Puzzle Pieces: A New View Inside the Life of Dementia from a Nurse and Caregiver Perspective

By Lisa W. Hope

You probably know someone with Dementia or have heard of someone with Dementia. This book is an invitation into the life of a caregiver living daily with a disease she thought she knew all about. Lisa gives the reader a taste of what it's like to live with someone with Dementia, and doesn't sugar coat it.

• Language: English
• Publisher: Balboa Press
• Release date: Aug 20, 2021
• ISBN: 9781982272999

Lisa W. Hope

Lisa brings her journey as the spouse of someone with Dementia through the lens of a former RN case manager for a hospice, as an ordained minister, and certified transformational life coach. She and her husband have been on a personal journey with Dementia that goes beyond the training for medical personnel in the field of Dementia.

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Copyright © 2021 Lisa W. Hope.

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Interior Image Credit: Sandra Hopper

Scripture quotations marked NRSV are taken from the New Revised

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ISBN: 978-1-9822-7297-5 (sc)

ISBN: 978-1-9822-7298-2 (hc)

ISBN: 978-1-9822-7299-9 (e)

Library of Congress Control Number: 2021916318

Balboa Press rev. date:   08/18/2021

February 5, 2021

I asked Will if he would be willing to write something about our story with dementia at the beginning of this book. At the time he wrote it, Will had been showing signs of dementia for about thirteen years. This is the piece he wrote (with a few spelling changes):

"The story that we write is a powerful one, recording the ways in which a powerful head can become a not-so-powerful burden, and how that affects the course of our journey. As we combat it, we are strengthened and supported by each other.

This is the only way to know the best of yourself in the system. —W.

Image35297.JPG

This is a picture of my honey with one of his favorite occupations. He would sometimes sit for hours working on a puzzle. I dedicate this book to him.

CONTENTS

Introduction

Chapter 1     In the Beginning

Chapter 2     Puzzle Pieces

Chapter 3     Pieces Must Be Missing

Chapter 4     Puzzle as Distraction

Chapter 5     About Me

Chapter 6     I’m Sick of the Puzzle

Chapter 7     An Odd Look to the Puzzle

Chapter 8     A Day in Our Life

Chapter 9     Coping, Not Coping

Chapter 10   Changes

Chapter 11   Tools for Puzzle Working

INTRODUCTION

HAVE YOU EXPERIENCED SOMEONE CLOSE to you having dementia? Have you been a caregiver or a medical person caring for people with dementia? Are there people close to you who have dementia or who are caring for someone with dementia? Do you find yourself curious about the life of someone who lives with someone with dementia?

This memoir shares the journey I have experienced with my husband.

I have removed the actual names of the people and places involved in our story. It is my intention to write about the journey without causing personal injury to anyone, including my spouse, the individuals who have been supportive to us, and those who have contributed as teachers. I admit, I didn’t realize some people were teachers for me at the time. I am grateful to each one for participating in our journey.

As a hospice nurse, I cared for many people with dementia. The experiences I had surrounded caring for them as they neared the end of their lives. At the time, I thought I was well versed with what occurred in the families of these patients. So when my husband started showing signs of dementia, I thought I would have a head start on people who were not professional caregivers or medical personnel. I soon found out what I didn’t know.

My experience with my husband’s journey with dementia started well before the coronavirus pandemic, although the pandemic helped to accelerate my husband’s condition. The pandemic was a huge change to our civilization as we knew it, and it created a lot of fear. Any kind of change is really challenging to people with dementia because they need sameness and routine in their lives. The coronavirus intensified my spouse’s confusion and fear. He admitted to feeling unsafe.

Dementia is a disease process of uncertainty and living in the mystery. One doesn’t know how long it will last or exactly what it will look like.

I began writing this book in the middle of the pandemic in 2020, and you will see references to it in several places throughout. The experiences and tools I have learned are applicable to any time and any place, not just during a pandemic.

No two experiences with dementia are alike. I may share some things Will and I have experienced that you have not, and there are probably things you have experienced that we have not. You may have tools that work for you that I haven’t heard about or that haven’t worked in our case, yet.

When I was working with hospice patients, I had a tool called about me, that I could use to find information about my patients. It was helpful in being able to see my patients as people and not just as a diagnosis. Even if they were no longer speaking, I could use the information to talk with them.

My mom had dementia, and I visited her regularly until the coronavirus happened. COVID-19 restrictions made it challenging. This was difficult for me because my mom and I had always had a close relationship.

My dad had dementia brought on by not getting enough oxygen when he had pneumonia. My bonus-mom, Sharon, shared stories about things that occurred in the time after the pneumonia and before my dad passed away. Up until she shared those stories, I had no idea what Sharron went through in those two years.

Writing our story is healing for me, and I hope it can be a place of hope and healing for you, too. This is an about me about our story. These things are what I have experienced with my husband.

CHAPTER 1

In the Beginning

To boldly go where no man has gone before.

—Star Trek: The Original Series

A NEW CHAPTER IN MY life started when I met Will Hope. I had no idea how this meeting would contribute to changing my life. One doesn’t usually get a clap of thunder or a bolt of lightning to announce a new beginning.

Six months before I met Will, I divorced my husband of twenty-four years, and I left the church association I had attended for more than twenty-six years. I started attending personal-growth workshops, twelve-step meetings, and therapy to allow myself to heal. I didn’t know a lot of change was going to be part of it.

I had just returned from a seven-day personal growth workshop, when a friend, Anita, asked me to support her in doing a mini-workshop. Will had been invited to attend Anita’s workshop, along with a roomful of people I had never met.

We each took a personality quiz, and Anita divided everyone into four groups, depending on his or her personality type. She asked me to assist in the marketing group. Members’ traits included being loud beer drinkers. Will was a part of this group. We did a lot of laughing, and we were probably the most boisterous of the four groups. However, beer wasn’t involved. I kept saying, I don’t drink beer. I don’t belong here, but everyone in the