"The Diving Bell and the Butterfly" Provides Caregiving Lessons
A friend suggested that I rent the movie, The Diving Bell and the Butterfly. I had heard about the movie last year when it was up for four Oscars, so I placed it first in my Netflix queue. I expected to be engrossed by the way that director Julian Schnabel portrayed the true story of Elle editor Jean-Dominique Bauby who suffered a stroke and had to live with an almost totally paralyzed body; only his left eye wasn't paralyzed. However, I wasn't expecting to see such a good portrayal of caregiving and to find several lessons emerging. I think that these lessons can be helpful for any caregiver, but especially those who help a loved one with Alzheimer's.
Lesson 1: It's about the loved one, not about you. I found myself mesmerized in watching the two therapists who are trying to help Bauby regain physical function. One of the therapists discovered a system to help Bauby communicate in which she would call out different letters to Bauby and he would blink when the correct letter came up. That way, he could spell out words to her and then make complete sentences. Talk about tedious work for the therapist in repeatedly calling out those letters! However, she calmly and compassionately used this system to help Bauby have a voice in the world.
In working with a loved one with Alzheimer's, caregivers similarly may have to figure out what the loved one really means. As the disease progresses, you may have to develop some unique language that will help the loved one keep a voice in the world. And this may take tremendous patience, fortitude and giving on the part of the caregiver.
Lesson 2: Appearances don't matter. In flashbacks throughout the movie, you get a chance to see Bauby as the dashing, handsome fashionista. Yet, his appearance after the stroke barely allows you to realize he's the same person. His face muscles are frozen in a distorted position. For a while after the stroke, he doesn't want to see any of his family or friends, but finally he starts to let them back in. In one scene, Bauby is reunited for the first time with his three young children. The two daughters each reach up tenderly to kiss his cheek. What was so moving was that neither girl flinched while doing this. The daughters didn't let Bauby's distorted appearance take away the knowledge that he was their beloved father.
Similar things can happen with Alzheimer's at times. When Mom had traumatic outbursts during the later stages of Alzheimer's, she would at times give a leer that wasn't anything like the mother I knew before Alzheimer's. Or she'd pull a towel completely over her head, claiming that she was cold. And at times, she would do these uncharacteristic things at inconvenient times when we were in a waiting room full of other people. I just had to look past her appearance, accept her as she was, and know that the mother I know and loved was still there (even if she wasn't evident at that point).
The Diving Bell and the Butterfly also really gives you a different view of illness since much of the filming takes place as if you are in Bauby's head looking out his one good eye. You get a real sense of Bauby's frustration at his situation and at not being able to communicate. Thus, I think this movie provides a wonderful and novel way to "experience" caregiving from the loved one's perspective.