Everywhere at the end of time

Bill_2001

“My dearest wife, is this how the world seems to you? Dear God in heaven.”

“Everywhere at the end of time,” a six-album recording by Leyland Kirby “The Caretaker,” was released over a three-year period between 2016 and 2019. It is an art-music creation that takes the listener though the stages of Alzheimer’s and dementia, from a first person point-of-view. It is not an easy listen; most people have found it to be very disturbing. I found it oddly comforting, to know that an artist understands this condition so well. I first heard about it 3 years ago, but finally decided to purchase it this year.

The six albums take 6 hours and 30 minutes to unfold. I spent a week listening to it in its entirety. It was the most emotional experience I have had in years - outside of the heartbreak of my dear wife’s dementia itself. It is a simulation of the brain being slowly ravaged by dementia, and eventually succumbing to it. It is nostalgic, melancholy, terrifying, and at its end, peaceful.

I do not recommend this to anyone that may be susceptible to depression. Simply reading though the track titles can be upsetting. Three years ago, when my wife was still in stage 4, I knew that I was not ready for it. I am a music lover, and I enjoy music for all types of moods and situations. Now that my wife is in stage 6, I felt that I was ready to experience my emotions. I purchased the set and set aside the time to listen.

What a cleansing experience. This is such a long series that my mind had time to drift, reminisce, and grieve the losses that I have mostly put out of my mind. I sat with my dear wife and looked at pictures with her while the albums played. The listening experience was like going through grueling therapy sessions that I did not know I needed. It was in fact better than some of the so-called professional coping advice I have received. The series helped validate the steadily increasing isolation I have felt for years, and yet so few people have understood.

The effect that this album had on me is difficult to explain. The horror of slowly losing my wife and having no one to help me has never been better represented in any form. After all of the disappointments and failures of the medical system, friends, family, and organizations in general, this long series felt like the loud scream that I had been holding back after all of these absolutely miserable years. I actually took a sigh of relief after the first listen.

There is no cure for dementia, no hope of improvement, and no relief for the caregiver. This ordeal just goes on and on, getting worse and worse, all while fewer and fewer people even bother to ask how I am doing anymore. Getting help with caregiving is priced out of reach for many of us. Alzheimer’s and dementia, whether you are the patient or the caregiver, is a long suffering nightmare. And somehow I find comfort in listening to this work.

The Caretaker uses 1930s ballroom music to create a mood of nostalgia and melancholy. As the series progresses, the music begins to mimic the symptoms of dementia. Songs crackle, fade, stop and start, and loop as if the patient is struggling to remember. It gets worse as you move forward through the albums, with occasional moments of clarity and peace. The series is presented in albums named Stage 1 through Stage 6, which roughly represent stages 2 through 7 of the seven-stage dementia model.

The first three albums represent the awareness stages, and progress from melancholy to gut-wrenchingly disturbing. The first album is nostalgic ballroom music. I felt something was a little off, just like early dementia. The second is melancholy ballroom music. This one hurts. Many people bail here and that is ok. The third album is more melancholy ballroom music, but something is so terribly wrong that anyone can feel it. This is when friends and family can finally see what you have been telling them. The album is unsettling and nightmarish.

The next two albums are nothing short of horrifying. The fourth album brings on such a sudden, jarring decline that it genuinely frightened me. It is no longer music – the earlier tracks are now distorted and looped so as to mimic very short-term memory loss. This perfectly simulates the moment that many caregivers have experienced: A sudden sharp progression in their loved one’s condition. Gone are song divisions, replaced by clinically-named tracks the length of an entire album side. This is an agonizing double album; it made me empathize with my wife in a deeper way than ever before. The fifth album is straight-on terrifying. The ballroom music is in there somewhere, but it is twisted and horribly distorted. It is another double-length 90 minute album. The artist really wants to drive home the fact that Alzheimer’s and dementia goes on for a very, very long time. The fourth and fifth albums also serve to represent the most difficult times for the caregiver.

The sixth and final album, again 90 minutes long, represents the journey’s long ending. The music is gone now. Instead, there are three very long tracks of crushing emptiness. Even the horrible noise of the fourth and fifth albums is gone. Booming echoes give way to periods of eerie silence. The closing track brings music back for the first time in over four hours. A distant choir represents the phenomenon of terminal lucidity. Finally, in observance to all that have fallen victim to this terrible disease, one minute of complete silence ends the series. It is crushing. I discovered emotions that I had buried for years, and if you are sensitive to the effects of music and sound, this final album will bring you to tears.

Bravo to The Caretaker for taking the time to create this series. It has been met with much critical acclaim from the medical community for bringing the realities of dementia to people that are otherwise unfamiliar with it. It serves as an artistic representation of the ordeal that caregivers endure as well.

Due to the disturbing nature of this series, I am not sharing a link. You are free to conduct an online search, as the series has quite a large internet following.

With Love, Bill_2001

fmb

@Bill_2001 Thank you for sharing this. I found it on the internet and will listen to it when I am ready, whenever that might be. It will be especially difficult for me, as DH was a competitive ballroom dancer and we danced together for enjoyment for years. DH and my mother are both in Stage 7 ALZ, and I attended my ex-husband's funeral today. I will need to be in a much better place emotionally, but I will listen to it…someday.

ButterflyWings

I am not yet ready for this (and don’t know how I would carve out the time right now, even if I were).

But it sounds incredible and I definitely will listen to it at some future time when I can devote the solo time and space to experience it without my DH.

Thank you for caring enough about us to not only share the information but put so much effort into providing a detailed description of this work and your personal experience of this immersive art.

On a much less complex level I think, I recall reading about a project that took a different approach to helping understand what our PWD LOs go through. It provided an interactive immersive simulation experience using adaptive technology including even simple tools like super blurry glasses and earplugs plus other things to mimic some of the barriers dementia creates for a person.

They then had to follow a set of instructions to get dressed and navigate some other “normal” household tasks, which they failed at, and were almost in tears at how helpless and useless the challenge made them feel. It really opened their eyes to how their LOs were struggling and likely feeling, and this was just a temporary simulation which they could stop at any time. They reported having much more compassion as caregivers afterward.

Kudus to the artists, educators and others who work to interpret and shed more light on this disease and how it affects people in real life.

Thanks for your courage Bill, and also for the thoughtful analysis as well as the cautions.

Jgirl57

Oh wow! Thanks Bill for this post . Not sure I am ready to listen but I am curious

AnderK

Thank you for sharing

trottingalong

I know I am not ready to listen at this point in time. I did read through your post though, and appreciate you taking the time to describe this very unique experience.

AnderK

Thank you for sharing

Bridge4U

Bill, I really appreciate your thoughtful analysis of how this artist has been able to portray the agonizing emotional journey that we and our LOs are experiencing. In the same way that we as Caregivers may gain some sense of satisfaction by reading other’s comments and knowing that we are not alone in dealing with the raw emotional swings of living with this dreadful disease, there may be some deep, dark beauty in hearing how a talented artist has been able to reflect on those emotional elements in a way that is familiar to us all.

Victoriaredux

Thank you Bill , you are such a wonderful writer. I'm not ready for the Caretaker but am finding comfort in this song "Adios Ayer" by Jose Padilla , mainly music but beautiful lyrics ;

"Thinking of tomorrow
With the sunset in your eyes
I feel everything and sorrow
So I have to say goodbye"

that makes me cry and smile as I feel my heart tear - but anticipate their freedom from the disease at the end .

https://www.youtube.com/watch?v=g79NbzdNQb8&t=1s&ab_channel=Intelectronica

ghphotog

Thanks Bill! I'll check it out at some point but right now I'm too familiar with the horrors of this disease to relive it from the beginning again but I will check it out sometime.
H

https://alzconnected.org/discussion/comment/216413#Comment_216413

GothicGremlin

Thank you, Bill. I wasn't aware of this set at all - so of course I had to go find out all about it (wikipedia knows all).

I'm not prone to depression, but I know I'm not ready to listen to this — and I may never be ready. I'm glad it's out there though.

ImMaggieMae

Thank you for posting this, Bill. It isn’t something that I want to listen to at this point, but doing a search shows several YouTube sites that have the entire series.