A Woman With a Rare Gene Mutation Fights to Avoid Her Mother’s Fate

When Linde was growing up in a leafy neighborhood in Eagan, a Minneapolis suburb, her mother burst with creativity. Allison wallpapered, tiled floors and built a koi pond with a waterfall in the backyard.

But life inside that well-tended house was not so serene. Linde and her two sisters sometimes huddled in a bedroom, crying over their parents’ screaming matches.

Allison’s life began to crater when she was 47. Her husband moved out, Linde left for college and both of her parents died. Allison lived with her youngest daughter, Ashlyn, whose harsh teenage assessment was that stress had turned her mother “psycho.” Allison drank too much and wrote notes in capital letters. One Thanksgiving, she threatened to kill herself if the girls visited their dad.

Most embarrassing, she incessantly touched other people. During Ashlyn’s senior trip to Mexico, Allison picked and poked at the arm of another student’s father, who exploded, “Get your hands off me!”

Allison’s physician blamed menopause and the divorce and prescribed antidepressants. They didn’t help.

These unsettling changes reminded Linde of her grandmother, Bev. In her 50s, Bev had started hoarding, filling her house with newspapers, figurines and even roadkill. She grabbed others’ food and argued with strangers. She wound up in a nursing home, where she languished for a decade before her death at 72.

An autopsy found shrinkage throughout the front and sides of Bev’s brain, the hallmark of frontotemporal dementia. The report said the disease could be hereditary, but Allison didn’t reveal that to Linde, who was 18 at the time.

Years later, when Allison grew so mean, Linde couldn’t help but wonder if the problem was genetic. She left a phone message for Allison’s doctor. All these bizarre personality changes, she said. Are you sure my mom doesn’t have what my grandma had?

The doctor didn’t call her back. It was the first of many times that Linde would be let down by the people charged with caring for her mother.

Linde and her older sister, Jenica, eventually gave their mom an ultimatum: No babysitting our children until you see a neurologist. Allison acquiesced to brain scans and neurological tests. But this doctor, like the last one, said the problem was psychiatric, diagnosing stress and obsessive-compulsive disorder.

Linde felt gaslit. Was it possible she was projecting her grandmother’s dementia onto her mother?

Whatever the trouble was, it was accelerating. Allison stole $9,000 from Ashlyn’s student loan account. Minnesota suspended her physical therapy license for “boundaries issues”: She had shown up at the home of a client’s uncle, asking him to pay for a medical device.

Allison cheerfully rejected any notion that she had dementia. Without telling her daughters, she had another brain scan. She mailed Linde a copy of the results.

“There was some shrinkage of the cortex of the brain,” said the letter from the clinic, “but this is nothing to be concerned about as it is a normal process of aging.”