Sum of My Parts
A Documentary Film about Dementia
Dementia is a syndrome — a group of symptoms — that are caused by any number of diseases that result in brain damage. Diseases include Alzheimer’s, Parkinson’s, Vascular problems, HIV, and others. Dementia manifests as memory dysfunctions, especially recall of recent events, language problems (finding and pronouncing the words we want to use), organizing sequences of movements such as are required to dress oneself, and perceptual problems such as naming objects such as eating utensils, articles of clothing, and others upon seeing them. Dementia poses particular challenges to the ways we maintain and build relationships with each other. We often feel that shared experience is foundational to interpersonal relationships. What happens when those shared experiences are not recalled?
Sum of My Parts documents the ways that dementia has shifted the terrain of my relationship with my mother. As her cognitive abilities have changed over the past several years, I have spent a lot of time alone in her house. I needed to find and organize papers, manage bank accounts, prepare and locate medical and legal documents, and generally oversee her space. She at that point required a high level of care and was living in a nursing home, an environment unfamiliar to her. My conversations with her were challenging and sometimes difficult to follow. Her meaning was not always clear in her speech. I began to notice the way her space, her built environment, was playing a critical role in forming our shared understanding and experience.
Over the course of about a year, I recorded my conversations with my mother. She is a very communicative person and has always been interested in expressing her ideas and feelings with me. I feel that in these recordings is a powerful statement about the experience of dementia. I think that she is trying to describe what it feels like to lose parts of yourself, and to witness that loss. I think she is trying to describe a kind of disorientation that is hard for us without dementia to imagine. But I also feel that it is impossible to understand these words alone and isolated from context. I have tried to contextualize her speech in order to provide people with meaningful branches that can help us understand what she is saying, and to let us hear more fully her experience. I think finding ways to better hear this story is an imperative first step towards healing the divisions which further isolate people with dementia in our culture.
