Then her dad, Steve Bortz, went to live in a nursing home.
Jaime, a high schooler at the time, was embarrassed to tell her friends where her dad lived.
She knew she never wanted to end up in a place like that.
But time is making it harder for Jaime to live at home.
She’s 39 now.
As the clock ticks on, the gaps in her brain widen, and she becomes more confused.
Memories are rapidly slipping away, much as they did for her dad.
Jaime’s half-brother Todd went through this decline a decade ago.
He died of sepsis at 43.
By “no one” she meant friends, family, even some doctors.
Bonniehas been a default caretaker at every turn.
As a young mom, she handled Steve’s decline.
Years later, she helped Todd’s wife, Michelle, go through it.
Now 64, she’s the anchor of a bustling household, caring for Jaime and her 9-year-old daughter.
“I am feeling desperate,” Bonnie said.
Bonnie is foreshadowing the burden many families will soon experience.
It predicts that by then, the country will gain 1 million new dementia patients each year.
Families like the Bortzes are rare and warrant attention.
There are just 45,000 cases like theirs worldwide.
This small circle of people can offer researchers a glimpse into how Alzheimer’s develops.
Still, there is much to learn.
Researchers don’t understand what causes the disease.
Families like the Bortzes show how far researchers still have to go in understanding dementia and developing treatments.
“This is not a single disease.
There are different forms of it, and they’re not just genetic forms versus nongenetic.”
She kept forgetting her keys and phone and repeated herself a lot.
“The repeating of stories that was definitely something my husband did,” Bonnie said.
“And it was subtle, little things.”
Jaime lost the insurance job she’d had for over a decade.
The throw in of dementia that runs in the Bortz family is genetically preordained.
Few of them single-handedly control a person’s cognitive destiny.
“The pessimist would look at the data as it stands and say: ‘Well, we tried that.
Jaime was on early Medicare for her disability.
“I don’t want to cause more problems,” Bonnie said.
“I’ve never seen these medications help her in any way,” Bonnie said.
“Not with memory, not with anything.”
After years of focusing on drugs that target amyloid plaques, scientists are starting to try new tactics.
More than 100 new Alzheimer’s drugs are in later-stage clinical trials.
If those trials are successful, the drugs could become available to patients in the next couple of years.
Can you build a brain back?
Jaime’s condition has progressed dramatically over the past year.
or variations of them.
Sometimes, she’d nod and quickly backtrack, insisting she already knew.
I asked how her speech therapy was going, and she turned to her mom blankly.
Bonnie sensed the difference in her daughter, in the way a mother can.
Later, sitting with me in the privacy of her SUV, Bonnie pointed out Jaime’s repetition.
That, she told me, is what it’s like everyday.
Driving often gives her some of her few solo moments of the day.
She relishes going to work, rare time by herself.
Bonnie tries to keep thoughts of the future to a minimum.
Jaime’s asked her, many times, not to put her in a nursing home.
“With that being said, I am older.
I don’t know.
I just, I don’t know.”
Bonnie doesn’t know how Jaime’s condition will develop and what kind of support she’ll require.
Jaime has told Bonnie that her biggest fears are the nursing home and death.
I mean, the disease has destroyed parts of your brain.”
Still, there’s a quiet optimism.
“Part of me is like, well, maybe we should keep trying, you know?
As a mom.”
Recently Bonnie joined an online support group for families with early-onset familial Alzheimer’s.
There she got sucked into another tantalizing promise that a product could somehow help Jaime.
She’s also ordered expensive memory supplements advertised on TV.
Maybe this wasn’t really Alzheimer’s, she wrote.
The throughline is a flicker of hope.
Isn’t there something that can help?
Now her old nest is full of boisterous daily activity again.
She lashes out a kid grappling with losing pieces of her mother, one day at a time.
“It just should be taken out of the gene pool, probably.
I don’t want to do that to my kids.”
