Fear of Forgetting 

"What an abyss of uncertainty whenever the mind feels that some part of it has strayed beyond its own borders; when it, the seeker, is at once the dark region through which it must go seeking." - Marcel Proust Check out my latest upload, ‘Nostalgia Isn’t What It Used To Be:’ ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-hbWJYuIkN_Y.html Support Me: www.patreon.com/ClarkElieson Insta: instagram.com/clarkelieson/

"There's nothing sadder than mourning a person who's still alive."

God, that story of the doctor who found his own chart and reading he had alzheimers is like a twilight zone episode

This went from educational to straight up existential

I just turned 74. Last week at the grocery store I forgot how to use my credit card. I stood looking at it and wondering what to do. Thankfully a ckerk who knows me saw what was heppening and came and rescued me. I know its comming, My Mother suffered from Dementia. She went back to her childhood, and I left here there. She was happy and so was I. Now it is my turn and I hope those around me let me be. It really is what is needed from you.

The most horrifying thing about the self portraits is that he lived for five years after he could barely even understand the concept of a head.

Imagine being a doctor and you flipping through your own medical history and then seeing "Alzheimer's" it's a nightmare

“and then they forget how to breathe” This sent chills down my spine

I’m a registered nurse working at a nursing home, Alzheimer’s and LBD are an every day surrounding element there. I see the fear and rage in my residents bubble up all the time, followed by those crushing waves of self-awareness and shame. I watch as their speech slowly deteriorates from full sentences, to extreme afasia, to just small sounds, and then silence. I watch as they slowly forget how to walk. I’ve held a hundred year old’s hand at night as they cried, asking for their mommy. I find myself wondering if I’m a hypocrite, sometimes. I adore my patients, love caring for them, it’s my entire world. I’m so fond of them.. while being terrified of becoming them one day. Amazing video. Gave me a lot to think about. Thank you for taking the time to make this.

Terminal lucidity is so mind boggling. I've seen a case of an elderly woman bedridden for a while. She was expected to pass away that day or that night so doctors had the whole family in the room at the time. She had a blank stare towards the ceiling. She wouldn't respond to much but the occasional "Huh?" As family members were talking to her holding her hand, she suddenly snapped out of that mindless state. She began to look around the room at every family member surrounding her. She began pointing with a slight smile as she said the names of her family members one by one. She passed away a couple hours after.

As a kid, i lost my great grandma to dementia. I was so young that all i can remember are the last few stages, the loss of self. I remember bringing her flowers to the hospital with my grandma. At that point she couldn't say a word, just slurred mumbling. She leaned in for a hug while mumbling something and i take that it meant that even if she didn't recognize us still understood the situation. It was the last time i saw her. All i can say is that dementia, losing yourself, your memories, it getting to the point where you don't know if you're still alive makes it a fate worse than death.

Glad I'm not alone in having Alzheimer's/Dementia be a biggest fear. To know that one day I might forget my entire life, my family, and myself, and have absolutely no way to stop it, is utterly terrifying. In fact, I find dementia scarier than death itself. At least death generally happens quickly…dementia is like rotting while still alive.

i had trauma as a child so as i’ve grown i’ve forgotten a lot of my childhood. i only have a few distinct memories from before 16. my dad was telling me how he used to video tape and take pictures of me and my sister nearly every day. i didn’t believe him because i felt like i’d remember being in front of a camera all the time but.. he showed them to me… a version of me i used to be but have no recollection of… it was weird and very saddening for me. forgetting is scary

As a person who’s grandma is in late stage frontal-temporal dementia, I thank you so much for this video. It’s a subject I try not to think about too much, but it always surfaces back up somehow.

"And then they forget how to breathe." No words can describe how hard this hit me after all the talk about what our memories mean, what our conciousness is, and how dementia destroys it. Forgetting places, times names, loved ones, even forgetting emotions, reflexes, language And then forgetting how to breathe...

i consume horror movies like candy, and can confidently say that this video is one of the most unsettling pieces of media i have ever EVER taken in. well done.

I know you are never gonna see this message, but I just need to share somewhere… I was 30:20 in the video when my mom called and told me that my grandma was going to be unplugged tonight… she died from dementia. I just think that was crazy and I definitely won’t ever forget this video… much love and peace

I love how he didn't elaborate on "They forget how to breath". He didn't explained why its terrible because it couldn't be explained, no words or images can describe this utter terror, it is beyond explainations at this point.

there's no fate worse than being alive to experience your own death.

20:59 There is something so utterly terrifying about that. He could barely remember how to use a pencil, or what his own face looked like, and yet he “lived” for several years after that. It fills me with a dread beyond words. To even call it “living” feels like a betrayal on life itself.

This video hits so different now that I've been diagnosed with early onset alzheimers😅 but though my life will be short I'm still going to make the best of it. It's what my mother would have wanted❤

I'm speechless. I used to think dementia just made you forget things, but now, I'm even more terrified of it..

I work in geriatrics, specifically memory care. The best way I've been able to explain dementia to families is this; imagine youre put in a random area with no memory. You use clues to piece things together. "Where am I? ...hm this tile looks familiar. OH! It looks like hospital tile. Oh right my kid had that surgery....oh yeah her tonsil removal. Its 2007 then and she's uum 5." Meanwhile its 2022 and her child is actually in her 30's. With research we've learned that "reality grounding" does NOT work. Why? Just observe where you are right now. Youre reading a comment on youtube, just chilling, and then suddenly someone begins to grab your shoulder and yell "Grandpa! Cmon! We need to get going!" Youre first instict will be "wtf? who tf are you? grandpa???" You'll be confused. Agitated that this person keeps insisting they know you. No matter how much they yell they wont convince you that youre their grandpa because that is not YOUR reality. I recently had a 102 year old patient get a visit from her daughter. Her daughter came by to feed her momma. At this point of age, she was on a puree diet and was a feeder. However when her daughter began to try to feed her mom, she goes "no! no stop. you should be feeding my daughter first" The nurse then asked "Oh! How old is your daughter?" and the 102 year old woman answers "...she's two...two" So here this woman was telling her 60 year old daughter that she was two because when she saw the puree and heard feeding she thought "oh! i must be feeding my baby!"

I’ve been having a lot of issues lately, and my doctor told me there’s a slim chance I’m in the very early stages of Alzheimer’s. I’m only 21 years old, and just the idea that it’s possible (no matter how unlikely) is scarier than I can ever say. This video was terrifying to watch, but… thank you for going into such detail on the topic.

My God.... This just randomly popped up in my recommended and it was like listening to an hour-long poem. It was so thought-provoking and so deep and so well researched. Round of applause.

I worked at a memory care facility for over a couple of years. I was put through a simulation that blurred my vision, muffled my hearing and had gloves put on that make my hands feel ruff. I was given multiple tasks to do in this condition and I walked out crying. It really helped me to better care for the residents and to be more understanding of their situation.

The scariest part about dementia to me isn’t getting it for myself, I’m okay with that. I’ve made peace with the possibility. What I truly despise about it more than anything is the thought of my loved ones getting it, and the knowledge that I cannot stop it.

The comparison of ADHD to Alzheimer's is a very good one. Because in ADHD it manifests as knowing you have to do something but getting entirely distracted and not remembering. Like even in games I will go somewhere that I needed to go and have completely forgot why I even came there in the first place and have to stop and retrace my steps. But Alzheimer's is a different beast, the caretaker is a project I've known about but steered clear of because just bits I've experienced instill a depression in me. The clock drawing test though, that actually broke my heart. Like the self portrait is just as bad in the same way but the clock drawing one is such a simple thing and you can already see the effects so plainly. Alzheimer's is one of those things I've just kinda tried to avoid thinking about, I've always said if I start forgetting close family members I would rather be killed than go through and put my family through that heartache. When my great grandma stopped recognizing me I couldn't bear to see her deteriorate. The next time I saw her was at her funeral, and she didn't even look like the woman I'd grown up with. I regret not being there more for her, not being able to deal with the pain to be able to make a few more memories with her there at the end.

this video and concept has scared me to the point of crying while alone in my bed in the dark. I don't have dementia and I am young but my thoughts still scatter sometimes and I hope I never get dementia when I am older.

I haven't cried in ages. my newest biggest fear is losing my self and forgetting everything while not knowing its happening.

I can’t imagine anything more cruel than going through the horrors of dementia only to die the moment you finally remember yourself Edit: I’m not saying it’s a bad thing to be lucid before you die, because at the very least it’s some nice closure before you pass on, which is better than nothing. I just find it very sad that the moment the clouds finally dissipate and everything starts to make sense again, you don’t get to experience the bliss of remembrance for very long before you ultimately pass away

As a child I feared death. I thought it was the worst thing that could ever happen to someone. Recently I have been invited to play the piano for a rest home, most of the residents unfortunately has Dementia. That one experience single handedly changed my perception on death as a whole. Seeing their hopelessness and struggle with simple everyday tasks is heart breaking, it really painted death as a merciful way out. Now I no longer fear death as continuing to live on forever and ever is a curse, not a blessing.

My grandmother had dementia. She would forget everything. She thought my grandpa had a girlfriend living in the house, people were following her, my ex girlfriend was named Lindsey, she’d call her Reggie from time to time, we thought it was cute. One day she had a stroke and it seemed to set everything off. When she came home she couldn’t even talk, she looked right at me and touched my face, I got up and left the room shortly and cried so hard. And said who is that mom, what really happened. Day by day she was losing her motor functions, she couldn’t even drink water. Two weeks later she fell into a coma and she was on hospice. One day I sat next to her alone, I cried and pleaded with her to stop holding on, that she owed this life nothing, I absolutely spilled the beans and I can see her slowly reacting. Two days later I lost my grandmother. I was 22, I’m now 38 and still can’t hold back tears thinking about her.

Charles M.'s story is kind of the scariest one in my opinion. He was allowed to live in his state of denial that it was just 'age' that he was succumbing to, not Dementia. When he read his own chart it was like reading his own obituary in a way, now that he knew without any doubt that he was going to die by forgetfulness.

My grandmother died from Alzheimer's last month. Oddly enough, when it came to personality changes, she became a lot nicer of a person. Before, she was quite bitter. She had quite an unfortunate personal life, and had to struggle with raising two kids herself (my mother and aunt) after her husband (my grandfather) suddenly passed from a brain aneurysm. She had depression for most of her life, which didn't help either. By her final Christmas, she began thanking people a whole lot more. She smiled more. The saddest part about this, for me, is that I can tell that I was the only one of her grandchildren she recognized. She couldn't remember my name, but her face lit up when we made eye contact. When she parted ways with my siblings that Christmas, she said "Nice to meet you" to both, but not to me (As an aside, she wouldn't have said that if Alzheimer's hadn't impacted her personality). She only recognized my mother as "the woman who drives me to appointments". It was rough. Sorry if this is TMI, and I'm sure nobody will read it, but I felt like sharing, and who's going to stop me? Edit: I've made a slight mistake; she didn't die from Alzheimer's, she died from an infection due to aplastic anemia after a fall. She was, however, in the late stages of Alzheimer's and would've died from it in the span of about a year, had she not have aplastic anemia due to an allergy to one of her medications.

My mother watched her own grandfather die from dementia. What hit me hard is when she told me about one of his last moments of consciousness. He was stomping on the floor trying to get rid of bugs that weren’t there. When all of a sudden, he stopped, look at my mom and said, “I’m not crazy, I’m just old.” Its so heart wrenching to think of him trying to keep it together, keep his dignity.

No sound, No memory, Mind without purpose, Mind without cohesion, Body with no control, Body with no hope. Empty space. Void. Nothing.

My aunt has a form of dementia and it’s terrifying. She was a semi famous writer, and she taught English at a college level. She began to always carry dozens of photos of people she loved. Like her sister, her mom and dad, her niece, her nephews and their children. I’m certain she knew something was up, cause she is the kind of person to fight it as best she can. She still is remembering most things luckily. It’s still terrifying for me and my family though…

Hearing about the poor man who used to be a doctor has to be the most heartbreaking thing I've ever heard of😟😰 Imagine thinking you're still a doctor doing the job that you loved so much only to realize that those days are long over and you're a dementia patient. That really is a fate worse than death.

Dementia runs in my family and unfortunately my grandma had it. The day my mother heard that she passed away was on Christmas eve and she told me that she felt relief that she passed away because the illness was making everyone in the family miserable including my grandmother. Whenever my mom would visit her she wouldn't recognise her and she would talk about my mom to her and she still couldn't figure out that the daughter was talking about was standing right in front of her. She couldn't even remember her name. My uncle is also showing early signs of dementia :/

Being only 20 I’ve always had a memory problem, genetic, and my biggest fear is developing Alzheimer’s or dementia, this video didn’t change that but it was a well made video nonetheless 🙂

as somebody that works with dementia patients, it’s truly heartbreaking seeing somebody decline . it hurts even more when they’re aware of their dementia ):

My Mom says that when she's 80 plus, she'd rather die young than live old with dementia or Alzheimer's and I absolutely agree with her. I'd rather die as well because living with that curse is far worse than death. That's how horrifying having this disease is.

My grandpa had dementia. Eventually it got so bad that he could not move or talk. He knew that he was surrounded with his loved ones though. Seeing him in that state terrified me. I never felt the same way about death again. When I was younger he would always be laughing, and I just thought that he thought everything was just so funny.

"Everywhere at The End of Time" is one of the most amazing niche projects I've ever seen. It's stuck with me for years, and far too few people know about it. Love It's inclusion in this video. Nothing else can tell the story of Dementia in such a way that sticks with you the way it does.

Alzheimer runs in my family. My grandma had it, my father had it and I'm quite convinced that I can also have it. My father fought against it as much as he could but was dragged just like his mother. No mental exercises, controlled food or physical activities have spared him. I saw him losing who he was, forgetting how to speak, how to walk, how to chew. I fear nothing because I saw the worst lost someone can have: being lost inside yourself. This has gave me a sense of living the day and just wanting it to be ok. I was really young when I realised how death was a lovely hug and not the enemy of ours. Our enemy is our sense of forever. We have to live the day and embrace it because we won't live forever nor will remember it. I keep a journal just with my life highlights, where which entry has 2-3 years between span, gathering all I succeed to do so I can remember when I have alzheimer how hard I tried to be happy.

Cherish the moments you have your youth and health because it wont be this way forever. Remember to forgive and don't let the little things overtake what is truly important.

Our memories are what makes us "us", that's why dementia is so scary, we irreversibly lose ourselves

My grandfather was diagnosed with vascular dementia in 2017 , we watched it develop from the beginning. When I was younger I would go to visit my grandparents with my family and each time there would be a little less if him . It’s truly terrifying to watch someone you love disappear like that . He passed away earlier this year due to an injury caused by his dementia , he forgot so much of himself but I will never forget him. The love he had for his family , his animals and his life. He was such a unique man who can’t be described in a comment section. I love you granfee ❤️

My grandmother had Alzheimer’s. I remember at one point she kept asking me for a phone book so she could call her sister. Her sister had been dead for over a decade.

My grandpa has dementia, and I’m very happy he hasn’t forgotten me yet. I brought my saxophone in to play to him, and a couple weeks later, I received a letter from my grandma. She stated, “Your grandpa loved hearing you play your instrument.” I only played marching show music, and practiced my solo audition, which I never ended up making. But I do fear that he may forget me, and that’ll be just alright. It’s natural, and I just have to let it take its course, though I wish it didn’t. I have a drawing I’m making in an art class, and plan to beg my art teacher to keep it, so I can give it to my grandpa. I love him so much, and wish the best for him, as I don’t see him all too often.❤ -I HAVE AN UPDATE!!! I was told I can get it back! Bad news, I won’t get it back until April, because my art was so good, that it’s being put in an art competition. I’ll come back to this in April I guess? I don’t know. Update 2: It’s pretty bad this time around. I went down to my grandpa’s for Easter with my saxophone yet again. I played something from a book, and played some parts from my school’s Winter Winds show. It was all I had memorized. I didn’t find out until the car ride home, but yesterday (as of writing this) was his last day of living. The last thing he heard from my saxophone was the Winds show. We go to Dayton, Ohio for our final competition next week and perform it, and I’ll perform my hardest for him! I found out the artwork is just now being submitted, and the funeral is at the end of the week. It’s impossible for timing, but I’m sure my grandma would love it. I’ll give it to her. Thank you so much for the replies. I love reading them, and it’s so special for me to see some continued support. As of now, my hobbies have so much more meaning to them now, and I can’t wait to show how great I’ll get at them. For my grandpa. -This will most likely be my final update. I went to his funeral about a month and a half ago. I miss him. Dayton went really well though. We placed in the top three, even first in prelims! Things went wrong regarding him though, nothing with the funeral! That went really great. I was venting to a friend of mine. He was the only one who knew, and he went and told it to my best friend like it was nothing. Like it didn’t hurt me. He asked for a commission from the best friend (the best friend declined) and the best friend told me. It sucked, but I cut off all contact from him. So did somebody in my section. I still don’t know if it was the right idea, but he had already showed signs of extreme cliny-ness (not like average clingy but like “Hey wha should my future career be? Hey you’re the only friend I have (blatant lie)”) and it was getting to the point where the red flags overwhelmed the green. My friends keep reassuring me, I’m glad to have some back up. Oh yes, timing is all before the big competition. I think I’m doing better. His life is his own, and I’m kind of glad for cutting off. It was kind of freeing in a sense.

It’s terrifying to believe that you could forget everything that you loved, everything you cherished, and everything that’s important to you. And like you said, you can’t escape it. Dementia is truly terrifying.

Grandpa just died from sepsis and had terminal lucidity the day before. It's crazy, he went from asleep and motionless to alert and aware. His mind was intact until the end, the sepsis never got to his brain. So he was fully aware of what's happening. But this video makes me thankfull that he didn't die from dementia or any other disease, as he simply fell back asleep and died the day I'm writing this. Grief is also weird. Only experienced it a bit when my grandma died last year but I wasn't very close to her. I was very very close to my grandpa so it hits like a truck. There is no way to fully define it until you've experienced it. Thanks for reading lol. Just sad about my grandpa so I decided to express it through a RU-vid comment

My mom wasn't sad when we lost my grandpa. He was 92 when he went, and she said he's really been gone for years. He was essentially a toddler the last time I saw him, just weeks before his end. She's 72 now, and she's more forgetful than she used to be. I'm sure she'll end up like him, and it terrifies me more than anything.

this video is already depressing enough, but 30:45 literally broke me. imagine thinking you're a medical director and seeing your name on a chart, flipping through it you just see "Alzhimers" written right on it. Right then, you realize your life you thought you had was simply in the past, and you cant remember anything of the present.

The part about replacing someone’s reality with one that makes sense to us being cruel is what my mom firmly believed when my grandpa was declining from dementia. He would talk about loved ones that passed away as if they were still around and thought he was 50 years old when he was actually in his 80s. My mom would go along with it and tell me that if our deceased members of our family are still alive in his mind, then let him be happy. He was simply misplaced in time

I grew up with my grandmother. She raised me while my mom and dad were both away for work. We shared a bond like no other, almost as if I were her son. She developed Lung Fibrosis a few years back, then dementia kicked in. I’ve been watching her slowly wilt away to the point that she’s no more recognizable to me. Neither does she remember me. She’s currently admitted in the hospital and the doctor has stated that her time is near. It’s so painful, nobody can prepare you to cope with this.

There's a film called Its Such a Beautiful Day, which in my opinion, is the greatest visual representation for alzheimers. It's about a man named Bill as he struggles with his mental illness, but as he has a dream about his final moments, the film says: "at the climax of all those years of worry, sleepless nights, and denials, Bill finally finds himself staring his death in the face, surrounded by people he no longer recognizes and feels no closer attachment to than the thousands of relatives who'd come before. And as the Sun continues to set, he finally comes to realize the dumb irony in how he had been waiting for this moment his entire life, this stupid awkward moment of death that had invaded and distracted so many days with stress and wasted time"

this made me feel a type of terror i have never felt, it had me shaking, confused and just all types of emotions i could never explain.

Horror movies will never be able to replicate the terror and fear that i experienced when i listened to Everywhere at the end of time. Nothing is as scary as knowing that you can die like this at an older age and Leyland Kirby perfectly showed it in music form.

My grandma passed away on 10 January 2024, it was pneumonia that killed her but she had been suffering from dementia since 2016, and the way her decline was so gradual and then it just collapsed. She was able to do normal things, but her memory started acting fuzzy, she would remember things for a few days and then they were gone, then in 2021 she was psychotic and we had to admit for it. So much in this video reminds of her to the point that it is scary. I remember watching my grandma's decline and to be honest it was horrifying, absolutely horrifying. When this guy mentioned how they call you by names of people they know rather than your own, it hit my like a dagger because my grandma used to call me Omar when she could still speak, for context Omar was her cousin who died of alcholism in the 1970s, but I have often been told that I look very similar to gim, regardless it horrifies me how accurate this video has been when reflect on my grandma's experience with dementia. I'll say one more thing, the dementia was awful that even though it broke me when she passed away, in the end, I was more relieved than anything because finally her suffering had ended, she was and forever will be at peace

This is the single scariest thing I could ever experience, Weather to me or to a loved one. I have ADHD and in the glimpses where I forget things, I get so scared, its hard to explain.

the line “and then they forgot how to breathe” holds a particular weight to me. my grandmother who had dementia died just that way, sometime in the night she just stopped breathing. as a kid it didn’t seem that scary and sounded almost peaceful but now with the reflection of age and greater comprehension it contains a terrifying notion to me. the thought that dementia not only pulls at your consciousness but also your subconsciousness is so scary. it makes me wonder to what extent your subconsciousness is vulnerable, thoughts(similar to the point from the video of lacking a filter with remarks), mannerisms(like preferring your silverware to be ordered a particular way, or licking your finger before turning a page), and finally muscle control(obviously breathing but also blinking). it’s also interesting to add that the forgetfulness of dementia wouldn’t affect the persons ability to have their heart beat. it is a subconscious thing but not something you can control consciously like breathing and blinking, so the act of having control once is the thing that kills you once you lose it. if you read all this, thank you, truly.

My grandpa has dementia, he used to be a business man with 5 kids, standards, motivation, and interests like football. He was diagnosed in 2015 when I was in the 1st grade (I’m in 8th now) but now the majority of my memories of him are with dementia. Now it’s like he has no personality left and is just a person. He isn’t my grandfather anymore - just a being with the jumbled memories he has left of his poor childhood and his kids when they were younger. He lives in an elderly home now and my grandma’s visits him almost every day, but I’d made the mistake of not visiting him and in a way pushing him aside but now because of this and not to mention the drastic changes in my appearance over the last year , he has to be reminded of who I am and I miss the old grandad who would push me on his suitcase at the airport when he flew in to visit. I’m slowly forgetting what he used to be, but now just getting so used to his dementia and not seeing anything different. My grandma went to visit him on her birthday, but he had zero clue and thought it was just a regular day, and she just didn’t tell him, her husband that it was her birthday because she didn’t want him to cry. Now it’s just a matter of time until he’s fully deteriorated and my grandpa is fully gone. I wish he would die another way, a way where he didn’t have to very slowly fade into nothingness, leaving our family to just- watch.

"Eventually the Light does dim, and they forget how to breath" That line tho

For me, personally, Dementia and Alzheimer's disease are some of the most painful diseases to witness. My Grandfather currently has it and his condition is painful to see from what he was only 2-3 years ago. Also, I think it was my great great grandfather who one day was being asked if he remembers people (Due to dementia he couldn't.) and he asked if he'll remember the guy over there. He pointed to a mirror that was facing himself. It broke my great grand mother's heart when he said that.

As a 23 year old with adhd I can strongly relate with this fear as I have lots of short term memory issues since I was little. Long term memory is good though

This is my single greatest fear. Nothing could and never will compare to this.

My grandmother had alzheimers. She got the diagnose back in 2016, she was just 68 at that time. I remember i reacted with denial when i got the news, why did it have to be my grandmother who got that awful, horrible disease. My parents and my uncle moved our grandparents from Tromsø to where we were living to help grandpa, he had complications with his hip and could not walk for long periods. This was back in 2018, i think that it was in mid 2020 when we and grandpa decided to put her in a home. I didnt visit much, sadly. And to this day i regret that very, very much. While Covid was at large we were only allowed to be in her room whilst visiting, and she clearly didnt like being there and i dint want to make her do something she didnt want. She declined rapidly, and all memories i had of my lovely, beautiful grandmother suddenly became lodged in the back of my mind and instead filled with her sick form. Watching grandpa at that time was devestating, he was crushed. They had been together since they were 16 and married since 19. I really, really felt bad for him, my mother and uncle. A few years passed, i gradueted, started working as a bus driver and for work i had to move to northern Norway. In the summer of 2023 i got some news, grandpa had cancer and was to undergo operations. They were successfull, but he never became himself ever again. He didn't have any will to live anymore. He passed away late september 2023, it was absolutly devestating. We had always thought grandma would pass away first, but this crushed my family. I remember breaking down whilst hearing the news, and rushed back home that same week. Whilst i was home i visited my grandma with my family. She had, in some way or another actually understood what had happened to him. That night the nurses told her what had happened, they found her in a corner, curled up and whispering "lost", "missing", "sad". And i remember her stopping on the way back to her room and looking up at the cieling and saying "Can't you just take me with you". When we got to her room she became clear for a minute and gave my mom a hug in the same way she used to do when mum was a child when she neded comfort. Early november 2023 she passed away, and i was not at her deathbed cause of work. That againg is something i deeply regret and might never ever recover from. To everyone wo took their time to reed this, thank you. This is my experience with this awful disease. What i have found out is that this disease runs in the family, my grandmothers mom had it aswell. My deepest fear is that my mum and sisters will get it aswell

I've at this point listened to everywhere at the end of time over 15 times and I still can't stop the uneasy feeling I get during act 3 and onwards, I truly wouldn't wish something so horrific such as Dementia on my worst enemy.

This is genuinely terrifying and makes me scared of my future even though being 16 it has barley started and it does make me appreciate it more.

Grandma just passed from dementia last night. With 100% certainty, everything that was described is exactly how she acted. The slow to rapid decline. The anger mood swings. Forgetting im her grandson. Sentences that lead to nowhere. Motionless just with her eyes open. Then nothing Enjoy every bit of your life everyone.

I've lost four members of my family to dementia - my grandmother (father's side), my great aunt (father's side), my father's elder sister, and my father's little brother. The last one was the hardest because his death occurred during the Covid quarantine and my father couldn't be with him. My mom tries to reassure me that my uncle was surrounded by nurses that made sure his last moments were comfortable, but I'm thinking more of my dad. Our relationship is a rough one, but I still care about him. That damn virus kept my father from being with his brother. It's hereditary, the dementia, on both sides of my family. I fear my father getting it. I fear my mother getting it. I fear my sisters getting it. I fear getting it myself. I haven't had the best life, and, as you pointed out, dementia can cause a complete personality shift. I'm afraid of I might become. Is it horrible that I hope heart disease takes me? As scary as a heart attack would be, it wouldn't be lingering, would it? Hell, I almost died last October tripping over my own feet, falling down three stairs and bashing my head against a cedar chest. Anything could take me when I think about it, but I don't want to die a little by little everyday. There's a horror movie called Relic that came out in 2020 deals with the subject of a family member with dementia. A woman, along with her daughter, move into her mother's home to take care of her. The house is covered in an ever present mold, symbolic of the pervasiveness of the disease. There's some body horror in it, but the last 10 ten minutes got me right in heart because what happens. I don't want to spoil it, but it was a metaphor that almost made me cry. I've nothing more to say. I don't know if anyone will read this. Thank you, Mr. Elieson, for making this video.

Covid quarantine was the worst time of my life, not only because I couldn't go out, because my granfather with alzheimer and cancer was on my house, and we were the only ones that for the previous 2 years could take care of him. I remember he starting to forget everyone, however, more than forget, he usually took others as sombody that he previusly know, however, I was the only one that everyday, I was a stranger to himself. As his diseasess sarted to advance, it was clear that this month, was his last, however, an unexpected event happened. My other grandfather died suddenly, because of covid, I didn't even knew that he catched something and felt all surreal. The days passed and as well my grandpa with dementia, and... the first day I could handle the pain of all, the anxiety that I was coming through but one night I have a dream. It was simple, and even.. felt like a normal day, I went out with my friends, having a great time. However, when I got to my house, I found My grandfather, standing and smiling and the only thing that I did was hugging him. I swear that when I did that, I felt the warm of his body, and no long after, I woke up crying, without knowing what happened. After that magical event, I started to feel more relieved, at least, he wasn't living in that manner anymore and... That dream felt like the farewell that I needed. This video made me remember of that rough time, and the only thing that I can do is express my story and beeing up to help and listen all the families that are coming through this

Being a young adult coming from a long line of people affected by dementia it can be daunting and terrifying, especially when you see your own parents and grandparents begin to show symptoms. Beginning to forget memories, names and forgetting. I appreciate this video being here to humanize this horrifying disease that hangs over nearly everyone, so thank you.

I've lost multiple loved ones to Alzheimer's and am currently under treatment myself. Thank you for this. I love that you incorporated the music of Kirby with the artwork of Seal, I believe they both came as close as possible to describing the horror of the disease.

this is genuinely the best video essay i've ever seen, i watched it with headphones and the background noise and static switching between ears and repeating really gives the effect that you're forgetting something, also alathea (or however it's spelled) is now my favourite word

My grandfather died about two weeks ago. He had demetia, and he would forget things. He mentioned how the house that he was in was much like his own. He bought that house and raised four children in it. He would forget where he went to college, and what he did. He attained multiple P.H.D's in many subjects. His mind slipped away like ice cream melting into the burning concrete. He remembered people, however. For that I'm grateful. This video truly scared me, because this is real. I do not want this to happen to me. I may be fourteen, but the inevitability of this means I very well may lose myself tomorrow, and there would be the same result. Maybe I will be spared this fate. Maybe I shall resemble my grandfather. Maybe I will be left wandering an unfamiliar hall, with people I do not know, in a house I grew up in, with my family.

For a while after my grandma got diagnosed with dementia she lived part time at me and my parents house, that time was the worst time of my life. I had to slowly watch her go from helping around the house to trying to break down the door to get outside to escape supposed nazis coming to kill her, this combined with covid meaning that I couldn’t get out to the house for a break has probably mentally damaged me in some way. Even the smallest thing could set her off into a house destroying frenzy and at some point I was fully convinced she was gone and dead in my eyes, I still can’t shake that feeling now. At this point she is in a hospital for 24 hour care and I haven’t seen her in a year. Thanks for anyone that read this far, just needed to get this off my chest.

I used to be a patient care attendant. Witnessing someone actively losing their memory whilst 30 seconds before they were aware of their surroundings was like a living nightmare. They instantly forgot their age, their name, their past job, if it was day or night, where they were and why they were dressed like that. The patient was vividly aware that they were losing their mind, and to see them realize their dementia all over again whilst having absolutely no control over it is an experience that cannot even be described. It is eerie.

this is a powerful video, my man. ive watched it multiple times and it always blows my mind. im a young person with significant memory loss, brain damage and trauma related. and alzheimers and dementia are one of my biggest fears. you go so in depth here and seriously connect with me. ive cried watching this and your explanation of the concept of red is very emotional for me. thank you for this video.

I help care for those with this illness. Ive witness "terminal lucidity", we call it "the last wind" in the unit. I've only seen it maybe four times in my 7years of working in healthcare. Its both bittersweet and amazing to see that they can get a little back before the end. You did an outstanding job capturing the brutality and transitional facts of this terrifying disease.

I think the part that really scares me with ADHD is when I'm driving somewhere familiar and my mind goes down a tangent and when I blink back to reality, I've gone a few blocks, having stopped at red lights and slowed for traffic. I was conscious, but my consciousness was elsewhere. True autopiloting.

Good god I cannot imagine the amount of anguish one must feel when it's just another day at the job in the hospital. You pick up a patient's chart and read your own name, and below it a diagnosis of Alzheimer's. The overwhelming dread and despair must hit you like a freight train as you quickly realize what is going on, only for this horrific disease to drag you back out of lucidity, kicking and screaming.

I do not expect anyone to read this. But this video is truly awesome-inspiring and thought provoking, this is food for the mind. Thank you for creating such a video.

Sometimes when I need to cope with difficult moments I think as the moment as already forgotten. Like how many moments are lost out of your memory? Entire days, weeks, maybe even months could go by and in the future you don't recall them. It helps to think a tough situation as to never have happened, because in the grand scheme it never happened because it was forgotten. I really enjoy the topics you explore in your videos and look forward to what else you make in the future!

My grandmother on my fathers side has dementia and my grandfather on my mothers side have dementia. Dealing with my grandfather, he was a man I looked up to my entire life and all the stories he told were always inspiring. With his frontal lobe dementia, his memory is less affected (mostly his short term memory being affected) however, the effect on his emotions have haunted me for the better part of a few years now. He does not laugh, he does not cry, he does not yell, he does not whisper. He has trouble with slurring his words. As for my grandmother, she was once a soft spoken woman with the voice of an angel that partially inspired me to become a musician. She is now a kranky hateful woman with a disturbingly quick wit for venomous comments. Francis was no more. I remember the moment she first asked me who I was, a tidal wave of skull splitting dread flooded my mind and I couldn't even look at her. I ran out of the room and cried in the room I was staying in. I still love them both but seeing them nowadays still breaks me in half. Thanks to all who listened to my story.

i’ve always been told i’m an identical copy of my mother when she was younger, it was always such a fun and silly thing among my family. i’ll never forget being 12 years old and having to actually pretend to be my mom because my grandfathers only memories left of her was when she was my age.

my grandmother has been displaying recent symptoms of alzheimer’s or dementia. watching it happen and not being able to cure, or delay the process is absolute torture, it slowly takes someone you love so much away from you and all you can do is sit and watch.

I had dementia for 4 years. It was an infectious/encephalitis kind, so when I was finally treated, I recovered (though I still have some cognitive issues). From my personal experience, it's not scary. I wouldn't use the word scary to describe it. It's more disorientating. As much as you want to function with other people, you just can't. You don't recognize your own face in the mirror. I would look at my parents and think 'yes, these are my parents,' but I would feel no emotional attachment to the concept. It's like I didn't recognize what parents meant anymore to me. If anyone dissociates or has depersonalization/derealization disorder, it's like that - just upped a few levels. You don't even know that you're forgetting or losing memories. Even now, I randomly can recover memories throughout the day - important ones too, and I can't believe that I ever lost them. I'm grateful to have them back, but I'm finally realizing that I don't actually need them. It's sort of like having a lot of stuff piled up in your room - you're attached, you don't want to get rid of them, but you don't really need them. You don't even know the memories that you're losing, so it doesn't feel like anything is being taken from you. Anyway, the feeling I overall had was kind of euphoric. It kind of felt like perpetually being high. Like yes, you're forgetting everything, but there was something really nice about it. Peaceful, almost? I would have moments of psychosis and those were less peaceful, but when I was lethargic and at my worst, it was honestly really nice and relaxing. It's weird that the beginning of having dementia was worse than the end of it. I've come to the conclusion that it's the literal ego death (if you're more spiritual). You're losing everything. Your self is gone, everything that made up you is gone, but it's not scary. A part of it feels normal. However, to function as a healthy and happy human in life, I think that you need a bit of ego. That's how you thrive, that's how you get things done - don't dismiss having an ego just because everyone constantly encouraging 'ego death' all the time. Hopefully this can bring some comfort to anyone whose loved ones are dealing with that (or people that are terrified of the concept).

This video is haunting. Watching this while coping with my grandma’s late stage dementia tears my family apart, my dad and grandpa becoming obsessed with her health and memory. It’s worse for them than it is for her. She smiles, she laughs at nothing, and she seems at peace. There is bliss in ignorance, they just have to find it.

This fear is something not to be underestimated. Forgetting yourself is definitely worse than death.

"Oh, something to watch while I draw!! 🙂" (Has an existential crisis)

My great grandmother had dementia. She had lost her husband a year before she got really really bad. She used to be really cold and honestly mean but only got more kind and wholesome the older she got. The last year she was alive I had to stay with her at her house with my father. it was so painful. She didn't know who her grandson or great grand kid was. She constantly said she had to go home to her husband and pets who were all dead. We would have to tell her that this was her home and they were dead and she would get this look at that was pure confusion and terror. Sometimes she would get angry with us and think we were lying and tell us she needed to go home now. On good days, she would take out her birds but assumed it was someone else's. I remember her telling me that she should probably get them back to their owner. I never had the heart to tell her the truth for anything but my father thought it was necessary and right to tell her. She died that year. 2017, I think. My grandmother is now showing signs of Dementia. She can be so cruel to my family and I but I know she really does love us. It's so hard being around her because she just tells the same stories, doesn't really understand the world around and often stuggles with things like having a coherent story. I try to see her often now because she's been the only grandmother I've had. Her son, my stepfather, really stuggles with the fact that his mother is losing herself. I dont think I fear forgetting. I fear having to forget and my love ones having to just watch me decay and lose myself.

0:00 “At best, forgetting is simply inconvenient, at its worst, it can destroy a life. Multiple lives.” This is the scariest quote I have heard, hands down. No form of history is permanent, videos can be deleted or destroyed, VHS tapes can be unwound or torn apart by an uneducated child, and memories can be taken away, just as quickly as you gained them.

Long Post: I am a caregiver and the man I care for has Alzheimer's. I was told about this disease he had before my first day with him . And honestly from what I thought the disease was made people do/act such as keys in the freezer and not remembering the simplest things etc on our Intial meet and several weeks after signs of the disease was nearly non-existent. But for the past I can say month maybe 2 I've noticed a significant change within him. Such as being moody being the most significant at first. Slowly but surely I needed to start helping him stand up , and now even help ease him down as he sits. First I thought it was old age, I mean that is nothing indifferent from what I know for fact will come with age. Then one day as I helped him up he could barely stand , so I encourage him to take a seat. After a while and a glass of water we try again with still issues but at least there's motion to get to our destination. Next thing I know he kind of freaks out halfway to our destination saying he needs a seat as he just stopped dead in his tracks as if pause was pressed while watching movie. For the next couple days me and another caregiver mention to each other the difficulty walking and standing until one day he can't even get up nor stand. Just layed down all day. We made a appt with his Dr with him saying it could just be old age as well as the progressing dementia. Day by day he got better and was able to walk and get up but it started taking a lot out of him. Short walks from his room , which at first was small steps but fast and little effort, to now completely exerted of energy, out of breath as if he took a light jog. I would come in for my shift to him always reading , non stop pretty much all day. But now when I come in he'll be sitting in his room, no book, in complete silence looking out his sliding glass door. The moods swings are becoming more consistent, and now at times when I ask questions he just sits and stares at me, blank expression, eyes deadlocked staring into the windows of my soul just like he does his sliding glass door. I try to get him to come hang out with me and when he does well just sit there and I'll talk my ass off while he just looks at me occasionally smiling. If and when he does respond he gets lost in his words to where he can't get them out. I can tell he knows what he's trying to say but to articulate the words is difficult, and the frustration he shows is heartbreaking. A far cry from what he was when I first started working with him to his condition now. I used to get somewhat offended and pissed when he wouldn't answer me or just stare at me when I asked him questions until I was told by the other caregiver that these were conditions of his condition getting worse. With your video it gives me not only a deeper understanding in what to expect , but also other signs and possible actions that will occur. But most importantly your video gives me his perspective, the hell we could never truly understand unless we had dementia as well. So thank you , this disease really didn't seem all that bad with my Intial 'idea' of what it is, but now it sheds a whole new light on whats actually going on and the possibility of how it feels. And if I'm with this man when he succumbs to this , which I hope I am, I will be devastated. He grew on me very quick, and when I found out his Birthday, March 4th, was a day after mine, my bond with him grew a lot more. I make it a point to try and do the best possible to make him comfortable, happy, and even instill some sense of control and decisiveness by asking what he wants, wants to do or trying to ask him things about his past just to help keep those almost forgotten memories a little bit longer while the memories is still there.

The writing, the soundtracks, the references. Impeccable video. What an amazing job this is and what an incredibly fun and thought provoking video. I have become incredibly nitpicky of the writings in videos since the bigger part of them revolves around stitching sentences together with fancy words and questions marks at the end of them, attempting to sound dramatic and interesting. This video however is wholly honest and genuine in its attempt and i can see that it was an honest creative experience for that sake. Great job and thank you so much for it.

Introducing myself to my grandmother every time I see her is one of the hardest things I've ever done, at least she's always really happy whenever she gets to see us

honestly i dont think ill ever be in the right headspace to listen to Everywhere At The End Of Time

"You never know the value of a moment until it becomes a memory" -Dr Suess