By Richard L. Gaw
Staff Writer

 

Honor thy father and thy mother: that thy days may be long that upon the land which the Lord thy God giveth thee.                                   -- Exodus 20:12

 

Elizabeth Thomas Boyd was born January 15, 1920 in Abbeville, South Carolina.    She was the fifth of eleven children born to Rev. James B. Hunter and his wife, Addie. 

When she was three, her family moved to Youngstown, Ohio and after she graduated from high school in 1939, Elizabeth moved to Cleveland, where she first worked as a domestic and later in the steel mills of that city. In 1946, she married Clarence Richard Boyd and united in fellowship with Mt. Moriah Baptist Church and later the Shiloh Baptist Church. The rich and full company of her church and family was the center of her life.

Elizabeth worked in cafeteria services  for 20 years at Parkwood Elementary and East High Schools, until she retired in 1987. She was both a deaconess for their church and a self-taught seamstress. Rare was the visit to a church service when Elizabeth did not enter without a fashionable outfit she herself had made, which was usually accompanied by a matching hat that she had also made. Elizabeth and Clarence saw to it that all three of her children – Ronald, Michael and Carol – would receive college educations, and all three did; partly financed by the ribbon flower corsages she made for churches, weddings, and for Mother’s Day that were sold by the family.

Along with Clarence, Elizabeth was the primary architect of her children’s lives, which were lived in the close-knit lower middle class neighborhoods that surrounded the family home. At the center of Elizabeth’s involvement in her children’s lives was the importance of education.

“She didn’t go to college until we were ready to go to college,” said Elizabeth’s youngest child Carol B. Amos, who lives with her husband Alvin, in Hockessin. “So before my oldest brother Ronald went to college, my mother took a few courses at a local community college, just to prove that if she could do it at her age, that we all could do it.”

In time, Elizabeth’s dream was realized -- all three Boyd children attended and graduated from college – and eventually, they left Cleveland to pursue careers and begin families of their own: Ron to California, Mike to Cincinnati and Carol to Delaware, where after graduating from Cornell University with a Master’s degree in Chemical Engineering, she began a 35-year career at DuPont.

Beginning in 1999, on their visits to their mother in Cleveland, the Boyd children began to observe incidents that were not consistent with Elizabeth’s normal behavior. By 2002, they began to see the “red flags” of memory loss and lack of comprehension. Their concern was elevated due to the fact that their father had died in 1987 and Elizabeth had been living in the house alone for 15 years.

On Jan. 15, 2003, on the occasion of her mother’s 83rd birthday, Carol wrote an email to Ron and Mike. “We’re at a point where we need to keep a watchful eye on her,” it began. “It would be good if we can each call her at least once a week to check in.”

Carol and her brothers not only increased their calls to Elizabeth, they began documenting the symptoms they saw. They began attending her doctor appointments, and soon, Elizabeth underwent a neuropsych evaluation that indicated that while she didn’t meet the formal definition for Alzheimer’s, she was at risk for the disease. She was officially diagnosed with Alzheimer’s disease in 2004, and for the next decade, Ron, Mike and Carol sent several emails back and forth that gave updates on Elizabeth’s well-being.

These emails, as well as the touching, 11-year journey of how the Boyd children loved their mother through Alzheimer’s disease, is captured in Carol’s book, H.O.P.E. for the Alzheimer’s Journey (Morgan James Publishing, 2018). Throughout its 243 pages, Carol’s book serves as a primer for any caregiver who is helping a loved one through Alzheimer’s, and shares the knowledge and advice that she learned and applied as a caregiver. Using the acronym H.O.P.E., the book’s mission is to Helps, Organizes, Prepares and Educates caregivers. Each chapter begins with a personal reflection and ends with a checklist for caregivers.

Serving as the book’s central theme, Carol’s “The Caregiving Principle” provides a simple method of caregiving that helps caregivers develop a deeper understanding of a person with Alzheimer’s, by looking at the total person – based on Maslow’s Hierarchy of Needs (Physiological, Safety, Social, Esteem, and Self-Actualization). According to Carol, the equation of “The Caregiving Principle” is the Needs of the Person Minus the Needs to be Filled by the Person Equals the Needs to be Filled by the Caregiver.”

“Simply, if a person cannot provide for all of his or her own needs, then someone else must provide them,” Carol writes. “The ‘someone else’ is a caregiver.”

 

Alzheimer’s disease is a degenerative type of brain disease, and is thought to begin 20 years or more before symptoms arise, with small changes in the brain that are unnoticeable to the person affected.

Only after years of brain changes do individuals experience noticeable symptoms, such as memory loss and language problems.

The symptoms of Alzheimer’s disease occur because nerve cells – or neurons -- in parts of the brain involved in thinking, learning and memory (cognitive function) have been damaged or destroyed. Individuals typically live with Alzheimer’s symptoms for years, but over time, symptoms tend to increase and start interfering with an individuals' ability to perform everyday activities.

 

Throughout the first part of Elizabeth’s struggle with Alzheimer’s, she remained in Cleveland – an eight-hour drive from Delaware. The distance was difficult for Carol and limited her ability to make regular trips, but when she was able to come to Cleveland, she witnessed her mother’s slow decline.

 “My mom was a very strong independent woman, and she fought for her independence, and it was hard seeing her decline,” Carol said. “You know that it’s going to happen – that she would decline – but you just don’t know how and when it’s going to happen. It’s not so much me seeing that she’s struggling, but seeing her internal struggle, and knowing that she knows she is declining.

“A lot of times, I would be talking to her on the phone, and I just wanted to reach out and give her a hug, but I couldn’t, because I was eight hours away.”

Carol said that she was inspired to write H.O.P.E. from her frequent conversations with God.

“Throughout the journey, there were things that He would reveal to me about the whole situation, and there were times when things were going bad, and then I saw what I called ‘God’s Rays of Hope,’” Carol said. “One time we were walking out of her building, and Mom saw the thermometer dial and said, ‘Oh, it’s 80 degrees.’ There were so many times when hope served as a confirmation from God.”

If there were any reservation in releasing the book, it was that Elizabeth Boyd was a very private person, and Carol struggled with whether she wanted to share her journey with readers.

“The purpose of this book is to help others, and I debated to the last minute whether I would release this, because it’s about her life,” she added. “The reason why I did it was that I felt I had something to say, and I think my mother would do the same thing.”

While the story of Elizabeth Boyd is central to the book, H.O.P.E. also provides a chapter-by-chapter list of what caretakers can do during each stage of Alzheimer’s. Part V, for instance, includes chapters entitled “Preparation for the Next Move,” “Caregiving in the Personal Residence,” “Caregiving in the Assisted-Living Facility,” “Caregiving in the Memory Facility,” “Caregiving in the Nursing Home” and “Caregiving during Hospice Care.”

 

During the diseases’ progression, neurons in other parts of the brain are damaged or destroyed. Activities that used to be core to the individual’s identity, such as planning family events or participating in sports, may no longer be possible. Eventually, neurons in parts of the brain that enable a person to carry out basic bodily functions, such as walking and swallowing, are affected. People in the final stages of Alzheimer’s disease may be bed-bound and require around-the-clock care.

Ultimately, the disease is fatal. It is the sixth leading cause of death in the United States.

 

In September 2004, Elizabeth entered an assisted care facility in Cleveland, and a caregiver was hired to help her, but in 2005, Carol and her brothers made the decision to move their mother to Sunrise of Wilmington, an assisted-living facility on Shipley Road. While it would allow Carol and her husband to make frequent visits to her mother from nearby Hockessin, it was a huge change for Elizabeth, who had spent the past 65 years in Cleveland. “She mentioned if she moved she might not see her family or friends again,” Carol wrote. “Unfortunately, I knew she was right, but we felt it was more important for Mom to live close to one of her adult children.”

It turned out to be the best move possible. Over the nine years, Delaware became Elizabeth’s home. She participated in Bible study, went on lunch and family outings and attended musical performances and a performance at the Wilmington Skating Club. She was cared for by a caring staff of medical professionals. She befriended other residents, had what she called “her apartment,” and was known by residents and staff as Mrs. Boyd, Ms. E and Ms. Liz.    

“If she was happy, I was happy,” Carol said of her mother’s years at Sunrise. “I knew that she was being taken care of. I knew that she would be able to interact with people there. I knew that they had activities during the day, and I knew that she would eat well.”

 

 

An estimated 5.8 million Americans of all ages are living with Alzheimer’s dementia in 2019. This number includes an estimated 5.6 million people age 65 and older, and approximately 200,000 individuals under age 65 who have younger-onset Alzheimer’s, though there is greater uncertainty about the younger-onset estimate.

Of the 5.8 million people who have Alzheimer’s dementia, 81 percent are age 75 or older, and out of the total U.S. population, one in 10 people age 65 and older has Alzheimer’s dementia. The percentage of people with Alzheimer’s dementia increases with age: 3 percent of people age 65-74, 17 percent of people age 75-84, and 32 percent of people age 85 and older have Alzheimer’s dementias.

 

 

During her final days at Sunrise, Elizabeth stopped eating and had difficulty swallowing. Carol asked the attending caregiver what she thought Elizabeth was trying to tell them. “I think she’s trying to tell everyone that she’s done her work,” the caregiver said.

Elizabeth Boyd left this world on June 15, 2014. She was 94 years old. Ironically the family had planned to have the song “I’ve Done My Work,” originally sung by Mahalia Jackson, performed at her funeral in Cleveland. It was the same song that was performed at her husband’s funeral.

“My mother had a very good life,” Carol said. “She approached dementia with dignity, grace and humor, and often thanked God for waking her up in the morning and keeping her throughout the day.”

For Carol, one journey may have ended, but another has begun. On the heels of her book, she has been sharing “The Caregiving Principle” at conferences, workshops, churches, businesses, retirement facilities, senior centers and Alzheimer’s support groups.

Topics for her seminars, support groups and lunch-and-learn sessions include “What Everyone Needs to Know about Alzheimer’s Disease,” “Caregiving” and “The Caregiving Principle.” In addition, she is now a certified CARES Dementia Specialist and volunteers for the Delaware Valley Chapter of the Alzheimer’s Association. On Nov. 20, she participated in a panel session at the Association’s conference at the Delaware Technical Community College in Dover.

“This is a ministry, and my mother is a part of this ministry,” Carol said. “Mom and I get to help people. I’ve had a caregiver tell me, ‘I used to cry when I left my mom, and now I don’t cry anymore.’ Most people don’t immediately recognize that being a caregiver requires education. It’s like having any other job. If you change jobs, you usually receive training in order to do the job as well as you can.

“I hope that the people who read this book will be a better caregiver, that they will be able to reach out to develop a circle of support, that they will reach out to the medical community, and that they will be able to realize that they can’t do it all by themselves.”

To learn more about Carol B. Amos and to order H.O.P.E. for the Alzheimer’s Journey, visit www.carolbamos.com. If you would like Carol B. Amos to speak at an upcoming event, please email her at [email protected].

To learn more about managing Alzheimer’s dementia, as well as obtaining practical information for living with dementia and being a caregiver, visit the[aa8]   Alzheimer’s Association website at www.alz.org.

To contact Staff Writer Richard L. Gaw, email [email protected].