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- Health & Fitness, Diseases, Alzheimer's & Dementia
- Biography & Autobiography, Medical
- Family & Relationships, Aging
Alzheimer’s, dementia, home hospice, family and relationships, love, long-term care, coping
Brilliant Bob - My Husband with Alzheimer's Disease
Our Love Story
This book is about our life before and after Alzheimer's Disease invaded and how, over the subsequent ten years, we did our best to fight, learn, adjust and live with this heinous disease as it progressed. Using the Seven Stages of Alzheimer's Disease as the framework, I describe our experiences, some strategies we tried, what we learned from a variety of sources, our dilemmas, fears and honest feelings. Our story is about love and resilience, but also about the frustrations of finding appropriate services, financial constraints, the limits of Medicare and Medicaid, the ins-and-outs of the nursing home industry, and our search for what was right for Bob as the disease overtook him.
Bob had a PhD in Experimental Psychology, but that didn't stop this disease from destroying his mind. I have a PhD in Special Education, but that didn't mean I knew what to do or how to do it. Through personal journal entries at various times, I share my thoughts, feelings and my anguish. I learned with Bob, and with the help of family and friends, how to support and care for him so that he knew that we would always love him. This was not an easy story to tell, but I hope it helps others.
I retired from teaching at the State University of New York (SUNY) at Cortland in 2005 when Bob was diagnosed with Early Onset Alzheimer's Disease. My PhD in Special Education was earned at Syracuse University, where I also worked at the Center on Human Policy with people with disabilities and their families. Previously, I coordinated a program at a community college for adults with developmental disabilities. After graduating from undergraduate college in 1964, I taught high school Health and Physical Education. Later I earned a MS degree in Health Education and worked as a public health educator for a county health department.
My three children, two of whom are adopted, and four grandchildren have taught me a lot about life, love, and being strong. My adoped children, now adults, are multiracial, and one has Autism.
In my spare time, I like to write, read, walk/hike, and sew. I am a strong advocate for disability rights and improved personalized elder care.
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