Washington — When Elana and Jolie Cohen visited their great-grandmother in Gaithersburg, Md., recently, she greeted them with a gleeful "Oh, my girls! My girls!"
But what followed wasn't a typical chat. Their great-grandmother, Barbara Rukovina (whom the girls call Mucker), usually makes no sense. She doesn't remember their names. Often, she doesn't seem to know where she is.
Rukovina is quickly losing her memory - and not because she's 92. She has Alzheimer's disease.
The fatal illness, which is named after a German doctor and pronounced ALTS-high-merz, kills brain cells that help people remember, think and behave.
Everyone forgets sometimes, like when you leave your backpack at school. But people with Alzheimer's lose so much of their memory that they can't remember basic things such as how to make a sandwich.
About 5 million Americans have the disease, which usually affects those older than 65. Researchers are trying to find a cause and a cure.
Rukovina's illness started three years ago. Jolie remembers when Mucker suddenly announced that she had to leave an ice cream parlor because she needed to get back to the nursing home for her wedding. (Her husband died in 2000.)
Watching their great-grandmother get worse is sad and sometimes scary for the girls. Mucker lives on a locked floor at Asbury Methodist Village - visitors must punch in a code to get in or out - because Alzheimer's patients often try to wander outside, where they could get lost or hurt.
On a recent visit, Elana, who is 8, gave Mucker a colorful placemat she had made in her second-grade class. About 10 minutes later, Mucker acted as if she had never seen it. "Oh, what's this?" she said with a pleasant smile.
Sometimes she's funny. The girls shared a giggle when Mucker turned to Elana and asked, for no reason, "Do you want me to be a dumbbell?"
Once in a while, she surprises them by making perfect sense. "Those are cute," she said, eyeing Jolie's pink Crocs.
But most of the time she's difficult to understand. Elana and Jolie smile and nod anyway. They say they don't want to hurt her feelings.
"You just sort of go along with it," said Jolie, who is 10 and in fourth grade.
Experts say such visits are key to staying close. Kids should remember that people with Alzheimer's "still love them, even if the disease is affecting them," said Peter Reed, of the Alzheimer's Association, which is based in Chicago. "They're still the person they've always known and loved, and they can still do things with them."
Jolie and Elana agreed. "I still love her," Elana said of Mucker. "She's part of our family."
Facts and tips about the illness
The brain's workings
Your brain has three main parts. 1. The cerebrum is involved in thinking, feeling, remembering and problem-solving; it also controls much of the body's movement. The cerebrum has a wrinkled gray surface called the cortex. 2. The cerebellum controls coordination and balance. 3. The brainstem manages automatic responses such as breathing and heart rate. 4. An adult's brain has about 100 billion nerve cells (neurons) that connect like trillions of tiny tree branches. Neurons are the main type of cell destroyed by Alzheimer's.
Alzheimer's patients live an average of eight years with the disease, though some live much longer.
The earliest changes might begin 20 or more years before diagnosis. At this stage, thinking, learning, planning and memory are starting to be affected.
The mild-to-moderate stage of Alzheimer's usually lasts two to 10 years. Speaking and understanding what others are saying might be affected.
The severe form of the disease might last one to five years. Because of cell damage, the brain shrinks, patients can't communicate and they fail to recognize family and close friends.
What to do
If a relative or friend has Alzheimer's:
¢ Learn about the disease so you will know what's happening and what to expect.
¢ Know that even if the person forgets a lot, he or she still feels your kindness.
¢ Do things together to stay close. Blow bubbles. Go for a walk. Read to him or her.
¢ When you're with the person, make sure you stay safe. It's not a good idea to have him or her drive you somewhere, for example.
¢ If it's a grandparent who is sick, remember that your mom or dad might be really stressed out from caring for that person.
For more information, go to www.alz.org and click on "Living With Alzheimer's" and then "Just for Kids & Teens."
Written for fourth- through seventh-graders, these books look at how kids and teens are affected by a loved one having Alzheimer's.
¢ "An Early Winter," by Marion Dane Bauer. An 11-year-old boy must learn to accept his grandfather's illness.
¢ "Horse Whispers in the Air," by Dandi Daley Mackall. A teen-age horse handler has enough to worry about without her grandfather wandering away in the middle of the night.
¢ "The Graduation of Jake Moon," by Barbara Park. His grandfather's decline embarrasses a boy and strains his friendships and family relations.
Man behind name
Alois Alzheimer was a German physician. In 1907 he wrote about the abnormalities he had found while examining the brain of a woman who died after developing severe memory loss and other problems with thinking and speaking.
After more research was done, another doctor suggested naming the disease after Alzheimer.
Source: Alzheimer's Association
- The Washington Post