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ABOUT THE AUTHORS

NANCY E. ESSEX, originally from Texas, earned a B.S. in Elementary Education at Indiana University Kokomo where she graduated Summa Cum Laude as Vice President of her class. She has experience in counseling, leadership, team building and has taught Group Dynamics. Nancy has worked as an Elementary School Teacher, Purchasing Agent for a large transportation company and as a Travel Agent. During her husband’s Air Force career, she assisted with counseling spouses who had lost loved ones and with couples requesting marital counseling. She has worked over 35 years in community service, both as a volunteer and in leadership roles.

When Nancy’s mother developed dementia and it progressed to needing full time assistance, Nancy suddenly found herself responsible for her parent’s day to day care as well as seeing that their financial, legal, and medical needs were met. Through research and attendance at conferences, dementia support groups, plus legal guidance, she developed a comprehensive care plan for both parents. With God’s help and the loving support of family and friends, Nancy learned to “live in the moment” and to walk each path of the complex dementia, healthcare journey with her parents “one day at a time.” 

Currently a professional artist, Nancy loves spending time in NH and TX with her children and grandchildren.

MERRIOTT J. TERRY is an Arkansas native and a Baylor University graduate. She also worked on her Masters in Education at Stephen F. Austin University. After working extensively in high school and college education, she transferred her skills to non-profit work for 36 years.

Upon learning that her husband, Jack, was diagnosed with Alzheimer’s disease, she immediately threw herself into researching all she could about this terminal disease. Merriott took courses for Certificate of Completion of C.A.L.M. Management ALM-C&T, Assisted Living Manager Certificate & Training and serves as a consultant to Lin O’Neill Enterprises, dba ALM-CT. 

With the help of Alzheimer’s conferences, support groups, family, and friends, she navigated 11 years with Jack’s disease progression. Merriott believes God carried her each step of the way.

She lives in Denton, Texas, close to her son’s family which includes two granddaughters.

INTRODUCTION

Nancy E. Essex and Merriott J. Terry did not know one another when their respective journeys caring for loved ones with dementia began, and their journeys were a decade apart in time. Yet, when they met and became friends, they discovered that their journeys were very similar in their quests for knowledge about what to do and what questions to ask as they attempted to develop a coherent care plan for their loved ones. Though there are numerous very informative books and pamphlets available, somehow Nancy and Merriott found themselves overwhelmed and unsure of what questions to ask and with little understanding of what they needed to do in their new roles as caregivers and decision makers.

The WHAT DO I DO? roadmap which they created is based upon their real-life experiences. It is meant to be a guidebook and a workbook for you to use to find your way through the maze of optional pathways you can choose on your new journey. It will help you to develop and understand your new role as the decision maker for, and as the caregiver of, your dementia challenged loved one. Each chapter will bring you to red stoplights which will stop you to grab your attention, to a yellow caution light for assessing information and choices, then to a green light which tells you to “take action.”

This workbook is meant to be used over and over, so keep a pencil and pen handy for note taking, highlighting or for writing down reminders or tips you hear in group support workshops about dementia or Alzheimer’s care or from friends who have “walked the walk.”

Feel free to write all over this guidebook and to fill in blanks or lists provided in the book. 

The new paths introduced in the book will help you walk across a bridge into your new life as caregiver in an organized, informed fashion. It will ultimately lead you to the beginning of your new, completely different life path after your journey as caregiver ends.

You will be led by this guide to organize information and to make choices. It will help you!

Choices are often difficult, however, this book leads you to “stand back” from your situation emotionally and to make informed choices based on knowledge, not emotion.

This guidebook will help open conversations and investigations into a variety of new roadways related to caregiving your loved one. Information in the guidebook is not intended to override the advice and guidance of attorneys, social workers, or healthcare professionals.