Debbie Miller’s memoir, Raising Ricky: My Caregiver Journey is a poignant, true story of resilience, love, and advocacy. Releasing in February 2025, Raising Ricky chronicles Debbie’s extraordinary journey as she navigated the tragic loss of her father, the weight of her mother’s mental illness, and the immense challenges of caring for her brother Ricky, an adult with Down Syndrome, as he faced Alzheimer’s disease.
Debbie’s lifelong commitment to her brother is an extraordinary testament to family and unconditional love.The book captures an avalanche of emotions, from grief and endearment to hope and resilience, making it a profoundly relatable and inspiring read. Debbie also shines a light on the inequities in Alzheimer’s research and therapies, offering a voice to a largely underserved population.
I had a chance to interview her to learn more about the book.
Why did you write this book? Twenty years ago, after my mother died and my brother came to live with me, I needed an outlet for decades of suppressed emotional baggage. Formal counseling was never a comfortable option for me, but journal writing had been my go-to panacea for releasing complicated feelings.
What are the complications of getting adequate Alzheimer's care for people with Down syndrome?
I have found that the general medical community are not aware of the prevalence Alzheimer’s disease, are ill-equipped in assessing their cognitive decline or behavior issues.
Why is it important to talk about the emotional challenges of caregiving, particular caregiving for people with multiple or complex needs?
When my brother was first diagnosed, I was lost, without a compass or map to navigate this dementia journey. The caregiver training class and support group became my life preserver as I was drowning in despair. I found these support services were crucial in giving me effective tools in managing challenging behaviors.
What are some of the logistical challenges of providing care for adults with Down syndrome and Alzheimer's, and where can people go for support?
Unless there is a Down syndrome center in your city, it’s very difficult. Neurologists do not have the specific tools to assess the adult with Down syndrome cognitive decline. I found my resources through Elder Options.
And since there has been little research or no clinical trials for this population, there are no approved medications for them.
I wrote a blog post on this issue-“The Illusion of Inclusion”. I have advocated for
We had to fight for access to education, now we fight for access to treatment.
This population deserves attention-their lives are just as worthy.
Making the decision to place my brother in a long term facility was the hardest of my life.
As a retired nurse, Debbie brings a nuanced understanding of patient care and the healthcare system. She’s also undertaking an intensive course on Alzheimer’s research in Down syndrome, equipping her to discuss cutting-edge developments in this field. Debbie participates in a network of over 150 trained professionals advancing clinical research, patient care, and policy. Her advocacy connects her to thought leaders and resources that amplify her voice on these critical issues. Debbie is also working on her second book, The Delusion of Inclusion: True Stories of the Ignored but not Forgotten, which expands on her mission to bring national attention to underserved communities.
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