When Dementia Takes Names

In the old days, I thought I’d be devastated when dementia stole my name from mom’s memory. I believed that once my name disappeared, we’d be in dark, ominous territory. The truth is, many other things were far more painful than the day she first lost track of who I was.

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Perhaps it was because my name stayed in her mental directory long after the words for shoes, comb, and fork had disappeared. She could still identify me six years past the onset of dementia. It’s also possible that since the emotional value of our relationship was never erased by the disease, the name business began to seem less dire.

The PBS program, The Forgetting, reminds caregivers that “recognition is more than a name.” It “isn’t a measurement of how important you are to the person” — it’s simply a function of which neurons still work. While I’m a bit sad that she forgot the name she chose so carefully in the months before I was born,  she still seems to absorb the essence of me in a very comforting way. Given the choice of being known by a name — which is all that most people will recall about us — or being recognized for your character and how you make someone feel, I guess I prefer the latter. It’s a sign of deep connection and real love.

People probably think I’m nuts when I laugh about how my mom loves to walk with my sister and me, not realizing we are her grown children. She’s like a drunken sailor who can’t say who’s holding her hand, but feels sure that the odds of having a good time increase in our presence. That may sound crude, but I feel I must be grateful for small things that keep joy in our relationship. As the authors of The 36 Hour Day point out, “a dementing illness does not suddenly end a person’s capacity to experience love or joy, nor does it end their ability to laugh”.

It’s one of the few truths of dementia that actually add a bit of sweetness to life.

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