HOPE for the Alzheimer's Journey: Help, Organization, Preparation, and Education for the Road Ahead

HOPE for the Alzheimer's Journey: Help, Organization, Preparation, and Education for the Road Ahead

by Carol B. Amos
HOPE for the Alzheimer's Journey: Help, Organization, Preparation, and Education for the Road Ahead

HOPE for the Alzheimer's Journey: Help, Organization, Preparation, and Education for the Road Ahead

by Carol B. Amos


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H.O.P.E. for the Alzheimer’s Journey equips Alzheimer’s caregivers with knowledge, tools, and advice for their difficult road ahead. The concepts are conveyed in an open, honest, and creative manner using original family email communications from Carol B. Amos’s own journey. Carol also introduces The Caregiving Principle™: a simple approach that provides a deeper understanding of a person with Alzheimer’s disease and a framework for the caregiver’s role. She provides examples of how The Caregiving Principle™ helped her connect with her mother. H.O.P.E. for the Alzheimer’s Journey encourages caregivers to take care of themselves and provides inspiration for a less stressful, more rewarding journey.

Product Details

ISBN-13: 9781683509035
Publisher: Morgan James Publishing
Publication date: 10/16/2018
Pages: 262
Product dimensions: 5.40(w) x 7.90(h) x 0.50(d)

About the Author

Carol B. Amos started her Alzheimer’s journey when she noticed her mother’s memory loss. Carol immersed herself in Alzheimer’s education and is essentiALZ® Plus dementia training certified. She has a passion to share her knowledge and make the journey for Alzheimer’s caregivers less stressful and more rewarding. She is also helping to eliminate Alzheimer’s disease as an Alzheimer’s Association volunteer, fundraiser, and advocate. Carol has a B.S. and MEng in Chemical Engineering from Cornell Universityand retired from a 35-year career at a Fortune 500 company. She has been married to her husband Alvin for 18 years. She enjoys tennis, travel, and gardening at her home in Delaware.

Read an Excerpt


The Challenge of Caring for a Person with Alzheimer's Disease

* * *

The biggest challenge of caring for a person with Alzheimer's is to remain hopeful. It was scary knowing my mother had a terminal illness. It was devastating knowing Mom would suffer and deteriorate for years. It was incomprehensible, knowing Mom could forget who I was. I needed hope that I could endure watching my mother waste away from this debilitating disease. I needed hope that I could continue to connect with and enjoy her. I needed hope that researchers would find a cure before it was too late for Mom. I needed hope that I could be the caregiver and daughter she needed in these remaining years of her life. I had to make the most of her last years in spite of the bleak situation. I learned to look for, appreciate, and savor God's rays of hope.

Every sixty-six seconds someone in America develops Alzheimer's disease. There are five-and-a-half million Americans with the disease and more than fifteen million unpaid caregivers for those with Alzheimer's and other dementias. These caregivers provide 18.2 billion hours of care annually. These family members and friends are thrust into their role by necessity, with very little preparation or understanding of how the disease would slowly cause their loved one to deteriorate. I was one of these caregivers for more than eleven years. I was forced to learn how to become a better caregiver so I could provide the care my mother needed and deserved.

Caring for someone with Alzheimer's is difficult because the person's behavior is often different and uncharacteristic. My mother was previously optimistic, but the illness initially made her negative toward situations and persons close to her. Her judgment and behavior became unpredictable. On two consecutive days the reaction to the same situation was completely different. She began to speak what she used to only think. For example, if someone walked by who looked different (defined however you like), I was afraid my mother may say something to embarrass the person ... or me.

I remember when my father was dying of cancer I kept telling myself this was not how I would remember him. I was there for my father in those last days, but in the back of my mind I focused on the pleasant memories. I found myself using a similar technique with my mother when she moved to Delaware. I thought of my mother as "she" and "her" and "mother," but not "Mom," "The Mom," or "my Mom." Realizing that slowly, in a way, I was distancing myself from my mother was crucial to reestablishing a more rewarding relationship. I could not keep her at arm's length. Throughout our lives our mother supported my brothers and me 110 percent; I wanted to do the same for her. I am so glad I embraced Mom and the Alzheimer's disease. I have so many precious memories from our time in Delaware I will treasure for the rest of my life. I could not imagine her on the Alzheimer's journey without my 110 percent support. I had to find "my Mom" that was hiding inside. I may not have liked her behavior, but she was still "my Mom." She may have said the wrong thing, but she was "my Mom."

Some days I dreaded going to visit. It was usually when I had to take her to a medical appointment and I could not anticipate her mood or behavior. I usually assumed I would encounter the worst case scenario, which did not help. I should have hoped for the best. I believe she could sense my mood even if I tried to hide it with my behavior. But eventually, on many days, I could visit Mom and truly enjoy her company, quick wit, and sense of humor.

Once when taking Mom to the doctor, the hymn "All Hail the Power of Jesus' Name" was playing on the radio. I reflected on my childhood when my mother decided to teach me church hymns. "All Hail the Power" was one of the first songs she taught me. While listening to the radio and without saying a word to her, I felt a powerful connection to our past and to our present.

Caring for a person with Alzheimer's is difficult because the person has poor short-term memory and eventually begins to lose long-term memory. Memory loss that interferes with the daily routine can be devastating. A person's memory is tied to who they were, who they are, and what they are doing. If a person is sitting in a car without short-term memory, he or she will not know if he or she should get out of the car or buckle his or her seat belt. Initially, Mom only exhibited poor short-term memory, but eventually her long-term memory began to slowly disappear. It was difficult having a basic conversation on many subjects in the past. I learned to incorporate what had happened and what was going to happen in my regular conversations to remind her.

Caring for a person with Alzheimer's is also difficult because someone must take charge of the situation when the person is unable to manage his or her affairs. The person taking charge may be a spouse, sibling, child, other family member, or friend. Taking responsibility for another adult is difficult. Becoming a parent to one's own parent is especially hard when the adult child has probably relied on the parent most of his or her life for guidance, wisdom, and support. Also, the good and bad relationship issues that existed before the diagnosis may remain as responsibility is assumed for the other person. And somehow a loved one may remember what buttons to push to get what he or she wants.

Pride may prevent a person with Alzheimer's from asking for and accepting help. Caregivers must provide care in a way that maintains the dignity of the person. I had to learn how to be a "parent" to my mother without treating her like a child and while continuing to respect her. Early on, before assuming responsibility for our mother, a water pipe burst while she was out of the house. The six-month period of helping her with the home repairs demonstrated my brothers and I had her best interest in mind and increased our credibility with her. This period made it easier for Mom to accept help and the decisions we made on her behalf.

Caregiver situations each have their unique challenges. Some caregivers are caring for a spouse or for multiple parents, one with and one without Alzheimer's. Some caregivers are married, working, and raising children. I was married to Alvin and worked in managerial roles that required travel. I had to balance my time and responsibilities.

Caring for a person with Alzheimer's is also difficult because it takes a physical and emotional toll on the caregiver. In the early phase of our mother's disease, my brother Mike used the phrase, "It's not her fault she has Alzheimer's disease." This phrase was a reminder for my brothers and me to:

• Treat Mom with dignity and respect.

• Not take out our frustrations on Mom.

• Not take Mom's personal attacks personally.

• Not blame Mom for doing what she should not do.

• Not blame Mom for not doing what she should do.

• Pause before reacting to Mom's behavior.

• Have patience, patience, patience.

Caregivers must exhibit a lot of self-control.

Caregivers should do a self-analysis and determine what traits or skills can help and what traits or skills can hinder them from being a good caregiver. My project engineer training helped me as a caregiver. I managed multiple activities simultaneously and systematically worked through issues and barriers. But these same skills hindered me because sometimes I became impatient in wanting to get the job done. I was thankful I had an internal alarm that at times alerted me that I was losing patience. But caregivers can only do the best they can do.

While driving to my mother's, I often asked God for help to deal with any situation that arose. I sometimes used separation to prevent me from being impatient with her. When I visited and she was in a state of extreme agitation and/or confusion, I told myself, "Carol, you can leave in fifteen minutes." Knowing I only had to be patient for fifteen minutes helped to modify my mindset, and many times I remained longer. I knew I could probably ease Mom's state of agitation or confusion.

Sometimes separation was not as easy. In 2011, after a routine doctor's appointment, a blood test was required. I was told the hospital outpatient laboratory closed at 5:30 p.m., but it actually closed at 5 p.m. The hospital graciously arranged to do the blood work, but it took time to work out the details. I was pushing Mom in a hospital wheelchair with her walker hanging across the back handles. She kept repeating, "Why don't we make an appointment and come back?" The blood test could have been done the next day, but it was easier to add the blood work after the doctor's appointment rather than to take her out the next day. Taking Mom to a doctor's appointment created a lot of anxiety for her. Also, I needed to work the next day since I was unable to return to work that afternoon. I was tired and Mom was tired, so I moved her to the waiting area while I completed the paperwork with the emergency room staff. I knew my patience was gone and I did not want to say the wrong thing to my mother.

When my brothers and I started this journey, caring for a person with Alzheimer's was further complicated because we were unaware of a roadmap. We had a guide of seven stages that provided a general idea of how the abilities of a person with Alzheimer's changed as the disease progressed (appendix 1). The caregiver must monitor changes in mood and behavior and work with a doctor to decide if a change in routine, medication, or care is needed.

Throughout this journey I learned to find God's blessings, the rays of hope. I was hopeful when Mom had no pressing medical, housing, or behavioral issues. I was hopeful when I could say the right words and have the right demeanor and gestures to diffuse or prevent a negative situation. I was hopeful when a stranger (angel) offered to help Mom or me. I was hopeful when I could be patient and focus on the needs of my mother. I was hopeful when Mom and the residents were enjoying an evening social. I was hopeful when Mom was using sound logic or showed an increased awareness of her surroundings. I was hopeful when my mother said, "It's eighty degrees," as she correctly read the thermometer dial while exiting the building. I was hopeful when my mother complimented me on my new suit and it was a new suit. I was hopeful when we opened the door to her room and she was ready and knew she was going somewhere.

To: Mike, Ron

Date: 12/27/10

From: Carol

Subject: Christmas

Mom came to our house for dinner. We did have a small miracle. Alvin picked her up and as he passed one of my company's sites, he told Mom that I worked for the company, but at a different location. Mom said, "I know. She works downtown." Alvin almost drove off the bridge. (smile)

God's rays of hope lifted my spirits and strengthened my belief. I began to believe my mother would be relatively well when I walked into her room. I began to believe she would have more good days ahead than tough days. I began to believe her remaining days would allow her to live in peace with dignity.

These challenges make caring for a person with Alzheimer's very difficult. You will have times when you will want to walk away from it all. And sometimes you have to, even just for a short period, to regroup. Understand you are not alone and there is help. The Alzheimer's Association, education on the disease, concepts from this book, and support from family, friends, and other resources can equip you with help and hope for your journey.


______ Strengthen your trust and credibility with your loved one.

______ Conduct a self-assessment of the traits and skills that can aid and hinder you from being a good caregiver.

______ Think about who and what support you will need during the tough phases of this Alzheimer's journey.


Circle of Support

* * *

As children, my oldest brother, Ron, was in charge when my parents left the house. Ron used his authority to direct Mike and me to clean up and put away our toys to gain favor from our mother. He was usually the sibling in trouble with our parents so I often rebelled against his authority. After my parents returned and heard of the altercation, Mom would say, "We won't always be around, and someday you will have to look after each other." Mom was preparing us for the time when we had to depend on each other for strength and encouragement.

I was truly blessed to have a brother on each of my arms for most of this journey. I am grateful that our successes collectively strengthened us and provided a hopeful outlook for the next crisis that arose. Ron and I were eight years apart. Ron completed his accounting degree with a specialty in taxes. He was a great resource for our family's tax and financial questions. Ron passed away two years before Mom. Mike and I are five years apart. Mike has a bachelor's and a master's degree in chemical engineering. He helped cultivate my interest in engineering. My brothers and I regularly kept in touch although we lived a great distance apart, Ron in Los Angeles, Mike in Cincinnati, and I in Wilmington, Delaware.

It was natural for the three of us to unite when Mom began to exhibit signs of memory loss. We were different persons with different perspectives, but the same objective, which was to provide excellent care for our mother. My brothers were the foundation of my circle of support. We worked extremely well together and made all decisions jointly. None of us had knowledge in this area, so we spent a lot of time making our decisions. We conducted research, spoke to others, and engaged in discussions. We often solicited input from Mom to understand her wishes and her concerns. When we collectively made a decision, we each supported the decision 100 percent. Our agreement was important to provide a consistent message to our mother.

Mike is an excellent planner and is very detail oriented. He navigated the paperwork (bills, insurance, social security, taxes), visited regularly, and took Mom to many of her medical appointments. Ron visited from California once or twice a year. He routinely provided practical and technical information about our mother's different medical conditions. He conducted most of our Internet and telephone-based investigations, such as identifying a moving company. In my opinion, Ron was more attuned to Mom's thoughts and feelings than Mike and I. His innate understanding of our mother was beneficial as we made decisions on her behalf.

My brothers and I found that our roles changed depending on the situation. For instance, when Mom had knee replacement surgery, each of us provided care for her for a week with a day or two of overlap. I was with Mom for the pre-surgery preparation, surgery, and transfer to the rehabilitation center. Ron was with Mom for the remainder of her rehabilitation center stay and return to her assisted-living facility. Mike took the final stage, which was to facilitate Mom's transition to assisted living and continue her rehabilitation. One sibling usually executed the plan, and the other siblings were available as issues arose.

In 2005 Mom moved to a memory care facility near me in Delaware to receive twenty-four-hour professional care. I provided most of the routine non-professional caregiving, which involved:

• Supplementing her daily care

• Visiting my mother

• Maintaining her contact with the outside world including social outings

• Interacting with the staff

• Arranging for medical care (appointments, medications, etc.)

• Supplying clothing, toiletries, magazines, and other items

This new responsibility required me to balance family, work, and caregiving.

When my brothers visited, we informally discussed Mom's condition and her care. They were in an ideal position to detect changes in our mother because they did not see her as regularly as I did. They brought fresh eyes to the situation and offered ideas or suggestions. This regular assessment of caregiving, with input from her facility staff, enabled us to provide very good care for Mom.

My other immediate family members, my husband, Alvin, Mike's wife, Judy, and their daughter, Moriah, were an important part of this journey. They were not involved in the decision-making, but they were directly affected by our decisions. They experienced the emergency calls, assumed our household duties, and patiently dealt with the constant calls from the siblings or our mother. They were hopeful and lifted our spirits when we were sad or afraid. They have endured our time away from home and our being distracted with Mom's affairs while at home. It was a difficult balancing act, and I must admit I did not always find the correct balance. So I must publicly thank Alvin, Judy, and Moriah for their understanding, support, and love.

Family members are an extremely important resource to anyone starting this Alzheimer's journey. Start discussions with immediate family members early on. Do not limit yourself to family living in the area. Distant family members can support in other ways. Encourage immediate family members who have not seen your loved one recently to visit and observe him or her.


Excerpted from "H.O.P.E. for the Alzheimer's Journey"
by .
Copyright © 2019 Carol B. Amos.
Excerpted by permission of Morgan James Publishing.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.

Table of Contents

Introduction xi

Part I Preparation for the Alzheimer's Journey 1

Chapter 1 The Challenge of Caring for a Person with Alzheimer's Disease 3

Chapter 2 Circle of Support 11

Chapter 3 A Watchful Eye 17

Chapter 4 The Caregiving Principle™ 33

Part II The Caregiving Principle™: Needs of a Person with Alzheimer's Disease 43

Chapter 5 Physiological Need 45

Chapter 6 Safety Need 57

Chapter 7 Social Need 69

Chapter 8 Esteem Need 75

Chapter 9 Self-Actualization Need 81

Part III The Caregiving Principle™: Needs Filled by the Person with Alzheimer's Disease 83

Chapter 10 Cognitive Capability 85

Chapter 11 Physical Ability 97

Part IV Tools for the Caregiver to Fulfill Needs 103

Chapter 12 Faith 105

Chapter 13 Resources 113

Chapter 14 Communication 117

Chapter 15 Organization 125

Chapter 16 Legal Affairs 135

Part V Meeting Needs in Different Residential Settings 141

Chapter 17 Preparation for the Next Move 143

Chapter 18 Caregiving in the Personal Residence 153

Chapter 19 I Never Thought She Would 161

Chapter 20 Caregiving in the Assisted-Living Facility 167

Chapter 21 Caregiving in the Memory Care Facility 175

Chapter 22 Caregiving in the Nursing Home 183

Chapter 23 Caregiving during Hospice Care 189

Part VI Advice for the Caregiver 195

Chapter 24 Mind the Gap 197

Chapter 25 What about Me? 203

Chapter 26 Keep It Simple 209

Chapter 27 Be Grateful for God's Rays of Hope 213

Appendix 1 The Global Deterioration Scale (GDS) 219

Appendix 2 Summary of Book Resources 223

Acknowledgments 227

Dear Caregiver 229

About the Author 231

Endnotes 233

What People are Saying About This

Interviews and Reviews - Hanna Anderson

Included in this book are email correspondence between Ms. Amos and her siblings describing their observations on the state of their mother, care options, and personal feelings about what they are going through. The family shares their ups, downs, and occasional humorous moments as they band together for their mother's needs. This inside look can be quite valuable to other families experiencing the same thing offering a positive example and encouraging perspective.

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