Making sense of Alzheimer's
Monica Vest Wheeler attended Alzheimer's support group meetings for two years — sometimes crying, sometimes laughing — to document a process of mental decline few people outside immediate family members witness.
She had to receive special permission to attend the group meetings at the Alzheimer's Association Central Illinois Chapter in Peoria, Ill., because neither she nor a family member was suffering with Alzheimer's. She attended because she was researching a book.
“We took a vote,” said group member Molly Mazzola, whose husband, Joe, has Alzheimer's. “All hands went up, and then Monica walked into our lives. Oh, my.
“She walked into that Alzheimer's Association center like an angel. She's quiet. She observed. She studied our faces. She took what she learned and used her beautiful writing to create a masterful book that tells a true story.”
“Alzheimer's, Dementia & Memory Loss: Straight Talk for Families and Caregivers” was published earlier this year and is the second in a series of coping books Wheeler has written. More books in the series are in the works.
“I learned through this Alzheimer's experience that people don't want candy coating. They want to know what is facing them and what they need to know to get through the next stage. It's helpful to see this disease through more than just your own experience,” she said.
“The book was based on two years of work, dozens of one-on-ones and support group meetings. After a while, I just became one of the group.”
The years spent working on the book created a synergism between Wheeler, the Mazzolas and Lee L. Morgan, former chairman and CEO of Caterpillar Inc. Ramifications of this intersection are helping families throughout central Illinois and beyond negotiate the journey through Alzheimer's disease.
Molly Mazzola, 68, walked into her first support group meeting “terrified.” It was in a crowded room at the Alzheimer's Association Central Illinois Chapter. Within minutes, she knew she was in a safe place with kindred spirits.
“A lot of people don't want to go to a support group. It used to be hush-hush stuff. But it doesn't go away. The magnitude only gets worse,” she said. 'When the (baby) boomers hit 65, one in seven will be diagnosed with memory loss.”
According to the Alzheimer's Association, 10 million U.S. baby boomers will develop the disease. That is double the current number of five million nationwide.
Love and human nature work against early diagnosis of Alzheimer's, Mazzola said. Early signs that something is wrong are easy to ignore or rationalize.
On top of that, her husband has a wonderful sense of humor and was able to make fun of his memory loss in a way that normalized it.
The Mazzolas participated in a number of support groups over the past four years since Joe was diagnosed with the disease. Unfortunately, they were finally told their group could no longer meet at the Peoria chapter because of limited space and the need to make room for new families just learning about coping with Alzheimer's.
Molly Mazzola said the group continued to meet once a month for dinner, but they all felt the loss of regular group sessions.
That's where Caterpillar's former chairman and CEO fits into the picture.
Several months ago, the Lee L. and Mary Morgan family gave $1 million for Alzheimer's program development and research. Of that, $760,000 went to the Central Illinois chapter and $240,000 went to research by Dr. Ken-ichiro Fukuchi who is working on the Vector Vaccine to fight Alzheimer's disease at the University of Illinois College of Medicine at Peoria.
The chapter's executive director, Nikki Vulgaris-Rodriguez, said the gift allowed the offices to expand from 4,800 square feet to 7,900 square feet. With that expanded space, the Mazzolas’ support group could be invited to return.
“It's hard to meet someone not touched by this disease,” Molly Mazzola said.
She and Joe, 80, have been married for 42 years. They sat at their dining room table recently for coffee, muffins and fruit. She poured his coffee and served him half a banana-nut muffin.
Though his memory is gone and his brilliant blue eyes are sometimes vacant, his smile is frequent.
“I've become your buddy, and sometimes you don't like your buddy and you tell me to go away,” she said to him.
“One day Joe was outside early monkeying with the hose, trying to reattach it. I asked him what he was doing.
“‘What difference does it make?' he said. ‘I'll get it fixed, and why are you always around when I don't want you?'”
“I said, ‘Because you're lucky, Joe.' Well, that name stuck and people in our support group now call him Lucky Joe.”
Clare Howard can be reached at 686-3250 or email@example.com.