NATIONAL FAMILY CAREGIVERS MONTH

National Family Caregivers Month

National Family Caregivers Month is dedicated to recognizing caregivers for their dedication supporting a loved one with a chronic illness, disability, or other health conditions. After being a caregiver for my mother, Elizabeth Boyd, I published H.O.P.E. for the Alzheimer’s Journey: Help, Organization, Preparation, & Education for the Road Ahead. This caregiver guide provides advice, tools, and suggestions that my brothers and I learned during our 11-year journey caring for our mother. Many concepts are conveyed in an open, honest, and creative manner using original family email communications. These emails provide insight into our thoughts, concerns, emotions, and deliberations as we realized our mother’s memory loss, sought a diagnosis and treatment, selected housing options, and developed care strategies as she continued to deteriorate from Alzheimer’s. 

H.O.P.E., as it is affectionately called, 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. H.O.P.E has helped countless caregivers have a less stressful, more rewarding journey.

Out and About: Spreading My Message of H.O.P.E.

I continue to spread my message of H.O.P.E. because I love to help, educate, and encourage caregivers. In September, I was an exhibitor at the Canaan Baptist Church Community Health Fair. I really enjoy discussing the warning signs, risk factors, and answering questions about Alzheimer’s disease. In October, I attended the Jewish Family Services of Delaware Savvy Caregiver Apple Cider Networking Event. I networked with many in the Delaware professional caregiving community and learned about the JFS Compass Program. Last week I was a panelist for the Alzheimer’s Caregiver Workshop sponsored by the Alzheimer’s Association. The education and encouragement was a wonderful way to celebrate National Family Caregivers Month. Erica Holmes, Program Manager, Alzheimer’s Association introduced our day. Adrienne Holloway, Christiana Care Swank Center discussed the Centers for Medicare and Medicaid Guide Program (see my June Newsletter). Jonathan Swartz, EasterSeals discussed respite grants and opportunities and introduced the Canaan Baptist Church “Together We Care” respite program. Our panel, moderated by Dr. Damali Thomas, included Sonja Brown, caregiver, Michelle Rowe, Swank Center Guide Nurse, and myself. We shared advice on difficult phases of the journey, examples of how to take care of yourself, and answered caregiver questions. Of course I shared my H.O.P.E acryonym. The conference concluded with a period of networking. All aspects of the day focused on “wrap around” support for caregivers.

H.O.P.E. for the Alzheimer's Journey: Help, Organization, Preparation, and Education for the Road Ahead is on sale this month for $10 with free gift wrapping and shipping in the continental U.S. Caregivers can benefit from the encouragement, advice, tips, and tools. 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. 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. 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 love you and I care.” 

Please Take Care of Yourself

ALZHEIMER’S AND BRAIN AWARENESS MONTH

Alzheimer’s and Brain Awareness Month

Welcome to June. June is Alzheimer’s and Brain Awareness Month. The “E” in my H.O.P.E. acronym stands for Education. Caregivers need to stay abreast of information that can help their loved one living with Alzheimer’s and effectively manage their caregiver role. As a caregiver, I began attending Alzheimer’s Association events and I have always found their educational programs beneficial. Last month I attended a symposium where they shared emerging Alzheimer’s research, introduced the new CMS GUIDE program (see below), discussed caregiver self-care, and concluded with a panel discussion by caregivers. These formal presentations are always informative but an added benefit of speaking with and sharing tips,  information, and encouragement with other caregivers present.

In honor of Alzheimer’s and Brain Awareness Month, please visit Alz.org and register for a free educational program near you or online. The website also includes useful articles and information including the 24/7 helpline on 1-800-272-3900.

Photo: Pat Risher, Panel Facilitator

CMS Guide Program

In July 2024, the Centers for Medicare and Medicaid (CMS) launched the GUIDE model. GUIDE is an acronym for Guiding an Improved Dementia Experience. The goal of the program is to:

• Provide coordinated care (dementia and other chronic conditions) to improve quality of care for those living with dementia,
• Reduce the mental and physical stress of their caregivers,
• Improve quality of life of the person living with dementia and their caregiver, and
• Reduce the financial burden of dementia care by:

- Helping the person living with dementia have less emergency room visits, less hospitalizations and allowing            them to remain in their home and community (familiar places) as long as possible.

- Providing support for the caregiver thereby reducing the medical mental health impact that so many dementia          caregivers experience from the high demand and stress of caregiving.

The major components of the program include: 

• Development of a comprehensive assessment and coordinated care plan for the person living with dementia
• Caregiver training, education, and support services
• Respite services allowing caregivers to take a temporary break from their caregiving responsibilities
• Coordination of community-based services such as meals and transportation
• 24/7 access to care navigators for questions and support

New GUIDE programs will begin providing services on July 1, 2025. To find a participating dementia care program in your area, visit. 

Photos: Kathy Cluff, Senior Social Worker and Adrienne Holloway, Program Manager, Swank Center for Memory Care

Happy Anniversary AlzAuthors!

Happy Anniversary AlzAuthors. AlzAuthors was created by 3 visionary Alzheimer’s Authors 10 years ago. It allows, authors like myself, to educate and encourage other caregivers. Visit the website on AlzAuthors.com to peruse the vast collection of books. They also host a monthly podcast and have a blog featuring real-life experiences. You can also sign up for their 10th anniversary book giveaway. AlzAuthors is an A1 Educational resource.

H.O.P.E. for the Alzheimer’s Journey

In honor of Alzheimer’s and Brain Awareness month please purchase a copy of my book to increase your awareness or to help a friend or family member.  H.O.P.E. for the Alzheimer’s Journey: Help, Organization, Preparation, and Education for the Road Ahead has helped hundreds of caregivers have a less stressful, more rewarding journey. This award-winning caregiver guide has been reduced to $10 in honor of Alzheimer's & Brain Awareness Month on CarolBAmos.com.  

Take Care of Yourself

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