(Continued from Part 1)
All artwork illustrating the stages of dementia are by Ivan Seal.
Yesterday I gave you a bit of background about Everywhere at the End of Time, a musical and artistic masterpiece by “The Caretaker” (James Leyland Kirby), a British composer and musician who became deeply interested in Alzheimers Disease and the process of dementia, and composed a six album work of musical art depicting what the descent from near normality to the empty void of total memory loss would feel like.
I suggest you read both these articles first (and watch some video reviews about it first), before diving into this thing. I will warn you right now: it’s dark and at times both tragically sad and existentially terrifying. You may feel overwhelmed or have strange physical sensations such as cold chills. You might feel scared or paranoid. You likely will cry. In my opinion, listening to this is not a lot different from taking a mind altering drug like ayahuasca or another psychedelic. You should set aside an entire day because you might need to focus on your feelings and thoughts and have time to process everything and think about what you just heard. Some people prefer to listen to it over several days because it’s hard to take it all in in just one sitting.
I’ll post the link again for the entire six and a half hour long album.
It’s also on Youtube (you can also find it divided up for each stage if you prefer that).
All that said, let’s dive in. I’m going to describe each Stage as best as I’m able, and talk about how each stage made me feel.
Stage 1 and 2 correspond to the earlier stages of Alzheimers/dementia. This is when a person begins to forget things, such as car keys or has momentary embarrassing memory lapses.
They may forget names, but usually this forgetfulness doesn’t extend to close friends or family members, and it’s fleeting. The person is still functional, may still be able to work or drive a car, but may begin to realize something is wrong.
Stage 1 is composed of mostly upbeat ballroom pop songs, very similar to the haunting 1920s/1930s music from the movie The Shining. In fact, Kirby was so inspired and haunted by the ballroom music in that movie that he decided the same kind of music would work for this album (in fact, he adopted the handle “The Caretaker” after the Jack Nicholson character in that film). He liked the sense of nostalgia the ballroom music evoked, the echoey sound of it that made it seem like it was coming from empty, cavernous rooms, and also the feeling of it being “a long time ago,” since Alzheimers usually affects the elderly. The music was just haunting enough, without actually sounding “off,” that while a pleasant listening experience, it could also be thought of as depicting the very earliest stages of Alzheimers, with the person displaying no symptoms yet but tending to focus on the past and losing themselves in nostalgic reverie about romantic interludes when they were still in their prime.
The album notes make the same observation in different words:
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.
Stage 1 is definitely the most listenable stage, not at all offensive, but as the pretty music does sound like it’s coming from empty, cavernous ballrooms and I associate it with The Shining, one of the scariest movies I ever saw, it’s still a slightly unsettling listening experience. You also know what’s coming. The very first song, here called “It’s Just a Burning Memory,” appears again and again in every subsequent stage, each time sounding less and less like the original. Sometimes you can only hear a few of the chords behind waves of static, or the chords are so drawn and stretched out they sound like whale calls, or it just sounds really “off.” I’ll explain more about this as we move on. I think this particular song represents the patient’s most cherished memory, the one they never want to lose. The struggle to hold onto this memory throughout the course of this disease is one of the central themes that makes the dementia experience so emotionally harrowing.
From the album notes:
The second stage is the self realisation 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.
This is the last album in the series that one might call pleasant listening, though I found it HIGHLY unsettling and could not listen to it for more than a few minutes at a time because of how edgy and uncomfortable it made me feel. While this stage still depicts early Alzheimer’s and the person is still more or less functional, we are at the point now where the patient is aware something is very wrong, may have received a diagnosis, and is terrified, knowing there is no cure and it will only continue to get worse. This existential dread and terror is evident in the music, which comes across as an unpleasant dissonance, rising waves of static (brain noise?), songs that appear to stop and start, and then stop again, as if something has been “forgotten” and the person is trying to remember. The ballroom music here, while still pretty, sometimes sounds sour, off key, or as if it’s coming from inside the person’s head. The song “What Does It Matter How My Heart Breaks” is a reprise of Stage 1’s “Just a Burning Memory” and while clearly recognizable as the same song, is chillingly distorted and diminished somehow.
The artwork used on the album cover perfectly captures the feeling of Stage 2. It’s pretty, just flowers in a vase, but the flowers look sad and wilted, and the vase itself is just…wrong. Like something in a state of decay.
I can’t listen to any of Stage 2 without feeling a sense of impending doom, though it’s hard to pinpoint exactly why. I don’t like it. But this is nothing. Things only get worse from here.
Stage 3, in some ways, is the most terrifying to me. At this stage, the dementia patient is beginning to have more severe memory lapses and may now need help with everyday activities. They may fade in and out of being aware and outside awareness.
The album notes state that
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.
This is the last stage in which the patient is still aware they have a problem. They are standing at the edge of a bottomless abyss.
Stage 3 is nearly unlistenable to me. Though it still can be classified as “music” rather than the “noise” that is to come, it’s increasingly disjointed, dissonant, chaotic, and garbled, at times edging into walls of static, which keep getting louder. By the end of this stage, the wall of static and noise seems to be becoming dominant over the music, which fades in and out, stops and starts in fits, sometimes to be taken over by another snatch of a different song (melody), in a mighty struggle against this disease which wants to consume all memory. “And Heart Breaks” is the Stage 3 reprise of the song that was in Stages 1 and 2, and like its shortened title (as if some words have been forgotten), it seems like a truncated version of its original.
To me, Stage 3 this depicts the person, still aware they are ill and will continue to get worse, desperately clutching onto memories, any memories, as they come up, but they are quickly swept away in the ocean of static, competing memories, and confusing, dronelike noise, leaving the person adrift in a sea of helplessness, despair and terror.
Stage 3 was very frightening to me. It made the goosebumps stand up on my arms and I felt ice cold and shaken for a good hour or two after listening. I did not want to be alone, and felt so spooked I had to turn on all the lights and check to make sure the doors were locked. I was unable to continue listening that day, and had to save Stage 4 for the next. I have no idea how I got any sleep that night. Maybe I was just exhausted, as this music can do that to you too.
The artwork, once again, is very fitting and accurately evokes feelings of chaos, confusion, dread and terror. While I think this is supposed to be a broken vase or a bunch of tangled weeds (or a vase exploded by the tangled weeds?), its spidery, sinister outlines and bizarre shapes remind me of dancing demons. There’s a strong feeling of suffocating evil in this image.
After this Stage, the person enters the more advanced stages of dementia, and is no longer self aware. They may be easily confused by things they used to understand and no longer recognize loved ones.
If you thought Stage 3 was chaotic, confusing, and scary, it’s nothing compared to Stage 4, which can no longer properly even be called music. From this point on, the “songs” become long 20 to 30 minute pieces, exploring deepening phases of dementia and brain decay. Three of the four pieces in this stage are called “Post Awareness Confusions,” which is exactly what they are. While they are subtly different from each other, at times they remind me of nothing so much as a radio dial frantically trying to tune into any station at all, failing to pick up more than a few seconds of garbled memory (music) snippets, and disappearing into the maddening static. The third piece, called, “Temporary Bliss State,” is really anythig but. It seems to take a pretty, but repetitive and maddeningly pointless melody that goes nowhere and keeps repeating, and overlays it on top of the static and background noise. It’s as if the person’s decaying mind is desperately trying to think happy thoughts to drown out the horror that is actually playing out, but failing miserably. To call this a “bliss state” seems almost ironic, though it may still be a respite from the constant horror of a breaking brain that only keeps getting more broken.
According to the album description,
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.
The artwork, depicting what appears to be a woman turned partly away from us, in close up, shows a masklike face without features. I feel like this represents the fact that it’s during Stage 4 that a person may no longer know who they are or who they were, and may no longer recognize close friends and family members.
WARNING: There is a “jump scare” in the transition from Stage 4 to Stage 5. As if you’re not scared enough already.
We’ve crossed the line into advanced Alzheimers/dementia and at this point the patient is no longer able to perform even the most basic self care, and is probably in full time nursing care by now. They probably don’t understand or comprehend anything that’s going on in their environment. If they still speak, they may have no idea what they are talking about.
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 is an absolutely terrifying stage, and the disease, which has reduced a feeling, thinking human being with a lifetime of cherished memories into an undead shell of what they once were, now sets about ravaging what’s left of the person’s brain in earnest. Each of the 4 “songs” (again, about 20 to 30 minutes in length for each one) convey 4 horrifying stages of brain decay: two of “Advanced Plaque Entanglements,” followed by “Synapse Retrogenesis” (the synapses between neurons, which formed early in life, are now breaking apart) and finally “Sudden Time Regression into Isolation.”
This last is the most profoundly depressing and scary thing on this album so far. The “isolation” in the title is significant, for after a harrowing 20 minutes of deafening static and ambient drone obscuring distorted and sometimes bizarrely stretched out snatches of ballroom melody that appear and disappear like ghosts in a black hole (I interpret the static here as the “zapping” and destruction of any remaining memories), only silence (isolation) remains. The silence isn’t total silence though; there is still faint static, that infernal droning, and snatches of remaining memory that sound like they’re light years away. But there’s also a kind of peace that finally seems to descend into this howling wilderness: the blissful peace of oblivion. The peace of an empty, unthinking mind that exists now only in the present because there’s no longer any mechanism to retreat into the past.
The painting for this album is incredibly upsetting to me. I’m not sure what it is, though it kind of looks like a woman standing on a staircase holding an umbrella or walking stick. There’s also an object that might be a fan. But it also looks like something disgusting and organic, like a cancer or an infection, or a mysterious and dangerous sea creature from the hadal depths of the ocean. I really can’t look at this image without the little hairs standing up on the back of my neck.
Post-Awareness Stage 6 Is without description.
At this stage, the last stage before death (most Alzheimers patients die of something else first), the person is bedridden, and cannot move. Everything has been forgotten, not just all memories and awareness, but also the primitive brain functions that tell the person how to breathe or swallow. The brain is so destroyed that the person may no longer be able to eat or breathe without medical intervention.
To give you an idea of the severity of the physical destruction that’s taken place, here’s a comparison of a normal brain with a brain destroyed by Alzheimers:
And yet, there’s still activity there. The first “song,” A Confusion So Thick You Forget Forgetting” is mostly just…silence and emptiness. But not quite. Listen carefully; there is a distant dull droning and occasional bursts of static and heavily distorted musical chords recorded at such impossibly low frequency they sound like whale calls…but are actually, unbelievably, the corrupted remains of what were once ballroom pop ditties (memories). The moment I realized what these low, droning, chordlike sounds actually were…it’s hard to explain the sense of horrified shock but simultaneous satisfaction I felt. It was almost the exact same feeling I got during the movie The Shining, when Wendy looks into the model hotel maze in the lobby and it suddenly becomes impossibly vast…or the scene in the 1979 horror movie When A Stranger Calls, when Carol Kane answers the phone, only to be told by police that the phone calls she has been getting are coming from inside the house. You know that feeling. You’ve had it in your nightmares. It’s the emotional equivalent of a jump scare.
There’s a kind of peacefulness in Stage 6 that is almost a relief after the relentless confusion and terror of Stages 4 and 5. In a way, it’s almost relaxing, though it is also unspeakably sad. You may feel sleepy, or just feel empty and exhausted. You may even cry. But if you thought this was sad, it’s nothing compared to the last piece, “Place in the World Fades Away.” I don’t want to spoil anything, but holy fuckballs, Batman. I have never been this emotionally moved by any piece of music, anywhere, ever. It’s a sadness of such depth and intensity it transforms into a kind of joy.
I know I said I didn’t want to spoil anything, but I do need to point out that I don’t think the sudden return of coherent music at the very end was “music heard at the old folk’s home but not comprehended as music” as the young guy in second reaction video (in Part 1) explained it. No, in fact I think the music represented a sudden return of full awareness and even temporarily recovered memories. Yes, even in their mentally and physically degraded state. There is a fairly well known phenomenon familiar to people who work in hospice and with advanced dementia patients called Terminal Lucidity. Shortly before death, sometimes days or hours before, there is a surge of DMT from the pineal gland, buried deep in a part of the brain Alzheimers does not affect. The brain is suddenly bathed in DMT, the strongest known hallucinogenic drug, which is made naturally in the human brain and helps a person transition while dying. Before death, the chemical may temporarily bring back their mental faculties. There have been cases of advanced dementia patients, patients in comas for years, who were believed to be brain dead, who suddenly, just before they died, “woke up” and became fully aware of their surroundings and able to talk to their loved ones. This may be nature’s way of allowing the person one last hurrah before death, as well as helping them make the final transition. Terminal lucidity is what I believe was actually happening when the music suddenly reappeared after hours of nothing but static, noise, and corrupted, fractured pieces of what had once been music. The choir voices that supplant the piano music seem to indicate the person has finally freed themselves of their broken mind and body, finally able to find peace.
The artwork for Stage 6 is an empty canvas with some pieces of tape stuck on it, forming a box or a window. Or, maybe it’s the back of a canvas with the real painting turned away from us, hidden so it might as well not even exist. I’m not sure, but whatever it is, this image depicts Emptiness.
Since I had this experience, I have felt a great sense of regret and sadness over my MIL, who had Alzheimers and passed away in 2003. Because she was no longer able to live on her own (she had become a danger to herself), we took her into our home. My husband had never had a good relationship with his mother, and under the ravages of dementia, her aggressiveness, hostility toward him, and mood swings became worse. My husband at the time, not a patient man, frequently lost his temper, belittled and yelled at her for her forgetfulness and things such as wetting the bed or leaving the stove on. I am ashamed to say I enabled him in this behavior and sometimes participated in it myself. At the time I was dealing with a lot of personal demons and wasn’t very empathetic to her. Our attitude toward this helpless woman also set a bad example in front of our kids. Eventually, her condition became so severe we could no longer take care of her needs, which by now included other medical conditions. We were forced to put her into a nursing home, where she got excellent care until she died. I’ve been thinking a lot about her, about older people and dementia in general, and struggling with regret and sadness for not having treated her with more kindness and empathy. It must have been absolute hell to be inside her mind, succumbing to dementia. I had no idea. I hope God will forgive me for that. I hope she has too, wherever she is. I think people working with dementia patients should be required to listen to this album. It teaches and I think, enhances empathy.
I do feel like my empathy has increased overall. I feel more generally loving toward humanity as a species and have a newfound reverence for the fleeting beauty and fragility of life. We all dance in the sun, and fade away.
I’ll stop here. Everywhere at the End of Time is an artistic masterpiece you should experience for yourself. Each person’s experience is unique, even though there are universal feelings we all can share. Great art should make you uncomfortable. It should make you squirm, get angry, cry, and quake in terror. But in the end, it should make you a better person. I am a better person than I was before I listened to this.
I feel like I should warn you though. if you are currently depressed, suicidal, or prone to anxiety or panic attacks, I would avoid this experience and save it for a later time, maybe. Like I mentioned before, this kind of artistic immersion is not unlike a psychedelic drug and can intensify emotions you’re already struggling with.
Dad didn’t make it to Stage 6, or even very far into 5. He was spared the worst. I’ve likened the process to being as if his life story, his entire memory, were painted on a sheet of glass, maybe tempered glass, that was cracked and random pieces began falling out and lay scattered. Or maybe it was a sheet of class-like sugar and the fallen pieces slowly dissolved.
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That is such a beautiful but heartbreaking metaphor for what your Dad went through. You should write a post about it, or try to paint it. Your dad was blessed he was spared the horrors of the last stage. It’s an awful disease.
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I should write about the whole process, especially the weird parts like the time warps and the intrusion of false memories to fill in blanks.
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Reblogged this on cabbagesandkings524 and commented:
LuckyOtter describes her reactions to the portrait of dementia
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Dear Lucky, glad your posting here. Been checking back here and there for your latest posts. Think i’ll have to pass on the album. But wanted to say, concerning your late mother-in-law. In having tried to care for her, please don’t ever beat yourself up about having gotten frustrated and impatient.
Having read your blog over the last few years, you had posted about a certain brute-beast. That’s the worst thing about the wicked. They take and take and take…until you’ve nothing to give to … well, anyone in need.
And there’s Scripture after Scripture, telling us precisely we need to avoid being around manipulative, and downright mean, people. And those Scriptures get glossed over, if not just ignored, by most preachers. No wonder so many people (who’ve been seriously messed over) want no parts of church, and the Word (Jesus Christ).
Anyway, have a beautiful day.
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Very interesting posts on this project. I recently listened to it myself. I didn’t think it would affect me all that much, and while I didn’t break down and cry, I did get strong feelings from it and did have a bit of a hard time sleeping the very night after finishing it. Getting through it in one sitting might not have been the best idea.
I don’t have much experience with dementia — thankfully the gene doesn’t run in my family, so I hope to avoid these problems, but I did see my grandmother decline pretty rapidly before she went. I believe that’s pretty normal, and thankfully she didn’t seem to be too distressed (though I guess it’s hard for me to say that for sure.) Certainly listening to something like this can increase your empathy.
Your analysis of the art is interesting too. I really like Ivan Seal’s work — I’m not usually much for abstract painting, but I like this kind of art that’s subtle but still disturbing without just going for shock value.
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