Helping kids cope with dementia

Joseph Voigt is learning about the ravages of Alzheimer's disease, the need to "turn the other cheek" and the book publishing world at an age when most kids would rather be outside playing soccer.

The 11-year-old's great-grandmother, Dixie Morton Vaughn, has had Alzheimer's disease for eight years. For the past four years, Voight's mother, Kathy Phillipson, has cared for Vaughn and her 78-year-old grandmother's slowly progressing disease at their Manor Drive residence.

"It's taught me to love one another no matter how you look or act," Joseph said. "It's just brought me closer to my family."

Two years ago, Joseph began writing a journal detailing his thoughts and experiences with Vaughn's Alzheimer's. His family is a member of the Church of Jesus Christ of Latter-day Saints, which teaches the value of keeping records and diaries, so he learned the skill at an early age, Phillipson said.

Joseph compiled his most poignant thoughts and experiences with Vaughn into a hand-written book, "My Grandma has Alzheimer's too."

"There aren't any books out there for children about Alzheimer's that's written by a child," Phillipson said. So she guards hope they can find a publisher for the work.

"My Grandma came to live with us," Joseph begins his story in hand-lettering of different colors. "It was hard. These are the things I've learned ... "

The book goes on, with misspellings that add to its charm:

• "When they get mean, speak softley and lovingley. Distract them by offering them one of there things. Like ... Grandma, 'Do you want a piece of pie?'"

• "One of the hardest things is to share your parents. We half to learn not to be selfish!"

• "The things your grandparent does now, is not who they once were. It's so hard to remember ... It's not their fault."

• "Don't be afraid to cry. It's okay to say ... I hate Alzheimers disease."

The advice comes from years of living with the incorrect perceptions and memory loss that Alzheimer's has brought to his great-grandmother. For example, when Joseph plays with his 2-year-old brother, the toddler will laugh and "she'll think I'm hurting him," he said.

"It's not her, it's the disease," Joseph said - though he admits it's still difficult to deal with.

"She's basically a real sweetie," Phillipson said of her grandmother. "Eighty-five percent of the time she's OK, but 15 percent she's not. ... He gets told to turn the other cheek a lot."

"It gets worse when you're not around," Joseph said to his mother.

He had turned the other cheek in the early years when his mother told him he couldn't play sports because the family needed his help caring for Vaughn. But in the past couple years, with coaches and friends helping Joseph get to practices and events, he ran track and played soccer, Phillipson said.

His next job is to get his final version ready for the editor, including cleaning up the spelling, she said.

Phillipson and her son have yet to sign a contract, but they are considering a deal with a Pennsylvania-based company that requires them to put up $4,500 initially.

ooo

To contact Staff Writer Greg Moberly, e-mail gregm@theunion .com or call 477-4234.