By Barbara Ella Milton, Jr., PhD, LCSW
Heeding the Caregiver Call: The Story of Barbara Ella Milton, Sr. and Alzheimer’s Disease is a memoir that describes in vivid detail the role-reversing caregiving journey I made with my mother from the time she was diagnosed with Alzheimer’s dementia through the last 4 years of her life. The journey was as backbreaking as it was heartbreaking. I took this role on while battling bladder cancer myself. When the call came and my mom asked me for help, I honestly did not know if I could heed the call given my health status. But I did and can now share lessons I learned about caregiving, self-care strategies and the essential supports that were necessary to navigate the journey.
We went looking for information about Alzheimer’s dementia at the beginning of that journey and we didn’t see stories about working class, black, lesbian women with Alzheimer’s dementia like my mom. She noticed that immediately and said, “We need to write a book and tell people that we get it too.” It was in that moment that I began journaling and recording and snapping pictures so that one day, in the future, I could write a book. My intention was to write the book in the presence of and with the assistance of my mother but when she entered the last phase of this dreadful disease, that scenario would not be possible. Instead, I promised her on what became her deathbed that I would tell her story. And I have.
We had lots of struggle in our relationship before this journey. We encountered obstacles along the way related to our cultural, religious and sexual orientation; we also garnered strength from the same. I wanted to write a book that told our
truth and revealed the awesome power of love to heal and transform even the most dysfunctional relationships. The financial impacts of caregiving were certainly felt and we made some mistakes along the way. Hopefully, this book will inspire readers to figure out ways to plan for the long-term health care needs of their parents and for themselves.
Remember our loved ones are people who are sick, not people who are bad. They are people who will not get well. Compassion and advocacy are needed to help meet our loved one’s daily need for safety and care; and advocacy is needed to stave off the burgeoning healthcare crisis our aging population is facing in America. More resources, research and services are needed and thankfully there are organizations fighting with and for us. We can join them. There is strength in numbers.
Lastly, I encourage people to tell your stories, especially people on the margins. Although Alzheimer’s does not discriminate, the research shows that women, people of color, especially those with diabetes, hypertension and cardiovascular conditions as well as people with poor access to health care, are more at risk. Heeding the Caregiver Call puts a spotlight on all of these salient economic, political and social issues. That perspective comes from the career social worker in me. Heeding the Caregiver Call is a grief journal turned published book. I wrote it for caregivers; you could read it from cover to cover or pick and choose the chapters that will be most helpful to you in the moment. Ultimately, I hope I inspire you to think about telling your story too. It may bless somebody.
Purchase Heeding the Caregiver Call: The Story of Barbara Ella Milton, Sr. and Alzheimer’s Disease on Amazon
Editor’s Note: With our deepest sympathies and great sadness, we must add that Barbara passed away on October 9, 2023.
About the Author
Barbara Ella Milton, Jr., PhD, LCSW, a clinical social worker, clinical supervisor, social work educator, child welfare advocate, activist, social media producer and resilience expert was an impactful social change agent for the wellness of at risk youth and families for decades. She was a contributor to the Confessions of a Welfare Momseries, co-authored the book The Great Pause: Blessings and Wisdom from COVID-19 and penned an Opinion article in the Journal, Psychosis. She was the author of Heeding the Caregiver Call: The Story of Barbara Ella Milton, Sr. and Alzheimer’s Disease. She also collaborated on a book project for Cognella Academic Press with Dr. Deborah Brooks-Lawrence on Inherited Wisdom: Strategies to Uplift Black Youth in Education and Social Work. She wrote a column for the Jersey Journal that put a spotlight on resilient teens called Our Pride and Joy and made regular submissions of OpEd essays on social welfare issues. She produced and hosted The Dr. Milton’s Social Work Show on YouTube to educate the community at large about the social work profession and social welfare issues. She was an adjunct professor at the Graduate School of Social Work at Rutgers, The State University of NJ, Montclair State University, Undergraduate Department of Child Advocacy, The New Jersey City University, Graduate Department of Counseling Psychology, Touro College, Graduate Department of Social Work and Hudson County Community College, Undergraduate Department of Human Services. She was the past chair of the National Association of Social Workers, NJ Chapter, Hudson County Unit and the New Jersey Chapter of NASW’s 2014 Social Worker of the Year. She was born in Camden, New Jersey, as the only child of Barbara Ella Milton Sr., who died from Alzheimer’s in January 2019.
