Creating Moments of Joy Along the Alzheimer's Journey , livre ebook

Creating Moments of JOY
Creating Moments of JOY
Along the Alzheimer’s Journey
Jolene Brackey
Fifth Edition
Purdue University Press, West Lafayette, Indiana
Copyright 2017 by Jolene A. Brackey. All rights reserved.
Printed in the United States of America.
I would like to gratefully acknowledge all of the writers I have quoted for their wisdom and inspirational words. If there is an error concerning permission to reprint, I apologize and a correction will be made in subsequent editions.
Cataloging-in-Publication Data is on file with the Library of Congress.
Paper ISBN: 9781557537607
ePDF ISBN: 9781612494821
ePUB ISBN: 9781612494838
This book is sold with the understanding that neither the author nor the publisher is engaged in tendering legal, accounting, medical, or other professional advice. If such advice or other assistance is required, the personal services of a competent professional should be sought.
Beloved is the Man no one sees
Contents     Acknowledgments     How to Use This Book     Prelude   Defining Moments   Signs     Get a Diagnosis     Early Stages     Understanding the Person   Family Moments   I Promised     “I Can’t Leave ‘Em”     Love: Noun or Verb     Taking Care of Yourself     “They Look Great!”     Helping Hands     “I’m Here to Take Care of You!”     “You Can’t Drive”     Finances     Funerals (Should we take them?)     Outings with Less Stress     Holidays ‘n’ Family Reunions     People Stop Visiting     Not Forgotten     “Who Are You?”     What Do You Love?     What Does This Person Love?     You’ve Got Mail!   Challenging Moments   Development Level     Live Their Truth     “I Want to Go Home”     Stop Correcting Them     You Are Wrong… They Are Right…     Blame It on Something Else     Your Mood Affects Their Mood     Illusion of Choice     “My Mom Never…”     Swearing     Vomited On     The Facts Are All Off     “See” Authority     Everything Gets Lost     Replace, Replace, Replace     Glasses Dentures Hearing Aids     Repeat, Repeat, Repeat     Nonsense!     The “Spin”     Saturate Their Obsessions     Kick-Starting     Joy     Look Good, Feel Good, Play Good     Honey, Dearie, Sweetie     Men… Being Gentle-men     Socially Engaged     Moments of Discomfort     Hallucinations     Sundowning     Wandering, Hoarding, Combative     Age Appropriate     Confidentiality     Let’s Talk about Sex     Traumatic Moments     Violent Moments     Basic Right to Live     Taking Them to the Doctor?     Medication   Transitioning Moments   When Is It Time to Move?     Choosing a Care Community     What to Expect     Creating a Safe Haven     “Where’s My Room?”     Playing Favorites     Remember Their Greatness     Habits of a Lifetime     Personal Questionnaire     How Did They Love You?     Memory Box     Life Reflection     Music Does Wonders     A Commercial about TV     Ring, Ring, Ring     This Is Not Your Room!     It’s Saturday Night!     Where’s the Outhouse?     Suppertime!!!!!     Get Your Zzz’s   Enhanced Moments   So You Wanna Visit?     Let’s Talk Communication     Quality Connections     Yes ‘n’ No Questions     “How Are You?”     When In Doubt… Laugh     Share Your Life     Magic Words     Saying Goodbye     Sparking Moments     Child ‘n’ Pet Therapy     Art vs. Crafts     “Help Me”     Drink Up     Walking, Walking, Walking     Quiet as a Church Mouse     Breaking of Bread   Final Moments   Windows in the Brain     Late Stages     Power of Touch     Final Moments     Be Gentle     Just Breathe     Be Like a Duck     Be Like the Sun     Spiritual Strength     The Beginning     Consider     Create a Moment     About the Author
Acknowledgments
People with Alzheimer’s — Thank you for teaching me
Nutty Caregivers — You are my inspiration
Linda and Natalie — Friends and “experts” on Alzheimer’s
Sisters of Providence — Angel wings surrounding me
Friends at Purdue — (^_^)
Friends at home — Dance when the music plays
Family — Love my roots
Freddy — Filler of many cups
Troy — Steady cool water for this flower
Sidnee — Gypsy artist …lava
Taylor — Butterfly fly high
Keegan — Who knows me better than you?
Stacie — Queens for a life
Mom and Dad — For giving me wings to fly
A mountain of gratitude to ALL who polished this gem: Sister Ellen, Sister Ruth, Sister Mary Rita, Kelley, and, of course, Dustin.
Peter, this was dug up again only because you asked and graciously offered your monkey wisdom throughout.
A sweet long embrace to Stacie — my niece, friend, and steady rock. My goodness we make a magical team.
Bless our labor of love.
How to Use This Book
I have a vision. A vision to look beyond the challenges of Alzheimer’s and focus on creating moments of joy. With short-term memory loss life is made up of moments. There are not perfectly wonderful days; there are perfectly wonderful moments — moments that put a smile on their face and a twinkle in their eye. Five minutes later, the person will have forgotten what was said and done; the feeling, however, lingers on. This new edition of Creating Moments of Joy is sprinkled with hope, fueled with wisdom, and lightened with humor. Our greatest teacher is the person with Alzheimer’s, and who we explore is … Ourselves.
  Defining Moments — Signs that tell you it’s time.   Family Moments — This section will help you understand the strain the caregiver feels and how we, together, can support those giving care.   Challenging Moments — This is a difficult journey, one you did not ask for. May this section teach you little tricks to lighten the load.   Transitioning Moments — You will encounter many transitions as the person moves through this disease. Learn how to sustain and trigger memories along the way.   Enhanced Moments — In each moment there is an opportunity to create a better moment. Discover how.   Final Moments — May we all grow spiritually and cherish the teachings along the way.
Keep it simple. Open the book to one chapter that speaks to you. You will make mistakes. Mistakes are treasures too because they teach you what not to do. With short-term memory loss you get many “do-overs,” and each moment is a new moment. As a family, scribble notes everywhere about anything at all; one person can write with a blue pen, another with red, and another with black. When the time comes, pass on this book filled with your struggles and solutions so wants and wishes are not lost, but bound together.
Every person with Alzheimer’s is completely different. Therefore, I am not your teacher; your experience with this person, in each moment, is your teacher.
It’s also my true desire to create moments of joy for you, the person who holds and reads this book. I have carefully selected stories, quotes, and dashes of humor — may you remember, cry, laugh, love, and find a bit of hope.

 
 
Knowledge is the foundation of Wisdom, but Wisdom means nothing unless you apply it. — T HE B UNNY
 
Prelude

 

Bob was an avid fly fisherman and loved fishing the streams of Oregon. I met him when he moved into our community after being diagnosed with Alzheimer’s. Bob had a wonderful relationship with his wife, and I asked her to bring me one of his fishing poles. We were all outside enjoying the sun when his wife opened the door with a fishing pole in her hand. I gave the pole to Bob and asked if he would show us how to cast. He tossed the line out with such ease — and then handed me the fishing pole. Needless to say, I didn’t do very well, but he enjoyed watching me try. Then I asked him, “How do you tie the lures on?” He grabbed into the air for a fishing line, which wasn’t really there, and he moved his hands and fingers as if he were tying the knot. He looked over at me with the imaginary knot in his hand and a smile on his face. I said, “You’re amazing.” And he just laughed.
T his is what I mean by “creating a moment of joy.” Bob relived a beloved pastime: fly-fishing. If his wife had not brought his fishing pole, this moment would not have occurred. We would have missed our opportunity to create a moment of joy. Instead, we captured it. We created a moment of joy for the people who lived in our community, for me, for Bob’s wife, and, most importantly, for Bob.
Defining Moments

The moon reveals a whole new light. — J OLENE
Signs

 

We were playing cards and mom always kept score. Mom handed the score pad to me. She couldn’t keep score anymore.
My husband and I taught ballroom dance. Before dance class began, he asked me, “What are we doing here?”
My dad and brothers went hunting. My dad dropped off my brothers and said he’d pick them up down the road, but he went home and forgot all about them.
My husband was always good with money and did our finances. One day I discovered we were actually in the red. He had not been subtracting the money correctly in the checkbook.
My mother was an awesome baker but she could no longer follow a recipe.
He looked at our grandson and said, “You have got to take care of the pigs.” We didn’t have pigs anymore and he thought he was talking to our son.
We took Mom out to eat and she couldn’t zip her coat. Plus, she couldn’t do the kids’ puzzles on the back of the menu as she always had.
My cousin went elk hunting with my husband like they always did each year. My husband noticed odd things like my cousin taking all of the food out of the cooler, or leaving the lantern on all the time. Then my cousin just wandered off into the woods. Fortunately he took the walkie-talkie with him so my husband was able to call him on it and ask him where he went, to which my cousin replied, “I don’t know.” My husband did find him and they were able to safely make it home. We talked with my cousin’s wife about what happened and she just said, “Oh, I thought he would have said something to you about it since you’re so close with him.”
I moved in with my grandma after my grandpa passed away. There were reminder notes everywhere and I didn’t think anything of it until we went to Las Vegas toge