My novel, Blue Hydrangeas, is the story of a pair of retired Cape Cod innkeepers struggling with Alzheimer’s disease. A nursing facility is everyone’s solution for what to do about Sara, but her husband, Jack, can’t bear to live without her. He is committed to saving his marriage, his wife, and their life together from the devastation of Alzheimer’s disease.
Jack and Sara retired years ago to the house of their dreams, and operated it as a Cape Cod bed and breakfast named Blue Hydrangeas. Jack has made an impossible promise: He and Sara will stay together in their beautiful home no matter what the disease brings.
However, after nine years of selfless caregiving, complicated by her progressing Alzheimer’s and his own failing heart, he finally admits he can no longer care for her at home. With reluctance, he arranges to admit her to an assisted living facility, but on the day of admission, Sara is having one of her few good days, and he is unable to follow through. Instead, he takes them on an impulsive journey to confront their past and reclaim their future. In the end, he realizes that staying together at any cost is what truly matters.
So many readers have asked how I was able to write from Sara’s point of view. After all, she has advanced Alzheimer’s. How could anyone know what it is like to live with dementia?
Writing Sara’s point of view was tricky because her Alzheimer’s is portrayed in different stages, from the very earliest phase to advanced disease. Fortunately, as a nurse with years of experience working in both hospitals and nursing homes, I had a lot of practice working with dementia patients. I relied on my interactions with my Alzheimer’s patients to form Sara’s point of view.
Still, I could only guess what was going on in their heads. So many were unable to articulate ideas, words, memories, anything. Yet many could participate in simple conversation, and made pleasant conversational partners, such as the lovely woman I met while working in a hospital rehabilitation unit who inspired this character. My interactions with these patients and their families formed the backbone of my novel and the creation of its characters, especially Sara.
But in order for me to actually get into Sara’s head, I had to do some genuine research about what types of cognitive disabilities people have during the different stages of Alzheimer’s. I read many self-help books, for example The 36-Hour Day; novels, including The Notebook, by Nicholas Sparks; and memoirs, such as Iris, by John Bayley, and The House on Beartown Road, by Elizabeth Cohen, all excellent books.
An invaluable resource was Thomas DeBaggio’s Losing My Mind. DeBaggio, a career newspaperman and renowned herb farmer, developed the disease and actually wrote a book while in its early stages, describing what he was going through. This is perhaps the only book that discusses Alzheimer’s from the patient’s point of view and created a public record of, and insights into, his decline. His book was very insightful for me and helpful in coming up with Sara’s perspective.
Recently, I stumbled upon another amazing book, My Mom, My Hero, by Lisa R. Hirsch, based upon her internationally popular blog, which confirmed my portrayal of Sara’s disease is accurate.
I also surfed the internet, browsing through such obvious websites as the Alzheimer’s Association, the Alzheimer’s Foundation of America, and the National Institute on Aging. I also discovered some other not-so-well-known sites – The Alzheimer’s PoetryProject and The Alzheimer’s Prevention Registry, both excellent sources.
In the end, though, it all came down to imagination, for even after all of my reading, the research, the interviews, and the intimate care of those living with this disease, I could only imagine what it is like to be in its throes.
They say Alzheimer’s disease is the fastest growing threat to health in the United States. I pray for a cure, and a future without it.
This post originally appeared on Literary Lagniappe.