My father was a painter and art professor who believed that interpretation was key, leaving much of the meaning deep in his works ambiguous. My mother was a simple Midwestern girl who had strong, definitive opinions on how the world should turn. I seem to be always walking the tightrope of both their influences, wrestling with the different sides of the coin. In many ways, my wife is the same and I have no doubt our daughter will follow the same path between ambiguity and realism. All that said, for over a decade, we were a tight family core that operated harmoniously. Our existence was fairly straight-forward until Major Neurocognitive Disorder (also known as dementia) disturbed every aspect of life as we knew it. Since the work you presently hold deals with all these factors in some way or another, I will tread lightly on the walkway between interpretation and explanation.
In the years following my father’s retirement in 2016, my mother changed. Dementia was slowly and painfully stealing her away from us. We did what we could to adapt and care for her, but the role of caretaker fell to my father. What was to be many years of new work and inspiration turned into a daily nightmare of routines. He was living with a person he saw with his physical eyes as a partner of 50 years, but inside was a shadow of her former self.
What’s worse is that my mother did not accept the truth. At first, she would token it up to aging or being “laid back,” but by the fourth year of steady decline, it was full-on denial. If anyone even hinted at life being less-than-normal, the consequence was chaos. By the pandemic years, our existence as a family had changed drastically. None of us looked in the mirror the same way. It was as if we were wearing masks (pandemic pun not intended) over the faces of our prior selves, especially my mother, who changed her mask daily so no one would notice that anything was wrong. Soon my mother was fully diagnosed, my father stopped painting almost completely, and my small nuclear family (already dealing with my own recovery from addiction) was adapting to our new roles as the support system for a crumbling building we were watching fall.
On a hot summer day in August 2021, my father called, urging me to take him to the hospital for pain that was hindering his movement and functions. This set off a series of events that would bring everything to a head. I would care for my mother alone for the first time. Secretive conversations commenced away from her paranoid eyes. Calls were made to out-of-town family for support. I had never felt this level of intensity or focus, nor do I think I will feel it again. My father was essentially incapacitated, and I was in charge. I was the sole leader of the family, and there was nothing I could do about it. It was the most exhausting, eye-opening sixteen days of my life, and I would never be the same.
Half a month after that call, my mother was in a memory care facility. Three months later, my father would pass away from Stage IV Cancer. Seven months after my father’s death, my mother succumbed to her illness. My parents, who had been my best friends for 38 years of my life, were gone.
This collection of pieces is about them. It is especially about those sixteen days in the summer of ’21 and what it was like living around someone with this terrible disease. Every element is somehow conceptually relevant to the experience, many of which had chosen parameters, but the resulting amalgamation was decided randomly. This is, at its core, what it is like to know and love someone with dementia. Repetition. Surprise. Repetition. Shock. Repetition. Fatigue. Endless repetition.
A note on format. My initial concept for this work was to be eight vinyl records, one piece on each of the sixteen sides. There is no concrete order, though philosophically “Early Onset” was the beginning of the journey and “Aphasia and Metacognition” is spiritually where it ends. I even thought about having blank white labels on the records so you would never know which one you were getting, especially if you started swapping sleeves. The cost-prohibitive nature of such a project deemed too daunting, so the book you have in front of you will have to suffice. The images (both in print and in the accompanying videos) are an important part of my grieving process, but they are really secondary to the musical works . The totality of the music can be streamed on all major streaming platforms, including Spotify, YouTube, Apple Music, Amazon Music and more. You can also listen for free and view all the videos at gauzeeyed.com
As with all my music, listen patiently. The music is over four hours long in total. It is extremely taxing to listen to all at once. And that is the point.