Chronic illness is often experienced by patients as a series of subtractions. A progressive illness like Parkinson’s reveals this process vividly as the ability to move, speak, care for oneself, all gradually disappear or diminish.
The grief of lost freedom, lost abilities, lost agency, lost avenues of communication is easy to overlook. But it’s real, and can come out in uncomfortable ways. Here’s an excerpt from the start of this month’s Reflections essay in AJN, “A Room With a View.”
David was in his late 50s and had been diagnosed with Parkinson’s disease several years previously. Following a lengthy hospitalization, David’s wife agreed to a placement on the subacute/rehab unit in the facility where I was the instructor for nursing students during their older adult clinical rotation. . . . Although ravaged by the disease, David seemed to like having students provide his nursing care. . . .
One of his favorite activities was sitting by his room window, which overlooked the facility gardens and a play area for the preschool next door. For several weeks, I discovered a nursing student and David sitting by the window watching the outdoor activities in companionable silence. Students worried they weren’t providing nursing care, but I assured them that being present with someone can be just as therapeutic as a task-oriented intervention.
This is the calm before the storm. You can read the essay to find out what happens next. David’s reaction when he faces the next loss, seemingly a small one after so many other losses, is painful to read about, and traumatic for the nursing students and the clinical instructor who witness the event.
However, perhaps by bearing witness to David’s suffering, they learn a lesson that will make them more aware of the losses such patients are suffering, moment to moment, day to day—and better at communicating with patients to ease difficult transitions.—By Jacob Molyneux, senior editor