We somehow fell out of the neurologist’s schedule, but it didn’t seem worth the trouble to call and make an appointment for the next time she had an opening, months in the future.  It was unlikely that the neurologist could tell us anything we couldn’t figure out for ourselves.  We didn’t need to go through the exhausting process of getting him into the car, navigating the parking lot and building, sitting in the waiting room hoping that he didn’t need the bathroom (more difficult transfers), and so on for a fifteen- to twenty-minute appointment.  We knew that he was losing strength; he was losing language; he was losing alertness.  The disease was progressing.   If we changed our minds and scheduled an appointment, at least David wouldn’t have to endure the MoCA: I’d sent a request to stop using that test because it upset him so and because the score reflected some combination of cognitive function and anxiety at a given moment.  The neurologist had agreed. 

Physical therapy was much more useful, but it still started and stopped as David lost and regained mobility.  He still loved working with the PT staff at The Meadows on specific goals like improving strength and stamina.  But each time he returned to his pre-fall baseline, PT stopped.  The Medicare.gov website states:

“Physical Therapy is care that:

• Evaluates and treat injuries and diseases that change your ability to function.
• Improves or maintains current function or slows decline.”

It also warns:

“Your doctor or other health care provider may recommend you get services more often than Medicare covers. Or, they may recommend services that Medicare doesn’t cover. If this happens, you may have to pay some or all of the costs. Ask questions so you understand why your doctor is recommending certain services and if, or how much, Medicare will pay for them.”

The Medicare website encourages people to “ask questions,” but it doesn’t provide a contact number for people to reach someone who can provide a definitive answer.  I would have liked to ask why PT kept stopping when ongoing PT could slow David’s decline.  I would have liked to ask why Medicare wouldn’t pay for ongoing PT that could save them a bundle of money.  If David had the capacity to improve beyond his baseline at the time of a fall, wouldn’t it make sense to help prevent another fall and help him get the range of health benefits that would come from increased mobility?  Medicare could save money on treatment for fall-related injuries and from a shortened period of being bedbound.  But here, as in so many matters of Medicare-driven treatment decisions, sense doesn’t enter into the equation. 

David’s incomparable palliative care doctor followed him closely, scheduling in-person or telehealth visits every two months.  I sent observations and questions through the electronic portal before each appointment, and he gave considered, wise guidance and answers.  He spoke directly to David; before turning to me, he told David that he was going to ask whether I had anything to add.  And he was endlessly patient with both of us.  David had always been a slow talker, and LBD had stretched out his sentences to the point that most doctors twitched and squirmed and darted glances at the clock.  I had plenty of speed but also lots of agitation. 

This doctor’s calm worked magic on both of us.  He ended every appointment by acknowledging to David how difficult it was to find his life taking a direction he hadn’t anticipated and of course would never have chosen – and assuring him that there would always be ways to increase his comfort.  Other doctors did their best to help within the constraints of their own understanding of the disease and constraints of their systems. Except for David’s primary care physician, the doctor who made the tentative diagnosis, no other medical professional ever paused to acknowledge the misery of having LBD in the first place.