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Thank you for visiting the site of Carol B. Amos. Her fervant prayer is that if you are caring for a person who has Alzheimer’s disease, God will be with you and your loved one during your journey. Alzheimer’s is not an easy journey and you should reach out for help. Caregivers should not take on this monumental task alone. Carol’s desire is to make your journey less stressful and more rewarding.
This website, CarolBAmos.com, contains resources and information that Carol found useful during her journey caring for a loved one with Alzheimers. Carol continues to read, attend conferences, and learn more about Alzheimer’s disease, effective caregiving, and Alzheimer’s prevention. In order to share important resources and information with you on the website please sign up for Carol’s newsletter above.
The original title of this book idea in 2008 was “From Discovery to Recovery.” Even then, Carol was hopeful that a cure would be found. Unfortunately, her mother passed away before this happened. Please support organizations that are working on cures including the Alzheimer’s Association (www.alz.org), Cure Alzheimer’s Fund (www.curealz.org), and Investacure (www.investacure.com). Carol’s hope and prayer is that a cure will become widely available and her book will no longer be needed.
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"I was a caregiver for my mother who had Alzheimer’s for over eleven years. I wrote the book H.O.P.E. for the Alzheimer’s Journey because as I spoke to other caregivers, I found that a little information made a big difference in their caregiving." ~ Carol B. Amos |
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"It is a blessing to others when God sends you to them as a voice of encouragement." ~ Roy Lessin |
WHAT WOULD IT TAKE?
November is National Caregivers and Alzheimer’s Awareness Month. This newsletter pays tribute to the millions of dedicated caregivers taking care of a parent, spouse, child, other relative, or friend.
What Would it Take?
As a caregiver for my mother who lived with Alzheimer’s disease, I understand the challenges of Alzheimer’s caregivers. According to the Alzheimer’s Association, fifty-nine percent of family caregivers of people with Alzheimer’s or other dementias rated the emotional stress of caregiving as high or very high.1 My book H.O.P.E. for the Alzheimer’s Journey shares what I learned with other caregivers. It introduces The Caregiving Principle® which uses Maslov’s Hierarchy of Needs to define the needs of the person you are caring for. These needs are physiological (similar to Activities of Daily Living – ADLs), safety, social, esteem, and self-actualization. If these needs are not met, it could impact the health, attitude, and behavior of your loved one.
Everyone has a physiological, safety, social, esteem, and self-actualization need. Caregivers should apply Maslov’s Hierarchy of Needs to themselves to ensure that most of their needs are being met. Are you eating properly? Are your medical screenings and appointments current? Are you allocating enough time to safely drive to your next destination. Are you connected with others and participating in social events (birthdays, weddings, etc.) with friends and family? Are you giving, learning, and growing?
Although it is hard, caregivers have to learn to put their needs ahead of the needs of their loved one… some of the time. Here is an example.
I took my mother to the doctor. The appointment ran long and she also needed a blood test. For me, it was always easier to add an appointment while she was out instead of starting over the next day. When we arrived at the hospital I grabbed a wheelchair so Mom would not have to walk. I knew she was tired. I hung her walker across the wheelchair handles and proceeded to the lab. Although I had been told that the hospital lab was open until 5:30 pm, it actually closed at 5:00 pm. As I left the lab, a staff member came to my rescue and graciously agreed to have the blood test done by the emergency department. It took awhile to process the paperwork. Mom started repeating, why don’t we just come back tomorrow. I knew she was tired and probably hungry and it was beginning to impact her behavior. I knew this situation could spiral downhill quickly. I moved Mom to the waiting room and I kept giving her reassuring signs. I forged on until the blood test was completed.
Yes, we could have returned the next day, but I had missed returning to work that afternoon. And taking Mom out the next day would cause additional anxiety for both of us. But fortunately she did well considering she was tired and it was past her dinner hour. I had a good night of sleep and did not have to rearrange my work schedule the next day.
My mother knew I had to be my best to provide the best care for her. In my book H.O.P.E. for the Alzheimer’s Journey, I begin each chapter with a personal reflection. In Chapter 25 entitled “What About Me” this is my reflection.
“In the fall, as the daylight faded, my mother rushed me out of her room so I did not have to drive home in the dark. She said, “I want you to arrive home safely because I’d be lost without you.” I worried about being able to care for Mom. A car accident or a normal illness could have prevented me from providing care. Caregiving was a balancing act between my needs and my mother’s. If I did not take care of myself I would be unable to care for her.”
What would it take for you to put your health and wellbeing above that of your loved one maybe 5%, 10%, or 20% of the time? What would it take for you to be able to call and schedule your physical, your prostate exam, your mammogram, or your colonoscopy next week? What would it take to be able to treat your best friend to lunch for their birthday? Write down what you would need and then begin filling the gaps. In many instances, you will need someone to take care of your loved one while you are away. Consider family, friends, respite care, or professional caregivers. Retired members in your church or neighborhood may be willing to help for a small fee. Also consider simplifying or possibly skipping some of the regular tasks. For example, maybe the medical therapy or treatment can be delayed until you return.
Applying Maslov’s Heirarchy of Needs to yourself is one way to take care of yourself during National Caregivers Month and beyond. Please remember the words of my Mom because your loved one would be lost without You!
12024 Alzheimer’s Disease Facts and Figures, Alzheimer’s Association
Alzheimer’s Association Advocacy
I was honored to work in my Alzheimer’s Association Advocacy role for the coffee with CMS Administrator Chiquita Brooks-Lasure and Congresswoman Lisa Blunt Rochester. Three other advocates and I shared our caregiving stories that brought to life the challenges of being a caregiver. We asked for Congresswoman Rochester’s support of the AADAPT Act, which stands for Accelerating Access to Dementia and Alzheimer’s Provider. This act will provide much needed Alzheimer’s education for primary care physicians and their staff resulting in faster and more accurate diagnosis. Thank you to Dr. Steven Huege and Christiana Care Swank Memory Center for hosting this great event.
After this event, I followed Administrator Brooks-Lasure and Congresswoman Rochester to their “Fireside Chat” at the Wilmington Senior Center. The topic was lowering prescription drug cost for seniors. Plenty of resources were available after the chat to address individual issues involving prescription drugs and their cost.
2025 Events
Please help me spread my message of H.O.P.E. Contact me if you are interested in a seminar for your support group, church, conference, or workplace. Seminars include:
• Alzheimer’s Disease Awareness
• My Caregiving Story
• H.O.P.E. for the Caregiver (current/future caregivers)
• Balancing Caregiving and Career (current/future caregivers)
• The Caregiving Principle® (dementia caregivers)
• Alzheimer’s Disease for Home Healthcare workers (home healthcare workers)
• Seven Steps to Prepare for the Caregiving Journey (current/future caregivers)
Please visit my website for updates to my schedule.
H.O.P.E. for the Alzheimer’s Journey: A Great Stocking Stuffer
H.O.P.E. for the Alzheimer's Journey: Help, Organization, Preparation, and Education for the Road Ahead is on sale until January 1, 2025 for $10. Free gift wrapping and shipping in the U.S. is included. Caregivers can benefit from the encouragement, advice, tips, and tools included throughout the book. H.O.P.E. also introduces The Caregiving Principle®, a novel approach to caregiving that provides a deeper understanding of a person living with Alzheimer’s. It also provides a framework for the caregivers’ role. Over 60% of the content applies to any caregiving situation. H.O.P.E has helped many caregivers have a less stressful, more rewarding journey. Visit the book page of my website, bookstores, or Amazon to purchase H.O.P.E. for the Alzheimer’s Journey. Please consider purchasing a copy for a caregiver, co-worker, friend, or family member. H.O.P.E. for the Alzheimer’s Journey is a great stocking stuffer and the perfect way to say, “I care.”
Please Take Care of Yourself