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    Memory Health: Alzheimer's Support Group
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    Dissecting time: what does a day feel like?

    Dissecting time: what does a day feel like?

    This may sound weird, in fact it feels weird even talking about it....but I need the input of people without this problem. That problem is the almost complete loss of a sense of time. Since my MCI became a little less "M", something that has really messed with my sense of reality is the inability sense when some period of time has gone by or to be able to put some future date/time into perspective relative to now.

    Yesterday feels like last week, and last week could have been yesterday. While the easy answer is that memory loss during any given period would seem to make that period seem "faster". What that would then imply is that normal people sense time based on the activities they recall from that period. For example, ask someone what happened 8 hours ago, they can usually answer because they have a sense of how long 8 hours ago was. To put it another way, perhaps we sense the passage of time based on the activities we remember. Once you start to lose those memories of activities, your sense of time can suffer...but remember kids: this is the theory of a clinically crazy man...so my question to you is, how do you sense time? How can you make a reasonable guess as to when say 8 hours have passed?

    I am curious about the mechanics behind this because without a sense of time, even trying to plan a day is almost impossble....

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    Hi very interesting and apt post. My husband has been diagnosed with Alzheimer's (has been for some years ) and the first signs was his complete loss of the concept of time. No matter how it's explained to him he just cant fathom what time is. as his carer makes it impossible for me too to plan ahead and pretty well impossible for other folks to know what I'm talking about . The illness is a sort of regressing to "baby days" and the way that babies have no concept of time. Fortunately babies usually learn as they grow .....UNFORTUNATELY this doesn't work like that for dementia sufferers. If you are able could you maybe tell me a bit more of your "time understanding" and how you cope? - although you have managed to describe it well already. Much thanks

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    Jeff; from one clinically crazy man to the other that's a good question... I don't have the answer either. Sometime I feel like I'm floating in the ether world and lose periods of time as define by reality. Some may say that's not "normal"... what's normal in our world is in constant flux. I's like see some of the responses.

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    Daddy et al; Both of you have touched on some things that feel interrelated but I can't quite nail it down with whats left of my nugget. Theres this thing with the time-related effects of at least my dementia that I can almost feel the answer to but its like trying to fish a grape out of jello with your fingers. I have noticed that 90% of the time, I get through days doing roughly the right thing at the right time of day, not because of any real sense of time, not a good one anyways and for reasons I can't explain, watches don't help all that much. When in a fog, I can look at the time but not really relate it to anything, the same effect as if someone told me someone dropped a bottle in Cleveland Ohio (I live in Las Vegas); just doesn't mean anything to me so the time is discarded from the scope of my mental POV. That might be a bit existential but hey, the English language only has words describing things seen by sane people. With dementia, there is a whole host of things I know/observe that have no names and are hard as hell to explain to anyone not so impaired. Think about it like when you have a nightmare (anyone), it scares the poo out of you yet when you try to describe it the next day it sounds dumb as hell and you are embarrassed even trying to tell anyone. Its like there is a missing dictionary describing our personal never-lands of no return. Some days it would be so nice not only to have one, but to share it with my caregiver. As it is, most times I need a word to describe something going on/wrong, I don't have it and just say nothing or nevermind.

    But thats only the 90%....that my caregiver is here and this is where it gets dicey as hell for me. The 10% of the time she is out (like out of state visiting her grandson) , she is no longer there to provide a sync pulse for my daily life (sorry, used to be a hardware/software engineer; a sync pulse is basically like an electronic clock tick that keeps electronics operating and doing things). With her gone, I have noticed my sense of time gets worse and worse and within 48 hours I have lost track of day or night, how long she has been gone and how long it will be until she returns..

    And THIS is where stuff gets maybe a little personal but dammit I know I see the outside view of this in dementia patients all the time. OK right now things have been very routine for weeks, I am as normal as I get, I pretty much act my age...but when I get deeper into this loss of time-sync, my mental fog gets worse (could be chicken-or-the-egg) and as a result, in many ways I find myself mentally and/or maybe emotionally regressing to almost an child-like state. Spooked by everything, not understanding much of my surroundings and with time shot to hell, I have no real sense of whats supposed to be coming next, which breeds fear of the unknown because yes, the caregiver/all human contact is gone. I see this happening and can't stop it. I hit this state sometimes even when she is here if the fog gets bad enough (the fun of LBD) and I can feel myself reacting to and understanding things with the same level a child might. Fog goes after a time (under "good" circumstances) and I am better. For a time.

    There's that word again.

    Just a strange corollary to that age/regression thing: I have no idea what my parents generation of dementia patients did for amusement but for me, video games are a great time-waster. When I am "up" or myself or whatever, simulations (golfing, hang-gliding, climbing, driving) are my cup of tea; the more "real" the better because it feels like a kind of therapy when you can go out and drive around a beautiful tropical island, go swimming in the bay, etc and never leave your arm-chair, and definitely not getting near the no-longer-allowed car.

    When I am in that "other" place, I have a Nintendo simulator, circa 1987. Basically what I would have been playing as a...well very old ten-year-old. The ten-year-old "me" can deal with it whereas when I actually was ten this stuff was still 20 years away. Thing is, the stuff aimed at the 10 year-old is what I can deal with and gives me at least some amusement. Yes, I am stuck on level one of every game I own, yes I suck and only really got into this stuff in the last 10 years working at Sony.

    The take-away here is between these two extremes I have something I can do no matter what state i am in (almost) and get can at least some satisfaction from it, as much as I am able to at that moment.

    ****************************************

    Will stop now. Just opened the spout and out it came.

    Your Mileage May Vary

    Jeff

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    jeffcobb your question about sense of time is interesting because I rarely think about it. I believe my sense of time is internalized, so I often don't think about it. It's like the cardigan sweater hanging from the back of my desk chair. I don't think, "Hmm, it's getting a little chilly, I think I should wear my sweater." I just slip my hands into the sweater. If my medication is to be taken every six hours and I forget to set my timer to ding, my internal clock reminds me to set the timer. That's how it works for me today. My mother first showed symptoms of dementia at 70. I am 86. Who knows what tomorrow will bring?

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    Jaykay; I was once like you. I was a software engineer working on big distributed systems and all that needs to mean is, to be good at it, you need this sense of timing where not only can you keep track of time but what each of a dozen different machines are doing at any given millisecond. Not easy but I was part of a whole team of folks it was like breathing and yes I took it for granted. Couple of hitches in the army a few lifetimes ago also saw too it that I knew instinctively when dawn was approaching and I would awaken before the alarm, mind sharp and working within minutes, if that long. I only say all that because yes I took it for granted and now can't even take it at all. I still have some of the analytical part of my mind working, albeit with places where the ice is a bit too thin to be reliable. Still, I can turn whats left on the problem of time loss or dilation, at least my perception of it. At first watching time get all ..."bendy" to use a term from a TV show, it really kinda freaked me out but its been happening enough now where its just part of my day. Mornings can seem like days in length and whole days vanish. The only time-based thing I can really do with any chance of success is gardening because plants grow and mature at a slower rather than my longest loss so far. IOW I have not lost a whole season yet (smile). Other than that, if I tell someone I will mail them something, they might get it in a day, a week or a year.

    Equally frustrating (and this goes back to having a working internal clock) is say you order something in the mail and expect delivery in two days a la Amazon. Problem is you can't easily tell when two days have gone by and you think its weeks when it has indeed been 24 hours but you are SURE you remembering ordering that weeks ago, where the hell is it? If left unchecked, that line of thinking results in you giving someone hell for no real reason, and THAT only has to happen once for you to doubt all future feelings of anger at such things. In fact I have found a profound sense of self-doubt has been a better ally to me in this than any other attitude.

    Dementia also really makes you question your own, normally-reliable assumptions...but this is getting a bit far afield. For a long time (like my whole life) I subscribed to the "internal clock" theory and true, since the damage caused by the protein deposits are random anything is possible, I have a great deal of difficulty discarding the fact that when time-loss happens, it is always accompanied by memory loss. Now I know it may be chicken-or-the-egg here...which is why I need answers from a larger data set than one (me).

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    Jeffcobb - In case you wonder why I'm tuned in on your questions and descriptions -- or in case you're not wondering -- here it is. When I was in my late thirties, my uncle Sam first showed signs of memory loss. He was a brilliant mathematician and a partner with his brother in an engineering firm. The first person to notice it was his sister, a bookkeeper with a high school education. Many years later his sister, a gifted artist who was my mother, could not recall how to use an eraser on an ink drawing. She had Alzheimer's. In 2011 after my first two husbands died, I married a man six years my junior. I was 79. I assumed he would care for me when I developed Alzheimer's like my mother or died suddenly of a stroke like my father. He was diagnosed with Alzheimer's and several other diseases and died in 2014. So here I am, a woman who feels like "Last man standing, bring the flag." I laughed aloud at your use of Amazon package delivery as an example of time perception. Yes, my internal clock is aware that within a week, Amazon will deliver a new cardigan sweater to hang on the back of my desk. Thank you for making me aware that so far, I have been granted that gift of time.

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    Yeah, that plan didn't work out so well for my wife either, some 6 years my senior. Since you have engineers in the family, ask them how fun it was the first time an engineer with dementia cant figure out how one of his own creations works anymore. I left the hardware side and went to the "dark side" of engineering, software back in 80...something. Anyhow I have a LOT of custom software I wrote to make our house really cool, or at least really "ours" to our quirky way of thinking.....and now I am not only the only one who knows how it all works, I am almost not even that guy either. I can look at some software I wrote to do things like run our media server or our custom firewalls or even the software I wrote to automatically raise the volume level of all of our movies so that my hard of hearing wife can hear whats going on.

    And now, much of that is kind of a black box to me and when it breaks, I won't be able to fix it and there will be no one to ask because no one else knows how it works either.

    So in time, after two decades of having our "ultimate" setup in our home, we will be forced to use things that mere mortals take for granted; having to use cable TV, put up with commercials, being forced to watch a movie exactly as the director wanted it seen (some are too quiet so cant be heard, some like say the Matrix trilogy has the audio so unbalanced you can't here dialog over the explosions and other SFX. So in this case I wrote a program to do dynamic range compression on the audio so the quiet stuff gets louder and the loud stuff is quieted. Some are too dark so I wrote something that would artificially lighten the film. And so on. Our movies and TV shows (kinda important to two disabled folks stuck in the house) are tweaked exactly how we like them and enjoy them best, they are streamed from servers I built to every device in the house so I can watch a documentary on my tablet while she watches the latest RomCom on the big screen.

    The point of this is we got pretty spoiled by this over the years and now when something major goes, we will be in trouble because the only one who knows how it all works.....won't know anymore.

    Sorry, got way off on a rant or something. Its early and the meds are still kicking in. Time to go gardening.

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