2018: Losses


Red Mini Cooper Photo by Dimitris Vetsikas

The second neuropsych exam, in March, 2018, supported the diagnosis of LBD.  It was a three-hour exam, and David’s insurance covered only part of the cost.  Had David been unwilling to have the exam, either because he resisted the idea that he might have dementia or because he refused to pay $750 out of pocket, there would have been no way out of the stalemate.  But he consented.  The test was harrowing; one task after another struck him as both simple and impossible.  Of course he could draw a clock face — but all of the numbers on the clock face clustered in one quadrant.  He could see that something was wrong, but he couldn’t fix it, and he sank under waves of shame and failure.

Because LBD can be diagnosed definitively only from a brain autopsy, the report used cautious language: the exam results “were consistent with Lewy Body Dementia.” 

The neuropsychologist repeated what we’d already heard.  David couldn’t drive.  David and everyone on the road would be at risk.  Now that he had the LBD diagnosis, insurance wouldn’t cover an accident for which he was at fault.  His red Mini Cooper sat in his garage, and he had the keys.  Would he remember that he couldn’t drive?  What if a hallucinated conversation sent him back to the grocery store for potatoes?  In a quiet, devastating showdown, I insisted on taking the keys.  Our friend Tony drove the Mini away and sold it.

The diagnosis meant that David was eligible for medical leave and then for a period of disability leave.  The release from work brought relief and loss in equal measure.  He no longer had to fail at work, but he was at home, alone, with no sense of purpose and nothing much to do.  Fluctuating attention made reading difficult.  Drawing was absorbing, but drawing couldn’t fill entire days.  Watching tv in the daytime made him feel guilty. 

Meanwhile, the world spun on – in its horror and beauty, absurdity and grief.  Watching tv news allowed David to feel some connection to the world when there were fewer and fewer meaningful ways for him to make that connection.  But tv-watching spawned trouble.  Everything was about him, not in the way that people typically mean that: then and throughout his illness, LBD paranoia twisted news stories and friends’ stories into stories about him.  The police wanted to question him about the murder at the nearby airport.  Someone had accused him of impropriety and was pressing charges. His favorite shows, the home renovation shows, just sent him into different spirals: asbestos in the attic, black mold in the basement.

Days at home with only the tv for company would wreck him.  David needed other humans, and he needed other places.  He wanted to walk to the store – but that meant walking on a road with no shoulder, over a blind hill.  He proposed riding his bike to the gym, but he’d be riding on that road with no shoulder, over that blind hill, with visuospatial deficits that ruled out driving.  (His bike tires were flat.  I made sure they never got inflated.)  We filled out the application for the local dial-a-ride bus service so that he could continue his years’-long practice of going to the gym every day. 

The doctor had suggested that we find out what services might be available for David, but no one seemed to have a list of those services, and no one could direct us to anyone who might know.