A Story of Dementia

From the Narrative Medicine elective.

Swinging Bridge, by David Rogawski

You were nervous. Almost shaking. Were you anxious about revealing your story? Worried that you would forget key events in your history? Tense because we were strangers with you in an unfamiliar place?

When you spoke, it was faint, but you were solid. “I was diagnosed with dementia. I have dementia. One of the questions I wanted to ask was how you get it…and then I found out that it can run in families. And now I’m here.”

You worked for years organizing, keeping track of things, being responsible for remembering. It seemed like you must have known something was changing. You said that you had to write things down (you still do). Dementia skipped a generation – your grandmother was demented. Does that connect you to her? When you were ten you remember spending time with her. And you remember not understanding why she would repeat herself. Not until later did a diagnosis exist, and the pieces were put together.

“My father raised us girls to work hard. Get a job, take care of yourself. Be independent. Because he might not do it for you.”

You had a good childhood – playing on the beach, picnics, strength, morals, determination. You are number two of five girls and one boy. When you spoke of your father’s death you had that sense of sadness that occurs right before tears. You miss him. Details of that day must still be clear for you – you remember being in the hospital. You were a little girl when it happened, still playing with dolls, even though exactly what age you were is forgotten. A trivial point, perhaps.

You followed through for (because of) your father. You were self-sustaining, and raised your children alone. After you divorced your husband, you did not allow your family to fall apart, to become poor. You are their mother. Your children went to college, and now they have children.

You write for you now – you’ve been told it will slow things down. Maybe to organize your memories and make them permanent. So that they won’t be lost once they are forgotten. You write stories that are true life. You write stories about your family, your life.

“They take me around with them. Like a baby – that’s how I feel sometimes.” Just once did you allude to a feeling of having given something up, of having left behind a life in Virginia for one that could not be yours in Michigan. Just once.

Would you write about your illness? “Yes, but I think it would be the last thing I write about.” Which is interesting to me since dementia is a disease of memory and of personality. In saving your illness for last, your spirit is portrayed. A spark of a taunt, almost. Teasing dementia, in a way, to say that you will still be able to write your story. You are not giving yourself a timeline.



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