If you have not been a caregiver--if you’re not living with the disease, you may not understand the concept of secrets when dealing with Alzheimer’s.
If I had been an observer I would have thought, why would anyone keep a diagnosis a secret?
But I was not an observer. Alzheimer’s invaded and took over my parents’ lives as well as my own when they were both diagnosed on the same day. I was working full time as an elementary teacher, living in the same small town in which I’d grown up, when I assumed the primary caregiving, decision-making role with my 86-year-old parents. They were small business owners, my father still drove, and they lived independently in their own home.
On the day of their diagnosis my dad struggled to his feet shouting, “How dare you use the A. word with me,” as Mom wagged her finger at the doctor scolding, “Shame on you.”
We came home from that appointment and conversation about the diagnosis stopped, unless I brought it up. They denied, saying they didn’t want anyone to know, to think they were crazy, or start gossip.
To respect the parents who had given me everything, I propped them up, protected them and their dignity, while I felt immense guilt whittling everything away piece by piece: their independence, their driving, forcing my dad to retire, moving them eventually to a locked memory unit.
I did not write Alzheimer’s Daughter to come clean, be honest, or tell secrets. Through the journey I sought support by reading about personal experiences. Each time I found a similar situation, I thought, If this person survived, so will I. Keep breathing. One week after my mother’s death, when I realized my father had no memory of her or their 66-year marriage, my secrets could no longer be contained, so I wrote the book I needed to read all along. Reviewers say it is written with wincing honesty about the cruel affects of the disease, but a WWII love story held together by faith and family is revealed within the pages.
I see a new openness about the disease, especially in those touched by early onset, through books like Greg O’Brien’s On Pluto , B.Smith and Dan Gasby’s Before I Forget, and Kimberly Williams Paisley’s Where the Light Gets In. When each of us tells our stories and combines our voices, we form a large pool of collaborators offering resources, support, understanding, and empathy.