Dementia: the very idea raises fears about the loss of control, loss of beloved memories, loss of self. Is a person who is deep into dementia still sentient, still conscious? If we lose our ability to connect with who we are–let alone with other people–have we misplaced whatever it is we call consciousness, or mind?
Yet no one who has interacted with a person who has dementia would say the person has no consciousness. It is, instead, an altered consciousness: sometimes a loss of ego or sense of self in the world, or the disintegration of social or emotional “filters,” or a series of cognitive gaps that collapse into fugue, fears, or blankness. There are people who lose everything but the distant past, and people who lose everything but the present moment. Dementia has many causes and takes many forms. We do not understand it, and that creates fear.
Of the things I fear that are actually not unlikely to occur, dementia–more than death–unsettles my equilibrium. I have watched it unfold among a number of people, uniquely and inexorably each time, devastating to the loved ones of the person who has become ill and frustrating beyond measure to the victim.
I try to avoid the word victim when describing illness, but there it appears.
Personhood, consciousness, rationality, emotionality, familiarity, habits and the framework of the person’s life erode while the person goes through the usual day; nothing stays usual. Sometimes all that remains are useless habits, physical tics, fragmented phrases that no longer convey social information.
Because I struggle with the concept of mind, because I read philosophy concerning mind and neuro-psychological texts about human consciousness, because I am a writer and feel passionate about human expression and interconnectedness and how we originated the tools of speech, metaphor, storytelling narrative and writing, the loss of sentience that dementia seems to bring represents the deepest kind of loss.
How do you face your fear?
How about in a mirror? Through a glass, darkly…*
Through some sort of glass–of which there are so many varieties, a huge number of which I encountered recently at the Corning Museum of Glass in Corning, NY. It is worth the trip to western New York state to experience this gallery of art glass, collection of glassware spanning 35 centuries, interactive exhibits on the development of such commercial and scientific glass innovations such as Pyrex, tempered glass, shatterproof and mirrored and flexible glass, fiber-optic glass, telescope mirrors and lenses, silicon chips, and bottle-making equipment. The huge museum, established as an in-house exhibit in the Corning Glass headquarters in 1951, has had several major architectural upgrades and expansions from 1980 to 2015 (and suffered a disastrous flood in 1972).
We can face fear through changes in our perspective, I think.
photo by David Sloan
*1 Corinthians 13:12, King James Version: “For now we see through a glass, darkly; but then face to face: now I know in part; but then shall I know even as also I am known.”
For me, a change in perspective is the only way to face fear. I suppose it’s mostly a matter of broadening my perspective for too often, I find that fear has narrowed my perception. Often, a looking glass reveals so much more. Thank you, Ann.
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Watching a parent (my father in my case) random walk through dementia is difficult. But I wonder if he is truly a victim or only seems so because he can no longer attain or be the “he” I conjure, the “he” I recall (which may well never have been the “he” at all). His world is significantly altered, but it seems only when I try and impose my “he” on him that he becomes uncertain, afraid, because then he is falling short (though of what he cannot grasp). Seung Sahn always offered up this advice for meditators starting out: on inhaling, ask “who am I?” and on exhaling reply, “don’t know.” As I age, and as he fades, we are both doing a great deal of “Don’t Know-ing.”
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Good approach: “Don’t know.”
Maybe my version of “me” has little to do with my best-beloveds’ versions of me. Entirely possible. See Douglas Hofstadter’s I Am a Strange Loop.
Here’s a fascinating and thoughtful article by Georgia Saunders on this topic. http://www.slate.com/articles/health_and_science/family/2014/03/dementia_and_aging_diary_of_a_sufferer_of_microvascular_disease.html
What a wonderful blog you have! I can tell this will be a major distraction for me. A truly wonderful distraction!
This made me cry a little. My mother in law had dementia and passed away a few years ago. She is so missed.