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What FTD Looks Like: Part 1 – Apathy sets in

Robert struck a jaunty pose, right leg out in front of the left, body leaning in, his right index finger casually hooked forward, ready to point as he gathered to tell his story. His eyes sparkled like a three-year-old’s with a sneaky discovery…”I know a trick you don’t know!” And then he “riffed on us.” 

“Riffing on you” is the comic’s way of testing new material while pretending to be participating in whatever conversation is going on. It can be annoying. And Robert’s jokes had become “not funny.” 

Two years after the Europe incidents, Robert had stopped listening to the people around him and was often mentally absent, off on a tangent in his mind inventing comedy routines or devising a costume that would be “fun to wear downtown.” He’d riff on us incessantly.

Checked out

We attributed this to Robert’s age. He was 70. He’d lost touch with current comedy styles; he was using old-school comedy formats. But his gleeful fantasizing was beginning to wear on me. His mental absence when we needed to discuss something important strained our relationship. He was checked out. Why now? I needed Robert to man the ship.

I’m embarrassed to say that I interpreted his behavior exclusively as an affront to me. I cataloged his deficiencies as proof that I had made a poor match 33 years prior. There was very little compassion in my assessment of Robert’s “failings” at this point in our journey.

Trying to hold on

Through our years together, we’ve completed a number of DIY home improvement projects as most couples do. As was our normal routine, I would design whatever project we were working on. Robert would check my measurements and assumptions and we’d be off to the lumber yard or hardware store together.

In early 2017, we decided to build two raised bed planter boxes. In the lumber yard, we’d hand-selected all the redwood planks we’d need to build the boxes. We stood in the single, 20-people deep checkout line, waiting for a register to open up. As I contemplated whether the super-sized bag of sour gummies or the Flipz chocolate-covered pretzels would be less caloric it occurred to me I’d made an error in my calculations. We’d only picked out half of the shorter-length planks we’d need. I raised the discovery with Robert and he said, with complete indifference, “Yeah, I know.”

“Really? Were you going to say anything to me?”

“No, we’ll just come back for more wood.”

“We’ll come back?!” 

Why would we leave the store without everything we needed? (I realize the irony here. Everyone’s home improvement project will involve several trips to the hardware store…but we don’t plan these trips!) I was angry. Understand I was fatigued by his mounting nonchalance, his apathy. I was so tired of doing all the thinking. 

And I broke

Something inside me broke. I collapsed into exhaustion and made the threat that would bring reality crashing down around us. “We’re going to see your doctor. There is something wrong with you!”

My husband was diagnosed with a specific type of Frontotemporal Dementia called behavioral variant Frontotemporal Dementia or bvFTD. In the course of the disease, people with bvFTD may become apathetic. As the disease progresses, they may also experience shocking personality changes or they may lose their inhibitions and behave in socially inappropriate ways. They will demonstrate a profound loss of judgment. (Both apathy and poor judgment were on display at the lumber yard.) More often than not, all of these things will occur to some degree. The kids and I are experiencing all of these changes as Robert’s disease advances.

Getting to the bvFTD diagnosis took a long time as I’ll share in upcoming stories.

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