October 21st, 2015

osen'

Hope is the enemy

http://scholar-vit.livejournal.com/439521.html

<...> As with most victims, Mr Schecter’s condition worsened in the evening (“sundowners syndrome”), and often he confused Sam with his uncle or with the doctor who had treated him in Siberia. During the day, however, his illness was more capable of deceiving people. I’m thinking of a Sunday afternoon in May when the three of us took a stroll around the neighbourhood. Since Mr Schecter had lived in the same building for some 45 years, many people greeted him warmly. “Everybody knows Mr Schecter,” Sam exclaimed cheerfully. On hearing this, his father stopped and said with a wistful smile, “Except Mr Schecter.” This rare, self-deprecating remark did more than just amuse Sam, it comforted him: he looked over at his father and smiled as if they were sharing a joke, as if they were sharing the same reality.

Such moments are seductive precisely because they make us think that dementia is just a phase, that its victims may one day be capable of commiserating with us about their affliction. So whenever I saw that Sam was being lulled by one of his father’s lucid events, I would tell him gently, “Hope is the enemy.” Because of such moments, caregivers teeter between hope and despair. Unsure about the depth of the disease, they can’t gauge what their patients know or don’t know. Guidebooks use the term “ambiguous loss” when referring to the terrible day when the patient’s mind is truly gone, when he is physically present but psychologically absent. Yet the real ambiguity, it seems to me, precedes the final stage, when we don’t know how much is gone and consequently how much we’re supposed to grieve. These are the months, or more often the years, when caregivers live in perpetual crisis. <...>