"The face of Alzheimer's disease has to change," says Wynne, who leads another support group. "It's not the 80-year-old sitting in a wheelchair who needs to be diapered. These are 40- and 50-year-olds who still function. They can bathe. ... They can go food shopping. It's not your grandmother."
The families of younger Alzheimer's patients face different challenges. Some with the disease have children (a member of Wynne's support group has two kids, ages 9 and 13). Many have relied on two incomes and have difficulty taking the financial hit that comes when the patient can no longer work. The healthy spouse may leave, unable to face what is coming.
When Dorothy Frohder was diagnosed more than 18 months ago, the doctor told her she should no longer drive. Though torn, her husband just couldn't take away the keys. It isn't like telling grandma she is no longer fit to get behind the wheel.
"To me, it is taking away some of her abilities to be free," Bugg said. "I want her to hold on to who she is, and being a human is having freedom and being able to enjoy life and not be locked in."
His wife's sister disagrees. She is afraid Dorothy will hurt herself or someone else. She worries Dorothy will get lost or be robbed.
"Ann begged me," Bugg said. "She wants me to get rid of the car."
Not long ago, Dorothy went to a store to return a teacup she had bought that was cracked. She called her husband, panicked. She had lost her keys. Eventually they were located, but Dorothy, by choice, hasn't driven since.
Dorothy Frohder spends much of her time isolated now. Her friends don't come by much. She can't do the many crafts that used to occupy her time; instead she just moves yarn back and forth instead of actually knitting.
One time, Ann thought it might be fun to take her sister for a manicure and pedicure. But Dorothy couldn't keep still. She kept putting her feet in the tub and then out as the manicurist tried to do her work.
"It was kind of like being with a child who is too young to do this," Ann Frohder said.
Dorothy is, her sister said, sometimes lucid, sometimes not.
"Usually not," Ann said.
