David’s finger began healing, then swelled up again.  He kept taking off the splint, and no wonder: a splint on the index finger of the dominant hand is a nuisance every waking moment.  His pincer grip was still unreliable, so more of his food was landing in the chair or on the floor.  Still, his weight remained stable.  As always, I wondered how worried I should be.  But even if I’d known how worried to be, the answer would have had nothing to do with the level of worry I felt. 

Could David start PT again to try to regain some strength and stability?  Could the physical therapist work with him on exercises to help him uncurl his toes?  The care manager agreed to check but said that hospice rules might prohibit PT.  The hospice nurse confirmed that.  If David started PT, Medicare would dismiss him from hospice. 

I didn’t write a letter of protest about PT.  I hadn’t written a letter about the missing morphine.  It had been four and half years since diagnosis; I was about to start my eighth semester since we’d learned that David had LBD.  It had been nearly two years since his admission to The Meadows, three months since his admission to hospice.  I still didn’t know where he was in the progression of the disease. 

***

Not long after that fall, David was dozing at his desk near the nurses’ station when I arrived.  We moved off to his room, and I set out his coffee and a container of almond croissant squares.  He said little, but the swollen finger was healing once again and his pincer grasp worked nicely for the croissant squares.  I talked about starting the new semester, my last before retirement.  I described the progress on repairs to my house and the plan in the works for a second new roof in two years thanks to the hail-pounding.  He listened and murmured a few words I couldn’t catch.  Then he dozed off again.  I knelt by the chair and told him I was heading home and that we’d go back to his desk.  I don’t want to startle you when I move the chair, I said, so I’ll move it as gently as I can – but we both know I tend to gain some speed down that slope. 

When I set his coffee on the desk and said another goodbye, the nurse told me that David had slept through breakfast.  Since he was an early riser who looked forward to meals, that had rarely happened.  But given the flux of LBD, it was information to hold in mind, knowing that it might signal a significant change or nothing at all.   When I left at lunchtime, the hospice CNA was sitting with him in the dining room.  She later reported that he had eaten everything on his plate, so I ratcheted down the vigilance and worry.

The next morning, I made the first video call to David’s room a little after 6.  The lights were off, and I could hear David snoring.  Rest, rest, I thought.  I tried again every ten or fifteen minutes; he was still sleeping.  I had an all-morning meeting on campus, so I kept checking in while I got ready.  Then the nurse called.  David was running a fever and was completely unresponsive, she said, and I should come now if I could.  I packed everything I’d need for a day and a night and drove to The Meadows.

David was asleep in his chair at the desk.  He didn’t rouse when I spoke to him or when I brought him to his room, but he seemed aware at times that I was there.  I spoke to him every now and again, but we sat quietly most of the time.  The nurses and I gave him a few bites of pudding and a few sips of water; we began moistening his lips.  The only way to move him to the bed was to use the hoist.  The hoist frightened him even when he was fully awake, but now he couldn’t awaken enough to orient himself in space.  He grasped for a hand, for anything stable.  Once in bed, though, he seemed to relax more deeply.  I held his hand all day and sent one-handed texts to Fiona and to friends.  By the afternoon, the nurses told me that it would be hours or days.