While I Still Can...

While I Still Can…

Rick Phelps

Copyright © 2012 by Phyllis Phelps.

All rights reserved. No part of this book may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopying, recording, or by any information storage and retrieval system, without permission in writing from the copyright owner.

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Rev. date: 03/13/2015

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Contents

Chapter 1 Seventeen Minutes

Chapter 2 Doctors!

Chapter 3 After the Diagnosis

Chapter 4 When Working as an Emergency Medical Technician

Chapter 5 The Last Run

Chapter 6 A Defining Moment

Chapter 7 The Debriefing

Chapter 8 The Next Step

Chapter 9 Filing for Disability

Chapter 10 Meeting with an Attorney

Chapter 11 The Perfect Storm

Chapter 12 The On Switch

Chapter 13 Remembering to Take Medications

Chapter 14 That Lost Feeling

Chapter 15 The Cocoon Effect

Chapter 16 Restless Nights

Chapter 17 Losing the Ability to Read

Chapter 18 Sundowner’s

Chapter 19 Holiday Sacrifices

Chapter 20 That Dreaded Cell Phone

Chapter 21 The Fifty-Question Greeting

Chapter 22 The Walmart Dilemma

Chapter 23 The Problems with Credit Cards

Chapter 24 Watching Television

Chapter 25 The Kids

Chapter 26 Rick’s Daughter, Tia

Chapter 27 A Difficult Cross to Bear

Chapter 28 Saturday’s Woes

Chapter 29 Power Tool Ban

Chapter 30 Cold Feet Leads to Cold Shoulders

Chapter 31 The Camper

Chapter 32 When Repairmen Come to the House

Chapter 33 Mr. Phelps Goes to Washington

Chapter 34 Washington, D.C., Day Two

Chapter 35 The Elephant in the Room

Chapter 36 Memory People Begins

Chapter 37 The Balloon Launch

Chapter 38 Memory People II and Spin-off Sites

Chapter 39 Rick’s Personal Assistant, Leeanne Chames

Chapter 40 A Song for Awareness

Chapter 41 The Newsletter

Chapter 42 The Ride Along

Chapter 43 Video Journals

Chapter 44 Phyllis June—Best Friend, Soul Mate, Caregiver, Loving Wife

Chapter 45 Asking for Help

Chapter 46 The Necessity of Patience

Chapter 47 Redirection

Chapter 48 Falling into Character

Chapter 49 The Therapeutic Lie

Chapter 50 Communication

Chapter 51 Pain of Depression

Chapter 52 Caregiver Stress

Chapter 53 Stubbornness

Chapter 54 Wandering

Chapter 55 Appetite

Chapter 56 Incontinence

Chapter 57 Problems with Bathing

Chapter 58 Shadowing

Chapter 59 Hallucinations and Delusions

Chapter 60 Informing loved ones that they have Alzheimer’s

Chapter 61 Doctor Visits

Chapter 62 Hospitalization

Chapter 63 Don’t Have a Caregiver Backup Plan? Make One!

Chapter 64 The Difference Between Alzheimer’s and Dementia

Chapter 65 Is Dementia Contagious?

Chapter 66 Hospice: Accept All the Help That They Offer

Chapter 67 Choosing the Correct Adult Living Facility

Chapter 68 The Aftereffects of Caregiving

Chapter 69 Veteran’s Administration’s REACH Program

Chapter 70 Long-Term Care Insurance

Chapter 71 After the Loss

Acknowledgments

First and foremost I need to thank God. My struggle with this disease has brought me to a closer relationship with Him. I talk with Him every day. The tribulations that come with this disease have made it difficult for me to attend church because of the crowds and confusion, but a pastor of mine once said, This may be God’s house, but you don’t have to be here to talk with Him.

I also need to thank everyone in my family who has supported me with love and has given me strength. I love you all.

My new family of Memory People, which has become such a special part of my everyday life.

Greg and Sue Randles who have been our closest friends for so many years and always will be.

Harry Urban for working on the cover designs and Joely Young for her photography work.

The doctors who have looked after my well-being.

Gary Joseph LeBlanc who took on the project of writing this book that has helped me fulfill one of my sincerest dreams.

And I especially need to thank the love of my life, Phyllis June. I’ve loved her since the first time I laid eyes on her back in 1977, and always will. She has stood by my side through the many challenges we’ve faced. I wouldn’t be the man I am without her.

Rick Phelps

The disease softly ripples through our days. And then a wave! A large, long rolling wave. That overwhelms and consumes. We cannot predict when it will come. We cannot control it when it arrives. If we don’t conform to the wants of these waves and follow their flows, they will break us. We conform and do what we need to remain whole. We’re washed ashore, we stand upright. Walk and bend retrieving shells and pebbles from the sand. Shells of wisdom, pebbles of strength. Left behind by those who’ve been here before us. Memory People who feel what we feel. Memory People who share our thoughts. Memory People who know our hearts, Softly ripple through our days.

Written by Memory People member Renee Dowling

Introduction

I’m just a regular guy. I should say, I was just a regular guy. In the last few years things have changed dramatically in my life. This is the story of those changes.

Early Onset Alzheimer’s Disease (EOAD) came into my life officially on June 30, 2010. That day changed everything. I knew I had a memory deficit for at least five years before my diagnosis, but getting people to listen, understand, hear me… well, that was my first hurdle.

I learned very quickly the meaning of the word denial. Denial is huge with EOAD. Family, friends, coworkers, and even doctors can’t seem to say the word Alzheimer’s.

In my case I assume it was because of my age. I was fifty-seven when I was diagnosed. Very young you say? Through research, and educating myself, I discovered that there are even people in their thirties who have some form of dementia.

You see, Alzheimer’s is but one of the many brain disorders under the umbrella of dementia. It is indeed the most common, but again, there are many.

Extremely early in this journey, I felt compelled to tell my story. I soon found out that it is not only my story, it’s the story of hundreds of thousands of people struck by this horrible disease.

The tale is in my head. But how to get it on paper, that was my problem. After starting Memory People™, a social networking site on Facebook for patients, family members, caregivers, and advocates, I was constantly looking for that person, that one person who understood what Alzheimer’s is and could help me with my mission.

Then the day came; Gary Joseph LeBlanc joined Memory People. Gary is a renowned author in the world of Alzheimer’s. I soon found that out. I knew in my heart of hearts he was the man to help me tell my story.

Gary’s latest book Staying Afloat in a Sea of Forgetfulness had just been released. He was busy promoting it, and when I asked him to collaborate with me on my book he told me perhaps after the first of the year.

What? Maybe I was wrong. Here we have a man who cared for his father for over ten years, managing to keep him at home! He had been there for him 24/7. He was the caregiver’s caregiver. And he’s telling me, Maybe after the first of the year?

I didn’t know Gary except from emailing him, and even though I was stunned, I understood The World doesn’t stop because I have EOAD. I thanked him but told him that after the first of the year was just not doable.

You see, with EOAD, time itself is my enemy. I don’t know if I have six months or six years to tell my story. I simply had to find another writer. And I would. But thank God, three days later, my phone rang. With EOAD, a ringing phone can be a major problem, but when I saw it was from Gary, I had to answer it. He began to tell me he had been thinking about all of this and had decided he could start on the book sooner. He had some loose ends on some things to tie up, but if I could agree to the date, he would indeed help me write the book.

That day changed my life, again. We, or I, didn’t know how this would go. In the following pages you will take a journey—a journey like no other… a journey into the mind of an actual Alzheimer’s patient.

Come with Gary and me, as we walk you through what this terrible disease does to the afflicted person, his family, friends, coworkers, and even his faith. You will not regret the time it takes to read this book. After reading it, please talk about it to as many people as you can. You, dear reader, can be of great value in spreading much needed awareness and also invalidate the many myths surrounding this frightening disease. Please help, as Gary and I have done, to change lives, one person at a time.

Rick Phelps

Chapter 1

Seventeen Minutes

It has been said that the course of one’s life can change in a matter of minutes. I’m about to tell you the story of a man and his beloved family whose lives were turned upside down one summer morning, altering their paths forever.

Rick Phelps and his wife, Phyllis June, were driving the eighty minutes from their home in northeastern Ohio to Zanesville, for a first time appointment with a neurologist. After locating the office building and parking the car, they went in and introduced themselves to the receptionist. As a new patient, there were the standard forms to fill out attached to a well-weathered clipboard, so Rick sat down and filled in his name and address. Nothing seemed amiss until he came to the question of his date of birth; at this he drew a complete blank! Seeing he was struggling, Phyllis June, due to experience, took over completing the rest of the information and handed it back to the woman behind the counter.

It became obvious that Rick was growing increasingly uneasy. His hands were fidgety, and his eyes were shifting nervously to and fro, examining everything in the room from the deep blue carpet to how the furniture was coordinated to match the floor and the earth-toned cream-colored walls.

As he continued to look around, he found himself wondering what medical condition the other people in the waiting room were enduring. It astonished him that they didn’t seem to have a care in the world. How could they be in a neurologist’s office and not seemed to be worried?

Finally, Rick was called into a small examination room. He got up onto the butcher-papered examination table while Phyllis June sat in a chair close to him. Their ears were alert to any slight noise, hoping to hear the turn of the doorknob. Waiting for what felt like an eternity, at long last a tall graying man in his sixties entered the room and introduced himself as the neurologist.

Having already worked out everything he was going to say about the history of what he had been experiencing, Rick was about to open his mouth, but he never got a chance to utter a single word.

The doctor immediately dominated the conversation, informing the two of them that he had received all the results from the tests that the general practitioner had ordered, and he saw no reason for Rick to take any of them over again. Instead, what the doctor wanted to do was give Rick his own mini-mental exam in order to check his cognition. He asked Rick to count backward from one hundred, which he failed. Next he asked him to draw the face of a clock, making the hands read 11:15; he failed once again. Finally, he told Rick a short story, asking him to tap his leg every time he heard the word I. This too was a failure.

Putting his paperwork down, the doctor looked first at Phyllis June and then, more intently, at Rick. He said without hesitation, I’m certain you have MCI/EOAD. Confused, Rick straight out asked, What the heck is that? The doctor explained, It’s mild cognitive impairment of early-onset Alzheimer’s disease. I’m going to prescribe a newer medication called Exelon which comes in a patch. Change it every twenty-four hours and I’ll see you in six months.

That was that. So within seventeen minutes of entering the building, Rick Phelps and his wife, Phyllis June, found out that, at age fifty-seven, Rick had Alzheimer’s, a fatal disease!

They soon learned that Alzheimer’s is the fifth leading cause of death in the United States.

Their lives would never be the same.

"Hope is a good thing, maybe