Sometimes it's hard for Justin Petek to remember when his Grand-mother Mimi still baked her special walnut rolls, or played hide-and-seek with him.
It's even harder for the 9-year-old to forget the smell of a nursing home, the scary faces there, his mother's tears. He doesn't want to remember his grandmother, Mildred Otto, as she was in March, when she died at age 87.In his mind, her face still breaks into a broad grin as she sees him, the youngest of her nine grandchildren. Forget that she didn't know his name anymore, or exactly who he was.
She was among the hundreds of thousands of Americans with some form of dementia.
"We encourage families to be real honest, and to attend support groups," said Jon Kaupla, education coordinator for the southeastern Wisconsin chapter of the National Alzheimer's Association. "A growing number of people are in the 40s and 50s, and still have young children when the disease is first detected. How to stay connected as a family is becoming a real issue."
In colorful but revealing drawings a year ago, Justin recorded his memories of the grandmother who had become more like a stranger as Alzheimer's, an irreversible neurological disorder, progressively clouded her mind.
Last spring, his 14-page book won a special merit award.
But the highest honor came in March, when Justin's mother, Patty Petek, read his book during Petek's eulogy of her mother at a memorial service.
Justin wasn't looking for honors. The book simply was his way of sorting out the good from the bad, and remembering the grandmother who had been such a big part of his life.
"I guess the idea for the book started that first day we went to the nursing home to see her," recalled Patty Petek, a reading teacher at Madison Elementary School in Wauwatosa, Wis.
"Justin told me: `Mama, I don't want to go back there. I'm afraid.' And I told him `Jus, I don't like to be there either. Sometimes I hold my nose. And I wash my hands a lot when I get home."
In the next months, many of Justin's drawings decorated the walls of his grandmother's room at the nursing home. But it is the book that reveals how Justin came to accept the changes in his grand-mother.
"My Grandmother Mimi has Alzheimer's Disease. That means she has a hard time remembering," Justin begins his book.
Otto was 80 when the first signs appeared. Initially, she forgot names or repeated herself, Patty Petek recalled. Her body remained strong, but her mind progressively deteriorated.
"In the beginning we just thought it was her age," Petek said. But there were other telltale signs.
Otto thought the washing machine was broken, but she had forgotten how to use the knobs. She couldn't bake the favorite walnut rolls that she always had made from memory. She would wear her shoes on the wrong feet.
Petak's sister, Carol Lenz, a nurse who works at a nursing home, first recognized the disease's pattern.
Mildred Otto went to Froedtert Memorial Lutheran Hospital for a geriatric assessment, which ruled out other causes; her husband, Roy, never accepted that his wife had a progressive, incurable illness.