Later, of course, I could look back and see signs of LBD everywhere: visuospatial deficits, executive function deficits, the beginnings of the classic Parkinsonian gait and posture, stooping and shuffling.  Until David reported a clear instance of hallucination, though, it’s unlikely that anyone would have diagnosed him with LBD.  

The preliminary LBD diagnosis came a week after the ER visit, when we saw David’s primary care physician.  He spoke directly to David, something few doctors would do in the years to come.  He described the basic features of LBD and made a referral for the full neuropsych exam that would confirm the diagnosis.  Firmly, compassionately, he made it clear that David could no longer drive.   He also referred him to palliative care and made it clear that David would one day need long-term care.

So the endings are easier to mark.  The diagnosis spelled not only the end of David’s driving but also the sped-up end of his career and the end of almost everything he’d expected for his retirement.  Traveling alone would be impossible.  Outings to museums and galleries and even to coffee shops and grocery stores would require a plan and a driver.  Independence would erode quickly. 

As matters go in the LBD universe, we were lucky.  Many patients with this dementia endure months or years with other diagnoses, seeing neurologist after neurologist before anyone recognizes LBD.  Meanwhile, their doctors prescribe medications that worsen the symptoms, treating hallucinations with Haldol and setting off serious, sometimes fatal reactions.  David’s primary care doctor made an accurate preliminary diagnosis, ordered the neuropsych evaluation, and set up a referral to a neurologist.  David had good insurance coverage, he received excellent ER treatment, and his doctors made sensible plans for managing the course of the disease: annual appointments with the primary care doctor, twice-yearly appointments with the neurologist, appointments as needed with the pain and palliative care specialists, courses of physical therapy and occupational therapy.

From a clinical perspective, arrival at a diagnosis and treatment plan could not have gone more smoothly.  Still: outside the clinic, someone had to schedule and drive David to and attend all of his appointments, manage and administer his medications, drive or make arrangements for getting him where he needed to go, collect his mail and make sure the bills got paid, oversee his taxes and finances and “estate planning,” provide social interaction and entertainment, take care of his minor household repairs, find ways to quell his panic, write out his schedule for each day, choose a nursing home to provide his end-of-life care, make sure his newest advance directive was on file everywhere, and hold on tight when he was in despair because the losses were terrible — and, like millions of other “informal” caregivers in the U.S., work full-time.