Many caregivers have commented in this blog or in personal emails that—even in quite severely demented people—the essential “person” seems to remain. Lee Ann Gerleman writes that the people she cares for are still in there, even though we only get a glimpse of them from time to time.
What it’s like for them? Who is that person behind the mask of severe dementia? How do they experience themselves?
In the novel Still Alice, Alice Howland, a 50-year-old internationally-known college professor, tells (from her own point of view) the story of her journey into dementia. As she loses more and more of her memory, there is no sense that she experiences herself differently. Eventually, her husband becomes the “kind stranger” who walks her home and her daughter becomes “the woman in the red dress.” It’s a powerful story … and believable, but the question remains: What is her experience of her self as memory fades?
As I described in my last post, I’ve lost more of my ability to think than I’d previously thought, but I don’t, as yet, experience my “self” any differently. Self is tricky to define, but, to be academic for a moment, the dictionary takes a crack at it, defining self as my essential being. It’s completely subjective; only I can know my essential being. Cognition, on the other hand, includes knowing, remembering, judging, and problem solving. My self is what I am; cognition is my abilities, which can be roughly measured objectively.
It’s the sense of who I am that hasn’t changed. It’s as if my self looks out at all the cognitive limitations from behind a curtain, is aware of them, but doesn’t have any sense that this “I” behind the curtain has changed. Here in the present moment, I seem no different than I ever was.
True, I am early in the disease, but since I’ve already lost so much cognitive ability, you’d think that I’d already be experiencing myself as at least somewhat changed. Will my essential being seem any different when I can’t remember Marja’s name? Who will this “I” be then? And if my self is going to be different, will that change be abrupt or gradual?
I thought about it again this afternoon as I walked with a friend I’d known for thirty years. Although we hadn’t been close, she seemed to know me (probably because I come from her more distant past). Four times within a few minutes she asked me how old I was. Each time I answered, 68, she stared at me with a twinkle in her eye and said, “You look so young.” Clearly she was still there but it also seems to me that she experienced herself as she always had.
I suspect that much of the cultural fear of Alzheimer’s is that we’ll lose our selves. But what if we won’t? What if the I persists beyond memory and mental capacity? Wouldn’t that be interesting! Would it decrease our fear? What might it reveal about the nature of human consciousness?