Honestly I’m not scared of death I’m just scared of deteriorating, losing my memory and my ability to do simple things and my body just slowly shutting down is terrifying
my brain is so hyperfixed on death that I have lost most of my motivation to pursue my dreams. What’s the point of it if I’m gonna die one day? Why keep going with what I love? Maybe it’s a mix of my depression too but damn, the thought of it all sucks.
@@geosb05 in my opinion I don't think ANYONE is afraid to die, the main things people are usually afraid of is HOW they are gonna die, and what happens after death is also another factor
The best description of dementia I've heard that always stayed with me is "Imagine you've wrote down every memory of every day of your life and every thought on a million pieces of paper, all organised and stacked neatly. Then someone walks into the room with a leaf blower. Now you're plucking random notes out of the air and you don't recognise the handwriting"
Literally my grandfather died by forgetting how to breathe despite at the end being completely delusional talking to his his dead wife, mother and any shadow that looked like it might hold an interesting conversation the mans lungs was healthy as a horse never smoked or drank he always got 99 on the blood oxygen meter one day he was napping in his chair and he just started exhaling kinda jittery like quick puff of air out over and over by the time we realized something was up he'd lost his pulse and at 97 and HOSPICE care for a year we didn't try CPR it was just idk a not right way to go the entire experience or the very end at least he never woke up he went in his sleep @@headphonesaxolotl
The last artwork is a painting turned backwards, symbolizing the person's entire life, still real, but never visible or knowable again. Powerful piece.
when i used to do art class, to prepare for a painting on acryllic paper or whatever, we'd tape it to an old peice of board in the criss-cross pattern in the final image. to me personally, it looks like a freshly finished painting - with the absence of the painting itself. the experience is there, but the product is missing, without a trace.
I have also seen people state that the tape is supposed to mark something as broken or to be repaired. This tape is put on a blank cardboard. So it is broken, but there is nothing to repair.
As someone in cognitive decline, I can't even describe how accurate your comment is. I feel like so many parts of my life are still there. They happened, but are gone at the same time.
Terminal lucidity is still the most terrifying concept I've ever heard of. At the end of your rope, you have a last hurrah. olmost everything you've forgotten comes back for a while, but after a hour or even a couple days you just, lay down and forget how to breathe.
This is actually a common thing with a lot of terminal illnesses. In the bodies last moments, it can almost tell that you’re going to die, so it suddenly goes into overdrive to “protect” you and save your life. Cancer patients often report feeling much better in their final days and even think they’re going to be okay. Then the body finally loses its fight and it goes.
@@RonniV2 when my mother was going to school for nursing, they had to watch a movie to prepare them for death. It was several patients going through their last moments. The one that got the whole class was a woman with cancer who was close to death but was telling everyone she felt great for the first time and that she thought she was going to make it. Her family was really happy too. A nurse quietly walked over to feel her throat, like they knew, and the cancer had reached her lymph nodes. She died soon after.
its forgetting how to swallow its forgetting how gravity works its forgetting you have a child its forgetting how to read its forgetting how to breath forgetting forgetting forgetting
Its ego death, but as a condition, not just as a drug thing. Ive had ego deaths from doing drugs, and while it was nice, I couldnt imagine what life would be like, living in that
fun fact with stage 6's art: it's a painted canvas, just viewed from behind. This is to show that the "painting" (memory) is there but the patient can no longer see or understand it.
I see it a bit like the metaphoical POV of the patient. The painting is like their mind, which is still there, but now they can only see it from behind; it exists, but it's featureless from their perspective. People who are still alive can see the other side; they can see the painting of who this person was, but the person who is dying can no longer see who that person was - they can only see that it existed, and now they're moving past it into death. Stage 6 is one of the best artistic depictions of nothingness I've ever seen honestly
@@user-ch9vd4cd3t I would say I had the physical melancholy when I listened to this for the first time. Like, I was walking somewhere listening to it and the clarinet on one of the parts made me almost weep bro lol shit is crazy
My 64yr old dad is going through early onset rapid Alzheimer’s. Two years ago he was just forgetting little things and would do things like leave the milk out when he used it. Now he has problems getting dressed properly and does things like leave the gallon of milk on top of the fridge rather than inside it. His neurologist gave him a test last week where he had to make change for a dollar, and fill out a practice check to pay a simulated bill, and to identify different pictures of animals like giraffes, rhinos, and elephants to see if he was capable of taking care of himself and he didn’t pass or complete anything on the 1st part of the test and got frustrated and walked out…..by the time i got him home he forgot where we had been or what we had been doing. At thanksgiving he couldn’t remember his nieces or nephews etc., This really sucks.
I remember seeing a post about a grandpa wanting to see his grandson but by then his grandson was married and he thought it was his son, he had a kid and brought him to visit and his great grandpa and he lifted him up thinking it was his grandson and was so happy He later died a few months later and its heartbreaking
From what I've read, the best defense against Dementia is to keep your brain busy as you age. This is why, to answer Jerry Seinfeld's old question, yes, the Japanese know about the fork, but they encourage their elderly to use chopsticks because doing so makes you concentrate, even if only slightly.
You dont get to counter dementia its just something that owns you. it just takes a long time before people realize it owns you. knowledge of it owning you is not something it graces you with.
This makes me feel incredibly lucky that the few days I got to see my grandma during her decline, she was lucid. She didn’t recognize me because she hadn’t seen me for a long time, but she thought I was my cousin so that’s pretty good. We had a nice long chat about life. Her childhood and that kind of thing. I made sure to tell her how amazing of a job she did raising my mom. Got her a sprite (her favorite soda), hugged her, told her how much I love her, and left.
It makes me very happy to hear that you got to see her one last time and got to tell her how much you love her. I lost my grandmother earlier this year due to Alzheimer’s. I didn’t get to see her for the last time, and all I can ponder about now is what her final days were like… Both our grandmothers are in a better place now ❤️
I am a caretaker for dementia patients in a long term care facility. I'm only 18 years old and I started working there at 16. It was a big shock first. I got to know them and learn about their lifes and their caracther. My job essentially is to make their confusion less scary, they get scared and they think they are at an other point in time in their life and my job is to be in their world, not take them back. If someone wakes up in the morning and is telling me they want to go to work or that they are waiting for the train, I just tell them that the train is shut down today, and that their boss called to tell me to tell them that they can take the day off. I have to lie daily, but it's a sweet lie, that makes them be in their own wold intead to be pulled back to the sad reality they are experiencing. I've concidered listening this peice from begining to end and after watching this video, I know that i probably should not. I love my job, I know that it's terribly sad and depressing to work on a unit with 40 dementia patients, but to me it's such an important job and dedication that I don't want to make myself more sad about the subject. My patients are mostly around stage 2 to 4 and to them, they wake up, and they process the same day over and over without realizing it. I wanted to make this comment because it's scary and terrifing to know that it can happen to anyone, but i wanted to remind anyone who is reading this that people that work with these patients, and love their job as much as i do, will take care of them and make them feel as happy as possible. I hope a cure makes it's way into medicine, but until then I will be there and so many other people will be there to take care of these lost souls. Thanks to this job, I now know what my purpuse in life is, and my passion to taking care of others grow's every day.
Thank you so much for your compassion and patience. People like you are what gives patients and their families some form of comfort, even while lost in the throes of their deteriorating health. You're doing so many people a great service, and I hope that we find a cure for this condition too. In the meantime, make sure to take care of your own needs too. God knows that such a job can be emotionally taxing, although very important ♥
Thank you for your compassionate insight. My mom had dementia at the end of her life and she set up her end of life stages and I feel so guilty that she insisted on dying among strangers I hope she had caregivers compassionate as you are ❤.
Thank God there are people like you who help them. My grandmother suffers from this, and it's heartbreaking to see her get confused sometimes. I hope someone finds a cure for this horrible disease.
You are a wonderful person for dedicating yourself to people who suffer from dementia. It's good to know that there are people who care for others when they become incapable of caring for themselves and focus on giving them happiness in their last days. Much respect to you.
I feel like people kinda lost the forest for the trees with this album. People have kinda mythologized it to this thing where every article about it is "The album that makes you want to kill yourself" or people talking about it like "Don't listen to it, it's extremely depressing". When in reality, it's just a piece of music with a message. That message can be sad for some, but the meaning has changed from "Please be aware of this illness and how terrible it can be for some people" to "Look how scary these albums are!"
@@banjogyro The person who made that mod said they felt moved by the album but like. Is trivializing such a serious heavy art piece into a fun little game really the best move? At one point people were upset because fanart of this mod was clogging the dementia tag on instagram that people use to find resources and support groups
The music in stage one gradually transitions from nostalgic and charming to just unexplainably off. It's like moving from "Grandma forgot her keys, she must be getting old haha!" to "She forgot an appointment she scheduled only a day ago." It's the gradual progression that begins to make you worry, even if it's only a little bit.
the worst part is that being forgetful is a trait of being old when its a sign of early dementia which is what ur talking about but its really disturbing to see it go from something minor like forgetting your wallet to not being able to remember anyone or anything
this was almost the exact line of thinking my whole family had watching my nan age, she’s still around but she thinks my mum (her daughter) is still alive when she died 8 years ago. and she thinks i’m still ~6 years old and calls me Michelle when she sees me (i’m 21 now, and look a lot like my mum did). it breaks my heart because her dementia didn’t get bad until i was maybe 17/18 but she still doesn’t remember all those times her and teenage me had together. it’s a horribly sad disease x
I was a caretaker for 3.5 years , It takes a toll on a person . 12 hr shifts are regular . I quit after I stopped caring about clients I took care off .
My old cat had dementia. How we first realized what was wrong, is that when she was younger and couldn't find us in the house, she would meow in a way that sounded like she was saying hello. Then we would call to her, and she would find us. But towards... The end... She would do that while in the same room as us. We would be there and she would be lost and confused, meowing as if we weren't there. Her eyesight was fine, she just didn't recognize us as her family. She stayed starving herself so we made the hard decision of euthanizing her. That was the first time I ever saw death. I found out that when someone dies, they lose control of their pupils. So when she lost life her eyes got really big. And even now I can't get that image out of my mind. I love you and miss you, Kiya. I grew up with you, and until around 2018 I had never been without you. You pretty girl❤️
The ending is symbolic of the phenomenon called "terminal lucidity". Shortly before death, dementia patients will frequently exhibit an apparent return of their cognitive facilities and memories. They are, for a brief time, much like they used to be before the disease.
I realized that with my grandma. She would stare at the walls nd never respond. One night she sat up and said I love you. She past away the next morning
That must be horrifying, to suddenly wake up from your decline with everything you lost, only to remember the fact that you’re just going to lose it again soon, forever this time.
Definitely. My Grandmother (age 92) barely moved, barely talked and hardly ate. Went to the hospital because she couldn't get out of bed one morning. They told us she had cancer and to make her comfortable. When we brought her home she was laughing and Joking around with everyone and even tried to stand up and didn't understand why she couldn't get to her feet. She even said she was hungry. She ate and we got her into bed. 7 hours later she passed away. It was like all those events were a final rally before leaving this world
@@noizepusher7594 It probably isn't even that horrible for the person. Imagine you're suffering for years, waiting for it all to end and then you suddently wake up and realize it will all be over soon.
My grandfather was in the hospital and this happened to him a few days before he died. He was talking and acting normal. My father still thinks the hospital killed him.
A mildly terrifying thought I had while watching: this piece is based around a musical theme emblematic of the childhoods or prime of life for people most likely to be experiencing dementia *now*. Imagine a similar piece, but constructed around a musical theme meant to evoke the 80s, 90s, and 2000s...
even though you say this, i feel more nostalgia for the music that the caretaker sampled than 90's or 2000's music, im born 2005 if you were wondering [so smol, but nearly 18 :( ]
During my grandfather’s last weeks, his memory deteriorated quickly. For his last birthday most of my immediate extended family went to the nursing home he was temporarily placed in with a cake to celebrate. During this, my grandmother pointed around the room to each person and asked him what our names were. He was always bad with names. Even in his prime he would go through about 5 family members names before he got to yours, but he would eventually get it right lol. Anyways, he struggled to remember a lot of our names. When she got me, though, I slid out from behind my uncle so he could see me better, he smiled and without hesitation said, “That’s my Tammy” (which, fyi, is correct lol). I’ve held that moment dear to my heart for 18 years, and now knowing what he was likely suffering through, it definitely makes me sad, but it also makes that moment even more special to me. ♥️
I can definitely relate to this.. the last days for my grandfather, me and my mother went to see him. The nurse asked him if he know who we where, and he looked at me and smiled and said "that's my beautiful granddaughter" those where the last words he spoke before he had to get a breath tube put in for the remainder of his time. I'll never forget those words.
It’s me and 4 siblings and my mom does the same thing ALL THE TIME lol, BUT, she seems to always start with the first horns name regardless of who she trying to say lol we love it though.
Honestly, the worst part for me was how thankful I was for it to be over, and then realizing what the video ending implied happened, what "it being over" meant
While I understand the whole “ooh spooky creepy” allure of this, more than unnerving or scary I find this just overbearingly sad. Knowing your sense of reality and self is slowly crumbling away but also being self aware of the fact that you can’t do anything to stop it, it makes me feel more hopeless than anything. :(
hopelessness and fear go hand in hand for me. i fear true hopelessness more than anything. everything i fear is a result of the hopelessness that comes along with the frightening thing. death of myself, physical pain, failure, death of loved ones, mediocrity, etc.
Same with me, it’s not creepy or unnerving at all, it rather saddens me how utterly crushing being not able to make heads or tails of yourself or any memories. It has to be terrifying to the one going through it, not being in control of your own mind.
I honestly dont care about me losing my memory and awareness, but I don't wanna see my grandparents and mother go through this. Like imagine the people you've known all your life just forget who they are or who you are? That shit is incredibly sad.
When the first part of the music started playing the old music to think of an old couple dancing to it and threw the year the woman forgets her love the man she married being alone.. It's all I could think from that
I agree, it's a deeply dreadful feeling.. it gives me an understanding of some sort that's hard to put my finger on of what my grandmother is going towards and it's scary
The ending part where it sounds like angelic music might be, at least in my opinion, a reflection of how in some cases of dementia there is a short amount of time right before a patient dies that they seem to show some return to who they were. They seem regain some cognition, some form of peace before they go.
People with dementia also have these random lucid moments all throughout the stages and let me tell you it's weirdly sad and scary to witness. That's at least what I felt like when I saw it happening with my grandma.
@@DieAlteistwiederda That's terminal lucidity, usually when it happens a person with dementia loses it temporarily apparently they die a short period of time after this happens
My personal interpretation is that it’s the dying person’s final moments fading back into a hazy memory of them being in church as a young child. Faintly hearing the choir music as the childhood memory rolls them back in a foggy haze of vague nostalgia in their last moments.
That "Homeboy shouldn't have passed me the aux" cracked me up when I read it and then you read it and all of a sudden I understand why people say happiness is better when shared. Only cost me an existential crisis.
My grandpa lost his battle with dementia in July. He was a genius, valedictorian at University of Washington's school of engineering, was high clearance at Boeing his whole career a and he and my still healthy grandma were high school sweethearts. The most terrifying part of this to me was in the later stages where the music would sometimes come back and Induce calm. To me, that represented brief moments of self awareness and clarity. But for someone like my grandpa, those moments were scarier than anything. A month or two before his death, he had one of those moments. But that calming music couldn't be what he was hearing when he used that moment to try and throw himself off a balcony and assaulted a hospital worker in the process. There's no way that's what was playing in his mind. And that scares me.
"To me, that represented brief moments of self awareness and clarity. " - when my step-father's mother died, she was confused about her time and place for a long time. However in the last hours or days of her life, and I wasn't there, she became lucid for a brief period. Knew who she was and where she was, but said at the end "I'm not supposed to be here." She died a few days later.
When my Great Grandma had it she would insult workers for being Hispanic and would swear she'd try to talk and she'd start crying when she forgot what she was saying towards the end she'd just sit in a wheelchair and her eyes would get glossy like she'd forgotten how to cry. It was sad, scary, and confusing to see.
My wife turned 49 today (Im 44)and she is on hospice nearing the end with dementia. From an outside observer of her dementia it seems pretty close to the journey she has gone. I had to put my career on hold and become her full time carer for the past two years and have witnessed horror and mental torment that no one should ever have to endure. The feelings that this piece imposes are pretty close except maybe it isn't as intense as it should be in moments. Thanks for reviewing this and letting people know this exists.
It's a horrifying disease and I watched my grandpa go through it before he succumbed to cancer (or heart disease, both were caused by old age), in one sense we're lucky he still recognized all of us when the cancer took him but even still watching him change into a husk of himself and his personality twist was horrid. It's a living grief because you can't get closure since they aren't dead, but who they were is long gone. I genuinely don't know how my grandma managed as caretaker for as long as she did honestly as I'm traumatized just from my brief visits, but she lived with it every day. I hope your wife manages to pass peacefully like my grandpa did in the end. You are strong beyond belief for caring for her like that with this horrid disease, just remember you have to take care of yourself as well which is often overlooked in the stress of caring for others and that it's ok to ask for help whether that's from home help aids or in the vein of seeing a therapist to help with the stress. I wish you and your wife well.
I really feel for you. I take care of people that suffer from this for a living, and some days it's beyond emotionally taxing. Dementia has such a large variety of effects on people and develops on an individual basis. You never know what each day, let alone each minute, will bring to them. But just know you're not alone.
Good lord, that’s horrible. I’m so sorry to hear that someone so young has to go through this. It’s bad enough when it’s a grandparent or great grandparent, but in someone so young… it’s just heartbreaking. I’m so sorry that you both have to go through this and my heart is with you both. Best wishes, my friend.
Not so fun fact: Synapse Retrogenesis and Sudden Time Regression into Isolation in Stage 5 are the parts of Alzheimer's where a person looses everything that makes them who they are, any bit of personality or intelligence is lost and they are basically reduced to the mental capabilities of an infant. And yes, this means that the person is fully aware of what is happening to them for about half of Stage 5. The reasons why the music becomes much more peaceful and held back is because as the person looses everything they've ever experienced in life and any sense of awareness, they no longer feel fear and the rest of their life is spent in emptiness.
I hate the idea of knowing that you’re losing yourself. There’s some bliss in ignorance. But being aware that your personality and reality is changing outside of your control is terrifyingly sad. The idea of that just fills me with dread.
@@ACDBunnie From what I understand, in the part of stage 5 where they are still capable of awareness, they are antsy, and usually fidget with things. They do it to keep their mind occupied
39:29 When you said "I finally heard music again" lighting up, imagine what end stage dementia must be like. Years of the awful drone, horror, and nonsense, and then the first sliver of something that feels calmer, even though it's not familiar at all.
When covid first hit, I got sent to a hospital in CT to help out with their patients. I remember one patient who had it was an older gal with dementia and I'd never been around someone. She had no family to talk to cause most of them left her in a nursing home to be someone else'sproblem. Well, in her condition we had to do everything bedside including bathing and caring for every need of hers. I remember we were trying to change her sheets and she had gotten to where she couldn't get up anymore, and we had to roll her in bed. She started crying and screaming and I think she believed we were trying to throw her. Well someone said something about sunshine and the patient started singing "you are my sunshine" I asked if she liked that sing and she said it was her favorite. So I said I could sing with her if the other staff could move her and she agreed. She held my hand and we just stared at each other and sang the chorus to "you are my sunshine" over and over while the other staff changed her bedding. Now this was over a year ago, and I can't help but feel a twinge in my heart when I hear that song, thinking about this patient. This gave me an idea of what things were like for her and this took my sunshine away.
my grandpa always sang "you are my sunshine" to me when i was little. he passed away when i was pretty young and i recently learned he had dementia as well. i was too young to understand what was happening to him and that makes things like this hit harder.
My dad was jabbering the last time I saw him. But he was okay. He said " I am so happy. I love my family." And all the pain that I felt for him subsided. He's OK. He is loved. He is gone and at peace.
i am so sorry. i lost my Momma to it a year ago, last January. It takes the most brilliant people, it seems to me. She was an English Major, Published Poet, and Comptroller of a three thousand employee company in the late 70s...rare for a woman at that time. i think it took away her fear of passing away, honestly. Maybe that isn't the worst thing, but we cant really know.
As a side note, stage six's artwork isn't even a blank canvas, it's the BACK of a canvas. There's not even a possibility of painting what was once there. Also, I think your feelings on the last 6 minutes were very interesting!! Most people attribute the sudden return of "normal" music to terminal lucidity, or the almost angelic sound of it to the person dying and going to heaven
According to an interview of the artist, he actually wanted to show another painting like in the other stages, but halfway through he flipped the almost finished canvas and preferred to not show it for a more powerful image. You'll never know the front of the canvas because you're gone.
When I was 34, I was given a medication that gave me the symptoms of dementia. I checked all the boxes of stage 4, and some of stage 5 Alzheimer's Disease. I have no memory of two months of my life, and have very vague memories of falling into it, and coming out of the inability to create memories, the noise distortion, body temp regulation issues and so on. It's fucking terrifying.
If you don't mind me asking, how did you find out in the first place? I am extremely paranoid of dementia and cognitive decline in general, so I'm asking for some peace of mind so that I can spot the signs when it comes. However, if you don't feel comfortable sharing or recalling, its fine, I am mostly asking out of curiousity and I don't want to cause any discomfort. Anyways, thank you in advance.
@@fjgdkdhgdj816 It takes a few specialists and some time to figure it out. A few things I noticed personally, as I used to have this paranoia due to anxiety, is if the nature of it changes, it's anxiety. If you are on edge about it happening, you likely don't have it. That part of you that has the ability to go through all the checklists of "Do I? Do I not?" gets taken away. I don't have the cognitive ability to be like that because that would be all I would do. Things slow down. It takes me a few more seconds to react to complex sentences, and the same goes for internal anxieties. I'm going based on when I had a memory, as there was time after the chemo injection and before supportive medication was given that I don't actually have a memory. Another thing is consistency. Anxiety based cognitive changes can change based on quite a number of things. When you go into an episode of cognitive confusion from a brain injury of any sort, a funny story can't take you out of it. The story confuses you. The characters don't make sense, and you are stuck in this in between phase of figuring things out that you used to spend split seconds in for what feels like forever. With anxiety, it might take a trained professional like a therapist, but you can be taken out of it. I also cannot change the fact I lose information. Before when I would forget what I was talking about, I would laugh it off and then remember then continue telling the story. Since the injury, I have to ask people what I was just talking about since my brain has a hindered ability to store that information. The anxiety embarrassment, no matter how intense, doesn't help motivate me to navigate this on my own. I have to tell almost every person I'm in a longer conversation with because my brain just quits sometimes. I've also needed to adapt how I do things and have needed to since the major injury. I am writing this on a notepad so I can see the whole thing. If not, I would have made several major typos, repeated three sentences (at least), and wrote run around sentences that made no sense. There's really no definitive answer I can give you other than this is something you don't want, and being anxious actually increases your chance of this happening. Look into ways to relax instead of whether you have it. Seek treatment even for mild anxiety or neuroses that you might have because it's worth it. Don't live in an area that has no neuro, cognitive rehab, and psychiatric services. Unfortunately I can't give you any advice other than move. I know some people don't have the privilege. I'm one of those people in a low service area with high needs not being met. You can't get care that simply is not there. Good luck with whatever is going on.
btw I was lucky enough to be a typist (transcription and data entry) before all this crap happened, so as long as I can find the words, I can type them. Aphasia is a hard one to tackle, though, even with typing. So much Googling D:
@@fjgdkdhgdj816 No problem. I like when people ask about it since no one had any clue what was going on when the injury happened to me. If I can help one person who either think they're going mad but aren't, or are just confused about cognitive changes that are happening, I'm good. I can't leave much of an impression on the world in my state, so I prefer to offer help to people and make little impressions on individual lives instead.
I inspect alot of senior homes fire protection sprinklers, etc and understandably alot of them have dementia wards which are locked with 24hr nurses. One gentleman really stood out to me because he could not walk on his own and never spoke. Everyday at about 10am he would (with the help of a nurse) shuffle over to the piano they had there just for him and play from memory an hour long concert with no mistakes. It always amazed me that this man, who didn't even know who he was, could sit down and play for an hour perfectly from memory.
It reminds me of a book I read once that mentioned the part of the brain where habits are stored was different from the part that dementia/Alzheimer's attacks, so people who were even severely affected would be able to act out anything that had already become a habit for them. It also mentioned that if anything was out of place (eg you eat breakfast with your wife every day, and one day she's not there) the patient would become frustrated and wouldn't know why.
I knew a man like that when I volunteered at a senior center for a few mornings. This elderly gentleman in a wheelchair that sat still all the time, just there. But if someone rolled him to the piano and lifted his hands up to the keys, he'd cheerfully play away, sounded great. He'd go on for a while, several pieces, then just stop, shut back down. I can never forget seeing that, and what it implies. He's still in there, just trapped.
It's said that the last thing you forget when you have dementia is your favorite song. He could probably play so well because he was desperately clinging to that final part of himself. It's really heartbreaking
Look up a video of a man hearing his favorite songs after years of alzheimers/dementia. He's practically non-responsive, but it's like he literally comes to life for a little bit afterwards.
I’m currently working clinical at a nursing home and, understandably, many of the residents have dementia. One strange but interesting thing I was taught while working there is best described with this example. I have a patient who wakes up every morning, gets dressed, and walks to the bench outside because he’s ‘waiting for the train for work’. Instead of saying to him ‘there is no train’ or ‘you don’t work anymore’ it’s a lot healthier to make excuses like ‘the train is out of service today. We told your boss and you’re allowed to take the day off.’ Essentially, we get into their world instead of pulling them into ours. It’s terrifying for them-or downright confusing-when we try to faze them back to reality. It’s sad, but an important thing to note if you ever are around people with dementia.
I never actually gave that any thought, now that I’ve read your comment it absolutely makes more sense to let them stay in their own world rather than pull them back into ours
This is extremely horrifyingly beautiful. The fact that the only "cure" we have is to let them suffer till death makes my heart explode with sadness but it makes absolute sense. To put it into perspective, its like telling any normal person that Gravity is fake, it'll shatter your being to be told something you've never belived in. Thanks for this.
I remember seeing photos of a care facility in Eurpoe where they made a small town to mimic the patients' childhoods. It helps them relax to be somewhere familiar.
I always thought "endulging" them was better than trying to tell them that what they're experiencing isn't real. It's cruel to tell them that what's very real to them isn't actually real.
My grandmother’s best friend Swanee has dementia and often asks where her mother is. We always say things like, “she’s at the store” or “she’s just visiting a friend”. Not only does it keep things less confusing for her, but also less heartbreaking. To be unaware of your surroundings and then be told that a loved one is gone is a traumatic experience that I can’t even imagine putting someone through
honestly, this is kind of how it feels to go through psychosis. You start feeling like something is off and as you give it more attention trying to snap yourself out of it you realize it's getting worse until you're scared you've lost your mind. Eventually, the horror and confusion start to feel mundane and you even start to get comfortable and ok with what's happening. Then on one random day, the fog starts to clear, and it's such a relief because you had almost given up hope you would ever feel normal again.
When you come out the other side your a completely different person. Whoever you were before is gone. You have a different perspective of everything, like you just inherited someone’s body and life. Nothings ever the same even after you come back.
My aunt had dementia and as I listened to this album it was the closest thing I could experience. She used to be a polyglot - speaking fluently 5 languages and a skilled piano player. The time she lived with my dad (her brother) and me, it was terrifying to watch her move her fingers like she was seating on the piano playing. Or when she was stuck on child memories, or something that happened in her life. She used to also be very fond of my mother, but my mom already passed when she lived with me, one time I asked her who I was, she says my mom’s name. I wasn’t hurt about it, but it showed me how the noise, blur can happen very quickly. She didn’t deserve something like this. Overall, I hope she’s okay wherever she is.
My grandma had a lot of flashbacks to WWII and some other traumatic events from even earlier in his life. She was a young adult during the war so could remember what she saw quite well and seing such a strong woman reverting back to a scared child was quite scary to me. I was just a child and young teen myself though and only 19 when she eventually died. She was the only one who never accidentally called me by the wrong name though for some reason.
Living through the same with my uncle right now. He was an ivy league educated doctor, a cancer specialist, a rugby player and a music lover. He never got to enjoy his retirement, because he was already at stage 2 when he sold his practice. He doesn't recognize his wife, his brothers, anybody. My dad goes to his house a lot to play guitar for him, and that's about all he can recognize at this point. It's so sad and so strange. This is very heavy. I'm so sorry.
Wouldn't you be happy with her moving her fingers as if she was playing piano or remembering good childhood memories? At least she had this some sort of peace in her head as she's doing this. Granting it can be annoying. But from what i heard in this album, a person with dementia can take a really long time for them to remember something good or feel good again. I guess what i'm saying is if a person finds a peace in them, encourage it, especially ones that have dementia.
It's funny, near the end you said "an hour left." This came after all the exacerbation of having to put up with the noise. I work in geriatrics. A lot of people have this mindset: "hopefully I'll be dead by then." A lot look forward to the end, even the lucid; a lot resolve to it. "An hour left" is an encapsulation of that, without intention. Very interesting.
@@imonke5303 you might feel differently when you’re older, a lot of people are content with their life and feel they have experienced everything they want to. Especially with the impending dementia or other health problems, a lot of them are ready to move on.
The art at 21:27 reminds me of a distorted version of the “Girl with a Pearl Earring” painting. Almost like they saw this at some point in their life and it’s faint in memory and this is their recollection. I’d love to know.
Now that you point it out it really does look like that painting. The entire time I felt like I had seen or vaguely compared it to another picture. It'd be neat if the artist had done that purposefully to show how the current stage rapidly declines in memory and recognition by making a piece that's very known into something that seems familiar but wildly off.
2 days ago, I attended my grandpas funeral. He had severe dementia but Covid killed him in the end. It was horrible seeing the man I loved; someone who always did his best to make me laugh, into a shell of a person. He lived across the country from me and every time I went to the airport, he’d pick me up wearing his wife’s blouse backwards, mismatched shoes, anything to make me laugh. We always played werewolves too. And every night he’d tell me a variation of the same story. I enjoyed it very much, but when I got older I kind of found it childish and wanted to be left alone and scroll through my phone instead. He was always so happy whenever I gave in and let him tell me the story. It started small, he’d forget the names of the characters in the story or mix up the names of me and my cousins. Then he would ask the same question multiple times. Forget I didn’t live in the same state as him. But even when he forgot I was his granddaughter, he always complimented me. “Who’s that beautiful lady?” He’d always say that. Or something along those lines. I’d always smile and tell him thank you. I wasn’t with him when he died. I have college and couldn’t go with my dad to visit him on his deathbed. I always was in denial, thinking he was going to be okay. The day after my dad flew back to our home, he passed. Up until the funeral I was in denial that he was gone. This had to just be some sick joke my family was playing on me, and the relief I’d feel when I saw him again would be so immeasurable. So blissful. And I’d be able to tell him how much I loved him. How much I missed his stories. All of that when I got to see him again. But I never saw him again. I cried so much at the funeral. The last communication we had was through a text I told my dad to read him. The service for calling didn’t work down there in his room so I simply told him how much I loved him and missed playing werewolves. Apparently, for the first time in his fog of misery and confusion, he looked up and smiled. I cry thinking about it now.
I sympathize with you, your comment hit me close to home. I also lost mines around the same time, not to covid or dementia but stomach problems. I remember he was always so happy to see us when we would visit, he always open his door to us and let us stay as long as we like. My dad and I would be the only people who consistently visited him just to see him happy and not for money like most of the other family members. The last time i saw him he was in so much pain and going in and out of consciousness from the morphine, it was the worst day of my life because not only would i never see him again but it was also the last time i would talk to my childhood friend, who was more of a brother to me than my real one, due to cardiac arrest. I felt the exact same as you (still do honestly) and the days after felt like an awful fever dream that I'd wake up from and see them still kicking and I'd tell them all about it. I went both of the funerals and my friend's burial (his fam made me the pallbearer for his too) but no one in the family told me about grandpa's burial so i missed it and I lothe them so much for that. He didn't even want to be buried, he wanted his ashes scattered where he was born (by a river in the jungles) but they wouldn't let us take his ashes. Sorry for all the extra stuff i just remembered all the pain from reading your story, that's all i have left of them now is memories and the stuff that got left behind that no one wanted to take. I hope that you, and anyone else going through the same, can find some kind of peace in your lives and cherish your memories together because just like a cartoon of a blue jay and a raccoon said before: "Enjoy 'em while you got 'em"
My grandfather also had dementia for about three years and it got pretty bad where he even just walked out of the house in the middle of the night to go to church and almost got hit by a car. It was a random heart attack that did the job though. I never would've thought how happy I would feel to hear of his death from a heart attack. I honestly just couldn't live with that thought of dementia plaguing him and I like to think of that heart attack as somewhat of a miracle.
You’re definitely right about music. My grandma that’s 93 has severe dementia and Alzheimer’s (one of the final stages). But when I play my banjo she hums along to some songs still, like oh Susanna. She doesn’t know my name or most people’s names, or where she’s at.
Neuroscientist here: Memory engrams are both highly localized and very distributed. There's a specific part of the brain that deals with melody/music. So a dementia patient can completely forget everything else about a song the title lyrics and writer but still hum the tune and even continue it on their own if prompted to start. It's one of the thing that drew me to and keeps me in the field, discovering the beautiful complexity of the brain and trying to unravel its secrets.
My Granny died with Dementia, she had it for years and reached what could possibly be the worst it can get. A few months before she died she resided to just screaming and repeating ‘they’re coming to take me away’ really intense stuff. But through the horrid stuff whenever I would go to her as she lay in her bed she would always repeat how beautiful my eyes were. She didn’t know who I was or why I was there in her house, but she knew my eyes were beautiful to her. I can’t quite describe to someone who hasn’t experienced it how it is to watch someone who once cared for you decline each day to the point they no longer know who you are, but not even who, what you are. I suppose this video is the closest I’m ever going to get at the moment to even slightly understand what she experienced. It’s sad to say and think, but I lost my granny a very long time ago, I only lost her physicality a couple years ago.
It's beyond words truly. My uncle suffered from mad cow disease. It's hard to describe someone full of life, and jokes and good memories deteriorate so quickly to the point that they stop registering as a human to you. The last time I visited, a couple of months before his passing, I remember seeing him unable to control or move his body, just laying there. He became upset, or excited, or was in pain when I came in, I truly had no idea if he was still capable of thought to be able to recognize me but the way he looked at me will be with me forever. Was he asking for something? Happy to see me? Scared? Ashamed? Could he still control some of his body and any thoughts? Did he notice my look of horror? So I delicately ran away to digest the scene and came back with the mindset of talking to a grave. I told him everything about my life when we were left alone, everything about the times we spent together and specially the times I've had with his daughters. He never acknowledged anything I said, bit I honestly hope he did. After that I never visited again. It was one of the most selfish things I've done which I regret till this day. So thank you for spending time with your granny, I'm sure that it was extremely harsh, but I'm also sure that even if that time cannot be appreciated in the same way by her due to her sickness, you helped aliviate her passing in a significant way by just being there.
I'm sorry for your loss, I went through something similar with my own grandmother, but she died before it got too intense. I'd go and sit with her and she would just look at me and smile and say "pretty"
I work at a residential care facility, I’ve worked there in dining since I was sixteen and I rarely see a resident move out, this means they’ve seen me two to three times a day every day for many years. Dementia is a daily monster I deal with, I always start to notice around the mild confusion stage, we will be having our regular conversations and they’ll be grasping for words they normally use often or they’ll forget parts of their every day orders (not even noticing it when I bring those things for them anyways.) then it gets stronger, longer periods of silence trying to remember things, though at this point they eventually do followed by embarrassment and frustration. Slowly they begin to get irritable, even the residents who have been nothing but kind in the past, they won’t be able to coherently speak to you for long periods of time, their orders become scrambled and stop making their usual sense. Then they forget your name, this is usually the point where I start to feel sadness. They’re angry that you have to keep reminding them of things, but you know deep down they aren’t angry at you, they’re just perpetually stuck not understanding the world around them or themselves like they once did. Then they will forget they’ve eaten, coming back for meals two or three times in a span of a few hours, they’ll forget what foods are or what they like to eat, generally I’ve noticed they’ll tell you about a childhood favorite food and order that for the rest of this period while they can still order. Then the stories start, they no longer have the understanding of who you are or that you’re really there to serve them food, they just want to sit you down and tell you everything they know for hours, completely unaware they’ve told you the day before and the day before that. They’ll tell you stories of their incredible lives and it seems almost hard to believe they’re coming from the person in front of you, as horrible as that may sound. They never really tell recent stories though, they’re always stories of their youth. Not of their children or wives or later careers. Usually stories about growing up or the war times. These stories often go nowhere, they can’t remember what came next or how they ended. them bringing up people you don’t know and fully assuming you do and you were there, they begin to think you’re old family members like grandchildren and subsequently get sad they forgot about you. You begin having to repeat yourself over and over because they don’t remember or can’t understand what you said. They’ll ask you things about yourself you told them just a few days or hours ago and things you’ve told them many times. They can’t remember their families, even if they’re right in front of them, how old they are what floor they live on, what foods they like or have tried (an example being asking what certain sodas like coke,they’ve had their entire life are like) what their phone passwords are or where they’ve left things (often leaving them in the dining room and never returning for them.) then they become delusional, doing bizarre things in routine or out of the blue, things that seem completely like common sense not to do, almost in the way an infant would. I’ve noticed specifically that they might order something bizarre every meal because it’s what they know and all they know. talk about things that don’t make sense and get frustrated when you don’t understand. They believe they’re somewhere they’re not or that they’re waiting for someone who either isn’t around anymore or never said they were coming. They may think they have a pet to take care of that isn’t there, I’ve seen many walk around with stuffed ones acting as if they were real. They wander around the dining room, never sitting down just wandering. Then the bliss stage starts, they are very obviously not there anymore apart from the occasional glimpse into the person you once knew. I can only explain this stage as a blank slate, they don’t strike up conversations but not in a rude way, they just don’t even think about it. They have no idea what to order and are happy with whatever they are brought (generally we try and bring them things we know they’ve enjoyed in the past) in this stage they don’t ask you for things or even really know they need to eat, they’ll pick around their food only eating it when the nurse (who had to bring them down to eat in the first place) directs them to. It’s almost like a child stage where they expect to learn everything from you and the people around them. They forget manners or what is socially acceptable to do and say, this is why they may say something outrageously rude or offensive like it’s nothing and truly, I don’t believe they understand the things they are saying or even have bad intentions. They have simply lost their filter for what’s right and what’s wrong similar to that of a child. An almost trivial thing I’ve noticed is the way they forget about their appearance, you’ll mention how nice their haircut looks or how beautiful their makeup is and they don’t remember doing it or really how to respond. Eventually they fully stop eating on their own accord, I’ve noticed during this stage they will generally ask for sweets like icecream or cookies and even then hardly touch those. They still order but their plates are always left picked at at best. This is when the physical decline begins as they no longer know how or that they even have to take care of themselves. The things people make jokes about (grandpa forgot his pants or is missing a shoe) really do begin to happen and I’ve noticed they are aware of these things and feel emotional about them unlike the media portrays. They’ll begin to become distressed, panicking or crying because they don’t know where they are or think they should be back in an old home they haven’t lived in in years. they begin to break down and cry over simple things, they can no longer cut their own food, they need bite sized pieces and thickened drinks because they forget how to swallow, they don’t know when to get up and leave the dining room, let alone where to go. They can’t dress themselves or shower, they don’t know where they are or who you are they just seem stuck in a forced cycle of survival. At this stage we usually don’t see them anymore, only glimpses when we deliver them a room tray. They don’t know what to do with it or why it’s there, they just wait for the nurse to bring them their food. Family begins to visit, they don’t interact with them or anyone else for that matter, if they are responsive at all they are irritable or sad. They can no longer use the bathroom on their own or get up to shower, they stop eating all together maybe getting a milkshake or two down. This is usually around when we get radio silence, then we’re told they passed. It’s taken me a long time to understand and I don’t think I fully ever will, I watch people I used to joke around with, people who remembered my birthday every year without me reminding them forget me entirely, forget their families, forget their lives, lose the world around them. And for me this I supposed to be my job, it’s supposed to be normal and it feels almost wrong that it still isn’t to me. It will never be normal to know what it’s like to watch people you care about die before they actually stop breathing.
This was absolutely gut wrenching. You're a hero to your community for working with these dear people. What a dark reality, I'm grateful for my mind in the present moment. Much love ❤
This was extremely insightful and a very interesting read, thank you for sharing, your words really flesh out the reality and experience you and these people have
The ending has more significance than just making you grateful for the music you heard in the beginning. There is actually a phenomenon that has been documented where someone with Dementia will have a moment of clarity and will finally remember again... Just before they die.
As someone who worked the night shift at a senior living center in the dementia ward, this is so very sad but enlightening. To get a small glimpse into what is going on in their mind. I loved my residents & it broke my heart as I watched them fade away from their family & us as we take care of them. We get to know them. To love them & then say good bye. The worst part was welcoming a resident from another floor to ours. They were always scared because they knew what it ment to move to our floor. What was happen for them.
My fiancé worked in a similar facility. Her first Christmas with my family, we had my great-grandmother with us who had dementia and none of us were used to dealing with her condition as she was the first person in the family to be diagnosed with it. At one point, my grandma got up to go upstairs and finish up dinner, leaving me, my fiancé and my parents alone with her. My parents got distracted with something and my great-grandma started to get up to follow my grandma. I took one look at my fiancé with a slightly panicked look. She simply smiled and went over and got to work helping my great-grandma settle back down. It’s a job I could never handle, and I have the upmost respect for anyone who has worked in that type of environment. And while not religious, I pray for those effected by it and those who help them as it’a such a horrible thing to go through
Thank you for being one of the good ones. I’ve witnessed far too many people working in senior living centers that treat the elderly like shit. for me, that’s on par with child abuse. it’s just so disgusting to me. If only all health-care workers were as kind and loving as you.
I cared for my gramps recently, before he passed. I can't express the sheer admiration I have for people that do the work you do. It broke me every single time I had to see him fade away.
My aunt had Down’s Syndrome throughout her life, to the point where she was basically like a 5 year old child for most of her life. Despite that, she had a surprisingly strong memory and a stronger personality. She was always fun to talk with. About 5 years before she passed, she began developing dementia. It was gut-wrenching watching it develop in real time. From simply forgetting what she ate for breakfast, to forgetting what her favorite restaurant was, then forgetting her own family members names and referring to everyone as “hey, I know you”. Eventually she got to a point where she basically couldn’t make a coherent sentence. She even forgot how to say hello. She finally passed at the age of 68. I still think back every now and then on those 5 years, and it scares me every time. To watch someone so strong completely forget everything over such a long time and become (for lack of better phrasing) nothing more than an empty husk right in front of you, and there’s absolutely nothing you can do about it. There’s nothing, no words in any language, nor any image painted, that could ever truly, fully describe the horror of that disease. In my opinion, it is the single worst way to go out.
This just got me on a rollercoaster. My great grandma only really had dementia set in near the very end of her life, woman was over 100 so yeah, but once it did it went hard. She went through everything in only a few months instead of closer to a year. The main thing I remember though was her last bit of clarity before she passed. She snapped back at Thanksgiving dinner and started talking about how she was getting old and will probably be dead soon. She then looked me dead in the eye and said “I’m not going until you graduate high school”… she passed 2 days after I graduated
i watched some videos about nurses saying how it's strange that people close to death can somehow "hold out" on dying a few minutes hours or days for their loved ones. in my own experience, my own mother that had ALS seemed to hang on all night until my father and i arrived at her bedside. a nurse pulled my dad aside and told him my mom had trouble breathing all night so we knew her time was near. she passed within the hour
I worked home service for a time after highschool, and we had this old woman that suffered from late stage dementia that used to alternate between wimpering/crying and screaming from the moment we woken her up to when we helped her back to bed. It's one of the most horrifying things I've experienced. Sometimes, death is mercy
Read through the comments and honestly, this is it. For everyone involved and their sanity, I would prefer a swift and calm death by overdose, anywhere from the point where I start having trouble remembering my family and kids. I wouldn't want them to experience this but find early closure instead, so they can move on with their own lives. Just thinking about this makes me hope I can die with a clear state of mind.
@@michaelferrell8189 people have always lived that long, the difference is most people got killed before then, or deteriorated sooner, or got left to starve when they couldn't pull their own weight anymore. Not great either honestly
I always think the Stage 3 album cover is Stage 2's album cover but the emotions and stability have 'burst' forth and now it's all over the place. Like things have gone wild.
As gruesome as it sounds... I think if I am ever diagnosed with Dementia, I would probably commit self uninstall. I refuse to become... not me. To wither and die in front of my family, making them watch me become something they don't recognize anymore than I'd recognize them. Lord forgive me if it comes to that... but I won't fade like that. If I'm diagnosed with Dementia, that's my sign that I am no longer needed on this planet.
btw, the stage 4 painting is reminiscent of 'girl with a pearl earring'. Makes me think that the subject is remembering something that touched them similarly to the music, but it's still distorted and misremembered.
I love the fact that the caretaker included that tiny speck of lucidity right before the person dies. Thats really how it is at the end. One more good moment then nothing. Its sp crushing but so truly raw and what its like.
You know, terminal lucidity could be just as disturbing for someone as the confusion parts. Imagine waking up and realizing it’s been years and you’ve been hospitalized and you’ve missed so much. Also, it should be noted that after terminal lucidity and after death, it’s not just nothing, after the hell that is dementia you get rewarded, you go somewhere else.
I avoided watching this video for the longest time, as I still don’t think I’ve really processed this, but everyone seems to be sharing their stories, and I’d like to share mine. Maybe it’ll help me come to terms with it instead of repressing it like I have been. My grandmother passed away from breast cancer in 2016, leaving my grandad a widow. At first he was very depressed, as anyone would be, but he was able to move on. He picked up lots of new hobbies; he joined an art class, started doing community work at his local church despite never having been religious before, began volunteering at his old work place from before he retired, and he even got a new girlfriend. I was young at the time and, despite being happy for him finding another person to love, I felt a little seed of resentment towards his girlfriend. She could never replace my grandmommy. I felt like Grandmommy and Grandaddy were meant for each other, not him and this random lady. But I tried to be happy for him nonetheless. Everything seemed to be going great for him until his health started to decline, around 2018, 2019. Nothing super crazy, just dehydration, fatigue, hip problems, most likely from overworking himself while volunteering. However, around the fall of 2019, he started declining more. His house was a mess, he didn’t have the strength to clean it. He couldn’t get up and use the restroom, and he had little to no control of his bowels, so there was feces all over the couches and floor. We went to visit him during Christmas and New Years. (We live several states away) I remember being heartbroken, seeing a house I loved ever since I was a child in such a state of disarray. It smelled awful, there was clutter everywhere, feces all over my grandmommy’s favorite rocking chair. I swallowed my misgivings though, and talked to my grandad. Despite his body beginning to deteriorate, he was still my Grandaddy. I remember him enthusing about a concert he went to with his brother just a month before that. So I guess I was still in denial. He seemed normal still, so he had to be okay! The doctors would figure out how to make him better! In hindsight, I know my mom was in the same boat as I was. She didn’t want to put him in a nursing home yet, partially because grandad refused to go, and because she didn’t want to admit that he was in need of one. Until, when we went to go have dinner with him and his girlfriend for New Years, she walked in to see him asleep on the floor, unable to get up. He woke up easily and seemed fine, laughed off the situation, and said the only reason he was still down there was just because he couldn’t get up. Mom called the hospital anyway, as she should’ve in that situation. He wasn’t happy about it, but couldn’t really change anything. I went to see him for the last time in person that night. He was totally normal. Talking about stories in the family when some of his friends came to visit him, chatting like always. I remember, when we had to leave, he told me we’d need to play another game of cards soon (it was our tradition to have a tournament every time we visited.) I never got to see him again, due to the pandemic and how rapid his decline was. It had just turned 2020 at this point. By the end of the year, he was gone. He went from physically unwell but still sound of mind, to a confused, aggressive, and unresponsive stranger within a couple months. We used to FaceTime him at the nursing home. I usually avoided doing it, as he showed no signs of being able to tell it was us behind that screen. It hurt too much to see him like that, totally unresponsive, blank. I wanted to remember him as that jolly, cheerful guy who played cards with us and had the kindest face you could imagine. I still wish I could’ve played that last game of cards with him though. Maybe I would’ve been able to, if it weren’t for the pandemic. I think the scariest part of the whole ordeal was when he became suicidal. He told my mom he was going to try and overdose on his antidepressants over the phone. This was in between moments of him gushing and obsessing over his girlfriend and moments from his past, like a moment of clarity. It ended just as quickly as it started though. But that makes me wonder how horrifying it must be to go through that, the moments of awareness in between the chaos and confusion, the pain of realizing what’s happening to you. I hope to never find out the answer to that. If I ever get Parkinson’s or Alzheimer’s or Dementia or anything similar, I hope I die before it gets to that point. Sorry, this is all very disjointed. I doubt anyone has actually read this, which is probably for the better. This is the first time I’ve really gone through the events in my head, and this is an extremely simplified retelling of the messy reality. But yeah, if anyone HAS read this far, remember to drink water, eat plenty of nutritious food, and treat yourself how you would treat a friend, even if it seems hard. You can do this
I'm sorry that you had to go through that, I went through the same thing when I lost my mother in 2001 when I was 9 to lung cancer. I was in absolute denial up until she came to visit me for the last time, she lived in Indiana, while I was in Arizona. The moment it started to dawn on me that it was extremely bad was when I woke up early cuz her and I were taking a day trip and I burst into her room and she was bald, I was so shocked and confused as I was rushed out of the room and I got no answer for what was going on until about a week before she passed. And it took me about a decade to fully process and come to grips with reality and what had actually happened when she came to visit.
Oh gosh I totally forgot that I actually posted this. I’m hindsight, I really needed to realize how traumatic it actually was in order to understand my avoidant feelings towards the situation, so I’m glad that I watched this video and reflected. Thank you guys so much for the kinda comments, I genuinely didn’t expect anyone to read this haha!!!
@@harleyowen91 that must have been very difficult for you, I’m so sorry. Cancer sucks, it saps the life out of the people you love painfully and slowly and it’s so hard to watch, especially when you’re a child and it’s your mother that you’re watching fade away. You are very strong
The ending with the Angelic Arias makes me think it's more than just "the person is dying". I think about "terminal lucidity" which happens occasionally with Dementia patients. Essentially, in their last moments of life suddenly become lucid once again. They are immediately aware of the condition of their body, the things they've done, the things done to them, and they are coherent for but a few moments before death. This is both peaceful and horrifying. It may be bittersweet to finally be able to share your last moments with those around you, hopefully friends and family and to be able to know who and what they are, but it is also horrifying because you are made aware of the ordeal you've gone through before it finally takes you which I believe is the silence at the end.
DMT is a helluva drug. Once humans understand "why" we produce it in effect-inducing quantities during birth and death - humanity will be ready to transcend the human condition. :)
I lost my grandmother to Alzheimer's years ago, and I'd hoped that listening to this album would give me some insight into what she'd felt as she was dealing with the disease. To say I got my wish is a gross understatement. I sobbed from stage two onwards. I hope my grandmother, and everyone who's passed from this horror story of a disease, is resting easy. (Edit: Thank you for all the kind words and support, it means a lot to me! To those of you who have family members currently going through this storm, the best advice I can give is to have patience and find a good support system. I know it's going to be hard, you're going to get tired of answering the same questions, getting the same reactions. Thankfully, if you can't find an in-person support group in your area, there's a lot of online support groups to help caregivers and family members, because Alzheimer's and Dementia will make you feel like you're unable to be of any use, even when that's not the case. Take care of yourselves, everyone. Even if it doesn't seem so, it's going to be okay.)
Alzheimers is an absolutely terrifying disease, I lost one of my grandmothers to it aswell and it was hard enough with her. She snapped on me one day for no reason when I was younger and didn't fully understand it. I'm so worried my mother and sister will get it aswell. I genuinely do not want to go through that again. I feel for you
My grandfather is currently going through this. I'm so sorry for your loss, and I hope you were surrounded by the support that's so vital to getting through the hardest parts of grief ❤️
@UC70LsJiLbkXSyu2Z00FRmUA do you understand how wrong you are? Alzheimers is a specific brain disease that account for around 70% of all dementia cases. Dementia is a blanket term for several memory or other higher brain function skills deteriorating.
I tried sleeping to this music and ended up getting sleep paralysis with the static playing, it was already terrifying but the music filled me with more anxiety
I tried to listen to this all the way through like 3 times now and every time I’ve gotten 2 hours through and I was passed out like a baby, best sleep I’ve ever had 😭😭 idk why I think it’s bc the concept of dementia and Alzheimers doesn’t scare me, it just makes me sad and I sleep super well when I’m sad
I lost my Mom 2 months ago. She was going through dementia before she died. She would call me in the middle of the night from the nursing home in utter terror that she did not know where she was. It was devastatingly heartbreaking. Can't type this without tears. She would ask me were her sister was (who died 20 years ago), ask me what I wanted from the Chinese restaurant that she was about to order from, and so on. I no idea how hard it was going to be to experience it.
My mom dealt with my grandma while she had dementia and worked in the same building as her. She said that now that grandma is gone, she has no real tie to the building anymore. Though she's dealt with elders with dementia, as I have as well. I remember being confused as a kid as to why the nice lady on the couch never remembered my name.
I'm so sorry for your loss... I know it's been a few months since you made this post, and I hope youve found some peace now with it. It's such a heartbreaking thing....
I've watched a few documentaries of dementia, I watched a guy break down and sob openly in front of the camera because his mother couldn't recognize him anymore. She knew her son in photographs as a child but didn't know who he was as an adult sitting next to her, my heart broke for him.
The title of the first song of Stage 6 is possibly one of the most terrifying things I’ve ever heard. “A Confusion So Thick You Forget Forgetting” It’s always made me extremely sad, terrified, and thoughtful about that stage
The very last part of stage six, when that "voice" started singing along with the music made my skin crawl and I broke down. It's so close to something I know, but so far gone to even know what it is supposed to be. This work did it's job very well at portraying the horrors of this disease, and is honestly a masterpiece of art.
I understand the title of the last section "Place in this world fades away" to be literal, I think it's meant to be death. Or maybe it's related to what happens when people claim to see or hear God or angels when they die or nearly die. What sounds like church organs, an angelic voice singing. It's comforting but also terrifying when you know it means you're near the end.
@@loganjonesTTMS The last 5 minutes of the "Place in this world fades away" is supposed to represent "terminal lucidity." Terminal lucidity is basically the last moment of lucidity a dementia patient experiences before they pass away shortly. The silence signifies they have passed away.
@@hyperx72 I know but what are plaque entanglements is what I was trying to say. Now I’ve learnt that plaque is the buildup in the brain that causes dementia and entanglements is something else rather similar.
@@squaresquids well yes, but again, dementia is the general term for a loss in memory, cognition and reasoning. Yes you can have dementia without developing Alzheimer’s, however dementia is just the general psychological term
Yeah, pretty much. But it’s not THE specified diagnosis, it’s one of many. My grandma has dementia that’s not caused by alzheimer’s. There’s multiple causes for dementia, alzheimer’s is just one possible cause.
It’s wild that the chances are likely that many people who’ve watched this will one day go through this and try to remember where they felt this way before but can’t remember what a RUclips video is
Yeah, I'd be 'checking myself out' if I was ever told this was going to happen to me. Two of the scariest things I can imagine are, dementia, having what makes you what you are slowly erode away into nothingness, and being aware while comatose, feeling every pain, hearing everything around you, while being trapped in an unresponsive body, with no way to communicate.
Fun fact: The first song in the first part of the album “Just a Burning Memory” is actually based on a song that is from 1931. The creator of the song was a man named Al Bowlly, the song’s name is Heartaches.
Leyland James Kirby was extremely fascinated with creepy ballroom music after watching the shining, prompting him to eventually create an album called "selected memories from the haunted ballroom". He would experiment more with the format and create everywhere at the end of time
The anecdote about the woman who forgot her siblings died reminded me - For those who are dealing with a loved one with dementia, remember improv rules to make things easier for both of you: "Yes and", accept the reality given to you and build on it. There's a point where it's not even fair to tell them no and correct them- it can be extraordinarily upsetting. Sometimes you need to engage imagination rather than memory. This can be a painful process but it's something that allows you to connect on their terms
I’ve sadly had this happen with my great great grandma over the phone. Sometimes she’ll ask a question, then a couple minutes later ask the same question & I just don’t have the heart to tell her she already asked me
Someone was saying the best thing to do if they insist on something, to agknolage there feelings and direct them to something thats positive. My nan is as the stage now where she's getting very confused all the time. So if she gets upset you can just sometimes redirect her...
I used to work in a dementia unit. One lady used to wander the corridors asking for her grandma. Her mother died in childbirth so she was raised by her father and grandma. She had memories of her adult life and would talk often about it, but it always came back to her wondering where her grandma was. She was confused that her grandma would leave her alone since her dad was out at work. It was heartbreaking. We used to ask her where she thought her grandma has gone and she would always say shopping if it was light and to the bingo if it was dark. So that's what we all played along with. We were looking after her whilst her grandma was shopping or at bingo. She would be terrified to go to bed alone, her grandma used to sit and knit in her room when she was a child. So I used to get my notes (back in the days of paper record keeping) and take them to her room when I put her to bed. I'd sit there until she fell asleep. We had a very inexperienced carer tell her once that her grandma was long dead and that she was an old lady now. She was devastated. She knew she was old, she recognised herself in the mirror and knew she'd had a full adult life but she was also simultaneously a child whose grandma was still her primary caregiver. I used to feel bad that we were lying to the residents when we went along with things that were not true or real but seeing the devastation she experienced at being told her grandma was dead just confirmed to me that we were doing the right thing. It's very real to them in that moment.
People with dementia can have visual and auditory hallucinations so I mean... I'm an assistant in nursing and I've pretended to scare off peeping toms at 3am many times
Getting diagnosed with dementia is one of my greatest fears, I can't bear to even think about a loved one passing this way, let alone myself & what my friends/family would experience. The idea of slowly wasting away & deteriorating give me mad anxiety It terrifies me so much since due to my ADHD, I already have memory problems, and apparently having ADHD can also corralate to having a higher chance of developing dementia later in life so you know, that's cool 😭
i'm in the same situation, i have adhd and i am terrified of dementia :( i'm blessed to not have had a relative that i knew go through dementia but my grandparents on my dads side did. it sounds dark but i genuinely hope i can die peacefully without having to experience this
I probably have ADHD and dementia runs in my family. I just hope if I develop it I have the resources to do Dr. Assisted suicide, even if that means going to another country as I don't want to put my loved ones through that. Also I don't think I want to experience it period, let alone have my loved ones experience with me. One of the reasons I want Dr. Assisted suicide is that no one should be forced to go through horrifying terminal illnesses unless they choose too. You shouldn't be forced to continue living by the law or have to put your loved ones at risk (some places they can get charged for not stopping you basically) and choose a painful death just because of the law. You should be able to choose choose peaceful death surrounded by your loved ones if that's what you want. The fact we can choose to put down animals out of mercy as their suffering and quality of life is so bad but we aren't allowed to choose when our suffering is too great and quality of life is too low to continue is completely absurd to me honestly. Like we should have that option available if that's what we desire
There exists a real day in your future where you will defintiely die. Either it will come much earlier than you expect, or you will probably be confronted with some or all of the symptoms of this disease
When I listened to it the parts that really messed me up were the silences. The idea of not just thoughts being gone but the concept of knowing being gone--it's terrifying to think about. The singing at the end also made me sad somewhere deep in my mind. I was crying but I don't know, I've only cried like that at really extreme moments in my life.
13:50 “I can tell you it’s a flower pot but I can’t tell you what it’s made of” was bone chilling. So often it’s these exact sentences you here come from your loved ones mouth before you begin to realize something is wrong. I can tell this will be a journey to watch this whole video Edit: seeing wendigoon grasping for any form of order and happiness while diving into the comments was also very telling. I can imagine that’s how it feels. Searching every day for something that makes sence and you just really can hardly find any moments that are complete. It also goes hand in hand with how you say “it’s like it’s trying to make music but there isn’t any” around 35:50
Stage 5 art looks *almost* like a woman dancing on stairs or a lady in a ball gown going up stairs. Compared to stage 6 it’s almost like the very last thing they remember before it goes full dark is some moment that they know should be beautiful but can’t remember why.
i don’t know if anyone has said this, but the crackling might represent neurons in the brain shutting down and dying. from what i remember it was just a theory and was never confirmed but i still love that idea
The singer of the original song, Al Bowlly, passed in April of 1941 during the Blitz. The Blitz ended 1 month later. His last sang song was "When That Man Is Dead and Gone" which was a satirical song about Hitler.
I can't imagine listening to the full piece. This condensed version was hard enough to get through for me. And what an apt name The Caretaker is. I was my uncle's caretaker for almost seven years from May 2014 until this past March. It was so difficult to see my favorite relative become just a husk. I loved him... and yet, I hated him. I couldn't even escape in my sleep. He was always a part of my dreams. In March it was determined that he needed professional care for the remainder of his life and was moved to a hospital. He passed away in June. I haven't told anyone this, but I stopped dreaming about him when he was in the hospital. About a month after he passed. I dreamt about him again. It was the man from my childhood. We didn't speak. We just hugged and cried. Like he understood that I did my best and that it was okay when I got frustrated. I haven't dreamt about him since. As I'm typing this, this is the first time I've cried about losing him. Rest in peace, Uncle Francis; 1951-2021.
The strength you have to keep going and supporting him through this awful, awful disease is immense. I don't know the mistakes you made outside of getting angry, but that fact could never be devalued. I wish we had more people like you.
The full experience was rough for me, I was definitely scared, I couldn't get the music out of my head. If it's hard to get through the condensed, don't do the entire thing, for sensitive folk and even damaged folk, it's jaw dropping how easily it broke me down.
Fun story that just made me lose hope in humanity: My little brother was playing this down the Vr mic, when I heard it I instantly knew what it was so I asked "do you know what that is you're listening to? He replied with "Yeah, its called (scrolls on screen) It's Just A Burning Memory" I asked "Do you actually know what that is though?" he rolled his eyes as he said "Well yeah, its Gorilla Tag ghost music" I just don't have any words tbh, such a beautiful and powerful piece of art turned into some spoopy ARG crap for Gorilla Tag
It's funny how towards the end you hear music coming back- I used to work mostly in a dementia unit when I was younger and around a lot of late stage residents. The normal is the post-awareness for a lot of people at that stage, but once in a while I could get a single moment of clarity, or semi clarity, and acknowledgment from some of them when interacting. That's the most impactful part of this for me, because I've witnessed it. It's a tiny, tiny, tiny crack of eye contact and gesture.
It’s even sad to see them have clarity. My great grandmother had altzheimers. Christmas Eve, 2016 the whole family got together. It was the last day that she had any clarity before she passed away in April 2017.
Been a fan of The Caretaker for many years now, since around when part 1 of this saga of albums came out, it’s great to see it getting more attention over time. The last 5-10 minutes of part 6 is one of the most emotionally crushing things I’ve ever heard
@@SpectreMkTwo Exactly. Same. 💔💔 Especially cos Dementia & Alzheimer's killed both my mums parents. My grama died in my arms on Xmas & I'm still not ok. Wendigoon is awesome
@@AmberAmber it's frightening I lost aunts and uncles on my grandmother's side to the same conditions....I hope they find a cure for the conditions someday
Damn im not even listening to the whole thing here and it's got me crying... My mother didn't have dementia but she had brain cancer and her decent into basically losing all faculties was so fast. At the time I was 13 I remember sitting next to her in her hospital bed and we said we loved each other for the last time, after that night she started forgetting everything... Damn this just hit me different than I ever expected a video from you would. Much love to everyone who is sadly living with this disease and to their families. I can't imagine.
i get you friend. im so sorry for your loss. i was 18 when my mom passed from cancer and im 20 now, and i was with her until the end, i was extremely lucky to be able to tell her i love her as a last thing, and then for her there was nothing, sedated with morphine.
@@skylinesandturnstiles9595 thanks so much, and I'm glad that you were able to be with her. I'm also sorry for your loss. Cancer is a b*tch, 😔 tbh any terminal illness that takes away the people we hold dear. I can only hope that wherever our now gone loved ones are in death is somewhere without pain and that they are proud of us. ❤️
@@sammgemm the scary thing though is that cancer technically isn't a disease it's the body begining to malfunction and self destruct it isn't caused by anything other than our body fucking in dividing something microscopically small something it does every day. live life to the fullest people.
when i was around 8 ( like 2002 or so) my brother and i happened to be " fostered" by our grandparents and not long after we got there my grandma started acting strange. she was a hard working woman, i dont remember her job but she never missed a day. we used to wait for her to come home everyday,playing in trees and such as kids do, and run up to her happy to see her as soon as she stopped. like i said though she started acting strange. she could still go to work and do tasks in the beginning but very quickly the change in her function daily was apparent. we were scared and sad for her but grandpa was mainly an angry man and so he would quickly start to rage at her over her being different. which only added to all of it. he was so angry that he forced her to see a doctor. we were thinking something scary BUT different. NOT cancer! welp, turns out she was stage 4 with a rare form of brain cancer. she went from a hard working, do it all type, woman to her mind and body completely giving up on her and before she could grasp the situation she ended up in the livingroom in a hospital bed unable to do anything for herself. she was so weak at times she couldnt even reply to us when we sat with her afterschool. we would make her cards and all she could do was give us a small smile. utterly heartbreaking. at the end, she didnt know who any of us were or even her own name. her body lived only because a machine in the livingroom kept her breathing. shed open her eyes here and there at our voices but at the end it was sad to even look her way because of how often her eyes would roll into the back of her head. and it was a feeling of such helplessness, not being able to help her in any way. grandpa didnt have much rage to express by the time she got into the hospital bed. he was never the type to show anything he felt if it wasnt rage or happy laughing..but i could feel the sorrow he felt mixed with my own. i knew he had long since realized she didnt do as she did, in the beginning, on purpose. a few times our entire family had to rush to the hospital in fear she was dying right then. she didnt. she ended up one sunny day just stopped breathing. just like that. in the blink of an eye. with my brother and i and 2 of our cousins ( all same age 7/8) sitting making her cards at the kitchen table less than 12 feet away. he was standing with her when it happened, we didnt actually notice right away as we were enjoying our cards efforts and talking quietly. the machine stopped and suddenly we hear grandpa saying to us " guys....come here....shes gone.." and we ran over in a panic, as kids do, to both of them to see what he meant. and when we looked up at his face he just looked down at us with so much sadness etched all over his face and in his eyes and told us " shes gone. she just stopped breathing". she was the first death us kids would have to live through. but NOT the last person ive lost to cancer. ive lost many people to various cancers, the latest being march 25th 2020. my stepgrandma by marriage, to that very same grandpa. though to me she was just my grandma. she wasnt always the person she should have been around me ( well before she got sick) BUT we loved each other so dearly. she actually was diagnosed and died from the SAME cancer that took my first grandmas life. BOTH were extremely young, well before 62. i dont know which is worse but i feel your pain hun. listening to this with him hurt. probably more than it should have. but i dont think i regret it. sometimes, even in the most seemingly random times, we are just supposed to feel how we feel.
The first time I listened to this around stage 3 I just started crying I don’t know why, but there is something truly primal about the fear of forgetting everything. Like forgetting those you love, the memories you’ve made with them, the experiences you’ve had with them and many other things it’s truly terrifying
The comment section on everywhere at the end of time is a gold mine. Filled with highly insightful comments. The video is one of the most unnerving videos on RUclips. It’s a whole new level of creepy, for me that is. It’s horrifying and genius.
I read the comments while I listened to the album back in June 2020. I even left my own comment and experiences, it's beautiful and terrifying all at once
When the series wasn't mainstream the comments were some of the best on youtube Nowadays the entire thing is kids memeing dementia and comparing this album to their sexuality. It's pretty horrible.
My grandma is suffering thru dementia right now, & I can't make myself listen to the whole thing. Its heartbreaking just watching it thru her eyes. Thankfully at 90 she still knows me & calls me "that girl of ours" whenever she's talking about me which she has done my whole life ❤️ more people need to be aware of how scary this is for people going thru it. Thank you for doing this
Oh love, I'm in the same boat. My nan is 94 and is rapidly declining currently. She kept asking me to visit again but it was clear she had no concept of our relationship.
My head feels so fuzzy and I feel on the edge of a dissociation episode right now, just from the little snippets I heard between him talking. Idk how you managed through 6 whole hours of that, I’d probably be nonverbal and possibly in a panic attack (I’m high-functioning autistic and have adhd, it isn’t common I go nonverbal but I can tell that this for hours would do that). Good on you man.
Listening to this for the first time sent me into a depressive spiral that lasted months. It's not the most complex piece of music, or the most beautiful, but it's the single most harrowing example of audiological art that I've heard in my entire life. Watching my grandma decline through the stages of dementia was the single hardest thing I've ever gone through. Anyone who's gone through anything like it knows how absolutely worthless and powerless you feel, watching someone's mind waste away. Fuck, man.
the best way to sum dementia up isnt forgetfulness, its like unlearning, because with forgetting, you typically remember, but with unlearning, you have to re-familiarize yourself with even the simplest of tasks
Man, I remember coming across this album some time last year thinking I'd found a nice chill lo-fi album to vibe to whilst gaming. Shortly after I realised I was listening to something a little uncanny for my ears. Then all these people began talking about how it's an homage to losing yourself to alzheimer's.
My wife’s grandma died from dementia in February of this year and I’ve listened to the whole 6-part series twice before she passed away. I need to listen to it again, because watching her go through it and seeing all of the stages as they went by was…horrifying. Before she was in hospice, she stayed at the local hospital. I’d say she was late stage 5 to early stage 6 and our interaction was awful in such a tormenting but loving way. When my brother in law and my wife came up to say hi, she was all giddy, kinda forgot who they were, but when reminded she was excited and wanted them to join her in the room next door “because it had tables of liquor for a party they were throwing tomorrow.” But when I came up to say hi, she knew exactly who i was, grabbed my arm harder than she ever had before and pulled me in close, started crying, and said, “You need to promise me that you’re gonna take care of that girl and those babies. They mean the world to me and they’ve been through a lot. You’re all they have left. I’m not gonna be here much longer, so you need to hold them up for me, okay?” For someone battling with dementia to snap back to reality by remembering someone from their life that they met when they started to develop the disease…it’s heartbreaking and mind bending. She was completely self aware of the situation once I came and said hi. So yeah, this 6-part series means a lot to me. I didn’t get to know that woman very long, but I’m proud to have known who she was.
Sorry Wendigoon, I couldn't go thru all of it. My biggest fear in life is getting old and having dementia, mostly because of my great-grandmother situation. My anxiety was to the roof, but thank you for your amazing work. Keep it up!
Some dementia is genetic but some is environmental - a toxin called bmaa. If she was exposed to that and you haven't been you are probably fine. I think there are tests as reference genetic susceptibility.
@@rosiehawtrey oh, I heard of that, but it's a genetic thing - she's not the only one in my family who had some type of dementia... Unfortunatelly, both in my mom and dad side. I heard about these tests, but in my country they are hella expensive. :c
It's kind of like writing a final paper and then your computer gets fried from a storm (happened to me back in the day when a hard ethernet line was still a thing).
My brother suffered a stroke when i was little and at that moment a part of him died. Everyone in my community knows what he was like before, how he was great and friendly and active. All i remember is him picking fights with everyone and yelling. Because of that stroke his memory became terrible. I dont think he had dementia or alzheimer's but all the talk of memory loss has me missing him because he'd always repeat what he just said. Every time i went to see him when he lived in a caretaker's home.. it fucking broke my heart. He was so excited and he thought we'd bring him home. He'd always ask how everyone is. And when we left he'd look so heartbroken. He passed away two years ago and i still cry when i remember him. I miss him so much. I hope he's in peace now
I'm so sorry. My uncle had two strokes, and my uncle is gone. His body remains, but it's just a shell. I don't know who he is anymore. How can you mourn for a person who died, yet still walks the earth? Everyone expects you to be happy, but you just can't.
They are all happy. They are all resting now. No need to worry about them because we must carry on with our lives to be ready to meet them. Live on and make yourself proud of the life you led when you must face your brothers or uncles or grandmothers.
I think the length of the album really symbolizes how dreadful going through dementia might be and the fact that wendigoon listened to it nonstop probably made the experience even more genuine. Dementia patients go through this for a long part of their life and probably are constantly wishing for it to just end. The fact that we can just finish the song and move on with our lives but patients don’t ever have an ending moment without it is horrifying.
![Jack Harlow - Hello Miss Johnson [Official Music Video]](http://i.ytimg.com/vi/Q86_nlRoIGw/mqdefault.jpg)
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Thank you to Raycon for sponsoring today’s video!
Yes sir
Thanks for the vid!
@@leangreenmememachine5246 Yes sir
Man thought it’d be a 6 hour video
:)
Honestly I’m not scared of death I’m just scared of deteriorating, losing my memory and my ability to do simple things and my body just slowly shutting down is terrifying
my brain is so hyperfixed on death that I have lost most of my motivation to pursue my dreams. What’s the point of it if I’m gonna die one day? Why keep going with what I love? Maybe it’s a mix of my depression too but damn, the thought of it all sucks.
@@Connorly800 Live for a good time not a long one
Same! I'm not afraid of dying but dying as a hollow husk of somebody that you used to be terrifies me
@@geosb05 in my opinion I don't think ANYONE is afraid to die, the main things people are usually afraid of is HOW they are gonna die, and what happens after death is also another factor
i want to read this seriously but your profile pic...
The best description of dementia I've heard that always stayed with me is
"Imagine you've wrote down every memory of every day of your life and every thought on a million pieces of paper, all organised and stacked neatly. Then someone walks into the room with a leaf blower. Now you're plucking random notes out of the air and you don't recognise the handwriting"
And then the writing starts to blur and smudge, and then the notes tear and weather away, and you slowly forget what paper even is.
Literally my grandfather died by forgetting how to breathe despite at the end being completely delusional talking to his his dead wife, mother and any shadow that looked like it might hold an interesting conversation the mans lungs was healthy as a horse never smoked or drank he always got 99 on the blood oxygen meter one day he was napping in his chair and he just started exhaling kinda jittery like quick puff of air out over and over by the time we realized something was up he'd lost his pulse and at 97 and HOSPICE care for a year we didn't try CPR it was just idk a not right way to go the entire experience or the very end at least he never woke up he went in his sleep @@headphonesaxolotl
@@headphonesaxolotlthat’s a great example and explanation
@@CoffeeFor__ eh, not really
@@kevinmatta9262d1 hater
The last artwork is a painting turned backwards, symbolizing the person's entire life, still real, but never visible or knowable again. Powerful piece.
when i used to do art class, to prepare for a painting on acryllic paper or whatever, we'd tape it to an old peice of board in the criss-cross pattern in the final image. to me personally, it looks like a freshly finished painting - with the absence of the painting itself. the experience is there, but the product is missing, without a trace.
@@beez3620 i think this reasoning makes way more sense, the life is over, but you cant remember any of it
I have also seen people state that the tape is supposed to mark something as broken or to be repaired. This tape is put on a blank cardboard. So it is broken, but there is nothing to repair.
As someone in cognitive decline, I can't even describe how accurate your comment is. I feel like so many parts of my life are still there. They happened, but are gone at the same time.
I just spend 3 hours staring at that image and now finally realising this twist is crazy
Terminal lucidity is still the most terrifying concept I've ever heard of. At the end of your rope, you have a last hurrah. olmost everything you've forgotten comes back for a while, but after a hour or even a couple days you just, lay down and forget how to breathe.
This is actually a common thing with a lot of terminal illnesses. In the bodies last moments, it can almost tell that you’re going to die, so it suddenly goes into overdrive to “protect” you and save your life. Cancer patients often report feeling much better in their final days and even think they’re going to be okay. Then the body finally loses its fight and it goes.
I believe it is also referred to as a "death rally." It's your body's last effort to save you and can be shocking for those around you.
@@RonniV2 when my mother was going to school for nursing, they had to watch a movie to prepare them for death. It was several patients going through their last moments. The one that got the whole class was a woman with cancer who was close to death but was telling everyone she felt great for the first time and that she thought she was going to make it. Her family was really happy too. A nurse quietly walked over to feel her throat, like they knew, and the cancer had reached her lymph nodes. She died soon after.
@@xXprettyxkittyXxas a person with lung cancer which was diagnosed extremely late, I'm terrified.
@@theorphanobliteratorI wish you luck on your recovery
This made me realize that Dementia isn’t just forgetting where the keys are or who a person is. It is forgetting what keys are and what a person is.
its forgetting how to swallow its forgetting how gravity works its forgetting you have a child its forgetting how to read its forgetting how to breath forgetting forgetting forgetting
Its ego death, but as a condition, not just as a drug thing. Ive had ego deaths from doing drugs, and while it was nice, I couldnt imagine what life would be like, living in that
@@laescalera747 forgetting the ability to conceptualize, at the end.
You lose the ability to know what forgetting is. You lose EVERYTHING
You forget even trivial things like how to move your arm or how to swallow
fun fact with stage 6's art: it's a painted canvas, just viewed from behind. This is to show that the "painting" (memory) is there but the patient can no longer see or understand it.
The fact that you have shaggorath icon and you're here and you know that makes me excited.
I see it a bit like the metaphoical POV of the patient. The painting is like their mind, which is still there, but now they can only see it from behind; it exists, but it's featureless from their perspective.
People who are still alive can see the other side; they can see the painting of who this person was, but the person who is dying can no longer see who that person was - they can only see that it existed, and now they're moving past it into death.
Stage 6 is one of the best artistic depictions of nothingness I've ever seen honestly
That’s a very subjective statement. But okay.
I thought it looked like a steele door with those two hinges on the side. By the last stage, the mind is completely closed off.
@@spectrosinjkai6973 who
It's only pretentious if you're lying, if art makes you feel anything, don't be ashamed to talk about it or feel it - that's why it exists
Well said
@@user-ch9vd4cd3t I would say I had the physical melancholy when I listened to this for the first time.
Like, I was walking somewhere listening to it and the clarinet on one of the parts made me almost weep bro lol shit is crazy
@@user-ch9vd4cd3t people can have complex emotions from experiencing art lol
Perfectly put
Go see somebody
My 64yr old dad is going through early onset rapid Alzheimer’s. Two years ago he was just forgetting little things and would do things like leave the milk out when he used it. Now he has problems getting dressed properly and does things like leave the gallon of milk on top of the fridge rather than inside it. His neurologist gave him a test last week where he had to make change for a dollar, and fill out a practice check to pay a simulated bill, and to identify different pictures of animals like giraffes, rhinos, and elephants to see if he was capable of taking care of himself and he didn’t pass or complete anything on the 1st part of the test and got frustrated and walked out…..by the time i got him home he forgot where we had been or what we had been doing. At thanksgiving he couldn’t remember his nieces or nephews etc., This really sucks.
I'm so sorry that must be heart-breaking
Stay strong brother, all the best to you and your dad
Fuck me man I'm so sorry
Hold fast, man. That must be horrible to witness. You just have to keep going no matter what.
I remember seeing a post about a grandpa wanting to see his grandson but by then his grandson was married and he thought it was his son, he had a kid and brought him to visit and his great grandpa and he lifted him up thinking it was his grandson and was so happy
He later died a few months later and its heartbreaking
Seeing his upbeat personality slowly degrade as the stages pass truly shows the horror
Mmmmmmm Dr.Pebba
@@drpepper2519 Doc pebber
Frrr
True 😔
I think he's just getting tired, it's hella long
From what I've read, the best defense against Dementia is to keep your brain busy as you age. This is why, to answer Jerry Seinfeld's old question, yes, the Japanese know about the fork, but they encourage their elderly to use chopsticks because doing so makes you concentrate, even if only slightly.
Lol good thing puzzle game apps are my favorite :3
@@Callimo good call
So, is it good if I have ADHD? Technically that means my brain is always going, right?
You dont get to counter dementia its just something that owns you. it just takes a long time before people realize it owns you. knowledge of it owning you is not something it graces you with.
@@ShitFucks brain business keeps dementia from coming over to own you although once it owns you you are owned
This makes me feel incredibly lucky that the few days I got to see my grandma during her decline, she was lucid. She didn’t recognize me because she hadn’t seen me for a long time, but she thought I was my cousin so that’s pretty good. We had a nice long chat about life. Her childhood and that kind of thing. I made sure to tell her how amazing of a job she did raising my mom. Got her a sprite (her favorite soda), hugged her, told her how much I love her, and left.
It makes me very happy to hear that you got to see her one last time and got to tell her how much you love her. I lost my grandmother earlier this year due to Alzheimer’s. I didn’t get to see her for the last time, and all I can ponder about now is what her final days were like… Both our grandmothers are in a better place now ❤️
Okay, you left. But you never mention arriving. 🤔
@@christiankytoh I’m sure he came to his grandma plenty of times
Damn this shit made me tear up.
Loosing my grandpa to Alzheimer's was hard for me.
I am a caretaker for dementia patients in a long term care facility. I'm only 18 years old and I started working there at 16. It was a big shock first. I got to know them and learn about their lifes and their caracther. My job essentially is to make their confusion less scary, they get scared and they think they are at an other point in time in their life and my job is to be in their world, not take them back. If someone wakes up in the morning and is telling me they want to go to work or that they are waiting for the train, I just tell them that the train is shut down today, and that their boss called to tell me to tell them that they can take the day off. I have to lie daily, but it's a sweet lie, that makes them be in their own wold intead to be pulled back to the sad reality they are experiencing.
I've concidered listening this peice from begining to end and after watching this video, I know that i probably should not. I love my job, I know that it's terribly sad and depressing to work on a unit with 40 dementia patients, but to me it's such an important job and dedication that I don't want to make myself more sad about the subject. My patients are mostly around stage 2 to 4 and to them, they wake up, and they process the same day over and over without realizing it. I wanted to make this comment because it's scary and terrifing to know that it can happen to anyone, but i wanted to remind anyone who is reading this that people that work with these patients, and love their job as much as i do, will take care of them and make them feel as happy as possible. I hope a cure makes it's way into medicine, but until then I will be there and so many other people will be there to take care of these lost souls.
Thanks to this job, I now know what my purpuse in life is, and my passion to taking care of others grow's every day.
Thank you so much for your compassion and patience. People like you are what gives patients and their families some form of comfort, even while lost in the throes of their deteriorating health. You're doing so many people a great service, and I hope that we find a cure for this condition too. In the meantime, make sure to take care of your own needs too. God knows that such a job can be emotionally taxing, although very important ♥
Thank you for your compassionate insight. My mom had dementia at the end of her life and she set up her end of life stages and I feel so guilty that she insisted on dying among strangers I hope she had caregivers compassionate as you are ❤.
I cried reading this comment. You are such a strong person ❤
Thank God there are people like you who help them. My grandmother suffers from this, and it's heartbreaking to see her get confused sometimes. I hope someone finds a cure for this horrible disease.
You are a wonderful person for dedicating yourself to people who suffer from dementia. It's good to know that there are people who care for others when they become incapable of caring for themselves and focus on giving them happiness in their last days. Much respect to you.
I feel like people kinda lost the forest for the trees with this album. People have kinda mythologized it to this thing where every article about it is "The album that makes you want to kill yourself" or people talking about it like "Don't listen to it, it's extremely depressing". When in reality, it's just a piece of music with a message. That message can be sad for some, but the meaning has changed from "Please be aware of this illness and how terrible it can be for some people" to "Look how scary these albums are!"
Indeed, they overanalyzed it so much they forgot it was even music and only talk about the concept
remember when someone made a fucking friday night funkin mod for this album LIKE
@@Pepstep_07 yeah like, why? it's not going to do anything good for the album and is not realized well, especially for a game like this
@@banjogyro The person who made that mod said they felt moved by the album but like. Is trivializing such a serious heavy art piece into a fun little game really the best move? At one point people were upset because fanart of this mod was clogging the dementia tag on instagram that people use to find resources and support groups
I really like seeing what it does to people, though. I think that's where most of my appreciation for the album comes from.
The music in stage one gradually transitions from nostalgic and charming to just unexplainably off. It's like moving from "Grandma forgot her keys, she must be getting old haha!" to "She forgot an appointment she scheduled only a day ago." It's the gradual progression that begins to make you worry, even if it's only a little bit.
the worst part is that being forgetful is a trait of being old when its a sign of early dementia which is what ur talking about but its really disturbing to see it go from something minor like forgetting your wallet to not being able to remember anyone or anything
Or "grandma forgot my name"
Grandma forgot how legs
shit it's normal for me to forget an appt I made a day ago. Like since I was 12.
this was almost the exact line of thinking my whole family had watching my nan age, she’s still around but she thinks my mum (her daughter) is still alive when she died 8 years ago. and she thinks i’m still ~6 years old and calls me Michelle when she sees me (i’m 21 now, and look a lot like my mum did). it breaks my heart because her dementia didn’t get bad until i was maybe 17/18 but she still doesn’t remember all those times her and teenage me had together. it’s a horribly sad disease x
The Caretaker is such a fitting name for an artist that would make an album like this
Thats the joke
@@SaltyCrabOfficial There is no joke???????????
@@gordopendejo944 incomprehensible, may allah have mercy on your wretched soul
@Jamie W multiple jokes attempted and missed in this comment thread
I was a caretaker for 3.5 years ,
It takes a toll on a person .
12 hr shifts are regular .
I quit after I stopped caring about clients I took care off .
My old cat had dementia. How we first realized what was wrong, is that when she was younger and couldn't find us in the house, she would meow in a way that sounded like she was saying hello. Then we would call to her, and she would find us. But towards... The end... She would do that while in the same room as us. We would be there and she would be lost and confused, meowing as if we weren't there. Her eyesight was fine, she just didn't recognize us as her family. She stayed starving herself so we made the hard decision of euthanizing her. That was the first time I ever saw death. I found out that when someone dies, they lose control of their pupils. So when she lost life her eyes got really big. And even now I can't get that image out of my mind. I love you and miss you, Kiya. I grew up with you, and until around 2018 I had never been without you. You pretty girl❤️
this made me cry so much
@@channty5572 me too❤️
i didn't know cats could have dementia
Heart breaking. I’m so sorry for your loss.
cats to?!
The ending is symbolic of the phenomenon called "terminal lucidity". Shortly before death, dementia patients will frequently exhibit an apparent return of their cognitive facilities and memories. They are, for a brief time, much like they used to be before the disease.
I realized that with my grandma. She would stare at the walls nd never respond. One night she sat up and said I love you. She past away the next morning
That must be horrifying, to suddenly wake up from your decline with everything you lost, only to remember the fact that you’re just going to lose it again soon, forever this time.
Definitely. My Grandmother (age 92) barely moved, barely talked and hardly ate. Went to the hospital because she couldn't get out of bed one morning. They told us she had cancer and to make her comfortable. When we brought her home she was laughing and Joking around with everyone and even tried to stand up and didn't understand why she couldn't get to her feet. She even said she was hungry. She ate and we got her into bed. 7 hours later she passed away. It was like all those events were a final rally before leaving this world
@@noizepusher7594 It probably isn't even that horrible for the person. Imagine you're suffering for years, waiting for it all to end and then you suddently wake up and realize it will all be over soon.
My grandfather was in the hospital and this happened to him a few days before he died. He was talking and acting normal. My father still thinks the hospital killed him.
A mildly terrifying thought I had while watching: this piece is based around a musical theme emblematic of the childhoods or prime of life for people most likely to be experiencing dementia *now*. Imagine a similar piece, but constructed around a musical theme meant to evoke the 80s, 90s, and 2000s...
imagine this video but with 100gecs. terrifying
it'd probably sound like a death grips instrumental
even though you say this, i feel more nostalgia for the music that the caretaker sampled than 90's or 2000's music, im born 2005 if you were wondering [so smol, but nearly 18 :( ]
@@zaadus112 That you were born in 2005 and STILL aren't 18 somehow makes me feel even older. Thanks, kid. Thanks a lot...
With my luck, Rebecca black’s “Friday” will somehow be the song on repeat for my dumbass if I ever get this horrible disease
During my grandfather’s last weeks, his memory deteriorated quickly. For his last birthday most of my immediate extended family went to the nursing home he was temporarily placed in with a cake to celebrate. During this, my grandmother pointed around the room to each person and asked him what our names were. He was always bad with names. Even in his prime he would go through about 5 family members names before he got to yours, but he would eventually get it right lol. Anyways, he struggled to remember a lot of our names. When she got me, though, I slid out from behind my uncle so he could see me better, he smiled and without hesitation said, “That’s my Tammy” (which, fyi, is correct lol). I’ve held that moment dear to my heart for 18 years, and now knowing what he was likely suffering through, it definitely makes me sad, but it also makes that moment even more special to me. ♥️
I can definitely relate to this.. the last days for my grandfather, me and my mother went to see him. The nurse asked him if he know who we where, and he looked at me and smiled and said "that's my beautiful granddaughter" those where the last words he spoke before he had to get a breath tube put in for the remainder of his time. I'll never forget those words.
I’m sure he was as happy to recognize you as you were to be recognized
It’s me and 4 siblings and my mom does the same thing ALL THE TIME lol, BUT, she seems to always start with the first horns name regardless of who she trying to say lol we love it though.
What a beautiful moment you can treasure. Thank you for sharing it with us.
That's beautiful ❤️
Honestly, the worst part for me was how thankful I was for it to be over, and then realizing what the video ending implied happened, what "it being over" meant
" A confusion so thick you forget forgeting"
Trully, the most horrifying, yet beautifull piece of musical artwork i have ever witnessed.
While I understand the whole “ooh spooky creepy” allure of this, more than unnerving or scary I find this just overbearingly sad. Knowing your sense of reality and self is slowly crumbling away but also being self aware of the fact that you can’t do anything to stop it, it makes me feel more hopeless than anything. :(
hopelessness and fear go hand in hand for me. i fear true hopelessness more than anything. everything i fear is a result of the hopelessness that comes along with the frightening thing. death of myself, physical pain, failure, death of loved ones, mediocrity, etc.
Same with me, it’s not creepy or unnerving at all, it rather saddens me how utterly crushing being not able to make heads or tails of yourself or any memories. It has to be terrifying to the one going through it, not being in control of your own mind.
I honestly dont care about me losing my memory and awareness, but I don't wanna see my grandparents and mother go through this. Like imagine the people you've known all your life just forget who they are or who you are? That shit is incredibly sad.
When the first part of the music started playing the old music to think of an old couple dancing to it and threw the year the woman forgets her love the man she married being alone.. It's all I could think from that
I agree, it's a deeply dreadful feeling.. it gives me an understanding of some sort that's hard to put my finger on of what my grandmother is going towards and it's scary
The ending part where it sounds like angelic music might be, at least in my opinion, a reflection of how in some cases of dementia there is a short amount of time right before a patient dies that they seem to show some return to who they were. They seem regain some cognition, some form of peace before they go.
Terminal lucidity.
I have also heard a few theories that it is the sound of the funeral service - I'm not sure what I myself believe, I really like this idea though
People with dementia also have these random lucid moments all throughout the stages and let me tell you it's weirdly sad and scary to witness. That's at least what I felt like when I saw it happening with my grandma.
@@DieAlteistwiederda That's terminal lucidity, usually when it happens a person with dementia loses it temporarily
apparently they die a short period of time after this happens
My personal interpretation is that it’s the dying person’s final moments fading back into a hazy memory of them being in church as a young child. Faintly hearing the choir music as the childhood memory rolls them back in a foggy haze of vague nostalgia in their last moments.
That "Homeboy shouldn't have passed me the aux" cracked me up when I read it and then you read it and all of a sudden I understand why people say happiness is better when shared. Only cost me an existential crisis.
My grandpa lost his battle with dementia in July. He was a genius, valedictorian at University of Washington's school of engineering, was high clearance at Boeing his whole career a
and he and my still healthy grandma were high school sweethearts.
The most terrifying part of this to me was in the later stages where the music would sometimes come back and Induce calm. To me, that represented brief moments of self awareness and clarity.
But for someone like my grandpa, those moments were scarier than anything. A month or two before his death, he had one of those moments. But that calming music couldn't be what he was hearing when he used that moment to try and throw himself off a balcony and assaulted a hospital worker in the process.
There's no way that's what was playing in his mind. And that scares me.
"To me, that represented brief moments of self awareness and clarity. " - when my step-father's mother died, she was confused about her time and place for a long time. However in the last hours or days of her life, and I wasn't there, she became lucid for a brief period. Knew who she was and where she was, but said at the end "I'm not supposed to be here." She died a few days later.
They don’t have balcony’s in hospitals
@@Maddysublime I've been to a hospital with a balcony
@@Maddysublime stop being insensitive not all hospitals are built the same way
When my Great Grandma had it she would insult workers for being Hispanic and would swear she'd try to talk and she'd start crying when she forgot what she was saying towards the end she'd just sit in a wheelchair and her eyes would get glossy like she'd forgotten how to cry. It was sad, scary, and confusing to see.
My wife turned 49 today (Im 44)and she is on hospice nearing the end with dementia. From an outside observer of her dementia it seems pretty close to the journey she has gone. I had to put my career on hold and become her full time carer for the past two years and have witnessed horror and mental torment that no one should ever have to endure. The feelings that this piece imposes are pretty close except maybe it isn't as intense as it should be in moments. Thanks for reviewing this and letting people know this exists.
It's a horrifying disease and I watched my grandpa go through it before he succumbed to cancer (or heart disease, both were caused by old age), in one sense we're lucky he still recognized all of us when the cancer took him but even still watching him change into a husk of himself and his personality twist was horrid. It's a living grief because you can't get closure since they aren't dead, but who they were is long gone. I genuinely don't know how my grandma managed as caretaker for as long as she did honestly as I'm traumatized just from my brief visits, but she lived with it every day.
I hope your wife manages to pass peacefully like my grandpa did in the end. You are strong beyond belief for caring for her like that with this horrid disease, just remember you have to take care of yourself as well which is often overlooked in the stress of caring for others and that it's ok to ask for help whether that's from home help aids or in the vein of seeing a therapist to help with the stress. I wish you and your wife well.
I really feel for you. I take care of people that suffer from this for a living, and some days it's beyond emotionally taxing. Dementia has such a large variety of effects on people and develops on an individual basis. You never know what each day, let alone each minute, will bring to them. But just know you're not alone.
I'm praying for you both :(
Good lord, that’s horrible. I’m so sorry to hear that someone so young has to go through this. It’s bad enough when it’s a grandparent or great grandparent, but in someone so young… it’s just heartbreaking. I’m so sorry that you both have to go through this and my heart is with you both. Best wishes, my friend.
Dementia in her 40s?
Not so fun fact: Synapse Retrogenesis and Sudden Time Regression into Isolation in Stage 5 are the parts of Alzheimer's where a person looses everything that makes them who they are, any bit of personality or intelligence is lost and they are basically reduced to the mental capabilities of an infant. And yes, this means that the person is fully aware of what is happening to them for about half of Stage 5.
The reasons why the music becomes much more peaceful and held back is because as the person looses everything they've ever experienced in life and any sense of awareness, they no longer feel fear and the rest of their life is spent in emptiness.
that why dementia scare me its not just about your memories you actually lose and forget yourself
I hate the idea of knowing that you’re losing yourself. There’s some bliss in ignorance.
But being aware that your personality and reality is changing outside of your control is terrifyingly sad.
The idea of that just fills me with dread.
Damn. Well at least they aren't scared. Do they become antsy from lack of stimulation like those in a sensory deprivation environment do?
@@ACDBunnie From what I understand, in the part of stage 5 where they are still capable of awareness, they are antsy, and usually fidget with things. They do it to keep their mind occupied
i hope the soul is real
39:29
When you said "I finally heard music again" lighting up, imagine what end stage dementia must be like. Years of the awful drone, horror, and nonsense, and then the first sliver of something that feels calmer, even though it's not familiar at all.
When covid first hit, I got sent to a hospital in CT to help out with their patients. I remember one patient who had it was an older gal with dementia and I'd never been around someone. She had no family to talk to cause most of them left her in a nursing home to be someone else'sproblem. Well, in her condition we had to do everything bedside including bathing and caring for every need of hers. I remember we were trying to change her sheets and she had gotten to where she couldn't get up anymore, and we had to roll her in bed. She started crying and screaming and I think she believed we were trying to throw her. Well someone said something about sunshine and the patient started singing "you are my sunshine" I asked if she liked that sing and she said it was her favorite. So I said I could sing with her if the other staff could move her and she agreed. She held my hand and we just stared at each other and sang the chorus to "you are my sunshine" over and over while the other staff changed her bedding. Now this was over a year ago, and I can't help but feel a twinge in my heart when I hear that song, thinking about this patient. This gave me an idea of what things were like for her and this took my sunshine away.
Thank you for giving her a calm moment where she could do something that made her happy. You’re a good person.
You must be new
@Winter 💜 Bear Aren't you yourself assuming that they don't know the circumstances of her being there?
@Winter 💜 Bear if no one visited then they left her there to be someone else's problem by definition
my grandpa always sang "you are my sunshine" to me when i was little. he passed away when i was pretty young and i recently learned he had dementia as well. i was too young to understand what was happening to him and that makes things like this hit harder.
My dad was jabbering the last time I saw him. But he was okay. He said " I am so happy. I love my family." And all the pain that I felt for him subsided. He's OK. He is loved. He is gone and at peace.
Yo, I appreciate sharing your story. Thank you and God bless.
Dementia: The good ending
I certainly did not expect that.
i am so sorry. i lost my Momma to it a year ago, last January. It takes the most brilliant people, it seems to me. She was an English Major, Published Poet, and Comptroller of a three thousand employee company in the late 70s...rare for a woman at that time. i think it took away her fear of passing away, honestly. Maybe that isn't the worst thing, but we cant really know.
As a side note, stage six's artwork isn't even a blank canvas, it's the BACK of a canvas. There's not even a possibility of painting what was once there. Also, I think your feelings on the last 6 minutes were very interesting!! Most people attribute the sudden return of "normal" music to terminal lucidity, or the almost angelic sound of it to the person dying and going to heaven
I saw stage six and said “seems more like the back of a painting, as opposed to a blank canvas…”
Thank you fir affirming my thoughts here haha.
It looked more like a door to me, complete with hinges.
@@jackastor5265 I definitely see it too.
@@Bouch1018 Right? It looks like a door that's been ripped off it hinges.
According to an interview of the artist, he actually wanted to show another painting like in the other stages, but halfway through he flipped the almost finished canvas and preferred to not show it for a more powerful image. You'll never know the front of the canvas because you're gone.
When I was 34, I was given a medication that gave me the symptoms of dementia. I checked all the boxes of stage 4, and some of stage 5 Alzheimer's Disease. I have no memory of two months of my life, and have very vague memories of falling into it, and coming out of the inability to create memories, the noise distortion, body temp regulation issues and so on.
It's fucking terrifying.
If you don't mind me asking, how did you find out in the first place? I am extremely paranoid of dementia and cognitive decline in general, so I'm asking for some peace of mind so that I can spot the signs when it comes.
However, if you don't feel comfortable sharing or recalling, its fine, I am mostly asking out of curiousity and I don't want to cause any discomfort. Anyways, thank you in advance.
@@fjgdkdhgdj816 It takes a few specialists and some time to figure it out. A few things I noticed personally, as I used to have this paranoia due to anxiety, is if the nature of it changes, it's anxiety. If you are on edge about it happening, you likely don't have it. That part of you that has the ability to go through all the checklists of "Do I? Do I not?" gets taken away. I don't have the cognitive ability to be like that because that would be all I would do. Things slow down. It takes me a few more seconds to react to complex sentences, and the same goes for internal anxieties. I'm going based on when I had a memory, as there was time after the chemo injection and before supportive medication was given that I don't actually have a memory.
Another thing is consistency. Anxiety based cognitive changes can change based on quite a number of things. When you go into an episode of cognitive confusion from a brain injury of any sort, a funny story can't take you out of it. The story confuses you. The characters don't make sense, and you are stuck in this in between phase of figuring things out that you used to spend split seconds in for what feels like forever. With anxiety, it might take a trained professional like a therapist, but you can be taken out of it. I also cannot change the fact I lose information. Before when I would forget what I was talking about, I would laugh it off and then remember then continue telling the story. Since the injury, I have to ask people what I was just talking about since my brain has a hindered ability to store that information. The anxiety embarrassment, no matter how intense, doesn't help motivate me to navigate this on my own. I have to tell almost every person I'm in a longer conversation with because my brain just quits sometimes.
I've also needed to adapt how I do things and have needed to since the major injury. I am writing this on a notepad so I can see the whole thing. If not, I would have made several major typos, repeated three sentences (at least), and wrote run around sentences that made no sense.
There's really no definitive answer I can give you other than this is something you don't want, and being anxious actually increases your chance of this happening. Look into ways to relax instead of whether you have it. Seek treatment even for mild anxiety or neuroses that you might have because it's worth it. Don't live in an area that has no neuro, cognitive rehab, and psychiatric services. Unfortunately I can't give you any advice other than move. I know some people don't have the privilege. I'm one of those people in a low service area with high needs not being met. You can't get care that simply is not there.
Good luck with whatever is going on.
btw I was lucky enough to be a typist (transcription and data entry) before all this crap happened, so as long as I can find the words, I can type them. Aphasia is a hard one to tackle, though, even with typing. So much Googling D:
@@maggiekelley259 Thanks for taking your time to type out everything, it helped me gain a lot of insight!
@@fjgdkdhgdj816 No problem. I like when people ask about it since no one had any clue what was going on when the injury happened to me. If I can help one person who either think they're going mad but aren't, or are just confused about cognitive changes that are happening, I'm good. I can't leave much of an impression on the world in my state, so I prefer to offer help to people and make little impressions on individual lives instead.
Wendigoon - " This music was terrifying and now it feels like a dream"
Also wendigoon - "I've been eating this cookie though!"
***cookie***
Cookie helps melt the pain away
ay he deserved it
Did he?
C O O K I E
I inspect alot of senior homes fire protection sprinklers, etc and understandably alot of them have dementia wards which are locked with 24hr nurses. One gentleman really stood out to me because he could not walk on his own and never spoke. Everyday at about 10am he would (with the help of a nurse) shuffle over to the piano they had there just for him and play from memory an hour long concert with no mistakes. It always amazed me that this man, who didn't even know who he was, could sit down and play for an hour perfectly from memory.
It reminds me of a book I read once that mentioned the part of the brain where habits are stored was different from the part that dementia/Alzheimer's attacks, so people who were even severely affected would be able to act out anything that had already become a habit for them.
It also mentioned that if anything was out of place (eg you eat breakfast with your wife every day, and one day she's not there) the patient would become frustrated and wouldn't know why.
I'm sure playing that piano was one of the last few things that truly brought that man joy
I knew a man like that when I volunteered at a senior center for a few mornings. This elderly gentleman in a wheelchair that sat still all the time, just there.
But if someone rolled him to the piano and lifted his hands up to the keys, he'd cheerfully play away, sounded great. He'd go on for a while, several pieces, then just stop, shut back down.
I can never forget seeing that, and what it implies. He's still in there, just trapped.
It's said that the last thing you forget when you have dementia is your favorite song. He could probably play so well because he was desperately clinging to that final part of himself. It's really heartbreaking
Look up a video of a man hearing his favorite songs after years of alzheimers/dementia. He's practically non-responsive, but it's like he literally comes to life for a little bit afterwards.
I’m currently working clinical at a nursing home and, understandably, many of the residents have dementia. One strange but interesting thing I was taught while working there is best described with this example.
I have a patient who wakes up every morning, gets dressed, and walks to the bench outside because he’s ‘waiting for the train for work’. Instead of saying to him ‘there is no train’ or ‘you don’t work anymore’ it’s a lot healthier to make excuses like ‘the train is out of service today. We told your boss and you’re allowed to take the day off.’
Essentially, we get into their world instead of pulling them into ours. It’s terrifying for them-or downright confusing-when we try to faze them back to reality. It’s sad, but an important thing to note if you ever are around people with dementia.
I never actually gave that any thought, now that I’ve read your comment it absolutely makes more sense to let them stay in their own world rather than pull them back into ours
This is extremely horrifyingly beautiful. The fact that the only "cure" we have is to let them suffer till death makes my heart explode with sadness but it makes absolute sense. To put it into perspective, its like telling any normal person that Gravity is fake, it'll shatter your being to be told something you've never belived in. Thanks for this.
I remember seeing photos of a care facility in Eurpoe where they made a small town to mimic the patients' childhoods. It helps them relax to be somewhere familiar.
I always thought "endulging" them was better than trying to tell them that what they're experiencing isn't real. It's cruel to tell them that what's very real to them isn't actually real.
My grandmother’s best friend Swanee has dementia and often asks where her mother is. We always say things like, “she’s at the store” or “she’s just visiting a friend”. Not only does it keep things less confusing for her, but also less heartbreaking. To be unaware of your surroundings and then be told that a loved one is gone is a traumatic experience that I can’t even imagine putting someone through
honestly, this is kind of how it feels to go through psychosis. You start feeling like something is off and as you give it more attention trying to snap yourself out of it you realize it's getting worse until you're scared you've lost your mind. Eventually, the horror and confusion start to feel mundane and you even start to get comfortable and ok with what's happening. Then on one random day, the fog starts to clear, and it's such a relief because you had almost given up hope you would ever feel normal again.
When you come out the other side your a completely different person. Whoever you were before is gone. You have a different perspective of everything, like you just inherited someone’s body and life. Nothings ever the same even after you come back.
yup just about. and then when it only takes one question from someone to start it back up again 😫
My aunt had dementia and as I listened to this album it was the closest thing I could experience. She used to be a polyglot - speaking fluently 5 languages and a skilled piano player.
The time she lived with my dad (her brother) and me, it was terrifying to watch her move her fingers like she was seating on the piano playing. Or when she was stuck on child memories, or something that happened in her life.
She used to also be very fond of my mother, but my mom already passed when she lived with me, one time I asked her who I was, she says my mom’s name.
I wasn’t hurt about it, but it showed me how the noise, blur can happen very quickly. She didn’t deserve something like this. Overall, I hope she’s okay wherever she is.
My grandma had a lot of flashbacks to WWII and some other traumatic events from even earlier in his life. She was a young adult during the war so could remember what she saw quite well and seing such a strong woman reverting back to a scared child was quite scary to me. I was just a child and young teen myself though and only 19 when she eventually died. She was the only one who never accidentally called me by the wrong name though for some reason.
Living through the same with my uncle right now. He was an ivy league educated doctor, a cancer specialist, a rugby player and a music lover. He never got to enjoy his retirement, because he was already at stage 2 when he sold his practice. He doesn't recognize his wife, his brothers, anybody. My dad goes to his house a lot to play guitar for him, and that's about all he can recognize at this point. It's so sad and so strange. This is very heavy. I'm so sorry.
@@katiemechenbier4172 Oh my, I send my good thoughts to you and your family. I know this pain all too well and I know you will get through. ❤️
Wouldn't you be happy with her moving her fingers as if she was playing piano or remembering good childhood memories? At least she had this some sort of peace in her head as she's doing this. Granting it can be annoying. But from what i heard in this album, a person with dementia can take a really long time for them to remember something good or feel good again. I guess what i'm saying is if a person finds a peace in them, encourage it, especially ones that have dementia.
@@kayosensei, because most of the time she wasn't peaceful. She was usually trapped in nightmares and traumatic events that happened to her.
It's funny, near the end you said "an hour left." This came after all the exacerbation of having to put up with the noise. I work in geriatrics. A lot of people have this mindset: "hopefully I'll be dead by then." A lot look forward to the end, even the lucid; a lot resolve to it. "An hour left" is an encapsulation of that, without intention. Very interesting.
Not everyone, I wish my life could go on forever, fuck dying
@@imonke5303 you suffer from dementia? they mean everyone who is suffering from dementia.
Idk if this is intentional but at he started with “__ hours in” and ended with “__ hours left” showing his exhaustion and fear
@@imonke5303 you might feel differently when you’re older, a lot of people are content with their life and feel they have experienced everything they want to. Especially with the impending dementia or other health problems, a lot of them are ready to move on.
@@imonke5303 immortality is a curse
The art at 21:27 reminds me of a distorted version of the “Girl with a Pearl Earring” painting. Almost like they saw this at some point in their life and it’s faint in memory and this is their recollection. I’d love to know.
Whoah. I see it. Man, if that's how people with dementia see or remember "Girl with a Pearl Earring", fml
That's what I thought when I saw it too
Oh my god i knew that figure reminded me of something
Now that you point it out it really does look like that painting. The entire time I felt like I had seen or vaguely compared it to another picture. It'd be neat if the artist had done that purposefully to show how the current stage rapidly declines in memory and recognition by making a piece that's very known into something that seems familiar but wildly off.
2 days ago, I attended my grandpas funeral. He had severe dementia but Covid killed him in the end. It was horrible seeing the man I loved; someone who always did his best to make me laugh, into a shell of a person.
He lived across the country from me and every time I went to the airport, he’d pick me up wearing his wife’s blouse backwards, mismatched shoes, anything to make me laugh. We always played werewolves too. And every night he’d tell me a variation of the same story. I enjoyed it very much, but when I got older I kind of found it childish and wanted to be left alone and scroll through my phone instead.
He was always so happy whenever I gave in and let him tell me the story.
It started small, he’d forget the names of the characters in the story or mix up the names of me and my cousins. Then he would ask the same question multiple times. Forget I didn’t live in the same state as him. But even when he forgot I was his granddaughter, he always complimented me.
“Who’s that beautiful lady?”
He’d always say that. Or something along those lines. I’d always smile and tell him thank you.
I wasn’t with him when he died. I have college and couldn’t go with my dad to visit him on his deathbed. I always was in denial, thinking he was going to be okay. The day after my dad flew back to our home, he passed.
Up until the funeral I was in denial that he was gone. This had to just be some sick joke my family was playing on me, and the relief I’d feel when I saw him again would be so immeasurable. So blissful. And I’d be able to tell him how much I loved him. How much I missed his stories. All of that when I got to see him again.
But I never saw him again.
I cried so much at the funeral. The last communication we had was through a text I told my dad to read him. The service for calling didn’t work down there in his room so I simply told him how much I loved him and missed playing werewolves. Apparently, for the first time in his fog of misery and confusion, he looked up and smiled.
I cry thinking about it now.
I am so so sorry.
That breaks my heart so sorry for your loss.
I should call my Grandma.....
I sympathize with you, your comment hit me close to home. I also lost mines around the same time, not to covid or dementia but stomach problems. I remember he was always so happy to see us when we would visit, he always open his door to us and let us stay as long as we like. My dad and I would be the only people who consistently visited him just to see him happy and not for money like most of the other family members. The last time i saw him he was in so much pain and going in and out of consciousness from the morphine, it was the worst day of my life because not only would i never see him again but it was also the last time i would talk to my childhood friend, who was more of a brother to me than my real one, due to cardiac arrest.
I felt the exact same as you (still do honestly) and the days after felt like an awful fever dream that I'd wake up from and see them still kicking and I'd tell them all about it. I went both of the funerals and my friend's burial (his fam made me the pallbearer for his too) but no one in the family told me about grandpa's burial so i missed it and I lothe them so much for that. He didn't even want to be buried, he wanted his ashes scattered where he was born (by a river in the jungles) but they wouldn't let us take his ashes.
Sorry for all the extra stuff i just remembered all the pain from reading your story, that's all i have left of them now is memories and the stuff that got left behind that no one wanted to take. I hope that you, and anyone else going through the same, can find some kind of peace in your lives and cherish your memories together because just like a cartoon of a blue jay and a raccoon said before: "Enjoy 'em while you got 'em"
My grandfather also had dementia for about three years and it got pretty bad where he even just walked out of the house in the middle of the night to go to church and almost got hit by a car. It was a random heart attack that did the job though. I never would've thought how happy I would feel to hear of his death from a heart attack. I honestly just couldn't live with that thought of dementia plaguing him and I like to think of that heart attack as somewhat of a miracle.
Wendigoon forgets his sponsor and has vague memories about an AI he met in a Box
ok
Wendigoon also hates black people
@@calebpendleton1571 ok
@@calebpendleton1571 no he doesn’t???
His last moments are him recollecting memories of Giants
You’re definitely right about music. My grandma that’s 93 has severe dementia and Alzheimer’s (one of the final stages). But when I play my banjo she hums along to some songs still, like oh Susanna. She doesn’t know my name or most people’s names, or where she’s at.
hey man, I'm really moved by your comment because of my gramma, keep playing for her please!!!
Neuroscientist here:
Memory engrams are both highly localized and very distributed. There's a specific part of the brain that deals with melody/music. So a dementia patient can completely forget everything else about a song the title lyrics and writer but still hum the tune and even continue it on their own if prompted to start.
It's one of the thing that drew me to and keeps me in the field, discovering the beautiful complexity of the brain and trying to unravel its secrets.
I am the caretaker. Jacob, I love you man. Think good thoughts for me, and my nan.
@@yesjermplayzgamez511 thanks man, definitely will!
@@yesjermplayzgamez511 thanks man, definitely will!
My Granny died with Dementia, she had it for years and reached what could possibly be the worst it can get. A few months before she died she resided to just screaming and repeating ‘they’re coming to take me away’ really intense stuff. But through the horrid stuff whenever I would go to her as she lay in her bed she would always repeat how beautiful my eyes were. She didn’t know who I was or why I was there in her house, but she knew my eyes were beautiful to her. I can’t quite describe to someone who hasn’t experienced it how it is to watch someone who once cared for you decline each day to the point they no longer know who you are, but not even who, what you are. I suppose this video is the closest I’m ever going to get at the moment to even slightly understand what she experienced. It’s sad to say and think, but I lost my granny a very long time ago, I only lost her physicality a couple years ago.
It's beyond words truly.
My uncle suffered from mad cow disease. It's hard to describe someone full of life, and jokes and good memories deteriorate so quickly to the point that they stop registering as a human to you.
The last time I visited, a couple of months before his passing, I remember seeing him unable to control or move his body, just laying there. He became upset, or excited, or was in pain when I came in, I truly had no idea if he was still capable of thought to be able to recognize me but the way he looked at me will be with me forever.
Was he asking for something? Happy to see me? Scared? Ashamed? Could he still control some of his body and any thoughts? Did he notice my look of horror?
So I delicately ran away to digest the scene and came back with the mindset of talking to a grave. I told him everything about my life when we were left alone, everything about the times we spent together and specially the times I've had with his daughters. He never acknowledged anything I said, bit I honestly hope he did.
After that I never visited again. It was one of the most selfish things I've done which I regret till this day.
So thank you for spending time with your granny, I'm sure that it was extremely harsh, but I'm also sure that even if that time cannot be appreciated in the same way by her due to her sickness, you helped aliviate her passing in a significant way by just being there.
"I only lost her physically a couple years ago"... that hit harder than thought it would.
I’m sorry
I'm sorry for your loss, I went through something similar with my own grandmother, but she died before it got too intense. I'd go and sit with her and she would just look at me and smile and say "pretty"
My grandma said the exact same thing, that there was something bad and something is going after her. It still hurts thinking about it.
I work at a residential care facility, I’ve worked there in dining since I was sixteen and I rarely see a resident move out, this means they’ve seen me two to three times a day every day for many years. Dementia is a daily monster I deal with, I always start to notice around the mild confusion stage, we will be having our regular conversations and they’ll be grasping for words they normally use often or they’ll forget parts of their every day orders (not even noticing it when I bring those things for them anyways.) then it gets stronger, longer periods of silence trying to remember things, though at this point they eventually do followed by embarrassment and frustration. Slowly they begin to get irritable, even the residents who have been nothing but kind in the past, they won’t be able to coherently speak to you for long periods of time, their orders become scrambled and stop making their usual sense. Then they forget your name, this is usually the point where I start to feel sadness. They’re angry that you have to keep reminding them of things, but you know deep down they aren’t angry at you, they’re just perpetually stuck not understanding the world around them or themselves like they once did. Then they will forget they’ve eaten, coming back for meals two or three times in a span of a few hours, they’ll forget what foods are or what they like to eat, generally I’ve noticed they’ll tell you about a childhood favorite food and order that for the rest of this period while they can still order. Then the stories start, they no longer have the understanding of who you are or that you’re really there to serve them food, they just want to sit you down and tell you everything they know for hours, completely unaware they’ve told you the day before and the day before that. They’ll tell you stories of their incredible lives and it seems almost hard to believe they’re coming from the person in front of you, as horrible as that may sound. They never really tell recent stories though, they’re always stories of their youth. Not of their children or wives or later careers. Usually stories about growing up or the war times. These stories often go nowhere, they can’t remember what came next or how they ended. them bringing up people you don’t know and fully assuming you do and you were there, they begin to think you’re old family members like grandchildren and subsequently get sad they forgot about you. You begin having to repeat yourself over and over because they don’t remember or can’t understand what you said. They’ll ask you things about yourself you told them just a few days or hours ago and things you’ve told them many times. They can’t remember their families, even if they’re right in front of them, how old they are what floor they live on, what foods they like or have tried (an example being asking what certain sodas like coke,they’ve had their entire life are like) what their phone passwords are or where they’ve left things (often leaving them in the dining room and never returning for them.) then they become delusional, doing bizarre things in routine or out of the blue, things that seem completely like common sense not to do, almost in the way an infant would. I’ve noticed specifically that they might order something bizarre every meal because it’s what they know and all they know. talk about things that don’t make sense and get frustrated when you don’t understand. They believe they’re somewhere they’re not or that they’re waiting for someone who either isn’t around anymore or never said they were coming. They may think they have a pet to take care of that isn’t there, I’ve seen many walk around with stuffed ones acting as if they were real. They wander around the dining room, never sitting down just wandering. Then the bliss stage starts, they are very obviously not there anymore apart from the occasional glimpse into the person you once knew. I can only explain this stage as a blank slate, they don’t strike up conversations but not in a rude way, they just don’t even think about it. They have no idea what to order and are happy with whatever they are brought (generally we try and bring them things we know they’ve enjoyed in the past) in this stage they don’t ask you for things or even really know they need to eat, they’ll pick around their food only eating it when the nurse (who had to bring them down to eat in the first place) directs them to. It’s almost like a child stage where they expect to learn everything from you and the people around them. They forget manners or what is socially acceptable to do and say, this is why they may say something outrageously rude or offensive like it’s nothing and truly, I don’t believe they understand the things they are saying or even have bad intentions. They have simply lost their filter for what’s right and what’s wrong similar to that of a child. An almost trivial thing I’ve noticed is the way they forget about their appearance, you’ll mention how nice their haircut looks or how beautiful their makeup is and they don’t remember doing it or really how to respond. Eventually they fully stop eating on their own accord, I’ve noticed during this stage they will generally ask for sweets like icecream or cookies and even then hardly touch those. They still order but their plates are always left picked at at best. This is when the physical decline begins as they no longer know how or that they even have to take care of themselves. The things people make jokes about (grandpa forgot his pants or is missing a shoe) really do begin to happen and I’ve noticed they are aware of these things and feel emotional about them unlike the media portrays. They’ll begin to become distressed, panicking or crying because they don’t know where they are or think they should be back in an old home they haven’t lived in in years. they begin to break down and cry over simple things, they can no longer cut their own food, they need bite sized pieces and thickened drinks because they forget how to swallow, they don’t know when to get up and leave the dining room, let alone where to go. They can’t dress themselves or shower, they don’t know where they are or who you are they just seem stuck in a forced cycle of survival. At this stage we usually don’t see them anymore, only glimpses when we deliver them a room tray. They don’t know what to do with it or why it’s there, they just wait for the nurse to bring them their food. Family begins to visit, they don’t interact with them or anyone else for that matter, if they are responsive at all they are irritable or sad. They can no longer use the bathroom on their own or get up to shower, they stop eating all together maybe getting a milkshake or two down. This is usually around when we get radio silence, then we’re told they passed. It’s taken me a long time to understand and I don’t think I fully ever will, I watch people I used to joke around with, people who remembered my birthday every year without me reminding them forget me entirely, forget their families, forget their lives, lose the world around them. And for me this I supposed to be my job, it’s supposed to be normal and it feels almost wrong that it still isn’t to me. It will never be normal to know what it’s like to watch people you care about die before they actually stop breathing.
wishing you strength. thank you for sharing.
Thank you for sharing. I really appreciate your perspective 🤍
This was absolutely gut wrenching. You're a hero to your community for working with these dear people. What a dark reality, I'm grateful for my mind in the present moment.
Much love ❤
This was extremely insightful and a very interesting read, thank you for sharing, your words really flesh out the reality and experience you and these people have
The ending has more significance than just making you grateful for the music you heard in the beginning. There is actually a phenomenon that has been documented where someone with Dementia will have a moment of clarity and will finally remember again... Just before they die.
It’s called terminal lucidity
That's fucking scary
@@sammywhammy8295 it's also beautiful
@@sammywhammy8295 no its fucking not you get all your memories back whats scary about that?
@@coachman1532 getting your memories back only near your death, knowing that there is no hope.
When he whipped out the Raycons I almost screamed
Its like seeing a demon you've only seen in your dreams
it was a smooth intro into it though
He says they have great power yet my left earbud always dies hours before my right one does
@@novaknight402 how do I fix it?
@@dryashes what do you mean?
@@colorsplash9964 did he stutter?
As someone who worked the night shift at a senior living center in the dementia ward, this is so very sad but enlightening. To get a small glimpse into what is going on in their mind. I loved my residents & it broke my heart as I watched them fade away from their family & us as we take care of them. We get to know them. To love them & then say good bye. The worst part was welcoming a resident from another floor to ours. They were always scared because they knew what it ment to move to our floor. What was happen for them.
My fiancé worked in a similar facility. Her first Christmas with my family, we had my great-grandmother with us who had dementia and none of us were used to dealing with her condition as she was the first person in the family to be diagnosed with it. At one point, my grandma got up to go upstairs and finish up dinner, leaving me, my fiancé and my parents alone with her. My parents got distracted with something and my great-grandma started to get up to follow my grandma. I took one look at my fiancé with a slightly panicked look. She simply smiled and went over and got to work helping my great-grandma settle back down. It’s a job I could never handle, and I have the upmost respect for anyone who has worked in that type of environment. And while not religious, I pray for those effected by it and those who help them as it’a such a horrible thing to go through
@@LateNightTableCo that’s a keeper right there
Thank you for being one of the good ones. I’ve witnessed far too many people working in senior living centers that treat the elderly like shit. for me, that’s on par with child abuse. it’s just so disgusting to me. If only all health-care workers were as kind and loving as you.
I cared for my gramps recently, before he passed. I can't express the sheer admiration I have for people that do the work you do. It broke me every single time I had to see him fade away.
That's my current job and this terrified me deeply. I want to translate this to my job but this just makes me want to hug them all.
My aunt had Down’s Syndrome throughout her life, to the point where she was basically like a 5 year old child for most of her life. Despite that, she had a surprisingly strong memory and a stronger personality. She was always fun to talk with.
About 5 years before she passed, she began developing dementia. It was gut-wrenching watching it develop in real time. From simply forgetting what she ate for breakfast, to forgetting what her favorite restaurant was, then forgetting her own family members names and referring to everyone as “hey, I know you”. Eventually she got to a point where she basically couldn’t make a coherent sentence. She even forgot how to say hello.
She finally passed at the age of 68. I still think back every now and then on those 5 years, and it scares me every time. To watch someone so strong completely forget everything over such a long time and become (for lack of better phrasing) nothing more than an empty husk right in front of you, and there’s absolutely nothing you can do about it.
There’s nothing, no words in any language, nor any image painted, that could ever truly, fully describe the horror of that disease. In my opinion, it is the single worst way to go out.
Making it to 68 with downs is a feat in its own
This just got me on a rollercoaster. My great grandma only really had dementia set in near the very end of her life, woman was over 100 so yeah, but once it did it went hard. She went through everything in only a few months instead of closer to a year. The main thing I remember though was her last bit of clarity before she passed. She snapped back at Thanksgiving dinner and started talking about how she was getting old and will probably be dead soon. She then looked me dead in the eye and said “I’m not going until you graduate high school”… she passed 2 days after I graduated
at least she kept her promise for you, i’m so sorry you had to go through that, dear stranger
@@Anonymous-rl6eh no one asked
i watched some videos about nurses saying how it's strange that people close to death can somehow "hold out" on dying a few minutes hours or days for their loved ones. in my own experience, my own mother that had ALS seemed to hang on all night until my father and i arrived at her bedside. a nurse pulled my dad aside and told him my mom had trouble breathing all night so we knew her time was near. she passed within the hour
@@Anonymous-rl6eh are you really gonna make a 69 joke now? Wtf
@@diepotato9247 a good no one asked, finally
I worked home service for a time after highschool, and we had this old woman that suffered from late stage dementia that used to alternate between wimpering/crying and screaming from the moment we woken her up to when we helped her back to bed. It's one of the most horrifying things I've experienced.
Sometimes, death is mercy
Indeed. If possible, I'd choose death over allowing myself to live in conditions like that.
Read through the comments and honestly, this is it.
For everyone involved and their sanity, I would prefer a swift and calm death by overdose, anywhere from the point where I start having trouble remembering my family and kids. I wouldn't want them to experience this but find early closure instead, so they can move on with their own lives.
Just thinking about this makes me hope I can die with a clear state of mind.
Horrors of modernity, we aren’t supposed to live to that point
@@michaelferrell8189 people have always lived that long, the difference is most people got killed before then, or deteriorated sooner, or got left to starve when they couldn't pull their own weight anymore. Not great either honestly
@Agian Andagian amen
I always think the Stage 3 album cover is Stage 2's album cover but the emotions and stability have 'burst' forth and now it's all over the place. Like things have gone wild.
Yo masako whats up
You are the last person i expected to see here!
That actually makes alot of sense especially since green is often used for negative emotions
Wtf why is goku here 😂
My man Masako, good choice of channels mate
As gruesome as it sounds... I think if I am ever diagnosed with Dementia, I would probably commit self uninstall. I refuse to become... not me. To wither and die in front of my family, making them watch me become something they don't recognize anymore than I'd recognize them. Lord forgive me if it comes to that... but I won't fade like that. If I'm diagnosed with Dementia, that's my sign that I am no longer needed on this planet.
Same boat
Yep the moment it’s a confirmed thing maybe even a trusted person to tell me I said I was going to do this in case it was already to far gone
same here pal
Same bro, I'd I get dementia imma commit empty recycle bin on myself
The reason to keep living is you.. I'd never let myself become anything other than what I am.. I'd do the same
btw, the stage 4 painting is reminiscent of 'girl with a pearl earring'. Makes me think that the subject is remembering something that touched them similarly to the music, but it's still distorted and misremembered.
That was my thought too
That makes so much sense! I thought it looked vaguely familiar
That’s exactly what I thought!!
Glad i wasn't the only one who thought this
thought it looked familiar. my high school had that painitng.
I love the fact that the caretaker included that tiny speck of lucidity right before the person dies. Thats really how it is at the end. One more good moment then nothing. Its sp crushing but so truly raw and what its like.
Yea it's called terminal lucidity
You know, terminal lucidity could be just as disturbing for someone as the confusion parts. Imagine waking up and realizing it’s been years and you’ve been hospitalized and you’ve missed so much. Also, it should be noted that after terminal lucidity and after death, it’s not just nothing, after the hell that is dementia you get rewarded, you go somewhere else.
@@zanderbraincinemas6126 that last part is optimistic at best
I avoided watching this video for the longest time, as I still don’t think I’ve really processed this, but everyone seems to be sharing their stories, and I’d like to share mine. Maybe it’ll help me come to terms with it instead of repressing it like I have been.
My grandmother passed away from breast cancer in 2016, leaving my grandad a widow. At first he was very depressed, as anyone would be, but he was able to move on. He picked up lots of new hobbies; he joined an art class, started doing community work at his local church despite never having been religious before, began volunteering at his old work place from before he retired, and he even got a new girlfriend. I was young at the time and, despite being happy for him finding another person to love, I felt a little seed of resentment towards his girlfriend. She could never replace my grandmommy. I felt like Grandmommy and Grandaddy were meant for each other, not him and this random lady. But I tried to be happy for him nonetheless. Everything seemed to be going great for him until his health started to decline, around 2018, 2019. Nothing super crazy, just dehydration, fatigue, hip problems, most likely from overworking himself while volunteering. However, around the fall of 2019, he started declining more. His house was a mess, he didn’t have the strength to clean it. He couldn’t get up and use the restroom, and he had little to no control of his bowels, so there was feces all over the couches and floor. We went to visit him during Christmas and New Years. (We live several states away) I remember being heartbroken, seeing a house I loved ever since I was a child in such a state of disarray. It smelled awful, there was clutter everywhere, feces all over my grandmommy’s favorite rocking chair. I swallowed my misgivings though, and talked to my grandad. Despite his body beginning to deteriorate, he was still my Grandaddy. I remember him enthusing about a concert he went to with his brother just a month before that. So I guess I was still in denial. He seemed normal still, so he had to be okay! The doctors would figure out how to make him better! In hindsight, I know my mom was in the same boat as I was. She didn’t want to put him in a nursing home yet, partially because grandad refused to go, and because she didn’t want to admit that he was in need of one. Until, when we went to go have dinner with him and his girlfriend for New Years, she walked in to see him asleep on the floor, unable to get up. He woke up easily and seemed fine, laughed off the situation, and said the only reason he was still down there was just because he couldn’t get up. Mom called the hospital anyway, as she should’ve in that situation. He wasn’t happy about it, but couldn’t really change anything. I went to see him for the last time in person that night. He was totally normal. Talking about stories in the family when some of his friends came to visit him, chatting like always. I remember, when we had to leave, he told me we’d need to play another game of cards soon (it was our tradition to have a tournament every time we visited.) I never got to see him again, due to the pandemic and how rapid his decline was.
It had just turned 2020 at this point. By the end of the year, he was gone. He went from physically unwell but still sound of mind, to a confused, aggressive, and unresponsive stranger within a couple months. We used to FaceTime him at the nursing home. I usually avoided doing it, as he showed no signs of being able to tell it was us behind that screen. It hurt too much to see him like that, totally unresponsive, blank. I wanted to remember him as that jolly, cheerful guy who played cards with us and had the kindest face you could imagine. I still wish I could’ve played that last game of cards with him though. Maybe I would’ve been able to, if it weren’t for the pandemic. I think the scariest part of the whole ordeal was when he became suicidal. He told my mom he was going to try and overdose on his antidepressants over the phone. This was in between moments of him gushing and obsessing over his girlfriend and moments from his past, like a moment of clarity. It ended just as quickly as it started though. But that makes me wonder how horrifying it must be to go through that, the moments of awareness in between the chaos and confusion, the pain of realizing what’s happening to you. I hope to never find out the answer to that. If I ever get Parkinson’s or Alzheimer’s or Dementia or anything similar, I hope I die before it gets to that point.
Sorry, this is all very disjointed. I doubt anyone has actually read this, which is probably for the better. This is the first time I’ve really gone through the events in my head, and this is an extremely simplified retelling of the messy reality. But yeah, if anyone HAS read this far, remember to drink water, eat plenty of nutritious food, and treat yourself how you would treat a friend, even if it seems hard. You can do this
God that sounds horrible to go through. I hope you and your family are doing ok
Same to you, friend. You were very brave to go through that and come out the other side. I hope you're doing well.
I'm sorry that you had to go through that, I went through the same thing when I lost my mother in 2001 when I was 9 to lung cancer. I was in absolute denial up until she came to visit me for the last time, she lived in Indiana, while I was in Arizona. The moment it started to dawn on me that it was extremely bad was when I woke up early cuz her and I were taking a day trip and I burst into her room and she was bald, I was so shocked and confused as I was rushed out of the room and I got no answer for what was going on until about a week before she passed. And it took me about a decade to fully process and come to grips with reality and what had actually happened when she came to visit.
Oh gosh I totally forgot that I actually posted this. I’m hindsight, I really needed to realize how traumatic it actually was in order to understand my avoidant feelings towards the situation, so I’m glad that I watched this video and reflected. Thank you guys so much for the kinda comments, I genuinely didn’t expect anyone to read this haha!!!
@@harleyowen91 that must have been very difficult for you, I’m so sorry. Cancer sucks, it saps the life out of the people you love painfully and slowly and it’s so hard to watch, especially when you’re a child and it’s your mother that you’re watching fade away. You are very strong
Can we just appreciate how hauntingly beautiful the title "everywhere at the end of time." It really is a thesis of the whole album.
The ending with the Angelic Arias makes me think it's more than just "the person is dying". I think about "terminal lucidity" which happens occasionally with Dementia patients.
Essentially, in their last moments of life suddenly become lucid once again. They are immediately aware of the condition of their body, the things they've done, the things done to them, and they are coherent for but a few moments before death.
This is both peaceful and horrifying. It may be bittersweet to finally be able to share your last moments with those around you, hopefully friends and family and to be able to know who and what they are, but it is also horrifying because you are made aware of the ordeal you've gone through before it finally takes you which I believe is the silence at the end.
.... Mostly horrifying... I imagine so many come to that lucidity... Only to realise there alone...
That made me tear up a bit just thinking about...
This is real, happened to my grandfather right when he was about to die, he looked at my mother like he knew exactly who she was and his situation
It’s not much different than terminally ill patients. They usually have a really good day or two right before death…
DMT is a helluva drug. Once humans understand "why" we produce it in effect-inducing quantities during birth and death - humanity will be ready to transcend the human condition. :)
How do they know it's silence? The CIA released a report that might suggest otherwise
"there is another 4 hours of this" is one of the more distressing things I've heard.
Cause its just a chore and not worth it. Its just noise that everyone keeps lying about
@@chrismanaloe3507 you seem to be a lil bit obsessed with proving that, hope u find something more productive to do
School
@@vivishii_ yes. I take every chance i get to call these trend jumpers clowns with no personality
@@chrismanaloe3507 damn, I was scrolling through the comments and couldn't find a single person who asked. so weird.
I lost my grandmother to Alzheimer's years ago, and I'd hoped that listening to this album would give me some insight into what she'd felt as she was dealing with the disease. To say I got my wish is a gross understatement. I sobbed from stage two onwards.
I hope my grandmother, and everyone who's passed from this horror story of a disease, is resting easy.
(Edit: Thank you for all the kind words and support, it means a lot to me!
To those of you who have family members currently going through this storm, the best advice I can give is to have patience and find a good support system. I know it's going to be hard, you're going to get tired of answering the same questions, getting the same reactions. Thankfully, if you can't find an in-person support group in your area, there's a lot of online support groups to help caregivers and family members, because Alzheimer's and Dementia will make you feel like you're unable to be of any use, even when that's not the case. Take care of yourselves, everyone. Even if it doesn't seem so, it's going to be okay.)
so sorry for your loss ❤️
Alzheimers is an absolutely terrifying disease, I lost one of my grandmothers to it aswell and it was hard enough with her. She snapped on me one day for no reason when I was younger and didn't fully understand it. I'm so worried my mother and sister will get it aswell. I genuinely do not want to go through that again. I feel for you
My grandfather is currently going through this. I'm so sorry for your loss, and I hope you were surrounded by the support that's so vital to getting through the hardest parts of grief ❤️
My thoughts and empathy are with you.
@UC70LsJiLbkXSyu2Z00FRmUA do you understand how wrong you are? Alzheimers is a specific brain disease that account for around 70% of all dementia cases. Dementia is a blanket term for several memory or other higher brain function skills deteriorating.
I tried sleeping to this music and ended up getting sleep paralysis with the static playing, it was already terrifying but the music filled me with more anxiety
Towards the last two stages it sounds like brown noise which I fall asleep to often🧍♂️
So weird, so did I - except maybe had nightmares. I woke up super confused & the feeling lasted for a couple of days after.
bro you deserve it if you think it gonna help you sleep 💀
@@erosmoreno-garza1795 Ikr it’s really relaxing to listen to
I tried to listen to this all the way through like 3 times now and every time I’ve gotten 2 hours through and I was passed out like a baby, best sleep I’ve ever had 😭😭 idk why I think it’s bc the concept of dementia and Alzheimers doesn’t scare me, it just makes me sad and I sleep super well when I’m sad
I lost my Mom 2 months ago. She was going through dementia before she died. She would call me in the middle of the night from the nursing home in utter terror that she did not know where she was. It was devastatingly heartbreaking. Can't type this without tears. She would ask me were her sister was (who died 20 years ago), ask me what I wanted from the Chinese restaurant that she was about to order from, and so on. I no idea how hard it was going to be to experience it.
I'm so sorry for your loss. Your comment touched me. I hope you are doing okay.
My mom dealt with my grandma while she had dementia and worked in the same building as her. She said that now that grandma is gone, she has no real tie to the building anymore. Though she's dealt with elders with dementia, as I have as well. I remember being confused as a kid as to why the nice lady on the couch never remembered my name.
Sorry for your loss. Hope everything is well for you, Dave. Always available to chat if you ever need someone to talk to.
I'm so sorry for your loss...
I know it's been a few months since you made this post, and I hope youve found some peace now with it. It's such a heartbreaking thing....
i’m so sorry for your loss
I've watched a few documentaries of dementia, I watched a guy break down and sob openly in front of the camera because his mother couldn't recognize him anymore. She knew her son in photographs as a child but didn't know who he was as an adult sitting next to her, my heart broke for him.
I could not imagine that makes me want to throw up I love my dad so much
The title of the first song of Stage 6 is possibly one of the most terrifying things I’ve ever heard. “A Confusion So Thick You Forget Forgetting”
It’s always made me extremely sad, terrified, and thoughtful about that stage
This is what an ego death is like. Ego death is basically controlled dementia
Well, sorta controlled.
@@zeallust8542 The ego death experience isn’t like dementia. Not to be rude but it sounds like you plucked that out of thin air.
@@PRTZN i gotta ask, have you experienced ego death?
@@joisanidiot8288 what is that?
The very last part of stage six, when that "voice" started singing along with the music made my skin crawl and I broke down. It's so close to something I know, but so far gone to even know what it is supposed to be. This work did it's job very well at portraying the horrors of this disease, and is honestly a masterpiece of art.
I understand the title of the last section "Place in this world fades away" to be literal, I think it's meant to be death. Or maybe it's related to what happens when people claim to see or hear God or angels when they die or nearly die. What sounds like church organs, an angelic voice singing. It's comforting but also terrifying when you know it means you're near the end.
@@loganjonesTTMS The last 5 minutes of the "Place in this world fades away" is supposed to represent "terminal lucidity."
Terminal lucidity is basically the last moment of lucidity a dementia patient experiences before they pass away shortly.
The silence signifies they have passed away.
"Post-awareness stages"
Everything about that phrase is horrifying...
Yeah I fucking hate it... Didn't know words could be so horrifying
Same with "Advanced Plaque Entanglements"
@@joonibonsaii8462 actually i dont get what that means.
@@Gardengap it's a song in stage 5
@@hyperx72 I know but what are plaque entanglements is what I was trying to say. Now I’ve learnt that plaque is the buildup in the brain that causes dementia and entanglements is something else rather similar.
Interesting fact: dementia is generally seen as the general term for severe memory loss and Alzheimer’s is the more specified diagnosis
Good to know
Dementia is the symptom of memory loss. You can also have dementia even if you don’t have Alzheimer’s
@@squaresquids well yes, but again, dementia is the general term for a loss in memory, cognition and reasoning. Yes you can have dementia without developing Alzheimer’s, however dementia is just the general psychological term
Yeah, pretty much. But it’s not THE specified diagnosis, it’s one of many. My grandma has dementia that’s not caused by alzheimer’s. There’s multiple causes for dementia, alzheimer’s is just one possible cause.
Alzheimer’s disease cannot officially be diagnosed until an autopsy after a person has died.
It’s wild that the chances are likely that many people who’ve watched this will one day go through this and try to remember where they felt this way before but can’t remember what a RUclips video is
STOPPPP
First of all, yes, second of all, why would you do this
This iiiissssss terrifying 🕳🚶🏻
Thanks a lot man
STOP THAT
Yeah, I'd be 'checking myself out' if I was ever told this was going to happen to me.
Two of the scariest things I can imagine are, dementia, having what makes you what you are slowly erode away into nothingness, and being aware while comatose, feeling every pain, hearing everything around you, while being trapped in an unresponsive body, with no way to communicate.
The fact that you have condensed this 7-hour recording to 49 minutes is nothing short of a miracle.
Bravo.
Fun fact: The first song in the first part of the album “Just a Burning Memory” is actually based on a song that is from 1931. The creator of the song was a man named Al Bowlly, the song’s name is Heartaches.
fun facts al bowlly also sang the song that was used as the main theme for The Shining, “Midnight, and the Stars and You.”
Leyland James Kirby was extremely fascinated with creepy ballroom music after watching the shining, prompting him to eventually create an album called "selected memories from the haunted ballroom". He would experiment more with the format and create everywhere at the end of time
Thanks Teddy
@@hubbleenjoyer800 it’s called selected memories from the haunted ballroom
@@Riddickisawesome101 ah right, thx for correcting me
The anecdote about the woman who forgot her siblings died reminded me - For those who are dealing with a loved one with dementia, remember improv rules to make things easier for both of you: "Yes and", accept the reality given to you and build on it. There's a point where it's not even fair to tell them no and correct them- it can be extraordinarily upsetting. Sometimes you need to engage imagination rather than memory. This can be a painful process but it's something that allows you to connect on their terms
I’ve sadly had this happen with my great great grandma over the phone. Sometimes she’ll ask a question, then a couple minutes later ask the same question & I just don’t have the heart to tell her she already asked me
i work with a lot of senior citizens, and folks with dementia. this is the best advice. This, and also trying to make it as positive as possible.
Someone was saying the best thing to do if they insist on something, to agknolage there feelings and direct them to something thats positive.
My nan is as the stage now where she's getting very confused all the time. So if she gets upset you can just sometimes redirect her...
Imagine what it would be like to experience the death of a loved one as new information, over and over and over again.
I used to work in a dementia unit. One lady used to wander the corridors asking for her grandma. Her mother died in childbirth so she was raised by her father and grandma. She had memories of her adult life and would talk often about it, but it always came back to her wondering where her grandma was. She was confused that her grandma would leave her alone since her dad was out at work. It was heartbreaking. We used to ask her where she thought her grandma has gone and she would always say shopping if it was light and to the bingo if it was dark. So that's what we all played along with. We were looking after her whilst her grandma was shopping or at bingo. She would be terrified to go to bed alone, her grandma used to sit and knit in her room when she was a child. So I used to get my notes (back in the days of paper record keeping) and take them to her room when I put her to bed. I'd sit there until she fell asleep.
We had a very inexperienced carer tell her once that her grandma was long dead and that she was an old lady now. She was devastated. She knew she was old, she recognised herself in the mirror and knew she'd had a full adult life but she was also simultaneously a child whose grandma was still her primary caregiver.
I used to feel bad that we were lying to the residents when we went along with things that were not true or real but seeing the devastation she experienced at being told her grandma was dead just confirmed to me that we were doing the right thing. It's very real to them in that moment.
Stage 5 sounds similar to auditory hallucinations i get if I forget to take my meds. It's maddening to listen to when you can't just turn it off.
What are you diagnosed with?
People with dementia can have visual and auditory hallucinations so I mean...
I'm an assistant in nursing and I've pretended to scare off peeping toms at 3am many times
This video has produced a terrible feeling deep within my gut. What a powerful piece of art.
I got the same feeling ...I'm terrified
It's called anticipation ☺️
I fought so hard to get through it..I don’t think I could’ve done it without him talking. It made me feel so sick and anxious.
Getting diagnosed with dementia is one of my greatest fears, I can't bear to even think about a loved one passing this way, let alone myself & what my friends/family would experience. The idea of slowly wasting away & deteriorating give me mad anxiety
It terrifies me so much since due to my ADHD, I already have memory problems, and apparently having ADHD can also corralate to having a higher chance of developing dementia later in life so you know, that's cool 😭
Sadly this is a thing we can't do anything about, well currently. But let's work on things that we can control.
i'm in the same situation, i have adhd and i am terrified of dementia :( i'm blessed to not have had a relative that i knew go through dementia but my grandparents on my dads side did. it sounds dark but i genuinely hope i can die peacefully without having to experience this
I probably have ADHD and dementia runs in my family. I just hope if I develop it I have the resources to do Dr. Assisted suicide, even if that means going to another country as I don't want to put my loved ones through that. Also I don't think I want to experience it period, let alone have my loved ones experience with me.
One of the reasons I want Dr. Assisted suicide is that no one should be forced to go through horrifying terminal illnesses unless they choose too. You shouldn't be forced to continue living by the law or have to put your loved ones at risk (some places they can get charged for not stopping you basically) and choose a painful death just because of the law. You should be able to choose choose peaceful death surrounded by your loved ones if that's what you want. The fact we can choose to put down animals out of mercy as their suffering and quality of life is so bad but we aren't allowed to choose when our suffering is too great and quality of life is too low to continue is completely absurd to me honestly. Like we should have that option available if that's what we desire
Athazagoraphobia
NOOOOOOOOO I’m high functioning adhd I’m so fucked
i couldn’t imagine listening to that for 6 hours, let alone having the disease for life. a great piece of art work.
I'd imagine that dementia must feel like walking through a chinese city like Nintendo; passing the same guy 80 billion times on some matrix shit
@Butt Whole sorry, North Career city of Nintendo
@Butt Whole That's not racist bruh, it's just dumb
@Butt Whole uneducated does not always equal racism.
There exists a real day in your future where you will defintiely die.
Either it will come much earlier than you expect, or you will probably be confronted with some or all of the symptoms of this disease
When I listened to it the parts that really messed me up were the silences. The idea of not just thoughts being gone but the concept of knowing being gone--it's terrifying to think about.
The singing at the end also made me sad somewhere deep in my mind. I was crying but I don't know, I've only cried like that at really extreme moments in my life.
13:50 “I can tell you it’s a flower pot but I can’t tell you what it’s made of” was bone chilling. So often it’s these exact sentences you here come from your loved ones mouth before you begin to realize something is wrong. I can tell this will be a journey to watch this whole video
Edit: seeing wendigoon grasping for any form of order and happiness while diving into the comments was also very telling. I can imagine that’s how it feels. Searching every day for something that makes sence and you just really can hardly find any moments that are complete. It also goes hand in hand with how you say “it’s like it’s trying to make music but there isn’t any” around 35:50
Stage 5 art looks *almost* like a woman dancing on stairs or a lady in a ball gown going up stairs. Compared to stage 6 it’s almost like the very last thing they remember before it goes full dark is some moment that they know should be beautiful but can’t remember why.
i don’t know if anyone has said this, but the crackling might represent neurons in the brain shutting down and dying. from what i remember it was just a theory and was never confirmed but i still love that idea
ye he reads a comment on the video that elaborates on the plaque build up in the brain and how it correlates to plaque building up on records
The singer of the original song, Al Bowlly, passed in April of 1941 during the Blitz. The Blitz ended 1 month later. His last sang song was "When That Man Is Dead and Gone" which was a satirical song about Hitler.
I can't imagine listening to the full piece. This condensed version was hard enough to get through for me. And what an apt name The Caretaker is.
I was my uncle's caretaker for almost seven years from May 2014 until this past March. It was so difficult to see my favorite relative become just a husk. I loved him... and yet, I hated him. I couldn't even escape in my sleep. He was always a part of my dreams. In March it was determined that he needed professional care for the remainder of his life and was moved to a hospital. He passed away in June.
I haven't told anyone this, but I stopped dreaming about him when he was in the hospital. About a month after he passed. I dreamt about him again. It was the man from my childhood. We didn't speak. We just hugged and cried. Like he understood that I did my best and that it was okay when I got frustrated. I haven't dreamt about him since. As I'm typing this, this is the first time I've cried about losing him.
Rest in peace, Uncle Francis; 1951-2021.
I am so so sorry for your loss 🖤🖤
Wow, what a powerful comment, thank you for sharing this and I’m very sorry for your loss, I hope you’re doing okay now
The strength you have to keep going and supporting him through this awful, awful disease is immense. I don't know the mistakes you made outside of getting angry, but that fact could never be devalued.
I wish we had more people like you.
The full experience was rough for me, I was definitely scared, I couldn't get the music out of my head. If it's hard to get through the condensed, don't do the entire thing, for sensitive folk and even damaged folk, it's jaw dropping how easily it broke me down.
I am sorry for your loss. It takes a lot of strength to share something like this. I'm praying for you.
One of his moments of bliss during the experience was finding a video of Mutahar. Just perfect.
i slept in minecraft for 6 months
Fun story that just made me lose hope in humanity:
My little brother was playing this down the Vr mic, when I heard it I instantly knew what it was so I asked "do you know what that is you're listening to?
He replied with "Yeah, its called (scrolls on screen) It's Just A Burning Memory" I asked "Do you actually know what that is though?" he rolled his eyes as he said "Well yeah, its Gorilla Tag ghost music"
I just don't have any words tbh, such a beautiful and powerful piece of art turned into some spoopy ARG crap for Gorilla Tag
Wtfffff😮
Yea kids ruin the best things on the internet
@@Spoinkus_thy_doinkus Yea internet ruins the best things for kids, and are likely made by kids.
wtf did he make it up or did some tiktok trend happen or something and some 15 yr old made some gorilla tag creepypasta using EATEOT music
@@BatuhanDerethe song was trending on tik tok because people were using it as a creepy audio :/
It's funny how towards the end you hear music coming back- I used to work mostly in a dementia unit when I was younger and around a lot of late stage residents. The normal is the post-awareness for a lot of people at that stage, but once in a while I could get a single moment of clarity, or semi clarity, and acknowledgment from some of them when interacting. That's the most impactful part of this for me, because I've witnessed it. It's a tiny, tiny, tiny crack of eye contact and gesture.
It’s even sad to see them have clarity. My great grandmother had altzheimers. Christmas Eve, 2016 the whole family got together. It was the last day that she had any clarity before she passed away in April 2017.
Been a fan of The Caretaker for many years now, since around when part 1 of this saga of albums came out, it’s great to see it getting more attention over time. The last 5-10 minutes of part 6 is one of the most emotionally crushing things I’ve ever heard
On my first listening, last year, hearing the silence I felt horrible but the minute the choir picked up I broke down into tears, I was a mess
@@SpectreMkTwo
Exactly. Same. 💔💔
Especially cos Dementia & Alzheimer's killed both my mums parents.
My grama died in my arms on Xmas & I'm still not ok. Wendigoon is awesome
@@AmberAmber it's frightening I lost aunts and uncles on my grandmother's side to the same conditions....I hope they find a cure for the conditions someday
I only discovered it a few years ago, and only finally listened to it a day or 2 ago. And im so glad its getting credit.
@@snowqueen_8958 xoxo huge hugs xoxo
Damn im not even listening to the whole thing here and it's got me crying... My mother didn't have dementia but she had brain cancer and her decent into basically losing all faculties was so fast. At the time I was 13 I remember sitting next to her in her hospital bed and we said we loved each other for the last time, after that night she started forgetting everything... Damn this just hit me different than I ever expected a video from you would. Much love to everyone who is sadly living with this disease and to their families. I can't imagine.
i get you friend. im so sorry for your loss. i was 18 when my mom passed from cancer and im 20 now, and i was with her until the end, i was extremely lucky to be able to tell her i love her as a last thing, and then for her there was nothing, sedated with morphine.
@@skylinesandturnstiles9595 thanks so much, and I'm glad that you were able to be with her. I'm also sorry for your loss. Cancer is a b*tch, 😔 tbh any terminal illness that takes away the people we hold dear. I can only hope that wherever our now gone loved ones are in death is somewhere without pain and that they are proud of us. ❤️
@@sammgemm the scary thing though is that cancer technically isn't a disease it's the body begining to malfunction and self destruct it isn't caused by anything other than our body fucking in dividing something microscopically small something it does every day. live life to the fullest people.
My condolences for your loss.
when i was around 8 ( like 2002 or so) my brother and i happened to be " fostered" by our grandparents and not long after we got there my grandma started acting strange. she was a hard working woman, i dont remember her job but she never missed a day. we used to wait for her to come home everyday,playing in trees and such as kids do, and run up to her happy to see her as soon as she stopped. like i said though she started acting strange. she could still go to work and do tasks in the beginning but very quickly the change in her function daily was apparent. we were scared and sad for her but grandpa was mainly an angry man and so he would quickly start to rage at her over her being different. which only added to all of it. he was so angry that he forced her to see a doctor. we were thinking something scary BUT different. NOT cancer! welp, turns out she was stage 4 with a rare form of brain cancer. she went from a hard working, do it all type, woman to her mind and body completely giving up on her and before she could grasp the situation she ended up in the livingroom in a hospital bed unable to do anything for herself. she was so weak at times she couldnt even reply to us when we sat with her afterschool. we would make her cards and all she could do was give us a small smile. utterly heartbreaking. at the end, she didnt know who any of us were or even her own name. her body lived only because a machine in the livingroom kept her breathing. shed open her eyes here and there at our voices but at the end it was sad to even look her way because of how often her eyes would roll into the back of her head. and it was a feeling of such helplessness, not being able to help her in any way. grandpa didnt have much rage to express by the time she got into the hospital bed. he was never the type to show anything he felt if it wasnt rage or happy laughing..but i could feel the sorrow he felt mixed with my own. i knew he had long since realized she didnt do as she did, in the beginning, on purpose.
a few times our entire family had to rush to the hospital in fear she was dying right then. she didnt. she ended up one sunny day just stopped breathing. just like that. in the blink of an eye. with my brother and i and 2 of our cousins ( all same age 7/8) sitting making her cards at the kitchen table less than 12 feet away. he was standing with her when it happened, we didnt actually notice right away as we were enjoying our cards efforts and talking quietly. the machine stopped and suddenly we hear grandpa saying to us " guys....come here....shes gone.." and we ran over in a panic, as kids do, to both of them to see what he meant. and when we looked up at his face he just looked down at us with so much sadness etched all over his face and in his eyes and told us " shes gone. she just stopped breathing".
she was the first death us kids would have to live through. but NOT the last person ive lost to cancer. ive lost many people to various cancers, the latest being march 25th 2020. my stepgrandma by marriage, to that very same grandpa.
though to me she was just my grandma. she wasnt always the person she should have been around me ( well before she got sick) BUT we loved each other so dearly. she actually was diagnosed and died from the SAME cancer that took my first grandmas life. BOTH were extremely young, well before 62.
i dont know which is worse but i feel your pain hun. listening to this with him hurt. probably more than it should have.
but i dont think i regret it.
sometimes, even in the most seemingly random times, we are just supposed to feel how we feel.
The first time I listened to this around stage 3 I just started crying I don’t know why, but there is something truly primal about the fear of forgetting everything. Like forgetting those you love, the memories you’ve made with them, the experiences you’ve had with them and many other things it’s truly terrifying
The comment section on everywhere at the end of time is a gold mine. Filled with highly insightful comments. The video is one of the most unnerving videos on RUclips. It’s a whole new level of creepy, for me that is. It’s horrifying and genius.
I read the comments while I listened to the album back in June 2020. I even left my own comment and experiences, it's beautiful and terrifying all at once
When the series wasn't mainstream the comments were some of the best on youtube
Nowadays the entire thing is kids memeing dementia and comparing this album to their sexuality. It's pretty horrible.
@@BulkBogan1920 the people memeing this definitely didn't listen to any of the songs other than the first one
Wilbur Soot - Your City gave me asthma is another goldmine for comments
Yes, i can feel that creepy, even from the first track. It's so another level of creepy, I can't stand it this time...
Those first 5 seconds immediately set the tone for what the album is going to be like
My grandma is suffering thru dementia right now, & I can't make myself listen to the whole thing. Its heartbreaking just watching it thru her eyes. Thankfully at 90 she still knows me & calls me "that girl of ours" whenever she's talking about me which she has done my whole life ❤️ more people need to be aware of how scary this is for people going thru it. Thank you for doing this
Oh love, I'm in the same boat. My nan is 94 and is rapidly declining currently. She kept asking me to visit again but it was clear she had no concept of our relationship.
My head feels so fuzzy and I feel on the edge of a dissociation episode right now, just from the little snippets I heard between him talking. Idk how you managed through 6 whole hours of that, I’d probably be nonverbal and possibly in a panic attack (I’m high-functioning autistic and have adhd, it isn’t common I go nonverbal but I can tell that this for hours would do that). Good on you man.
omg i relate to this so well, i was dissociating so hard and i definitely would have had a panic attack if i listend to the full 6 hours
Isn’t dissociation a blast. Got to love our quirky little brains
Listening to this for the first time sent me into a depressive spiral that lasted months. It's not the most complex piece of music, or the most beautiful, but it's the single most harrowing example of audiological art that I've heard in my entire life. Watching my grandma decline through the stages of dementia was the single hardest thing I've ever gone through. Anyone who's gone through anything like it knows how absolutely worthless and powerless you feel, watching someone's mind waste away. Fuck, man.
the best way to sum dementia up isnt forgetfulness, its like unlearning, because with forgetting, you typically remember, but with unlearning, you have to re-familiarize yourself with even the simplest of tasks
Man, I remember coming across this album some time last year thinking I'd found a nice chill lo-fi album to vibe to whilst gaming. Shortly after I realised I was listening to something a little uncanny for my ears. Then all these people began talking about how it's an homage to losing yourself to alzheimer's.
that would not have been a fun experience for you
My wife’s grandma died from dementia in February of this year and I’ve listened to the whole 6-part series twice before she passed away. I need to listen to it again, because watching her go through it and seeing all of the stages as they went by was…horrifying. Before she was in hospice, she stayed at the local hospital. I’d say she was late stage 5 to early stage 6 and our interaction was awful in such a tormenting but loving way. When my brother in law and my wife came up to say hi, she was all giddy, kinda forgot who they were, but when reminded she was excited and wanted them to join her in the room next door “because it had tables of liquor for a party they were throwing tomorrow.” But when I came up to say hi, she knew exactly who i was, grabbed my arm harder than she ever had before and pulled me in close, started crying, and said, “You need to promise me that you’re gonna take care of that girl and those babies. They mean the world to me and they’ve been through a lot. You’re all they have left. I’m not gonna be here much longer, so you need to hold them up for me, okay?” For someone battling with dementia to snap back to reality by remembering someone from their life that they met when they started to develop the disease…it’s heartbreaking and mind bending. She was completely self aware of the situation once I came and said hi. So yeah, this 6-part series means a lot to me. I didn’t get to know that woman very long, but I’m proud to have known who she was.
Sorry Wendigoon, I couldn't go thru all of it. My biggest fear in life is getting old and having dementia, mostly because of my great-grandmother situation. My anxiety was to the roof, but thank you for your amazing work. Keep it up!
Some dementia is genetic but some is environmental - a toxin called bmaa. If she was exposed to that and you haven't been you are probably fine. I think there are tests as reference genetic susceptibility.
@@rosiehawtrey oh, I heard of that, but it's a genetic thing - she's not the only one in my family who had some type of dementia... Unfortunatelly, both in my mom and dad side. I heard about these tests, but in my country they are hella expensive. :c
Quitter
its okay, i made it halfway before i just started crying and crying. idk how the hell anyone can sit for the whole thing
@@JayZed2850 have some fucking tact.
Imagine if he forgot to start the recording
This has happened before lol
Athazagoraphobia
It's kind of like writing a final paper and then your computer gets fried from a storm (happened to me back in the day when a hard ethernet line was still a thing).
Pain...
My brother suffered a stroke when i was little and at that moment a part of him died. Everyone in my community knows what he was like before, how he was great and friendly and active. All i remember is him picking fights with everyone and yelling. Because of that stroke his memory became terrible. I dont think he had dementia or alzheimer's but all the talk of memory loss has me missing him because he'd always repeat what he just said. Every time i went to see him when he lived in a caretaker's home.. it fucking broke my heart. He was so excited and he thought we'd bring him home. He'd always ask how everyone is. And when we left he'd look so heartbroken. He passed away two years ago and i still cry when i remember him. I miss him so much. I hope he's in peace now
I'm so sorry. My uncle had two strokes, and my uncle is gone. His body remains, but it's just a shell. I don't know who he is anymore.
How can you mourn for a person who died, yet still walks the earth? Everyone expects you to be happy, but you just can't.
They are all happy. They are all resting now. No need to worry about them because we must carry on with our lives to be ready to meet them. Live on and make yourself proud of the life you led when you must face your brothers or uncles or grandmothers.
No, he is dead. There is no peace or agony. Just nothing. Without his family.
I think the length of the album really symbolizes how dreadful going through dementia might be and the fact that wendigoon listened to it nonstop probably made the experience even more genuine. Dementia patients go through this for a long part of their life and probably are constantly wishing for it to just end. The fact that we can just finish the song and move on with our lives but patients don’t ever have an ending moment without it is horrifying.