CROWN POINT — "I don't think there's a day I get up that I don't think about something going wrong."
As John Unterfranz said this, with sunlight bouncing off a nearby lake and illuminating the inside of his home, he wore a look of frustration, of worry, of resignation. But he also had reason to keep fighting. Several reasons.
"The thing that keeps me going is her," the 63-year-old said, motioning toward his wife, Jeanne, seated next to him at their kitchen table. "Also, my four kids. And the biggest one is my four grandkids."
A moment later, one of them, 4-year-old Jackson St. Germain, came down the stairs. Wearing a "Teenage Mutant Ninja Turtles" T-shirt, he started listing off what he wants to do when he grows up: A garbage man. An air-rescue pilot. An airplane pilot.
Whichever he chooses, his grandfather hopes to be there.
In 2014, Unterfranz got the news that he had early-onset Alzheimer's disease. The Times profiled him not long after. Since then, he's welcomed two new grandchildren to the world.
And while he forgets certain things and can't drive, he's still able to do most of what he could prior to his diagnosis. So life goes on, if different from before.
As America recognizes Alzheimer's & Brain Awareness Month, the number of Hoosier seniors with the disease is expected to grow to 130,000 in 2025 from 110,000 today. Indiana already spends nearly $1 billion a year in Medicaid costs to care for people with Alzheimer's, the sixth leading cause of death in the state. Caregivers gave 381 million hours last year tending to loved ones with the disease.
And with early-onset Alzheimer's on the rise, there are more and more people like Unterfranz: Those who are able to live mostly full lives but bracing themselves for the worst.
The advantage of early identification, however, is time.
"As you move past the emotions of receiving the diagnosis and getting past the nitty-gritty of care planning, we can focus on what is still possible, as well as the possibility of a cure," said Sarah Milligan, a social worker for the Alzheimer's Association in Northwest Indiana.
But at Unterfranz's stage of the disease, frustration often begins to set in.
"People become much more quiet. They don't talk as much. They may not want to go out with friends or do certain activities," said Dr. Neelum Aggarwal, a neurologist at Rush University Medical Center. "Also, activities of daily living become challenging. With the disease, the brain over time has difficulty putting things together, judging how big something is, judging orientation."
One area of hope is all the research surrounding brain disease. Unterfranz participates in a clinical trial at Rush where he receives an experimental Alzheimer's drug (or a placebo — he doesn't know) designed to slow down the progression of the disease by growing more brain cells. He's open to doing other clinical trials in the future; there are so many studies these days that researchers are desperately in need of volunteers (both with and without Alzheimer's.)
Aggarwal said the most promising studies right now focus on prevention. A possible endgame is a vaccine that would, like the flu shot, be given regularly to at-risk adults.
For Unterfranz, many of the changes so far have been minor. He spills food on himself more often. On a recent day at his Lakes of the Four Seasons home, he had trouble remembering the name of the Illinois mayor arrested in his subdivision, called his grandson by the wrong name and was going to spray a wasp with OFF! insect repellent before his wife pointed it out.
He's a proud man, so he still tries to be a handyman around the house. But he sometimes forgets how to work a tool he's used a thousand times before. So his wife helps him out.
"A couple days ago, I was real frustrated. I couldn't do something I can usually do," he said. "And the White Sox were playing terrible so that didn't help."
His wife also acknowledged he's no longer the life of the party in social settings, in part because has a difficult time paying attention to what people are saying.
As Unterfranz played toy trains with Jackson the other day, it was obvious how much joy his grandkids bring him. But even Jackson understands something is wrong, as much as a 4-year-old can.
"What does Poppa have on his brain?" his grandma asked him, as he and his grandfather splashed around in a little, plastic pool in the couple's driveway.
"Owies," Jackson said.