OUR BLOG: A MEDICAL HUMANIST'S NOTES

When The Conversation Changes

February 27, 2019 at 9:39 am · filed under communication, family & friends, Patient Advocacy

“Learn the art of fragmented, irrational conversations and follow
the patient’s lead instead of trying to control the dialogue.”
Zen and the Art of Coping With Alzheimer’s

In the days when there were video stores I would walk by the film “Iris” countless times, knowing it was a story of the writer Iris Murdoch and her husband’s experience with her cognitive decline due to Alzheimer’s disease. I would often find myself pausing, which would prompt memories of conversations with my father who at 86 years old was diagnosed with late onset Alzheimer’s.

It was after his passing that I was asked by the Vermont Veteran’s Home to serve on a panel to address issues that families face when a loved one has a mentally debilitating disease. I thought it would be impactful to show some clips from the film, a story in which a critic stated, “Iris celebrates her life, even as Alzheimer’s robs her of it’s meaning.”

In preparing for the program I selected a few film clips from “Iris.” I found myself viewing them as both a daughter and a medical humanist.

As a daughter it was the scene when Iris’ husband was reading to her that brought me back in time to when my father had lost his ability to speak. My Dad was a man in search of meaning—he turned to philosophers, poets, theologians and artists. I turned to his bible, a book titled The Prophet by Kahil Gibran and I would read and re-read this passage to him.

“…a scholar said, Speak of Talking
And he answered saying:
You talk when you cease to be at peace with your thoughts;
And when you no longer dwell in solitude of your heart
you live in your lips, and sound is a diversion and pastime.
And in much of your talking, thinking is half murdered.

There are those among you who seek the talkative through fear of being alone.
The silence of aloneness reveals in their eyes their naked selves and they would escape.

And there of those who talk, and without
knowledge or forethought reveals a truth
which they themselves don’t understand.
And there are those who have the truth
within them, but they tell it not with words.

Let the voice within your voice speak to the ear of his ear…”

In the film Iris has moments of lucid verbal expression at a doctor’s visit and proclaims, “Without words there are no thoughts…”

It was when the doctor points to the MRI of Iris’s brain, her husband cries out: “You have shown me a map of Iris’s brain world. You say it is empty, that all the unknown mysteries of life are gone now…but how can she say things with such lucidly…where in the empty jungle does that come from?

“We don’t know,” the doctor, answers.

“No, you don’t know!” her husband replies.

As family and friends of those living with Alzheimer’s we should consider the mysteries that lie beneath the silence and make an effort to communicate as we’ve known them. It may or may not jog some memory or lead to a meaningful verbal exchange but our engagement acknowledges the person within. I tried to do this as a daughter and believe that the medical humanist side of me would likely approve.

3 Comments »

  1. Thank you for this. Sent it to a friend of mine who is looking after a spouse in decline.

    Comment by betsy sherman — February 27, 2019 @ 10:55 am

  2. Thank you, Celia. I used to read my late husband poetry…Have forwarded this to Dr. Robert Santulli, whose Dartmouth psych course in cognitive decline I visited a couple of weeks ago.

    Best and stay warm.

    Comment by Rachel Hadas — February 27, 2019 @ 12:16 pm

  3. A friend of mine sent me the link to this post – thank you. My mother has advanced Alzheimer’s, and exactly, it’s not deterministic, how she remains when she can barely speak, it’s not the same neurons that used to fire, not those shooting stars, but somehow the constellation of who she was is still there.

    Comment by Lisa — February 27, 2019 @ 12:57 pm

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