In dementia's grips, a couple holds onto what they know

They married in 2011 on a beach in Key West and sailed the Caribbean. But then he began showing signs of dementia. "He's losing the reins of his mind," she says.

Published August 10 2017
Updated August 11 2017

PINELLAS PARK — Mike Hopper was trying to remember British territories.

The woman at the whiteboard scribbled answers as the people around Mike shouted, in between sips of coffee and bites of bagel.

"Bermuda!"

"Falkland Islands!"

A dozen people had come for a memory cafe in Pinellas Park, where they could be around others in the grip of maladies like dementia and Alzheimer's that rob them of themselves.

The activities were supposed to help them remember things, to keep their brains nimble. The theme for the day was England. They fumbled for Shakespeare and John Donne in the recesses of their fraying memories. Some squinted as they tried to keep up. Others looked lost, a little vacant.

"Oh!" Mike stuck a finger in the air. The woman at the whiteboard waited. She hoped, maybe more than anyone, that Mike would get it.

Mike sighed.

"I lost it."

• • •

Mike's OkCupid tagline boasted, "I've seldom been accused of being normal." He called himself an "enginerd." He spoke quickly and had a handful of patents to his name. He was a vagabond, with a 41-foot boat and a couple of small planes. He'd spent most of his life on the move.

Cate McCarty hadn't been on a plane until she was 45. She'd never left the country. So when she looked at Mike's profile, she saw adventure.

The first time they went on a date, they hunted for deviled egg platters in dusty antique stores. In 2011, they got married on a beach in Key West.

After she finished her Ph.D, she was worn out by academia and ready to run. Mike had been talking about sailing away together since the beginning.

Unmoored, they criss-crossed the Caribbean in their beloved SV Horizon with their cats, Rosie and Oliver, scampering below deck. They island hopped, snorkeling in the Bahamas off the side of their boat. They spent almost a year and a half in Puerto Rico when their boat needed repairs, going to barbecues at the marina. They learned un poquito Spanish.

But Mike's teeming mind started to sputter and struggle in strange ways. While counting $20 bills to pay for their slip at a dock, three times he handed over a stack of money that was too small. When counting to $100, he realized he'd been skipping the number 80. It had vanished from his head.

When he tried to dock the boat, Mike started cutting the engine while they were still floating 30 feet out. To him, it looked like they were right there. His depth perception was warping.

Cate knew better than most that they shouldn't ignore the signs. What if Mike forgot how to steer at the wrong moment? Or didn't know he needed to drop the anchor and they drifted into something dangerous?

They argued about it for months. She didn't want to strip him of adventure. But she didn't want him to slip too far.

They swapped the boat for an RV and parked it in Gulfport in 2016.

Dementia isn't a disease. It's a symptom, like a fever. A warning that something essential is coming undone. And if the warnings start coming when someone is younger than 65, it hints at a more aggressive kind of unraveling. Mike is 66.

Mike talks about his brain with an engineer's detachment, like it's a machine malfunctioning. If he could, he'd carve through his own cortexes to hunt down the problem.

They got a tentative diagnoses in December. Frontotemporal dementia. The nerve cells in the front of the brain — the ones that govern language and inhibitions and personality — wither and decay.

"He's losing the reins of his mind," Cate said.

• • •

The woman at the whiteboard smiled at her husband.

In her career as a dementia coach, Cate has helped people try to hang onto themselves while dementia looms. But it's wholly different to apply her professional knowledge to her husband, herself.

She knows so much that it overwhelms her, all the darkness that's ahead of them. How his brilliant mind will betray him in little ways, then bigger ones that could put him in danger. How he'll eventually need care beyond what she can give him. How she'll have to work past retirement to pay for it. How he'll probably get so clingy when it gets worse that she'll be unable to go to the bathroom with the door closed, because it would make him feel cut off from her.

Cate, 58, started memory cafes around St. Petersburg a year ago, after they came back from the Caribbean. At first, Mike didn't engage with anyone, just helped set things up and sat silently in the back.

But in the past few months, he'd opened up. Cate saw him commiserate with men whose wives wanted them to stop driving. He listened to the prattling of a man whose disease splintered his words into unintelligible jumbles. Now, he's so active in the memory cafe activities, his mind still so sharp, people say they'd never know he has dementia.

He needs Cate to tell him when he strays or stumbles.

Mike frowned at the table.

"There's a hole in my mental map of South America," he joked.

Minutes later, the topic shifted to English monuments.

"Salisbury Cathedral!" he said. "Constructed in 1300!"

Cate broke into a smile.

"How do you know stuff like that?" she asked, writing it on the whiteboard.

He shrugged and grinned back at her.

"Just do."

Contact Taylor Telford at (513) 376-3196 or ttelford@tampabay.com. Follow @taylormtelford.

 
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