Grappling with Alzheimer’s Disease
Author reflects on losing her parents.
By Tom Christensen, Connection Newspaper
Thursday, July 02, 2009
When Deborah Tornillo’s parents were diagnosed with Alzheimer’s Disease in February 2006, she knew a difficult journey was ahead of her. Tornillo details that journey in her new book, "36 Days Apart: A Memoir of a Daughter, Her Parents, and the Beast Named — Alzheimer’s: A Story of Life, Love and Death."
A retired business-owner, wife, mother, and grandmother, Tornillo has lived in Sterling since 1999. While her parents were not diagnosed with Alzheimer’s until February 2006, Tornillo recalls her parents exhibiting the signs of Alzheimer’s as early as 2002. She said, "My mother kept repeating stories, I saw something wasn’t right." Tornillo eventually took her parents to a neurologist, who diagnosed both her mother and her father with Alzheimer’s Disease.
The next year, Tornillo spent her time traveling between her home in Sterling and San Antono, Texas, where her parents lived. She hired a home health agency to take care of her parents while she was home in Virginia, however she soon decided to move her parents to Virginia. "The disease progressed so rapidly," she said, "the best thing to do was to take them to Virginia."
Tornillo quickly realized that her home in Sterling was also problematic to her parents’ wellbeing. "It was the first night here that my mom disappeared right out the door," she said. After the police found her mother four and half hours later in a nearby model apartment, Tornillo concluded that her three-story town home, which presented additional problems for her wheelchair-bound mother, could not offer the security and care that her parents needed. So she placed them in a nearby nursing home, where they would receive proper attention.
THOUGH HER PARENTS were no longer living with her, Tornillo visited just about everyday, stating, "I put on hold my personal life, [and] being at home and being available to my daughters and grandchildren. Forty-eight hours a day was spent taking care of my mom and dad." When she was not with her parents, Tornillo spent much time researching Alzheimer’s Disease and death. "I spent at least an hour a day at Border’s book store," she said. "I knew my mom and dad were dying. I needed to know what to expect."
Her hours of research proved to be useful as the disease progressed within her parents. For instance, after Tornillo read that Alzheimer’s sufferers could connect with baby dolls, she bought her mother a life-like baby doll from a local Toys R Us. "You could see excitement in her," she recalled of the day she handed her mother the doll. "It was like her very own baby from that day forward."
Tornillo’s research also taught her that those stricken with Alzheimer’s disease often become aggressive, so she was not surprised when her own father began to show aggression towards her during a visit. As she tried to calm her father, who was paranoid of his caregivers, her father swung at her with his fists. "My father wanted to hit me, and that was very emotional," she said. As she got up to leave, he followed her, this time swinging at her with a broom. Tornillo did her best not to confront her father, as she had learned from her research.
AS HER PARENTS’ HEALTH continued to decline, Tornillo transferred them to a different nursing home, one that was better equipped to take care of them. Her father died soon after, following complications from a stroke he had suffered. Thirty-six days later, her mother died. "That’s the longest that my mother and father were ever apart," said Tornillo, who titled her book "36 Days Apart" for that reason. "My mother knew he wasn’t around," she said. "I truly think that’s why she passed away 36 days later."
"36 Days Apart" stands as a dedication to Tornillo’s parents, who had always encouraged her to write. "My father always said to me, ‘I wish you would write’, so that was my last gift to my parents," she said. The book was also inspired by the journal that Tornillo kept while she cared for her parents. Tornillo was grateful to have that journal, especially after her parents had died.
"I started looking back at it," she said, "it was my own therapy." She also said, "It was horrible for me because … as a child I wanted my parents to comfort me but they weren’t there to do it. That’s why I wrote the book."
Tornillo will always appreciate the last moments she spent with her parents. "I was blessed to spend the last year and a half with them," she said. "My mom and dad were everything to me when I started taking care of them."
According to Tornillo, the most valuable lesson she learned from her experience with her parents was "how to have compassion for others, [and] compassion for self." She also said that the greatest advice she can offer to those caring for loved ones with Alzheimer’s is, "It’s OK to ask for help, [and] it’s OK to walk away, because it’s a very, very hard thing to do, even for an hour. It consumes every part of your mind." She also added, "Don’t lose faith."
In light of her experience with her parents, Tornillo hopes to see a rise in awareness of Alzheimer’s Disease. "I wish that it was more common for doctors to give check-ups and screenings for Alzheimer’s on a yearly basis," she said. "I’m hoping there is more and more recognition that this is a health crisis."