Gone but Still Here went through many incarnations before finally being published.
The first draft was completed in 2016, a few years after my partner was diagnosed with dementia. Initially, I imagined this novel as YA fiction, told through the voice of my golden retriever, Sage, and her upright (human) Jesse. Both boy and dog had their lives turned upside down when Gran, diagnosed with Alzheimer’s disease, moved in with them. Using animals to help tell a difficult story was a style that had served me well for my previous three books, so I embarked on it again, aiming to raise awareness about two topics: Alzheimer’s and pet therapy.
As my partner deteriorated, I assumed the role of full-time caregiver. This wasn’t a role I expected, and it certainly didn’t come naturally to me. I struggled with the reality that he had a degenerative brain disease. I found myself resentful about having to make decisions for both of us, as well as taking on all the work around the house and farm. It was exhausting and overwhelming, and without him as a sounding board, I felt alone. So much for the golden years!
At a course for caregivers, I was encouraged to do something for myself each day. For me, that was writing, but gone were the peaceful hours immersed in a world of make-believe. The interruptions were constant. I could only find a few minutes of peace and quiet at a time! My anxiety and frustration went through the roof.
The full gamut of my emotions is displayed in the entire cast of characters, especially in Kayla, who, despite her desire to do the right thing, flips back and forth between unconditional love and resentment, with occasional meltdowns followed by bouts of guilt. I would like to say that I reacted like Sage … with unconditional love, but I often didn’t. If you are just starting out on your journey with dementia, please know that all these reactions are normal, so don’t beat yourself up. Caregivers for dementia patients have a higher death rate than caregivers for all other conditions including cancer, often dying before their partner. So look after yourself. I almost left it too late. I started having transient ischemic attacks which affected my own cognition. Only then did I put Feroze, my partner, into long-term care.
After that, the manuscript quickly outgrew the YA format and matured into adult fiction—my own fictionalized memoir. I gave Gran a first-person voice, enabling the reader to get inside her head as she deals with confusion and failing memory. And I made her an author determined to write her own memoir. With just a tad of dramatic license, Gran’s written memoir is my own — both of us trying to tell our stories before it’s too late.
Does Keith visit Gran to comfort her during this difficult time in her life, or is she having delusions that are so common with dementia? You can decide.
Jennifer Dance is an award-winning and bestselling author, playwright, and composer. She is also caregiver for her second life partner, who is journeying through the decline of Alzheimer’s. Jennifer lives on a small farm in Stouffville, Ontario. Learn more here.