Heidi A. DeBoer - 2BeCourageous (Living with a Stranger): One familys open and raw account living in a world of early onset Alzheimers and Frontotemporal Dementia

2019 Heidi A. DeBoer

2BeCourageous

(Living with a Stranger)

One familys open and raw account

living in a world of early-onset Alzheimers

and Frontotemporal Dementia.

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Scripture quotations marked ESV are from the ESV Bible (The Holy Bible, English Standard Version). Copyright 2001 by Crossway, a publishing ministry of Good News Publishers. Used by permission. All rights reserved.

Scripture quotations marked KJV are from the King James Version. Public domain.

Scripture quotations marked NASB are from New American Standard Bible. Copyright 1960, 1962, 1963, 1968, 1971, 1972, 1973, 1975, 1977, 1995 by The Lockman Foundation. Used by permission. (www.Lockman.org)

Scripture quotations marked NIV are from the Holy Bible, New International Version, NIV. Copyright 1973, 1978, 1984, 2011 by Biblica, Inc. Used by permission of Zondervan. All rights reserved worldwide. www.Zondervan.com. The NIV and New International Version are trademarks registered in the United States Patent and Trademark Office by Biblica, Inc.

Scripture quotations marked NKJV are from the New King James Version. 1982 by Thomas Nelson. Used by permission. All rights reserved.

Scripture quotations marked NLT are from the Holy Bible, New Living Translation. 1996, 2004, 2007, 2013, 2015 by Tyndale House Foundation. Used by permission of Tyndale House Publishers, Inc., Carol Stream, Illinois 60188. All rights reserved.

Library of Congress Cataloging-in-Publication Data

Library of Congress Control Number:2019906813

ISBN 978-1-400326662 (Paperback)

ISBN 978-1-400326679 (eBook)

Please note that footnotes in this ebook may contain hyperlinks to external websites as part of bibliographic citations. These hyperlinks have not been activated by the publisher, who cannot verify the accuracy of these links beyond the date of publication.

This book is dedicated to my husband, Chet, the bravest person I have ever known, taking on his illness greatheartedly through the highs and the lows.

To my son, Jake, who stood by his dad and myself during the six-year struggle we endured, opting to live at home while in college so he could help and be with his dad.

To my daughter, Chesanne, for coming over several times a week to spend the day. She came and brought my grandchildren to give us some normalcy and distraction, to give and show her support, and to get me out of the house occasionally.

To my mom, Marge (93), for being on the other end of the phone whenever I needed to call her to vent, always offering a happy voice of encouragement and love. She passed on March 5th, 2018. She is greatly missed.

To my Facebook family and prayer warriors who stood by us with encouraging words and much prayer.

This book is based on one familys true story of their journey, caring for their loved one with dementia. When you have ten different people with dementia, you have ten different stories. This is ours.

Definition of Courageous (Websters Dictionary): Very brave: having or showing courage.

Courageous Synonyms: bold, brave, dauntless, fearless, gallant, greathearted, gutsy, heroic, valiant.

I , Heidi, take you, Chet, for better and for worse, in sickness and health, for richer and poorer, through trials and tribulations.

I, Chet, take you, Heidi and they lived happily ever after. Thats how it is supposed to end. This book is just a small part of our many stories.

2BeCourageous has many meanings to different people. To be diagnosed with any type of dementia, or becoming a caregiver to a loved one with dementia twenty-four-seven is 2BeCourageous. Though most caregivers and patients go unrecognized for their gallant efforts to live with or care for a person with dementia, these people are true heroes and should not be forgotten and lost in the madness that surrounds them. This is now their new normal.

2BeCourageous first started out as a blog on WordPress, and then I moved it to a blog on Facebook. Much of this book is formatted from posts written by me from my blog/journal and my personal page, from our day-to-day lives dealing with dementia. I will share what I have learned and my many mistakes. Im not an expert or a doctor, Im just a real-life person who lived it. However, after six years living in the Alzheimers World day and night, I wish to share what I have learned. It will be brutally raw, no holding back. If nothing else, Im hoping youll be able to relate to our story and not feel so alone in your own journey. We are a Christian family that can go through a high range of emotions and, even on the best of days, we can fall short and end up not following the rules. Yes, there are rules to follow. Christ has rules for daily life, and, when it comes to people with dementia, there are rules we try to live by, for instance:

Do not argue with the person with dementia.

Live in their world; they no longer live in our world.

Divert their attention elsewhere when they insist on something we know is wrong.

Do not argue with the person with dementia.

Dont ask if they remember this or that.

If they forget they asked something, and ask over and over, go with it. Just tell them the answer or divert their attention.

Did I say dont argue with the person with dementia? Ha! This was the hardest rule for me. You will see that I wasnt good at it.

I hope you can relate and maybe learn from our experiences and mistakes. I talk a lot about God because He is front and center in our lives. I am a Christian, and I mess up. No one is perfect, but if you keep God as your focus, you will make it through your journeys. The Bible verses that Ive included gave me encouragement when I thought I couldnt go on. Some taught me lessons about myself and my family.

I get very personal and talk about things that most people hide and keep quiet about; sugarcoating dementia only hides the truths of the disease. Follow us on our journey. We hope you will take away from it what benefits you the most.

Figure 1 Chet and Heidi DeBoer

I will throw away my red umbrella,

and, with you, go barefoot in this rain.

Well dance our way through all the new storms