Alzheimer’s Disease is generally defined by progressive stages, from mild–hard to determine, to severe–complete devastation. I am beginning to understand that there are also stages that family passes through as well. Right now, we are experiencing what I consider the Did she really say/do that? stage. Every day we compare notes among ourselves based on the previous day’s interaction with her. We know the changes are coming faster now, and while we have left denial behind and are gathering strength and knowledge for what will surely come, we still keep measuring each new behavior and strange comment against who she used to be. Clearly she is not now who she was, but we haven’t yet transitioned to the That’s definitely the AD, not her stage. Some behaviors belong to the old her and we aren’t yet sure how to tag these as “just her”. It only matters because some personality traits are exacerbated by the AD and some are strictly attributable to the AD and gaging this determines how we respond to her. We have to decide who we are managing, the old her or the new damaged her. Before we can do that, we have to fully embrace that the old and the new are merging and evolving into someone else, who cannot be measured at all.
For now, in her current stage, she is still able to mask her growing decline and present different personalities, in short spurts, to different people. This is a phenomenon experienced by most every caregiver. It is not only frustrating, it also can often interfere with diagnosis in the early stages. This launches us in a heightened state of awareness, looking for definitive behavior that confirms what we know to be true. “Did she really say/do that?” we ask ourselves and each other, grasping for something absolute. We need a baseline, a firm diagnosis so we aren’t just drifting without a goal or plan of action, so we aren’t still wondering if we are just overreacting or if she truly is disintegrating before our eyes and what that really means for the near future.
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