'Cancer of the soul' robbing family of wife and mother

DALLAS — Alex Brown, 15, stands with her arms crossed. Her mouth is stiff and her eyes are fixed on the floor. Her stance is one of typical adolescent distress. But her pain is much deeper.

She and her brothers are visiting their mother, Michelle, at an Alzheimer's and dementia facility in Flower Mound, Texas. Alex hates it there, hates seeing the stranger in her mom's body.

The kids don't like it in her room, so Michelle's husband, Bill, escorts her into the hallway. She shuffles out, her fingers in her mouth. You can tell she had Alex's face once upon a time, before the life left her eyes.

Wes, 18, mumbles a subdued, "Hi, Mom." Harrison, 10, gives a more enthusiastic greeting. He's too young to remember when things were different. Normal.

"Hey, Mom!" Harrison says, smiling.

Michelle jumps up and down, her clenched fists moving in circles by her sides, as though she is holding a pretend jump rope. She lets out two high-pitched yelps. Alex begins to cry.

Physically, Michelle is still here. But her family lost her years ago.

It has been three years since Michelle, 49, was found to have frontotemporal dementia, a disease that destroys the brain lobes that control social skills, abstract thinking and language.

Those who have watched loved ones suffer from the disease refer to it as "cancer of the soul." People who have it usually remain physically healthy until the illness's end stages, but mentally they are transformed. They begin acting childlike, socially inappropriate and distant. Many patients seem devoid of emotion. Eventually, they are unrecognizable.

The disease commonly affects people between the ages of 40 and 65, says Susan Dickinson, executive director of the Association for Frontotemporal Dementias. She says that about 250,000 people in the United States are afflicted by such illnesses but that many more cases go undiagnosed or are misdiagnosed as psychological disorders.

The disease has no known causes, says Dickinson. Some cases appear to have a genetic link, but others, like Michelle's, appear to strike at random.

The time between diagnosis and death ranges from two to 15 years.

The illness leaves families in an emotional limbo, stuck grieving for a person they haven't entirely lost. Which is where the Browns find themselves today.

'She was just beautiful'

Michelle, who was born in Florence, S.C., was a true Southern belle. Her clothes and hair were always immaculate, "even if she was going out to rake the leaves," says her father, Jack Hodges, who lives in North Myrtle Beach, S.C. Her mother, Betty Anne Buchanan of Ninety Six, S.C., says Michelle was "the brain in the family."