Alzheimer’s disease is very much like a falling piece of paper: not linear in its descent, but slow and varying; a gust of wind could carry it up for a time, but ultimately it will resign to falling once more. And even though Alzheimer’s is such a prevalent disease in the United States, many find it a difficult topic of conversation due to the turbulent emotions associated with watching the gradual, painful loss of a loved one. While there has been an extraordinary amount of scientific research done on Alzheimer’s disease, it remains difficult to capture the impact the disease has on the lives of the person living with dementia and her loved ones. What science cannot portray, art can, and that is the basis for the play, “Last Lists of My Mad Mother” by Julie Jensen.
Jensen’s play follows the journey of Ma and her daughter, Dot, as they experience the wane of Ma’s memory, understanding, and ability to take care of herself. In wanting her mother to remember and do things correctly, Dot is faced with feelings of frustration and anger, permeated every so often by moments of humor and liveliness; these moments of liveliness stem from Dot’s wicked sense of humor in trying to disentangle her mother’s jumbled thoughts. As Dot struggles with all these emotions, she receives “advice” tinged with judgement from her sister who lives far away and does not understand what Dot is dealing with daily.
As the mother and daughter reflect on their life together, Dot realizes she must accept her mother the way she is now, instead of trying to make her the way she was. Director, Frank Bartella says, “Ultimately [“Last Lists of My Mad Mother”] is about finding the freedom to just have fun and live in the moment with the person you love, and go out and laugh. Don’t get upset they can no longer do certain things. Just go out and have fun with what they can do.”
So why use a play to talk explore a difficult, nuanced topic such as Alzheimer’s disease? Well, theater and story-telling media such as movies and television have often played very important roles in discussing critical topics with the public, and this play is not different. Bartella speaks on the impact of the theater, “It is the most real of any of the art forms. I mean, you see a real person standing in front of you, watch them experience real emotions… There’s a three-dimensional reality to theater that makes it come alive.” In theater, the audience is invited to watch the lives of the characters in real time, and in doing so, be allowed to see what they see and as Jeanne Kussrow-Larson—who plays Ma—says, feel what they feel. “Being onstage, I feel a lot from an audience. I think it makes me connect with the audience, I can feel their reaction. And that’s another way of telling what we’re doing is what we’re supposed to be doing.” There is an emotional dialogue within theater that makes it especially impactful as a method of storytelling.
Another thing that is important about theater as a discussion facilitator is that although it is scripted, it isn’t exactly the same every night—theater depends on the audience to brings its own emotions and understandings (or lack thereof) to the production. Barbara Goings, who plays Dot, points out that when someone goes to a lecture or support group for Alzheimer’s, it is usually edited; hindsight is 20/20 and the speaker may choose to edit things they may not be proud of. For “Last Lists of My Mad Mother” Goings says, “You will see times when I, as Dot, lose my temper with my mother and do things I probably would not be proud of, and would not be comfortable sharing. But the audience sees that, and it’s unedited without thinking back on it.”
The audience sees how Ma tries to make sense of the world while Dot tries to bring her mother back to a time when their relationship was “mother and “daughter,” not “patient and caregiver.” Back to a time when Dot could engage her mother in a conversation about things other than Ma’s rapidly reduced worldview. Kussrow-Larson points out that the performance helps the audience accept Alzheimer’s as a life-altering experience and engage in a conversation.
While the audience witnesses Dot feel various degrees of anger, confusion, and frustration and how she acts on those feelings, Goings reminds us the lesson of the play, “when you stop trying to pull somebody back into your reality, when you keep trying to correct them when they don’t remember…when you let that go, and just allow them to be where they are, then the stress for the caregiver is reduced and the anxiety for the patient is reduced.”
Later, when Ma’s memories do not include Dot, she joins her mother in the world of her mother’s youth, trading what she knows for an easier relationship with her declining mother—finding a place where they can both be happy and comfortable.
Dementia is an experience that is very individual, very private. Going back to the metaphor of Alzheimer’s being like falling paper, no two pieces fall the same way. Despite the truth in this statement, many people are not content to watch the paper’s descent and struggle to stop it, even though doing so is frustrating and eventually gravity wins.