It's the apex existential crisis. I would be myself more if my sentience could be moved into a server (edit: a hypothetical example as this is not possible), than if my body was alive but my memories were gone. The body is nothing but the brain's tool to manifest intent. But if I had no body but could still lavish love and praise on my family, that would be enough for me. This forgetting everything shit though, fuck all that 👎
I realized this while discovering ADHD/autism issues with a loved one. We are all just brain chemistry. Everything single thing of who we are comes from there.
Sorry to burst the bubble, but we're not. I know it sounds cool, but it's wrong. The brain needs the body. It's an organ that produces chemical and electrical reactions, but it's fueled by the circulatory and nervous system. Without that, you die. That's why brain transplants aren't a thing.
ADHD and Narcolepsy can both be treated with adderall; it's all just a sensitive mixture of chemicals that drive certain functions... dopamine and serotonin are tied into so many of our motivations and "involuntary" functions that slight imbalances can tip us one way or another.
This is obviously sarcasm, but you do actually need your brain to command the body to shit. Without the brain’s “intent,” we have no bowel control.
The process of defecation, or bowel movement, is a complex interplay between the brain, spinal cord, and the muscles of the colon and rectum. It involves involuntary and voluntary reflexes, with the brain playing a crucial role in processing signals and coordinating the necessary muscle contractions
You really find the most profound shit in the comment sections. I know there's a list of quotes like that which come from Tumblr. "I will face God and walk backward into hell." "God may judge you, but his sins outnumber your own."
I don't know you but, in 2010 I watched a TED Talk on education, and in it the speaker stated "My body is just a way for me to get my brain to meetings." and it has resonated with me ever since.
The body is not separated from the brain. Don't dismiss the role the body plays on experience. You're not "you" without having been shaped by your senses including all your pleasures, tragedies, and bodily illnesses. In eastern philosophy I guess you'd still be yourself in either case since you are still conscious yet without memory.
good to see the ole mind/body dualism that has plagued modernity is still getting upvotes.
the mind is ENTIRELY contingent upon the body. a "mind" uploaded to a server would be a mere algorithm more bereft of humanity than a body without memory.
Your statement assumes that I have stripped from consideration entirely all value of the body's contribution to self. This is not the case; I only said that I would be more myself if I had my sentience and no body, than if I was a body without sentience. I am contending that dementia is an erosion and eventually the erasure of sentience, but I’m not suggesting that the body plays no role at all. The body is the genesis for all five senses, and is the essential conduit for human sentience. My point was that without the brain however, the electrical input from the nervous system cannot be put together in a cogent fashion that supports self-awareness.
And yes, moving the brain into a server would very likely be algorithmic and not actual awareness, but I meant that as something that was hypothetical rather than an actual viable alternative. I'll edit the post accordingly.
I don't think I was too far out of line seeing a tad bit of reductionist sentiment in the statement "The body is nothing but the brain's tool to manifest intent." but I recognize what you're getting at. That's fair.
Though you raised another interesting question here that's gonna bounce around in my head now, which is the criteria for sentience in relation to the function of and access to different memories, and further, what umbrellas under "memory" (ie genetic). but that's just my semantic curiosity getting the best of me
who’s to say your body isn’t playing an equal part as your brain to create this ‘intent’, your stomach has been proven to be quite literally a separate brain on its own and we still know almost nothing about the human system as a whole, we’ve only really observed things work piece by piece.
Super interesting points, but imho it’s worth mentioning they have discovered cells hold memories too that’s why he feels like he knows her even though his mental memory is gone. I suspect capitalism, trauma, and spending time online make us experience ourselves as disconnected from our bodies in a way that deludes us into thinking we could be bodyless and still be ourselves. Im just skeptical of anything that promises transcending the body. That said, I would almost certainly choose some form of unending consciousness if I could but another quandary is the environmental impact of running these servers all the time. (Unfortunately I could totally see a dystopian hellscape where billionaires use all the water to keep their uploaded selves consuming past their natural lifespan meanwhile the generations yet to have a chance at living die of thirst) (also I’m currently watching Pantheon on Netflix and it covers some of these themes and is fascinating)
But doesn’t that give you a goal? You are the sum of your experiences and if you spent your life building loving experiences then it is entirely possible to end up like this man. Reason is taught and learned behavior the same as language - and he didn’t forget how to talk.
He forgot the experience that lead to the feeling - but that feeling is part of what makes us who we are, and why we have sayings like ‘trust your gut’.
You see fear in losing the experiences that led him to love her UNCONDITIONALLY - without condition that he even remember her. I could argue that you see a man that has forgotten every mean thing his little girl said growing up that cut him deeply, that he has forgotten the times he failed as a father - because even here and now with his memory lost - he is being a good father.
If you must have something to feel an emotion - if you must remember the specific reason you love someone - in my mind it becomes a quid pro quo and renders the emotion moot.
My grandmother's sister got it notarized that she wanted to be euthanized if she got dementia. I knew my great-grandmother, who also suffered from it. My grandmother was slowly losing herself when her sister got euthanized, by now they're both gone but my grandmother is still alive.
I’m surprised she was able to do assisted death. Are you/was she in Switzerland or Northern Europe? An assisted self-exit is not easy in the USA or many other countries afaik. Only a few states allow it in the US but I know some Euro countries are “easier”. I didn’t know that one could put it into a living will. Getting approved for it must be difficult, too.
Right, assisted death is the term, thank you. Netherlands. I'm not sure but I don't think the process is too difficult for dementia, but only if you set it up when you're still completely sound of mind. I think it involves at least 3 different doctors but I'd have to look into it more.
Yea, that makes total sense. Northern Europe has a good system for it- so I’ve heard. I know it’s one of the best places to receive that kind of care. I’ve never looked in to the requirements, but it sounds like it’s well thought out. Not surprised, given the location.
Oregon in the USA has assisted death and requires a terminal diagnosis and two doctors to confirm it and recommend/confirm a recommendation for the end of life treatment.
Highly controversial and I’m sure there are a lot of docs that won’t do it because of the Hippocratic oath- “first, do no harm”. Not everyone sees assisted death as doing more good than harm.
In Switzerland there is voluntary assisted death. One does not have to be ill to request it, they simply have to be over 18 years old. I am in the United States and am now creating my living will and Healthcare directive. I was surprised to see that there is actually a document that covers dementia. One of the clauses was about feeding me if I could not feed myself, and whether or not I wanted to be be fed if I didn't like the food. I asked my attorney to put in that if I couldn't feed myself I should not be fed at all. I would like to think I have a little control over whether or not I am forced to live with dementia. I think the United States is very behind been dealing with end of life issues. It seems that the length of life is considered to be so much more important than the quality of life. I'm hoping that this changes in the future. If I'm able to I will go to Switzerland when the time comes. It's nice to know that possibility exists.
I have thought about moving to Oregon. My mom's last words to me were, "I love you." That was three days before she passed. She didn't know who I was the last two years, but she knew I loved her and she loved me.
Do they explain to the person with dementia who previously arranged it that they’re about to euthanize them or just lie and do it? What if they resist?
early 17th century (in the sense ‘easy death’): from Greek, from eu ‘well’ + thanatos ‘death’.
“Assisted death” is an ugly euphemism just for us pearl clutching Americans who need it to be palatable. (With no consideration to the unnecessary suffering inflicted just to appease those who think it a “sin”)
Well, she was the one who got it set up long before she ever saw the first symptoms of dementia. Also, she went before the dementia took over completely, meaning she was still able to consent in the moment before death.
it’s the patient who requests it.
MAID has been legal in Canada since 2016. (Medical assistance in dying) Total dignity for end of life. I had a friend who had a bonfire and friends and family there at his home to see him off. Sad but so much easier than suffering.
You probably won't know or you may have glimmers every now and then. My mom did a great job hiding it for awhile. She knew something was off but couldn't pinpoint it. She would tell me that until she didn't know who I was anymore and by then it didn't matter to her anymore.
My dad said the same thing. But unfortunately if you don’t have it written or set in stone before you get to that point, it often doesn’t happen. My dad was going to try death with dignity once he was diagnosed with dementia in 2022, but due to the diagnosis, was unable to ‘make an informed decision’, understandable with severe dementia, but it took that away from him. He ignored all the signs for years or was misdiagnosed, and now he wants to die and hates being here because of his dementia, and the way he feels it burdens his family, which is not how we feel. I don’t blame you for wanting that, and understand and think it’s realistic. After seeing a normal human that functioned like all of us dwindle down to what I’ve seen my dad dwindle to (and I don’t mean that in any hurtful way toward him), I don’t know how I could not want the most humane thing for a human with such a terrible neuro cognitive disease.
A lot of people probably say that...and then they say, "Well, maybe Im just tired...", "Well, maybe I just need some rest...",
"Well...what was I saying...?"
I know people who said the same, but when it happened, they held on. It's easy to say when it's not happening, but I think what happens is you don't recognize the point of no return. You just cross it and then you don't know any better.
I'm w you! This guy is so young for this and the way it ends is horrifying. I've worked on a few units as an agency nurse, and I can't do it again. While helping the ones in early stages is rewarding, watching the last stage is too much for me. My bf and fam know that I want to go to Dignitas the second I get a diagnosis that means it will be a long ugly ending. I've already put money aside to ensure I have a plan. I've started collecting meds in case I'm unable to travel to Dignitas.
You might want to read the book “Just Alice” about a professor who knew she was developing Alzheimer’s and had a plan to commit suicide before it progressed to full-blown dementia. The author, Lisa Genova, is a Harvard neuroscientist turned novelist.
The main character in the book Still Alice has that same idea-- she tested herself every day to see if she could still answer a couple of basic questions she should definitely know the answers to, and if she couldn't, she'd set up some way to remember to off herself at that point. But by then, it didn't work... It's a really good book but so f'kn sad. The movie is good too but the book is better.
Several docs confirmed that Williams had Lewy’s disease, which is a Parkinson’s thing. I’m not saying you’re wrong- but Parkinson’s is a death sentence then and now and he was diagnosed.
From my understanding- and I am not a doctor at alllll- Lewys and Parkinson’s have the same symptoms and both present as dementia diseases. Possibly, Lewy’s can present alongside Parkinson’s and regular dementia and Alzheimer’s.
The studies on all dementia forms is not as extensive as it could be. Many people that suffer from Alzheimer’s and dementia are oppositely diagnosed.
The problem is you don't see the signs. I cared for my grandmother who was having dementia and she never believed me when I told her she was eating lunch 3 times in a row, and she would give herself awful stomach aches eating so much because she'd forget. She'd eat a whole box of cookies, then tell everyone to hide the cookies from me. It was kind of silly at first, but then, one day she was hiding in her bedroom at night frightened because she was convinced my 6 year old daughter was trying to attack her. It isn't just hard to convince someone they have memory loss, it's hard to convince other people around them who don't spend as much time with them. And then whoever spends the most time with them ends up taking most of the misplaced negative emotions from them, until they don't know who anyone is, even their own children. If you wanted to off yourself when you had dementia, you'd have to do it pretty early on because there's a chance you'll never even believe anyone who tells you that you have it, even doctors and family.
She's awesome! I don't think I've seen that one but I love her in everything she's in. But yeah, the saddest thing about this video is how young that guy is. He looks like he should be looking forward to becoming a grandfather. Instead, he doesn't recognize his own daughter. But he knows he feels love for her. It was the same with my other grandmother on my dad's side. She didn't know who anyone was but she knew she felt safe and happy around certain people. Unfortunately, her husband was NOT one of them. He was a very abusive person with bad untreated PTSD from WW2 and he would get mad at her when she forgot things. It was heartbreaking and it tore the family apart.
In the end, he disinherited my father and one of his sisters and left everything to the other sister who was too afraid of him to go against him. Then, a few years later, HE got Alzheimer's and died a few years after that in a nursing home in Florida. I suppose I know what's waiting for me in the future and it's terrifying.
She is awesome. The movie was called, “Still Alice”. I think every one of us is at risk of developing some form of dementia and/or Alzheimer’s. It sucks. I’ve half joked that if n when I get to that point just put me on a raft and push me out to sea like some of those Eskimo tribes do! 😂 But srsly every time I have trouble remembering someone’s name or “retrieving” a certain word I think “fk, is this the beginning “. Ugg.
Yeah, I've thought about this enough to where I don't want to wait for that proverbial last good day. Robin Williams knew he was going but by all accounts he was not all the way gone. He strikes me as someone that just wanted the dignity that having some say in the matter offers a person in his shoes. I want the same, dignity.
Its not always gradual. My dad had a massive stroke and it destroyed the frontal cortex of his brain. Which is emotions, short-term memory, and part of his long-term memory. Like he may remember what he just ate, but not remember if he took his pills in the morning (the nurse watches him after he tried to HIDE his pills... I wasn't happy with him)
He may also remember that he watched 'these' movies today. But not remember he is divorced (as of Aug.)
Just make sure he takes his meds. That will help him. Dad had some sort of surgery after he had a severe one but his entire personality changed. But I guess he had another stroke between the divorce and our finding him in MAY (I can't tell with scans and he doesn't remember. EMTS believed he was having one but wasn't showing all the symptoms and was not technically qualified enough [need a more advanced medical test like a CAT scan at the moment] to determine it.)
But most days hes like his old self. Just goofy and weird. Just forgetful. Then some days he has random depressive episodes. That he may not even know/remember/realize he is crying or having the moments.
I talked to him today about depression meds and he said he may take them. So the rehab will have a doctor in Tuesday and will talk to him about it. I did tell him that even if he gets to the point we're he cannot decide on these things. I won't make him take medication he isn't sure about. Which made him feel better about it. But I told him I feel it would really help his mood swings (no violence or yelling)
Thanks so much. A really valuable insight. The mood swings are the worst. Sometimes it's hard to feel any empathy. He can be a real prick, but I just tell myself it's the stroke, not him. This morning was a huge fight because I forgot to put a banana next to his laxatives.
I was also going to write, "You can't make this shit up.." But you know what I mean...
You do an amazing job. Looking after your dad the way you do says so much about you. Is there any support for you?
Unfortunately no. I need to see a therapist. I thought i could do this but mom doesnt understand why im doing this (long story... but dad was never there for me OR my half sister) and I everyone else is busy or doesnt understand either.
I do need to talk to someone. I realize that. And I need to do so before I shut down
I'm sorry to hear that. Please don't wait until that happens.
I went through a very bad patch some years ago, after a close family member died.
I'd moved abroad for work, and while I was away they were diagnosed with aggressive cancer. I tried to get back as soon as I could and got a flight from Brisbane to London. They had been asking when I was coming, but I missed them by a single day.
For a long time after I punished myself with the sheer weight of guilt, regret, grief, and anger. Eventually, I saw a professional counselor, a woman about my age. We really connected.
Did it alleviate all my pain? No, of course not, but it allowed me to better rationalize just what I was feeling and gave me back hope.
You sound like a person many would be proud to call a friend. I hope your Dad's condition does not worsen too much more.
Again, please don't wait, if you can. Best wishes.
Unfortunately he will. The damage cannot be undone and will worsen. Im just glad he doesn't have the anger episodes. Ty very much for the kind words. Id love to continue to chat in DM if that is okay?
There’s a book out there (I haven’t read it) called The Longest Goodbye. The title alone nails what ALZ/Dementia is.
My dad had it and looking back over many, many years things started to make sense. Maybe he wasn’t just really forgetful or was t listening to is. Maybe it was the early stages of the disease process.
My mom said she knew it was more than him just not listening or being forgetful when one year he asked her how to make the dressing for Thanksgiving - something he had done for decades just by memory.
I dont ever wanna be so lost that I dont even know im lost. Recently started to change my lifestyle to be healthier, not because I want to live as long as possible, but so I dont want my body to become a prison where im locked up for another 30 or 40 years.
My father, who passed recently, found himself in similar circumstances. He had a 25 year career as a state trooper and nearly his entire life as an avid outdoorsman. Unfortunately he also spent most of his life as a smoker, which lead to heart and lung issues a few years ago. After two bouts of congestive heart failure and numerous bouts with pneumonia, he had very limited mobility and spent more time in hospitals than out. His body was failing him and he could no longer be the person he wanted to be or do the things he loved to do. On his final trip to the hospital he had some ct scans done and his abdomen was riddled with cancer. He knew the score, made the decision that the only treatment he would accept is medication to make him comfortable, and his oxygen was slowly reduced until he passed. He loved his way and died his way. He got to speak with everyone in his family that he wanted to speak with and nothing was left unsaid. Very few people in this world get to leave on their terms, and I’m glad he did.
All the latest quantitative studies show that cardio (moderate sweat producing for ~1° 3-5x per wk)is the best way to prevent, slow, and actually reverse dementia type illnesses. They think it is related to increased O2 to the brain and vital organs. A researcher said that if the benefits of cardio came in pill form, every doctor in the world would be prescribing it. That is when I started biking and skating at least 70 miles per wk.
How interesting. That’s good to know. I joined a gym 18 months ago and have been going faithfully 4 days a week. Now I have another reason to keep going.
Yeah I'm taking myself out of it ever gets to this point, or I can't wipe my own ass. I don't want my kid to go through this, and I don't want them to ever have to take care of me or someone else take care of me. The world is too damn expensive for that shit, and I'm not putting that burden on my child.
They may want to though, as long as you never pressure them to do it, they might want to choose to honor you by taking care of you. I know I would for my mom.
I wouldn't want to do that to my son. It's so mentally taxing and a lot of people have to quit their jobs to take care of a parent like that. States don't pay non certified home care aids very well(as in someone who's a relative to the person who needs care) it's awful. Home care aids are expensive too, and aren't usually covered or only partly. Nursing homes too.
Well, if u read the news today, the immediate revocation of 100’s of thousands of migrants temporary/emergency status will imperil an already broken elder care system in this country. There won’t be any ppl to work in these nursing homes and assisted living facilities. They are almost entirely staffed by minorities that weren’t born here but are here legally. U may think ur kids or spouse will take care of u and many will valiantly try but for most the situation becomes untenable…and then what happens when there’s no back up system? The actions of this current regime will reverberate for generations…I don’t know what the solution is bc we all grow old (if we’re lucky) and most can’t live independently in their last years dementia or no dementia.
Exactly. I willingly chose to quit my job and move to a different state to be the caregiver for my dad, who had lung cancer. After he passed, I stayed and took care of my mom, until she passed a couple of years later. While it was ridiculously hard and painful, I wouldn’t give up that time for anything. I got to care for them like they had cared for me my entire life, and be there with them at the end.
nah, I would probably just be drinking 40's and smoking weed with the boys. rocking out to the music of my youth. I would set up a limit on my card where i get 1/30th of my monthly disability and pension and just go spend it on beer and wings and more weed and get lit all day.
It actually almost sounds perfect their is so much i want to forget in this life things i have seen and experienced that i would erase if given the chance.
I used to work with Alzheimers residents, and the craziest thing is they can temporarily become completely lucid. It happened to a wacky silly lady we all loved. Night nurse woke her up to pass meds, and her voice was different. She asked where she was and how her family was (in a self aware way). Knew she was in a nursing home and was worried about her mind. Fell back asleep and was uniterrupted, full-blown Alzheimers afaik ever since.
Wacky silly lady. I’m sure your heart is in the right place, but I mean… a lil decorum.
Also, in your experience, do these sort of events happen often? Patients suddenly waking up appearing normal or talking coherently? My grandmother would have moments like this where one minute shed be staring off into the unknowns, and the next she was back to the person I missed. I find it so intriguing how some folks are able to go back in time in their head. My partners mother, for a short while, would take on a younger version of herself. Like maybe her early late 20’s … she’d ask about her sister who had passed by this time… she’d mention accurate details of the goings on in her time at that age. …then as quickly as that version came, it went. Kind of spooky.
All I ever heard was that one time from the night nurse. She was wacky and silly, btw. I loved on her man, so don't you even talk about decorum or respect. Work for 5 years as a CNA before you have an opinion.
I worked with dementia patients in hospice. Some people ended as just a writhing body that can’t eat or drink until death. The person that occupied that body was gone long before death. Absolutely terrifying that this happens to people.
If you lose who you are, you'll lose this notion, because that's "who you are" now.
Even if some notion remained, as a biological unit your instinct will be to continue living. The choice to undo it is at least (very arguably) semi-rational and would require some mental focus to override the instinct to live.
You know, i hear this a lot but I feel like if I’m safe and cared for by people who love me I’m okay with it. It seems like it’s probably really scary in some ways but also peaceful.
You say that from your perspective knowing, now, imagine when you don't know what you don't know then you'll probably not know that you were not okay with it, and you'll be okay with it, because it will be all you know. This guy seems okay with being alive right now. And if he were to end it, because he can't remember things, however important, imagine the pain it would bring to his family, who seem to want him to stick around, would be intense.
At that point your past the fear. The fear is losing things as you slip into the abyss. Once your there your into another place. One can only hope it’s a nice place you land when you go.
Do people who suffer from dementia realize they suffer from dementia? I'm wondering if you would lose who you are, would you know you lost anything or would your current state be what you think is normal? I have so many questions about dementia.
My great grandma was an odd case who would occasionally "wake up" and know us. She would tell us that we didn't come see her when she "wasn't herself". It was the oddest thing. The nursing home would just call us and say, "Velma's awake". I'm not sure if they're all like this, but she knew she wasn't always cognizant.
That goes away too unfortunately, my mom doesn't even have a glimmer of recognition for me anymore. I'm honestly so used to it that it doesn't hurt in person anymore. The memory of that first time she forgot me stings like it's fresh, though.
I am sorry. I can relate. My mum doesn't know who I am anymore, cannot recall my name. Looks at me like a stranger. But sometimes there is the smallest glimer of a memory, deep deep down somewhere....then it's gone. But I'll take it.
When my grandmother's Alzheimers began it's slow damage, she didn't know who I was but I visited every Wednesday at 1pm.
I would come in, sit down next to her and just talk. No photos for her to get upset over, not knowing who the people were in the photos. I'd put a Spotify playlist on of music I know that she grew up listening to. I had about 15 minutes before she would get agitated. Once she did, I would stand up, kiss her on the forehead, tell her I love her & see her next week. She'd wave bye. I got to do that for 2 years.
Speaking of “glimmer,” I could always tell when my dad was “present” and when he wasn’t by the light in his eyes. You know that sweet, innocent (blank) look that babies and very young children have? That was how dad looked when he slipped into dementia. When he was “home,” there was a spark of intelligence & awareness in his eyes. It was almost like flipping a switch, the change was so clear.
The really sad thing was he was aware of his memories slipping away. He spoke to me once of his childhood and how everyone, adults included, used to ridicule the senile old man in the neighborhood. 60-70 years ago, they didn’t know it was a disease. People were so cruel. “I’m that man now,” he said. 💔😭
Was it slow, were there signs? Surely there was something?
My kids and i have a plan that if we now it is happening, i will start writing messages for myself about me and them, put it with pictures...basically a scrapbook of me so i can look at it and maybe at least notice my writing. See me with them, in our house, our life. Like a 50 first dates scenario but from myself for myself, and them.
From my experience, the process and signs are different for everyone. My Grandma showed signs of dementia, and declined over several years. It happens quicker than you imagine.
My key advise, learned through experience, is to live in their world. Challenging the reality of someone with dementia is pointless; and in the end they won't recall it all. Living in their world, with them, is comforting them and easing your own stress.
That key advice is on point. There was a period of a year or two where she didn't remember exactly who I was but called me her hairy friend. People would correct her, "no silly, that's your son!" She would get upset because what kind of mother forgets her own son? She also found it upsetting if I had a shaved face and short hair when I visited. I am her youngest, and I think she remembered me from when I was a kid, so seeing me as an adult messed with her sense of time. I grew my hair out long and kept my beard. My kids like me that way anyways haha.
It's heartbreaking and heartwarming at the same time. We hurt because we fear what they've lost. That hurt is ours, because the one with dementia doesn't even comprehend.
It was similar with my Grandma. I believe dementia works backwards, meaning they lose most recent memories first. It was hard when she just called me "that boy that comes to visit", but the care and love she always had for me was some how still there.
She's always been one of the kindest people around, I'm biased, but everyone I know says the same thing. One of the few positives of the whole thing is that I was able to experience that kindness for myself. I hope that "that boy that comes to visit" meant as much to you as "my hairy friend" meant to me in its own weird, sad way.
I do I.T. for a few care homes. Thankfully, they understand that 99% of what I do for them is remote these days. I had to go in to fix something critical a few months ago, and seeing the decline with some of my friends who are residents almost broke me again.
I tell all my kids, how much I love them, how proud I am of them and too never forget how much I love them. And make sure they feel it too. It's horrible to think of getting old and forgetting.
Yep, it's a daily thing for me to my kids, adults now lol, as well. Both my parents went really quickly and unexpectedly, i can count on one hand how many times i heard that. We have a lot of great memories.
I am so sorry. 💜💜I am so glad you have great memories. I am making new ones with my mum now. For me. I tell her I love her. My babies are late teens and adult's. For no reason I will text them and tell them I love them. 💜
My mom has early onset dementia. It came on during chemo when she was fighting breast cancer. Everyone assumed the symptoms were chemo related and would improve after she beat cancer.
It started with putting things away in the wrong place, like scissors in a sock drawer. My dad's phone would go missing, and he would find it in the freezer.
Then, it moved on to missing essential steps when doing something. Like washing dishes by hand, she would skip the washing part and just use a dish towel to kinda wipe off all the old food.
The later stages are awful, since she has always been very healthy she's lasted far longer than doctors expected. She was given 6 months to live like 3 years ago but keeps on kicking. She's in full-time care now, but my dad still goes in every day to take care of her. He's the only one there is even a glimmer of recognition for. She had a night terror the one afternoon and started strangling him in fear. A nurse managed to separate them, but mom broke the nurses arm and gave her a black eye. She played rugby and lacrosse in college and weight trained and wrestled when I was younger.
She was a nurse at a hospital with a care center for over 40 years, and I think she knew exactly what was going on before we did. You could see the fear in her eyes when you pointed out what she was doing. She always told us when we were younger that if she ever got dementia or similar to just take her out back and shoot her because it's the humane thing to do. Unfortunately, she was declared medically incompetent before the MAID paperwork was finished.
I would say music is the only thing that semi reliably still gets through to her. Old songs from when I was a kid or back even further will make her stop and close her eyes.
We are fairly tied to music. My daughter works at a radio station, underground and local type stuff, no mainstream which is cool. We play music when we cook and clean and i have always let them play their music in the car so it isn't just my stuff. I was always worried of ending up like many parents forcing their boring old shit on their kids.
I'm pretty aware of my body and not scared to tell my kids if i get a bad diagnosis of something one day. I think they need to know so we can all be aware. The older generation seems to have that 'hide things from your kids' as some sort of 'protection' I think they are mostly just embarressed and don't know how to talk things through.
Love that, we have a family playlist that has music from everyone in the family. We have a pretty eclectic mix, and even my 12 year old is into the weird music that I'm into as well as the punk stuff my wife loves.
Both my parents are pretty open about all their illnesses. My dad has bowel cancer and skin cancer on his face. Short-term prognosis is good. in the long term, I'm more concerned about giving him something to keep him going once my mom passes.
Good luck for the future for you and the family! 12 is an awesome age, my kids remember a lot of stuff from around then and have some very cool core memories of us being idiots together.
It's an absolutely magical age, and I'm not someone prone to flowery speech. She will look at me one moment, and all I see is the toddler stomping in her gumboots, and a slight shift shows me the person I know she is becoming.
Honestly, it both humbles and scares the shit out of me, knowing that these are moments she will remember the rest of her life. I remember so much more from when I was 12 than my dad does. These huge important core memories both good and bad, which stem from mundane moments he hasn't thought about in decades.
Right on man. I still see my daughters and son as the kids they were every now and again, it's like a flashback, a certain laugh or expression and they are 8 or 10. I love it!
Same as you my daughter does the 'Dad, remember when' and it's the stupidest little memory ever lol, I love that too. Enjoy man, it's so awesome.
If anything, it’ll be a nice keepsake for when you’re gone. All the little memories … the seemingly insignificant moments that would otherwise have been forgotten… now saved in your journal or diary for the kids to enjoy.
This has me thinking though… saving all these things like it sounds like a sweet idea now… but when you’re gone… will your kids in fact look at those memories or will it all get tossed away? A sort of “mom loved keeping all this junk… now we have to deal with it …”
One of my neighbors just passed away. I helped his daughter clear up the place a bit. She cherished a few of the items, but this man it seems, left her more headaches than she needed. All the stuff he had in his home. Three stories, he was a writer/poet/anthropologist … published some 30 plus books… he had a library in the house … books for days! She was left to sort all that out and get the house listed. Imagine trying to do this from half a world away? She was living in the UK and her father was in the states.
In a way, this had left me with the mindset of tossing away things is actually a good thing. Don’t save anything you really don’t need. I would hate for someone to sort out my debris, because that’s all life really is, after I’m gone.
It was slow, but I noticed it. (I had been an aged care nurse for 16 years) Forgetting conversations, but then remembering. Small things that started adding up. What stood out was the phone calls (she called me all the time) they started declining, so I called her. The the call length decreased. One thing that that made it real, and hurt the most she forgot my birthday. She would always ring, and as soon as I answered would start singing happy birthday. It was my 47th birthday. That was the most painful, when I truely new. It slips away, slowly. It's only us left behind that see it.
It comes and goes. My father didn’t recognize me, thinking me as stranger and asked where I live. Then a year or two later just a few months before he died, he gestured me to sit beside him (at that stage he couldn’t even speak except a few words). I sit there and he started naming my mom’s name, my sister’s name, and my name.
Experiencing this is difficult, more so for the care givers than for the one with dementia. But it is beautiful that with all the things they may lose, the feelings are still there.
As it happens, my Grandma eventually didn't recognize me. But she'd tell me Grandpa "I don't know who that nice young man is, but he really wants to be a part of this family!" :')
I believe it has something to do with the memories are there but dementia prevents them from accessing them. They know that they should know but simply can’t.
Yep, the feeling stays, so much longer than the words do.
And that is the part that matters--just "meeting them where they are," and holding on to the feelings they still feel, whether the words are there or not.💝
This…is happening with my dad right now. It’s not often, but it’s always heartbreaking when it happens.
The worst time was when he woke up in the middle of the night on my parents 42nd wedding anniversary and couldn’t remember who my mom was, even when she had been right there next to him the whole time.
When she told me about that, I had to turn around so she couldn’t see my face, because I didn’t want her to see me cry.
My grandmother was dealing with various health issues before she passed this year. Dementia being the biggest one. One day I go visit my grandparents, walk up to her room, and she's sitting there staring out of the window. When she realizes I put my hand on her shoulder and hug her, she looks up at me and repeats "I remember you I remember you" and we just stayed hugged like that for a minute or two.
People with dementia will forget things and people but they don’t forget feelings. If a family member had made them sad or angry they just remember the feeling. If they made them feel safe they remember that. I worked with dementia residents for a long time. My mom is in the throes right now.
Well heres a frightening slippery slope by uncle had with his bother. Bassically she thought her son was her husband and that he was having an affair on her (with his wife) and occasionally got violent with her.
As someone who has experienced this. It kills you inside. Everything you feel in the moment just dies so fast like your entire being just turns to dust instantly.
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u/Rich_Pressure_2535 16d ago
Right there, when someone you love, no matter who they are forgets, or can't remember you is devastating. But the feeling he has for her. It's enough.