I went to the classic book Chicken Soup for the Caregiver's Soul for another bowl of "caregiver's chicken soup." LeAnn Thieman, L.P.N., and her co-authors have shared some of the spousal caregiver stories with us in the past and will do so in the future. While this is not specifically a spousal story, it does make the point of addressing the needs of grandchildren.
The "good medicine" that is inherent in chicken soup, as documented in various clinical studies, helps caregivers to deal with the realities of their spousal caregiving activities. This story, shared by LeAnn, may well lift your spirits and those of your spouse. It may also nourish your souls and give you some ideas about how to help your grandchildren deal with the realities of the disease or illness of their grandma or grandpa.
This eighth story that LeAnn would like to share with us can be found on page 22 of Chicken Soup for the Caregiver's Soul. LeAnn offers this personal thought-provoking insight into this story --
"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.”


Caregiver's Handbook

"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.

I felt compelled to protect her. Would she store up nightmare images that frightened away memories of his healthy years?

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.

Beverly Haley


Caregiver's Handbook is reprinted by permission of Chicken Soup for the Caregiver's Soul. To learn more about this book and caregiving issues, contact the co-author, LeAnn Thieman, professional speaker, author, and nurse at her website.)

This is a true story by the author. I am sure that you have experienced similar situations with your spouse. Perhaps you would like to share them with our readers. If so, e-mail me at


"Children begin by loving their parents;
as they grow older, they judge them;
sometimes they forgive them."

Oscar Wilde (1854-1900)

Bill Andrew identifies himself as a former “nutritionally-empowered Alzheimer’s caregiver” who attributes the slow-down in progression of Alzheimer’s disease in his wife, Carol – and the growth of his own personal emotional, mental, physical, and spiritual capability and strength to provide quality 24/7 care for her in their own home – to the targeted nutritional supplements they both took on a daily basis. Carol went to her Heavenly reward on June 9, 2008 – Bill continues on to advocate for family caregivers. Contact Bill with your caregiving questions and comments via email at

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© 2006 Pederson Publishing, Inc. All Rights Reserved.
Commercial use, redistribution or other forms of reuse of this information is strictly prohibited without the prior written permission of Pederson Publishing.

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