Overview

An unsettling musical project took me inside the dissolution of my mother's mind.

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Listen to this story, read by the author with music

My mom is slipping away.

I don’t mean she’s dying, although she’s doing that too, gradually. But it’s her mind I’m talking about. And because it’s her mind, it’s her self, my mom, who’s slipping away.

A few weeks ago she said, “I didn’t know how to tell you this, but I’m just gonna tell you. He left last night, and he didn’t say why.”

I asked who had left, and she said, “You know who. Their father.” She looked at me, exasperated. “The father of my boys!”

“You mean Dave?”

“Yes Dave! It’s so humiliating.”

My dad Dave died 45 years ago, and he never left her.

Mom has Parkinson’s, and dementia is part of the package. Right now it’s coming and going. Sometimes she’s completely lucid, including a few minutes after she told me this.

Sometimes she’ll sing. Even in the depth of a delusion, she will suddenly belt out a song from 70 years ago, note-perfect and every word. I once heard an Alzheimer’s specialist on the radio say that music is often the last thing to go. Long after the ability to do just about anything else cognitively, people can remember and sing a song from when they were young. And when the music is gone, the specialist said, the person is gone too.

Long after the ability to do just about anything else cognitively, people can remember and sing a song from when they were young. And when the music is gone, the specialist said, the person is gone too.

In-between lucid periods, Mom will talk about the pot of stew she needs to check on the stove, and 20 people due any minute for dinner. Or she’s looking for the keys to a car she doesn’t own so she can go to the store, which she hasn’t done in years, because she forgot to get something yesterday. And the worst of it is that the fog sometimes lifts, just long enough for her to shake her head and say, “Stupid.”

I don’t know what that’s like. But a stunning musical project has given me a glimpse that I can’t shake. It’s given me an insight into my mom’s suffering in a way nothing but music can do.

I’ve talked before about the fact that music has an advantage over almost any other art in capturing lived emotional experience because like life, music unfolds and changes over time. It can start in one emotional place and gradually or suddenly move to another one. The fact that music shares that element with life itself—that it unfolds over time—is key to understanding its expressive power.

I’ve felt that power, and I’m sure you have. A well-crafted piece of music is a vehicle that takes you through emotional landscapes. It allows you to feel those shifting emotions as you ride along on the vehicle of the music itself. You bring with you all of the music you’ve heard in your life. That’s what helps you make sense of what you encounter. Melody, harmony, rhythm, meter, scales and keys, all that past experience helps you decode new music as you pass through it.

When you hear music that doesn’t follow the rules you’ve come to expect, it’s disorienting.

Schoenberg, Fünf Klavierstücke (iii) op. 23 (1920/23)

This is Arnold Schoenberg, the father of atonality, music without a key, disorienting you on purpose. He’s done it by dismantling the key. Your ear isn’t able to find one home pitch, one note at the center of all the others, because he’s avoiding the kinds of patterns and hierarchies that cause one pitch to pop out as the emotional center. But it’s still music, right? The pitches are hard to predict, but they are pitches, and they are forming rhythms, and you’re hearing a piano, a musical instrument. And you can still feel yourself moving through time, encountering all of these strange things like you’re on the log flume at Disneyland. You can still feel the vehicle itself around you.

Schoenberg once wrote a song cycle called Pierrot Lunaire, that includes an element of madness. The main character, Pierrot, has fallen in love with the moon, which is lunacy—luna, from moon—and sings of his sadness that she doesn’t seem to love him back. The music is atonal, and the singer slides through the notes in a half-spoken, half-sung style:

It’s a pretty good depiction of madness, isn’t it? But again, it’s still music, still notes and rhythms and patterns and progress through time. When I listen to Pierrot, it feels like I’m seeing madness from the outside. I don’t feel a loss of sanity / myself. I’m still on the log flume, observing. So it’s not like I’ve really understood madness any more than before.

That’s how I feel when my mom slips away in the middle of a conversation, doesn’t know who I am or where she is, becomes terrified or combative. No matter what I try to do, I’m outside of it, drifting by on the log flume, an observer. I’ve wondered how I could better understand what she’s going through.

My question was answered, to my surprise, by a piece of music—easily the most profound musical creation I’ve ever come across. It moved me beyond log flume observer by asking what would happen if the vehicle itself began to fall apart.

Everywhere at the End of Time

Everywhere at the End of Time is a musical exploration of the onset and progression of dementia.

It was created by the British electronic musician Leyland James Kirby. He’s created a number of projects exploring the deterioration of memory, and nostalgia, and melancholy. His projects and his moniker, The Caretaker, were inspired by the haunted ballroom scene in The Shining.

Everywhere at the End of Time consists of 50 separate named sections of music, ranging from a minute and a half to 23 minutes long, representing the gradual deterioration of the mind through six stages of dementia. Kirby researched the stages and interviewed specialists at length to inform the project, which runs to six and a half hours.

If the mind is the vehicle from which I observe and make sense of the world, and music is a vehicle that takes me through landscapes of emotional experience, maybe I can get closer to the experience of my mind falling apart through a piece of music that does the same.

It starts with the song you’re hearing now—a pop ballroom hit from the 1930s called Heartaches. It’s the kind of song that suddenly pops out of my mom. Kirby presents it with the echo of a fond memory, a little vinyl crackle like it’s on a turntable, right, but otherwise intact.

The second song has the same sentimental quality, but you’ll notice it’s slightly less focused, right, like the performer is a little too fond of the sustain pedal, and the piano is out of tune. And it takes a while to realize that the same 8-bar phrase is repeating, over and over again.

As it continues through the first stage, through short pieces with names like “Late Afternoon Drifting” and “Slightly Bewildered,” it’s not a straight line downhill. Sometimes there’s very little distortion. And sometimes the haze of noise and echo is so thick, you can barely make out the music. But it’s there:

After 12 sections, the second stage of dementia begins—a refusal to accept that something is wrong, even as awareness grows that something is. It begins with a piece called “A Losing Battle is Raging.” And it’s here you can feel the dissolution becoming real:

The titles become little devastations of their own: “Misplaced in Time.” “Surrendering to Despair.” “Last Moments of Pure Recall,” which is the last time the music really sounds at all musical:

From that point, it begins to fall apart, and we get names like “Denial Unraveling” and “The Way Ahead Feels Lonely”:

Now we’re entering Stage 3, the last stage of awareness. Some isolated memories and thoughts are still possible, but they are confused and broken. It’s hard for the person to deny any longer that the wheels really are coming off.

The mind runs after every glimpse of coherence, but the fog always claims it. Memories take on a taunting quality as even the emotion around them is twisted and broken:

Sometimes the noise overwhelms the music—and because the music is the vehicle to navigate emotion and memory, there’s a feeling of sitting alone on the track in a pile of splinters:

Sometimes the music, the way sense is made, is gone entirely:

And when the music does reappear, toward the end of Stage 3, it’s a meaningless shadow of itself. You just want it to stop:

To give the project a terrible realism, Kirby mapped out the stages not only in order, but in their common relative durations, one stage to the next. As we leave Stage 3, the last stage of awareness, two hours have passed. We’re headed into much darker territory, and you realize you have four and a half hours to go.

Kirby put it this way:

Stage 4 is where serenity and the ability to recall individual memories gives way to confusion and horror. It’s the beginning of an eventual process where all memories become more fluid through entanglements, repetition, and rupture.

At this point, I want to give you three options.

If you’ve heard enough, and you get the idea, and you’re not in a place right now to experience a depiction of the complete breakdown of a human mind, please stop here and go about your day.

If you’ve heard enough to know you want the full experience and you want it now, go to Everywhere at the End of Time on YouTube or Bandcamp. The comments from people who’ve committed the full six and a half hours can give you an idea of what you’re in for: “Just listened to this why did i lose myself and it feels like nothing is real anymore what makes it feel like this.” “I got to stage 5 and I literally cannot take it any longer.” “This broke me.”

If you seek the middle path, and you want to hear a sampling of this upsetting but genuinely profound attempt to use music to try to understand what 50 million people worldwide are experiencing right now, including my mother and maybe yours, maybe eventually you and me—listen to the last 15 minutes of the audio version of this post, embedded at the top.

You’ll hear “Post Awareness Confusions,” “A Temporary Bliss State,” “Advanced Plaque Entanglements,” and “A Confusion So Thick You Forget Forgetting.” Then halfway through the final section—which is called “Place in the World Fades Away”—something unexpected happens, something that’s been much discussed online—the return of actual music.

So what was that about? Kirby isn’t saying. Some people hear an angel choir in that, of course. That’s fine. But Kirby is an atheist, so he’s more likely depicting something called terminal lucidity. Some dementia sufferers have a sudden recovery of clarity and even memory in their final hours. That sounds like the wishful thinking we layer around the experience of death, but apparently it happens often enough that researchers have spent some time on it. We know the brain goes through significant changes as death approaches, like the flaring of the visual cortex in a pattern that suggests a tunnel of light. One of the most convincing ideas I’ve seen for terminal lucidity is that a flood of neurotransmitters in the brain as death approaches activates dormant neurons, temporarily restoring some connections and function.

Even the full six and a half hours of this project is a compression of the experience of dementia. Of course, that’s the horror of it. This dissolution of self becomes your experience of life for the rest of your life.

Some people listening to those final minutes of Everywhere at the End of Time talk about a feeling of elation and relief when that relative clarity returns after all that time in the fog.

Now imagine the real thing—after months or years of confusion and darkness, experiencing the actual return of the music.

Dale McGowan is the author of Parenting Beyond Belief, Raising Freethinkers, and Atheism for Dummies. He holds a BA in evolutionary anthropology and a PhD in music.