by Layla Casares
I was scrolling through the recommended feed on my YouTube app, trying to find something to watch before falling asleep. I came across a video I had not seen in the feed for quite some time—a video titled, The Caretaker – Everywhere At The End Of Time. Though I had saved it to my watch later folder almost two years prior, I had never gotten around to listening to it. Based on the title and the fact that the video was six hours long, I had initially assumed that it was a reading of a book I was unfamiliar with. When I clicked on the video, however, I was surprised to hear old-timey music begin to play. I checked the description and noticed that it listed several stages with brief descriptions for each stage. Over the next few days, I listened to it and by the end, I felt that I had found a startlingly accurate representation of the Alzheimer’s disease I had observed in my grandfather for about thirteen years of my life.
Everywhere At The End Of Time is a project released by electric musician Leyland James Kirby under the name “The Caretaker” from September of 2016 to March of 2019. It is comprised of six stages to demonstrate the progression of dementia, specifically Alzheimer’s disease. It was released in installments every six months, each stage being its own album. The project used music samples from the 1900s to the 1960s, presumably because a real-life Alzheimer’s patient would be old enough to find the music nostalgic. Kirby stated that the “The Caretaker” is meant to be the character in the album experiencing Alzheimer’s. Once the project finished in 2019, all of the separate albums were joined to create one six-hour long video; this is why it had first come up on my recommended those almost two years ago.
As someone who lived with a person with Alzheimer’s disease, the topic catches my attention whenever it is brought up. Additionally, I have always been drawn to the musical representation of certain emotions or experiences. I believe that music has the ability to demonstrate that which cannot be explained through words. It is one thing to be told that having Alzheimer’s means that the brain is deteriorating and that a person’s memories are being lost, but it feels much more personal when there is a medium through which a person can experience what their reality could be like if they had the condition themselves.
I started living with my grandparents in 2007 when I was only six years old. At that point, my grandfather had already begun the journey of his slow decline. It was not obvious enough to me in my young age to recognize that there was anything strange about his behavior, though I am sure that my grandmother must have noticed—as she knew him much better than I did. Furthermore, I had no concept of what Alzheimer’s was at the time and was unaware that there were symptoms to be looking out for. As I listened to the album, I thought about him and about how some of the behavior I observed was being represented by the music.
“Stage 1: Here we experience the first signs of memory loss. This stage is most like a beautiful daydream. The glory of old age and recollection. The last of the great days.”
In this stage, it is already clear that the music is not as fast and crisp as it is in the original songs. Despite this, there are no major distortions and the melodies are still quite easy to follow. There is a certain bittersweetness to the songs that play here, as though the character is fondly remembering good times while also being sad of what has passed. The most prominent track in this stage is titled “It’s just a burning memory”; it is sampled from the song “Heartaches” by Al Bowlly and has essentially become the face of the album. Much like the music, my grandfather was mostly the way he had been throughout his life before the disease claimed him. He was still speaking in full sentences and was able to walk with me in our backyard. He also used to flirt with my grandmother quite often, whistling at her from across the living room or in the doorway and smiling when she looked at him. Most vivid is the image of him playing the accordion as he had with his Tejano band years before. He would either sit on the bed in their bedroom or the armchair in the living room; I loved to watch his fingers fly across the keys. I did notice that there were times when he would ask something more than once or come to my bedroom to check on me quite a few times throughout the day.
“Stage 2: The second stage is the self-realization and awareness that something is wrong with a refusal to accept that. More effort is made to remember, so memories can be more long form with a little more deterioration in quality. The overall personal mood is generally lower than the first stage and at a point before confusion starts setting in.”
The music here feels gloomy and even ominous at times. The crackling has become a bit louder and the music cuts at the end of some of the tracks, standing still before the next track starts. I found the track titled “Glimpses of hope in trying times” particularly compelling; the melody that played throughout was unsettling but did give way to a more hopeful sounding melody as its name implies. My grandfather’s walking began to slow significantly. I would sit in my room, listening as his soft, dragging footsteps made their way through the hallway. He would stay in the bathroom for a long time, though we could not understand why. As it became harder for him to walk, my grandmother did not want him going outside. There were times, however, that I would find him either about to walk out the kitchen door to the backyard or already outside while my grandmother was taking a nap, and I would have to wake her to let her know what he was doing. I could not understand why he was doing this—why he could not just do as my grandmother said.
“Stage 3: Here we are presented with some of the last coherent memories before confusion fully rolls in and the grey mists form and fade away. Finest moments have been remembered, the musical flow in places is more confused and tangled. As we progress, some singular memories become more disturbed, isolated, broken, and distant. These are the last embers of awareness before we enter the post awareness stages.”
In this stage, the music is very clearly distorted: the crackling is very loud, the music sounds far away and shaky, and parts begin to loop, as the melody falls out of shape. The track “Hidden sea buried deep” consists of the beginning of a melody starting over and over again, representing a desperate effort to remember something before abruptly giving up. The last track of this stage, “Mournful Camaraderie”, features a sample of “Heartaches” once again, but it has been stretched out and looped, making it nearly unrecognizable. There are also brass instruments in the background playing long notes, creating a sense of finality. My grandfather began walking less, then he stopped. I am not entirely sure what year that was, though I believe I was in middle school, meaning somewhere between 2012 and 2015. He had injured his foot and never quite recovered, plus he was diabetic, so he mostly stayed in a wheelchair or resting on the armchair in the living room. He still replied when spoken to, but with simple sentences or words. When my grandmother asked if he remembered who we were, he would simply look at us and smile politely.
“Stage 4: Post-Awareness Stage 4 is where serenity and the ability to recall singular memories gives way to confusions and horror. It’s the beginning of an eventual process where all memories begin to become more fluid through entanglements, repetition, and rupture.”
This stage is full of loud static and disjointed melodies. The sound of instruments pops out at unpredictable intervals. The audio goes back and forth between the listener’s ears. I found this stage unpleasant; the transition between the last track of stage 3 and the beginning of this stage is abrupt, almost creating a jump-scare. It was overwhelming and grating. There were nights when, as I lied silently in bed, I could hear my grandfather talking in fragmented Spanish through the thin wall that separated my grandparents’ bedroom from mine. I knew that he was not talking to my grandmother because I could not hear her speak back or move around the room. When I asked my other family members about it, they said that he would just talk while looking at the wall or ceiling.
“Stage 5: Post-Awareness Stage 5 confusions and horror. More extreme entanglements, repetition, and rupture can give way to calmer moments. The unfamiliar may sound and feel familiar. Time is often spent only in the moment leading to isolation.”
This stage is even more chaotic than the previous. The instruments almost sound like human voices, muffled and far away. The static is harsh and choppy, resembling the sound of rough patches of road on a freeway. Towards the end, the sound begins to cut out at random points. Just like the previous stage, I found stage 5 unpleasant and disturbing; I particularly disliked the way the instruments sounded like voices. My grandfather did not speak much anymore, except for the occasional fragment or grunts in reply to people. He would mostly nod or shake his head when asked basic questions like if he was hungry or if the room was too hot. His sister would visit occasionally and there seemed to be recognition in his eyes. He also still knew his own name and would perk up when addressed by it.
“Stage 6: Post-Awareness Stage 6 is without description.”
This stage is comprised of long droning as if being inside of a tunnel. The music has been stretched out so far that there is no discernable melody. The tone shifts slightly at times, but that is it for most of the stage until the very end. This stage felt extremely lonely and hollow. It was unpleasant to sit through just like the two stages before it, but for the complete opposite reason. In my mind, I could picture myself standing alone in the middle of a dark cave with no light to tell me exactly how far in I was; only vague sounds from outside the cave to let me know there was still life around me. In the last six minutes, a choir can be heard singing, then there is a full minute of silence before the album ends. It is theorized that the singing choir represents the moment of clarity that the elderly have before they pass, and the silence signifies that The Caretaker has passed. It was hard to get my grandfather’s attention at times; he would just stare straight ahead or up at the ceiling while we tried talking to him. Feeding him took a very long time (sometimes two hours), and he would forget how to swallow his food and drink, holding it in his mouth for long enough that my family was constantly worried that he would choke. My grandmother was eventually diagnosed with cancer in the winter of 2018 and declined quickly from there. They were both placed in a hospice center because she could not bear to be apart from him. She passed in the summer of 2019, but he was still going on strong. He was moved to a nursing home since he was not actively declining. He eventually passed away in August of 2020.
While listening to Everywhere At The End Of Time, I came to the conclusion that we are who we are because of our memory. Our identity is shaped by our life experiences, and to lose it is to lose ourselves. Most can understand that it is hard to witness a loved one lose their memory, but I feel as though many do not think of the situation from the patients’ point of view: we lose them, but they lose everything. Alzheimer’s disease is a very lonely one. Without the memory of loved ones and the experience gained through their lifetime, a patient is left to fend for themselves in the flurry of disorientation and fear contained inside their mind. Though we cannot know what it is literally like to experience the disease without having it ourselves, I feel as though this project got through to its audience, helping them empathize with the patients and contemplate the fragile nature of the human mind.