Cover art for each of the 6 albums (each representing a different stage in the progression of Alzheimers/dementia) by artist Ivan Seal.

This is the first post of two.

I didn’t think the first post I’d write in more than two months would be about a six and a half hour long ambient album I stumbled across on Youtube because some Gen Z kids decided to challenge themselves to cry on Youtube after listening to it and thus made the original video (not their reactions, as interesting as they were) go nearly viral.   But here I am and that’s what I’m going to write about (the album, not the bored Gen Zers).  Life is weird, what can I say?

Actually, I have a lot to say.  I’m not exaggerating when I tell you this was the most profoundly emotional musical experience I’ve ever had.  It broke me, and then it changed me.  For now I’m just going to focus on the music (if it can be called that) and its immediate effects on me.

But first a little background.

Everywhere At the End of Time is an experimental/ambient musical art project (technically, “dark ambient”) by British musician and composer James Leyland Kirby (he bills himself as “The Caretaker,” after the Jack Nicholson character in the horror movie The Shining, which  was also the inspiration for the haunting 1930s ballroom music that opens this album and reappears in more distorted versions at intervals throughout).  The Caretaker wanted to convey, using music and later, degenerated music that can only be called noise, what it’s like to experience dementia from inside the deteriorating mind of a sufferer.

Everywhere at the End of Time is divided into six entire albums, each one roughly corresponding to the 7 medically recognized stages of Alzheimers Disease (or dementia due to other neurodegenerative diseases such as Lewy Body Dementia, a form of Parkinson’s that affects the brain rather than the body).  The six albums were released during a three year period, from 2016 to 2019.  Kirby felt that by releasing the albums over a long period of time, listeners would get more of the feel of the long slow decline of dementia, and also experience the sense of waiting the patients’ loved ones go through. Kirby said he became so fascinated with dementia, particularly Alzheimer’s dementia, that after studying its effects on the human mind and body, he was inspired to depict its ravages in musical form.

Kirby was kind enough to make his masterpiece available to everyone.  All six and a half hours of it can be found here:

https://thecaretaker.bandcamp.com/album/everywhere-at-the-end-of-time

If you prefer, the album in its entirety can also be found on Youtube:

Before I set out to describe each Stage and my reactions to them, I want to mention  some other reaction/review videos on Youtube.  Here is one of the best ones (this is in fact the one that sent me down the rabbit hole):

And another, which I really liked a lot:

Before I go into my reviews and reactions, let me explain why there are so many reaction videos, which seem to be mostly from geeky young men and gamer types.  Shortly after its release, it became a kind of meme to “challenge yourself” to listen to the entirety of Everywhere at the End of Time (because it’s not an easy listen and at times can be profoundly depressing or existentially terrifying) and then post your reaction to it.  The challenge started on Tik Tok and eventually moved to Youtube. 

Some critics of the reaction videos felt that these millennials and Gen Z’ers were making light of a serious album about a dark subject and turning it into a kind of game. They believed that cheapened what Kirby’s project was trying to convey.  But Kirby actually wasn’t bothered.  When he found out about the Everywhere at the End of Time “challenge,” he said that if his music was causing younger people to develop empathy toward (mostly older) people with dementia and Alzheimers (and since almost all of them cried, empathy could be assumed) and making a “challenge” out of it was the the avenue that inspired them to actually listen to the entirety of something so dark and serious, then it was a good thing.  This genre of music (dark ambient/drone) isn’t exactly catchy pop and would never get radio airplay, but because the Tik Tok/Youtube challenges made Kirby’s project go near viral, it’s getting a lot of attention it otherwise would never have achieved.  And that’s educating a lot of people about dementia and voluntarily experience, through the music, what it FEELS like to have this illness. It teaches empathy for people with this devastating disease. One woman I know who works with Alzheimers nursing home patients, says she has developed a level of empathy for these patients she never had before listening to Everywhere at the End of Time.    Even I, who was never very patient with my ex husband’s mother, who lived with us while suffering from early to mid stage Alzheimer’s, now feel sadness and regret that I wasn’t kinder to her while she was with us.  This disease must have been pure hell for her but she was unable to express her terror and grief coherently.  She passed away years ago; I wish there was a way I could tell her I’m sorry.

Like many others, I was scared to listen to Everywhere at the End of Time at first.  It was the video I posted above called “This Album Will Break You” that first caught my interest.  The clips I heard in that were pretty damn unsettling.   I wanted to listen to all six and a half hours, but I was afraid to in that same way some people are afraid to take LSD or another psychedelic drug if they’ve never done so before.  They’re afraid they might lose their minds.  I sensed this album was going to take me mental and emotional places I wasn’t sure I wanted to confront, but at the same time, I knew that doing so could be potentially life changing.   In the comments under the videos, I saw I wasn’t alone in my trepidation.  Many people are literally afraid to listen to this album because they know how unsettling, upsetting, and even terrifying it can be.  One way around this is to make your first listen “with” someone else who is narrating it for you.   So my first listen was with PizzaManSteve, who plays the entire album and reacts and comments throughout.  His loud reactions and crying at the end are a bit distracting and makes it hard to hear the music, but it’s a genuine reaction that many people seem to share.  The first time you listen, you may want to listen to his video first, as you’ll feel less “alone” than listening to the full album posted above without any commentary at all.  I was afraid that would freak me out. Yes, it’s that intense.

Before I move on to my reactions, I want to mention the artwork by Ivan Seal.  The six paintings used to illustrate each stage of dementia are absolutely perfect in conveying exactly what the stages FEEL like.  The objects they depict are difficult or impossible to identify, but they still look and feel familiar, the way an Alzheimers patient might look at a person or an object, and not quite be able to place who or what it is, and yet know they have seen it before.  The feel of these paintings is similar to the “name one thing in this photo” viral AI photograph that shows a bunch of familiar looking objects that you just cannot identify.  This was supposed to depict what things look like to stroke victims.

The paintings look organic, disorganized, or decayed. Even the flower vase in Stage 2 is unsettling.   The woman’s masklike face in Stage 4 depicts loss of self awareness a patient with dementia experiences at that point in her illness.  It also may be how others start to appear to her, as she loses her ability to remember the names and faces of even her closest family members.

All the images are incredibly unsettling in ways that are hard to describe (much like the music itself), but for some unknown reason, the artwork for Stage 5 frightened me the most.  Stage 5 is advanced Alzheimer’s, nearing the end.  During this stage, the brain literally self destructs, destroying whatever memories still remain.  Its “songs” have  titles like “Advanced Plaque Entanglements,” “Synapse Retrogenesis,” and “Sudden Time Regression into Isolation.”

Holy hell, that sounds absolutely horrifying.

Back in the 1990s, an artist named William Untermohlen, who had been diagnosed with Alzheimers in 1995 at the age of 61, decided to paint himself at intervals throughout his illness. Each portrait here (except the first) roughly corresponds to the stages depicted in Everywhere at the End of Time.   As Untermohlen’s memory and sense of self declined, you can see these changes in this series of self portraits (the first was a self portrait from 1967, years before the onset of his illness).

End of Part 1.  

Go on to Part 2.