written by
lucinda koza

Being Intrigued By What You Don't Immediately Understand

Narrative Thought Pieces 4 min read , March 9, 2022
my father holding my brother in 1983

A Washington Post article published on March 4 and written by Tanya Ward Goodman details how fiction and, mostly, poetry can help caregivers and families process their experience of a loved one who has dementia or Alzheimer's.

I thought, well, obviously this is right, but is it only right in the kindergarten classroom way in which 'reading is fundamental?' As it turns out, no: it's right in a way that asks much more of you, that asks you to be comfortable with being uncomfortable. Goodman draws a parallel between the spaces, fragments and unanswered questions of poetry and the spaces, fragments and unanswered questions of interacting with your loved one's dementia. It's okay that it doesn't quite make sense. In fact, there may be more freedom there to allow spontaneous deep connection and unrestricted exploration. When identity is not a solid construct in your household, the impressions and symbols of poetry can mirror that, and provide comfort.

Fiction writer Aimee Bender’s short story “The Rememberer” helped me begin to frame the complexity of my own emotional response to Dad’s illness. The narrator relates the de-evolution of her partner as he goes from man, to ape and eventually becomes a salamander. On the first day of his transformation, the narrator and the ape sit on the lawn together, ripping up the grass. Recognizing her lover in this creature, she mourns her loss while simultaneously meeting this new version where he is.
Bender, along with other magical realists and speculative writers, merges the surreal with the commonplace, asking the reader to exist in a state of ambiguity that will be familiar to those who have some experience with Alzheimer’s or dementia. Poetry, with its reliance on metaphor and imagery, often does the same thing.

Living in ambiguity. Meeting your loved one where they are. Saying 'yes, and' to their present, which becomes your present. Fragmented. Surreal. Finding a way to communicate when words cannot be relied upon. Trying to discern if it is a priority to be the detective and use context clues and offer potential solutions in order to discover your loved one's intent or if it's better to divert. Constantly governing the expectations of the self: will this be a reality I'm familiar with or will I encounter the ape on the lawn? Will I be me today, or an annoying stranger?

Music is proven to be therapeutic for people with dementia and Alzheimer's, including being something that can remind a patient of their childhood, their first love, their God. My father always loved music, but really loved Bob Dylan. He'd quote lyrics to me as if they were from the gospel. 'When you ain't got nothin', / you got nothin' to lose.' Or, 'Strap yourself to a tree with roots / you ain't goin' nowhere.' It made sense to me. The fact that these lyrics didn't completely make sense to me, is exactly what made sense to me. My father took long, pregnant pauses, strategically placed to ensure the listener was hanging on every word. It worked. He spoke slowly and deliberately. He used gorgeous, complex vocabulary. But, in moments in which a deep, meaningful feeling is what he meant to evoke, that is when he used Bob Dylan poetry. In the moment of most height, he used language most basic. Simple. Meaning nothing much and at the same time meaning everything. He would ask,

What's the shortest verse in the bible?

Then:

Jesus Wept.

And then, in his most southern of dialects:

...He sure did.

I didn't know what it meant, but it meant everything. Being in my father's presence was always a bizarre dance in a weird city, where I tried to extract a sense of identity from his eyes. Daughter. Child. Audience. Who am I? Nothing was easy and nothing was prescribed. No expectations allowed. I've always been in a poem full of metaphors and magical realism with my dad. I've never had sure footing. I've never known whether I would be me or an annoying stranger (while in college, I surprised him at his office on his birthday one year. He responded with, 'I don't like surprises').

Now that I'm in an even weirder city with even less rules as my father's caregiver while he has dementia, it's still pretty much the same level of constant depersonalization I've always experienced. However, I received the message when I was little that speaking in abstractions could mean so much more than speaking literally - and I adore poetry, and I know every Bob Dylan lyric. In moments where he seems so far away, all I have to do is say, 'come in, she said / I'll give you shelter from the storm.'

family caregivers daughter