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H.O.P.E. for the Alzheimer’s Journey: Help, Organization, Preparation, and Education for the Road Ahead
By Carol B. Amos, CDS
My Caregiving Experience
H.O.P.E. for the Alzheimer’s Journey: Help, Organization, Preparation, and Education for the Road Ahead is a guide for Alzheimer’s caregivers. When my mother, Elizabeth Boyd began experiencing memory loss in 2003, I began to educate myself on the disease. I visited the Alzheimer’s Association, attended workshops, and created my own personal library.
My two brothers and I were caregivers from a distance and we worked with her doctors, social workers, and a nurse to help keep her in her home. I was fortunate because although we were different, my brothers and I worked extremely well together and made all decisions jointly. They were the foundation of my Circle of Support.
We eventually moved my mother to assisted living in her area and a year later to memory care near me. She declined slowly and passed away eight years later in 2014.
Why I Published H.O.P.E. for the Alzheimer’s Journey
Available on Amazon
Although my brothers supported this effort, I was not sure if I should publish the book. I did not tell my mother about the book and I had no plans to publish H.O.P.E. while she was alive. I wanted to spend whatever time I had left with my mother creating wonderful memories.
Even after she passed away I debated whether I would publish the book. My mother was a private person and the book shares parts of her story. But throughout her life, my mother always helped other people, so I knew she would want to help caregivers, even in death.
H.O.P.E. for the Alzheimer’s Journey was published in October 2018 and I am grateful that it has helped hundreds of caregivers. H.O.P.E. for the Alzheimer’s Journey helps caregivers have a less stressful, more rewarding journey. Here are a few testimonials:
“Carol’s book has been a tremendous asset during my mother’s diagnosis. It provides great recommendations. Times like this it is helpful along my journey.” (Robbin)
“Thank you for the courage to write a good book. My mother is going through this now and your book has helped me understand her.” (Frances)
“I loved this book. It was both informative and very helpful with understanding and effectively coping with people (my mother) that are affected by this disease.” (Joan)
“I spent a weekend reading this book between tears of familiarity and comfort. What a tribute and a loving family to share their journey so others that approach it with grace and comfort. I wish I had this guide many years ago when we started on this same journey, so many of the situations and stories are so familiar.” (MS)
The Caregiving Principle®
My mother lived alone in Cleveland when we began to notice changes in her ability to manage activities of daily living. My brothers and I rallied together to assess the situation by increasing our calls and visits. We worked with her doctors and gradually assumed responsibility for her care.
The first few years of caregiving included many, many debates, heated discussions, and arguments with our mother as she fought to maintain her independence. When my brothers and I decided to move my mother to memory care near my home in Delaware, my main concern was, “How do I avoid these arguments?”
I wanted the argumentative and difficult Mrs. Boyd to remain in Cleveland and I wanted to bring my vacation buddy – my caring, fun-loving Mom – to Delaware.
But in reality, they were both coming to Delaware because they were the same person. So I started analyzing our caregiving interactions over the past few years and I developed a rudimentary form of what I now call The Caregiving Principle®.
The Caregiving Principle® is a novel approach to caregiving that provides a deeper understanding of a person living with Alzheimer’s and a framework for the caregiver’s role.
About H.O.P.E. for the Alzheimer’s Journey
The Caregiving Principle® is the theme of H.O.P.E. for the Alzheimer’s Journey. My eleven years of caregiving experiences provide examples to demonstrate the concepts of The Caregiving Principle®.
Some experiences are explained using original family email communications that help convey the emotion, concerns, and deliberations with my brothers along our journey. Each chapter begins with a personal reflection and each chapter ends with a checklist for the caregiver. The major sections of the book are:
- Part I: Preparation for the Alzheimer’s Journey
- Part II: The Caregiving Principle®: Needs of the Person with Alzheimer’s Disease
- Part III: The Caregiving Principle®: Needs Filled by the Person with Alzheimer’s Disease
- Part IV: Tools for the Caregiver to Fulfill Needs
- Part V: Meeting Needs in Different Residential Settings
- Part VI: Advice for the Caregiver
Looking back, I wish that I had H.O.P.E. for my entire journey.
Carol B. Amos
Carol B. Amos, CDS
Carol is passionate about increasing Alzheimer’s awareness, eliminating the stigma, educating family caregivers, and finding a cure for this dreadful disease. She became a certified Cares Dementia Specialist and attend many conferences to continue to learn about the disease, current research, reducing risk for developing the disease, and caregiving.
Her book, H.O.P.E. for the Alzheimer’s Journey is the 2019 Book Excellence Award Winner for the Caregiving category. It is available on Amazon.
Carol B. Amos has spoken on radio and television and at conferences, churches, senior centers, and community events. She is a volunteer for the Alzheimer’s Association as an advocate, a fundraiser, and serves on the Delaware Valley Care and Support Committee.
Carol has visited her state and nation’s capitals encouraging legislators to increase funding for Alzheimer’s research and caregiver support. Her ultimate goal is to make H.O.P.E. for the Alzheimer’s Journey obsolete by supporting efforts to find a cure for Alzheimer’s disease.
Through her website, Carol shares valuable information for caregivers and welcomes new subscribers to her newsletter. On social media, she shares research and actionable information.
Connect with Carol
- Website: www.carolbamos.com
- Facebook: HopefortheAlzheimersJourney
- Twitter: @carolbamos
- LinkedIN: Carol B. Amos
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