Heartbreaking, doesn’t do justice to the story of a Minnesota family who were included in last night’s CBS’ 60 Minutes broadcast, which focused on a little known brand of dementia called frontotemporal dementia.
It’s not Alzheimer’s; it focuses on a different part of the brain. It strikes people under 60. It steals their humanity, the thing that makes people who they are.
Amy Johnson and her husband Mark settled in Windom, Minn., after they were married in 2006. They have four young children — three boys and a girl.
Three years ago, Mark started showing one of the symptoms of the disease: he stopped caring.
Amy recalls a day when she left Mark in charge of their sons, then three and two, only to come home and find the boys playing outside, alone by a busy street, while Mark sat inside watching TV, oblivious. On other days, he began to display compulsive behavior she had never seen before.
Amy Johnson: He couldn’t stop eating. I started locking the food up. He would walk down to the grocery store and buy more. I took his credit card. He’d walk down to the grocery store and steal food.
Bill Whitaker: And these changes that you saw, did you ask him, “What’s going on?”
Amy Johnson: Yeah. And he just said, “Oh, I don’t think anything’s different, is it?”
It was. Mark began making inappropriate remarks to a female co-worker at the company where he worked as a manufacturing engineer.
Bill Whitaker: He was fired?
Amy Johnson: Uh-huh (AFFIRM). And his reaction was, “Oh— oh, I guess okay. So what’s for supper tonight?”
Bill Whitaker: What was your reaction?
Amy Johnson: I was just devastated. I was seven months pregnant at the time with our daughter.
Mark now lives in a facility an hour away from Windom. It costs $7,000 a month to care for him. Out of pocket.
“He would be devastated to know that that’s where his retirement savings are going and that they’re not going to his family,” his wife says.
“You have a partner who is no longer a partner,” reporter Bill Whitaker said in an interview. “Amy, for one, is so compassionate and so involved and so determined to give him everything she has that she’ll never give up on him.”
He’s been given two to five years to live.
Mark is 40.
Related: From Bizarre Behavior to Dementia Diagnosis (Next Avenue)