How Hard Could It Be?: A Caregiver’S Story

By Margaret Sheehan

Its an issue facing many grown children: providing care for their aging parents. Its not always as easy as it seems. In How Hard Could It Be?, author Margaret Sheehan provides a firsthand look at the world of caregiving as she discusses the details of serving in that role for her parents.

Insightful, and with a humorous slant, Sheehan shares the lessons and surprises she encountered in her cherished adventure of caregiver. Surprises included changes in her marriage, her relationships with siblings, her employment, as well as in her relationship with her parents. How Hard Could It Be? tells not only about the everyday challenges she faced but also about the difficulties of dealing with Americas health care and home care systems and their trappings.

With tips for the bold and comfort for the timid, Sheehan offers information for others to help them through this process, to think through their decisions, become better prepared, and feel affirmed whether or not they decide to undertake a caregiving role. A catalyst for beginning important discussions about aging and caregiving, How Hard Could It Be? addresses the fears and the worries and the joys of caring for loved ones.

• Language: English
• Publisher: LifeRich Publishing
• Release date: Dec 5, 2014
• ISBN: 9781489703484

Margaret Sheehan

With a master’s in theology from Loyola University, Margaret Sheehan has worked in church settings for seven years. She served as director of religious education and parish teacher for a small church in Florida.

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Copyright © 2014 Margaret Sheehan.

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ISBN: 978-1-4897-0347-7 (sc)

ISBN: 978-1-4897-0349-1 (hc)

ISBN: 978-1-4897-0348-4 (e)

Library of Congress Control Number: 2014920934

LifeRich Publishing rev. date: 12/04/2014

Contents

Introduction

Chapter 1   Expect the Unexpected

Chapter 2   Relationships May Be the First to Go

Chapter 3   The Slow Slide

Chapter 4   Out of Control

Chapter 5   Assisted Living

Chapter 6   The Turning Point

Chapter 7   Dad’s Final Year

Chapter 8   When Dad Died

Chapter 9   Mom’s Final Year

Chapter 10 When Mom Died

Quick Review: 23 Tips for Caregivers

Pep Talk: Whether You Do or You Don’t

Conclusion

Further Resources

To my parents, Timothy D. and Helen C. Sheehan,

who were married for sixty-five years.

Timothy D. Sheehan, August 23, 1915, to August 31, 2008

Helen C. Sheehan, August 22, 1914, to December 15, 2009

With special thanks to

Ron Duquette

for his encouragement to write this book.

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Introduction

Adults don’t expect parents to be superhuman. Then why do we feel off balance when they need extra help sometimes—like now? Okay, not now. Let’s hold onto a healthy denial a bit longer. This is not a book about now. This is a book about my past and some anticipated day. You know it’s coming, but it’s not here yet. Okay? Feel better?

This book tells the story of my gradually becoming a primary caregiver for my aging parents. For seventeen years, I lived close to them. After my divorce, I orbited them like a planet stabilized by their gravity. Then in the next four years, they moved in with me. We’d had plenty of time to take care of each other and get used to our transitions before I became their full-time primary caregiver.

I’m writing about this because I’d like to help you prepare yourself if you’re thinking about becoming a family caregiver. I want to share with you the things that took me by surprise. Becoming a caregiver deeply affects relationships far beyond the one with the person who needs your care.

For example, my becoming a temporary caregiver for my parents three years before my divorce began the dissolution of my marriage. That’s not to say the marriage wouldn’t have ended anyway, nor does it say that anyone else’s marriage won’t survive caregiving. But I had not intended caregiving to end my marriage. If I had anticipated what happened, I might have dealt with events differently, or at least been better prepared.

I’m still astounded at how much becoming a caregiver affected my relationships with my five siblings. As the youngest, I had to learn assertiveness and self-confidence in a hurry! And it affected my ability to nurture a career, as well as to job hunt after my final role as full-time caregiver had ended and I had been out of the workforce for a few years.

Another surprise was the sheer ludicrousness of situations in which I found myself. You cannot, in our culture—I repeat: you cannot—really prepare yourself for misplaced, out-of-control shit, the confusion of aides in the home who do not usually deal with catheters, the toll of lost sleep, the low priority given to caregiving at most work places, or the medical maze of our health-care system at this point in time.

Of course, this book has limits. I cannot say, for example, how difficult it might be for a man to take care of his mother. My parents’ disabilities were gradual, never horrific. Their mental states remained blessedly sublime. But my story can assure you that help exists for every plateau you may reach. You need not struggle alone, and normal pitfalls can be overcome.

If you’re thinking about becoming a primary caregiver, I’d like to cheer you. My experience with my parents will always be precious to me.

If you’re feeling you cannot consider becoming a primary caregiver, I’d like to cheer you. Realistically knowing your limits can spare you and others a great deal of potential harm.

Either way, I offer tips and further resources at the end of my story. I hope this book can help you start important conversations and determine what you can or cannot do—and feel affirmed in whatever you decide.

CHAPTER 1

Expect the Unexpected

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As I led Dad toward the shower potty chair, one of my slippers lost traction. Dad and I both slid gently down to the floor. I lay flat on my back, clothed in my robe and pajamas, with my head and shoulders inside the walk-in shower. Dad, in his T-shirt and Depends, sat—actually squatted—on my hipbones, facing and straddling me. I knew we were in trouble, but it felt so ludicrous that all I could say was, Oh! Dad looked down. He always looked down. His head was perpetually bent forward. When my face suddenly loomed into his view, he arched his eyebrows in wide-eyed surprise and exclaimed, Well, hello dere! We both laughed. He had mild dementia, but he remained blessedly himself.

I bent my knees to give support to his back. Dad settled comfortably on my hips, waiting to see what would happen next. He wore big, built-up shoes that had enabled him to walk and stand since childhood polio had shrunken his left leg. But even wearing his supportive shoes, he wasn’t capable of lifting himself up and off me there in the shower doorway.

We looked at each other, and I said emphatically, Don’t go to the bathroom now! We both laughed again, too heartily, giddy, bewildered. I could feel my foot still slipping along the floor, loosing my thigh from his back, so I kicked off my slippers for better traction.

I’m going to call Mom, I finally said, to prepare Dad for loud yelling. If I can get her to bring me my cell phone, I can call Cecil to come and help get us out of this. Dad smiled, nodded, and looked around. He was amused, not at all upset. He knew Cecil was strong enough to help and a good enough friend to put up with surprises. I could have called the fire department for strong, young men to come and lift Dad off me. But that would have required the phone as well.

After a few good tries, I stopped yelling for Mom. She wasn’t hearing me. We’d left her in the TV room at the other end of the condo. We’d been telling her for a long time her hearing was getting worse, but she would have none of that. A friend once asked me, Margie, do you realize you say everything twice? I had developed the habit of repeating myself for parents who didn’t hear well.

I had to think. I didn’t want to keep yelling until a neighbor might become concerned enough to find us. At that moment, I didn’t know my neighbors in this condo well enough to want them to come to my rescue.

Dad sat unconcerned. He trusted me. Okay, I said, here’s plan B. I’m going to grab onto the safety bars here, and that one up there behind me. I’ll pull up with my arms and lift with my legs to make myself into a table. Dad was at least thirty pounds heavier than I was, but I knew he would help with his legs when my adrenaline got him high enough. Silently, I hoped the bars wouldn’t pull right out of the wall. When you’re level enough, just slide off me and onto the potty chair. Okay?

Okay, Dad said, eyeing the chair as his target. He understood his mission.

It took three attempts for me to get him high enough to accomplish the transfer, but we finally made it.

Dad never did have his BM in the shower potty chair that day. That had been my brilliant idea until trying it showed obvious flaws. I’d thought how clever it would be to just clean him with the moveable shower nozzle after he was done. It probably would have drenched us both. Dad tolerated me as his primary caregiver, but we never tried that plan again. We just used the toilet. He stood. I wiped. Simple is better.

Later, Mom said, I was in the bathroom at the other end of the house, so I didn’t hear you. We lived on the second floor of a four-story condominium, not in a house. As our lives had changed, we slowed the relentless differences by speaking as if much were the same. The refrigerator was still the ice box because that made our home more familiar. My parents’ agreement to move in with me had required a huge adjustment for all of us. Skilled adapters, we faced what we needed to and fudged the rest. After that day’s experience, I started carrying