Ch.139 Good Day/Bad Day: the Lewy Body Roller Coaster is Still Operating

Ch.139 Good Day/Bad Day: the Lewy Body Roller Coaster is Still Operating

          May 2022

          Here’s how Pat was diagnosed with Lewy Body: Dr. Donn Dexter, her neurologist, told us that he wasn’t certain about what was causing Pat’s memory and behavioral problems until I mentioned how erratic they were. “Some days she is perfectly fine but then all of a sudden, she gets caught up in a delusion or a memory failure,” I said. These periods of rapid fluctuation are the signature symptom of Lewy Body Dementia, the Lewy Body Roller Coaster described in every account of the disease. Having never heard of Lewy Body, we left that meeting with Dr. Dexter scared and confused. We didn’t know then what we do now, that with Lewy Body you never get off the roller coaster.

          That discussion with Dr. Dexter took place four years ago. Yesterday, when I arrived at The Refuge at 11:30 a.m. I located Pat at the large dining table right next to Betty Ann, the activities coordinator. Pat was smiling and laughing along with several other residents. Then she ate a good lunch. Meanwhile, her hospice nurse Amanda reported that Pat was doing very well physically, with no visible trace of her auto-immune disease named bullous pemphigoid. After lunch I took Pat into the courtyard – celebrating the first warm day of spring. Pat was still happy at supper, and she ended our time together with a warm smile and a pleasant good night.

          Would Pat still be smiling and happy today? I asked myself that question on my way to The Refuge the next day. No. The Lewy Body roller coaster had moved ahead, and this time Pat was so sleepy she could barely be aroused. She ate little at lunchtime, responded only with yes or no answers if at all, and complained that she wasn’t feeling well. Pat’s dysphoria lasted all day. Yesterday’s good mood was only a memory, something to remind me that just as bad times follow good, so will we have another good day soon.

          Pat’s comments on: Good Day/Bad Day: the Lewy Body Roller Coaster is Still Operating: “You know what? I am still happy.”