In January, 2020, David called me one Friday afternoon, barely able to speak.  Please come over, he said.  Pulling on my coat as I went, I slid across the icy alley and wrenched open his kitchen door.  I shucked off my shoes and headed upstairs.  What’s wrong? What’s wrong?  I found David hunched in the doorway to his tv room, grasping the door frame to stay upright, trembling with effort and agony. 

I ducked under David’s arm and pushed a chair behind him.  Though he was trembling with the effort of standing, he couldn’t bend to sit.  Was he too stiff or too afraid?  I couldn’t tell.  I nudged the chair against the backs of his knees and put an arm across his chest.  At last he half-fell into the chair.  I called the clinic’s nurse line.  Patiently, thoughtfully, the nurse pieced together the information about David’s medical conditions and asked how this episode was similar to and different from others.  It was the same, but worse, I reported.  Did this kind of episode usually resolve on its own?  Yes, I said, yes.  She thought it was safe to watch and wait for a few hours and take him to the ER if the pain and immobility didn’t resolve themselves. 

I was grateful for the guidance, but what counted as resolving?  As the afternoon went on, David began to hobble a few steps.  By evening he could get himself to the bathroom and back, and he could make his slow way between the rooms upstairs.  I made him promise to stay in a chair while I hurried home to get food and to fill a bag with the things I’d need to stay overnight.  I stayed that night and for the rest of the weekend, and David slowly regained mobility.  By Sunday afternoon, he could manage the stairs. 

Should we have gone to the ER?  Maybe.  Certainly doctors would have ordered tests and scans, and perhaps they would have admitted him for observation.  Would David have regained mobility faster?  Maybe.  Does this strike you as caregiver neglect?  It sometimes strikes me that way.  The judgment call, in this and in so many caregiving situations, requires weighing unknowable benefits against guessable costs.  Going to the ER would mean surrendering David to a medical system intent on intervention, even when intervention would be likely to cause harm.   As geriatrician Louise Aronson writes in Elderhood¸ “Our current care system rarely questions the need for procedures, and unquestioningly pays for the complications they routinely cause frail old patients.  It does not, however, reimburse for the care that might allow these same patients to return home safely and comfortably” (58).  I feared that David would go from the ER to admission for observation and then to rehab – a sequence that might identify a cause for this setback and a useful treatment plan but would be certain to leave him disoriented, frightened, isolated, and frantic about money.  At the end of it all, whatever we’d learned about his spine or nerves, I’d be the person responsible for managing the effects of treatment – and given what I’d read about LBD, there was a better than equal chance that delirium would be one of those effects.