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Our Journey: Part 2 – Signs of trouble

We first noticed Robert’s judgment falter in 2015 during a trip to Europe with our then-15-year-old son, Jackson. My husband has always had a great sense of direction. He could easily read a map or subway guide and quickly set the course for our next adventure. But in Paris, this skill seemed to slip away. Robert couldn’t make heads or tails of posted guides or the warrens of subway tunnels we traversed. For example, in the subway system, we’d descend dank, concrete steps in tiled labyrinths, ride the train, and ascend exits banked with beautiful balustrades into the daylight. At every step, Robert complained bitterly that he didn’t know where we were.

Robert’s behavior was changed

What I found most disturbing was Robert’s response to the people around him. Normally interested in new people and skilled at learning all about them, my very social husband became angry…with everyone. Parisian drivers always encroach on crosswalks, a cacophony of horns chirping and mopeds gently rumbling, angling to beat the throngs of pedestrians in traffic. Robert found this intolerable. He would repeatedly veer outside the crosswalks on foot to wag an angry finger at them. 

I talked through Robert’s discomfort. We stood on busy corners watching the dance of pedestrians with their shopping bags, baguettes and little dogs, and automobiles braking and beeping. I assured him that what we were seeing was true in every big city everywhere. He was (mostly) safe when crossing the streets of Paris. “See the drivers don’t actually go into the crosswalks until the pedestrians have safely passed.”

My efforts didn’t work. This wasn’t really a surprise. Robert sometimes gave me the “uh-huh” without really listening to what I said. I figured this was one of those times and let it go, a little irritated, but nothing I wanted to make an issue of. My focus was on making the trip interesting and enjoyable for Jackson. I didn’t have a lot of energy to continue repairing Robert’s perception of Parisian drivers. 

Leaving Robert alone

For one week during our trip, I left Robert in Amsterdam while I traveled to Eindhoven (Netherlands) for work. (Our son was attending a soccer camp in Soest, Netherlands.) We circumscribed a manageable route around our Airbnb to ensure that Robert could find what he needed while I was away. Our lovely third-floor walk-up overlooked a canal and was near a cafe for coffee, a subway stop, and a Wagamama Japanese-style noodle shop. The fridge was stocked and I re-penned elaborated instructions for operating the shower, the dishwasher, and the door locks. I gave Robert a note card with our address to carry in his wallet.

Robert got lost

The second evening I was away, Robert reached out in a panic. He could not find our flat and he could not figure out how to call a taxi. Back in my Eindhoven airport hotel room, as Robert warily moved through Amsterdam, reading street signs back to me, I directed his route on my laptop using Google maps to guide him home. Looking at the forbidding, gray tangle of landmarks in satellite view I could see the dark web of canals, quays, bridges, and streets that confronted him. He was so frightened and I felt so very bad for him. He was beyond relieved when he safely arrived at the flat. I was too.

Comfort zones

I would come to learn that outside their comfort zones, people with FTD and other dementias find it hard to cope with the myriad demands bombarding them. Logic does nothing to abate the deep anxiety they feel in new situations. But in those moments, away from home in 2015, I didn’t understand this. My experiences with Robert were confusing and (briefly) unsettling. I attributed his reactions to his relatively provincial upbringing and his limited exposure to destinations abroad. Remarkably, it did not occur to me that he was ill. As the partners of people with dementia, it is very hard to entertain the idea that there might be something very wrong. We rationalize a lot until we just can’t anymore. 

When we returned from Europe our daily lives resumed their normal cadence. I spoke briefly with my therapist about the “travel incidents,” but quickly shelved my concerns as the vagaries of a trip abroad. My therapist ascribed our traffic tangles and Robert’s wayfinding collapse, to a communication problem that could be resolved if we’d just listen to each other more deeply. (Regretfully, he missed the boat on that one.) Life goes on as it tends to.

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