Vicki Tapia published a memoir in early 2014 detailing the painful journey she took as a caregiver to a mother with Alzheimer’s disease.
“Somebody Stole My Iron: A Family Memoir of Dementia” also documented her father’s Parkinson’s diagnosis and the related dementia. She wrote the book to give others what she didn’t have at the time.
“When I was going through this I couldn’t find any books,” Tapia said, sitting at her dining room table. “I wanted to read what another caregiver was going through, not just medical books. I was looking for an author’s personal stories.”
About a year later, she got an email from Jean Lee, author of “Alzheimer’s Daughter,” a memoir that told how she cared for her two parents diagnosed simultaneously with Alzheimer’s.
“We had instant sisterhood,” Tapia said.
They were soon joined by Marianne Sciucco, a registered nurse from Upstate New York who had cared for hundreds of dementia patients over the years. She wrote a novel, “Blue Hydrangeas, an Alzheimer’s Love Story,” about an older couple dealing with the memory-robbing disease.
Realizing there’s strength in numbers, the trio started promoting their books together online, on Facebook and Twitter. Eventually three other authors joined the original trio. They include:
- Kathryn Harrison of Toronto, whose mother suffered from early-onset Alzheimer’s. Harrison has written a children’s book, “Weeds in Nana’s Garden.”
- Ann Campanella, whose mother was diagnosed with Alzheimer’s while Campanella was dealing with infertility. She wrote a memoir, “Motherhood: Lost and Found.”
- Irene Frances Olson, daughter of a father with Alzheimer’s, who wrote “Requiem for the Status Quo.”
The six women created and maintain a website, AlzAuthors, as well as run social media pages to get the message out. It’s a labor of love, Tapia said.
“We spend so much time as volunteers because we feel such a strong commitment to connecting authors with readers who are caregivers or simply care,” she said.
By 2016, the group decided it would be fun to bring some other authors on board, Tapia said. They started a blog.
The team recruits other authors with related books, as well as bloggers, to write essays that appear monthly on the website. The guest authors featured on the website have written memoirs, novels and some caregiver guides.
“And we’ve got some children’s books, how to talk to your children about their grandparents,” Tapia said.
Since the website began featuring authors, a total of 159 essays have been published. They are archived on the website, and the essayists’ books are broken into categories — memoirs, caregiver guides, fiction.
“We have become so well known that authors started reaching out to us, sending three to five requests a week,” Tapia said. “We’re booked through June 19, 2019.”
They have also taken part in conferences. In August, Lee and Campanella spoke at the Alzheimer’s Association Dementia Education Conference in Charlotte, North Carolina. Other AlzAuthors donated more than 60 books for the gathering.
Then, one of the bloggers they work with wanted all six to attend the National Caregiving Conference Nov. 8-11 in Chicago, and she paid $650 for their exhibitor table. She called the women of AlzAuthors “accidental entrepreneurs who created a niche that didn’t exist before,” Tapia said.
While Tapia, Lee and Sciucco met in person relatively early on in their relationship, up until November the six women had been in touch only through the Internet. The conference was the first time all six met up.
“When you’ve only seen someone in 2-D and suddenly they’re in 3-D, you want to keep touching them,” Tapia said. “They’re actual living people. It was incredible, unlike any other experience as far as coming together. There were lots of hugs and smiles.”
Tapia has also experienced a connection with other people she’s come in contact with, often caretakers of parents and spouses of those suffering from Alzheimer’s or dementia. When someone tells Tapia that that person’s mother has accused them of stealing from her, Tapia nods her head in understanding.
“It’s a really hard journey,” she said, her eyes welling with tears. “It’s a really crummy disease. “Even though my mom is dead 10 years and my dad nine years, it’s still a tender place.”
To continue getting resources out to people, Tapia and the other five AlzAuthors have put together “An AlzAuthor’s Anthology” that will feature 58 of the essays that have been featured on the website. It’s available on amazon.com.
Tapia loves that in searching for authors to feature on the website, she has met authors from around the world. She’s talked to authors from Turkey, Israel, Australia and many other countries, as well as around the United States.
“When we meet these people we establish a bond with them, a connection,” Tapia said. “I’ve met so many wonderful people through this.”