June is Alzheimer's and Brain Awareness Month. Once again I am teamed with AlzAuthors to help raise awareness of this disease. More than five million Americans are living with Alzheimer's and all of them have loved ones and caregivers also affected. It's the sixth leading cause of death in the United States. Every 66 seconds someone develops it. Yet as a society we have difficulty talking about it. Sometimes fear stops the conversation, Sometimes shame. Sometimes grief. AlzAuthors exists to start a conversation about the experiences of those living with dementia. To provide caregivers with knowledge, support, and an outlet to express their own stories. Here we each discuss how secrets, stigma, silence, and/or reticence have affected our own experiences.
Secrets, by Jean Lee
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 Isought 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 contained 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 Dad Gasby’s Before I Forget as well as Kimberly Williams Paisley’s Where the Light Gets In. When each of us tell our stories and combine our voices, we form a large pool of collaborators offering resources, support, understanding, and empathy.