This is a story already too long to tell, or at least, tell it right. It started as one thing, became something else due to circumstances, and now represents something both alluring and frightening, seductive and very final. Let me start at the beginning.
Originally Randy and I had been comparing notes on a pretty unique subject. I will tell this as best I can. Traditional dementia logic or wisdom has it that the disease eats away at the brain and over time there is less and less there. In fact as this worsens, everyone from doctors to kindly family members start to assume that is less there and therefore by definition, more is simply “gone.”
I am not angry with folks who think that; they have no other clues to follow, they are doing their best, they in most cases have no evil intent. They are also wrong.
You see, there is a place. Each dementia patient either has or can have his or her very own. When you start down the dementia road, your world shrinks. When you start, you are like 99% in the real world with only the briefest of moments spent elsewhere. When the visits are that short, its more like getting glimpses of someplace out of the corner of your eye, impossible to focus on directly but its undeniable that its there. While possibly interesting, it is in fact something that you as a normally-thinking person has never had to think about; you are starting fresh, learning with each step that you take. So you go slow.
As the dementia advances the glimpses into this world increase in both frequency and duration. In time, the “place” starts to become familiar….before I go on with this, I need to make something clear. I am trying to describe a place that has no reference in the real world so I can’t put a name or a label to everything. When I say things are not things that have a name in your world, that also means that if I just looked at it, the things in it are unfamiliar to me from visit to visit...so how can it seem familiar? Well once you spend enough time there you start to learn about the place. In a really weird way, its kinda like The Matrix in that most things are almost like things you know, they are just a little “off”. A close facsimile to your world but not an exact replica.
At first, going to this realm is more like accidentally stumbling into a strange pub or bar; before you think about doing it, you are there. At this point though the realm doesn’t really feel like any place you really have any reason to spend time in, kinda like Cleveland. Its just another place on the mental map. In time, you start to find this place makes you feel good or at the very least, doesn’t make you feel as bad as the outside world does. Even if nothing is happening there, sometimes thats preferable to something nasty happening here.
A little more time, a little more exploration and I found that I not only started to like the place, the feelings of warmth, protection, security and maybe hardest to describe, restoration of “me”. This all feels really good in case you need this explained to you.
There is a point you reach where your other realm begins to feel like and in point of fact becomes a very real refuge, a place of solace where the things of this world can no longer touch you there. When your so-called real-world is constantly confusing, demeaning, rife with feelings of pointlessness and yes, danger, this other refuge is a place that NEVER hurts you never stresses you, you do NOT have hallucinations here, you don’t fail at simply daily tasks here, you understand everything that goes on, nothing here leaves you feeling stupid.
Spending any amount of time there, while the things you see and do are not that really familiar, the feelings they create in you are surprisingly similar to each other and familiar to us as people too. For example, Randy and I are really different people and NO we were not separated at birth. Our “realms” or refuges could not be more different. Where Randy sees in his place as open, full of the good things from nature, life, animals and so on, mine is more of a fortress or conventional refuge, more structure than location. And yet for all the differences whats really wild to me is, the places our minds constructed generate the same exact feelings in each of us….this is significant I think.
This also reinforces the idea that we are the architects of our own personal mental refuge, a place we can go when the stresses and pain of the real world become too much and overwhelm us. Something else to ponder offline.
In the process of sort of exploring this place, taking and sharing notes with other patients and interested parties, I learned things that caught me by surprise about this place:
It becomes easier and easier to go there with each trip. Less effort and maybe most importantly, less intent. By that I mean, at first its an effort to go there. In time, you go there w/o really making much effort. TIme goes on more and you can find yourself there without meaning to go. At this point, going there by intent is little more than simply saying to myself “fuck it, lets go!” and I am there.
Time works really different there, which makes going there for a set-time almost impossible. I have tried this. I am adept enough at going to this place on-demand that I have used this to avoid TV shows I can’t stand but am forced to watch, long nasty medical procedures (you know the ones you wish you were ANYWHERE but there), being forced to wait long periods in waiting rooms. I can go to the other place, feel like I have played around there for an hour and when I come back, only 10 minutes have expired. Don’t have this part worked out yet but as you will see, this is not a long-term problem.
Depending on circumstances your existence in this realm can be total or partial. Mentally you are all there in both cases but in the latter, your mind still has some connections to this world and as long as they are there, your visit is never complete and you can be yanked back by whatever that tendril of your mind is connected to. Timers, people, pets anything can keep you sort of tethered here. Sometimes thats good, sometimes its not.
Lastly and maybe most important, once going to this place becomes routine, the novelty of it wears off. Once that happens it actually begins to take on more of a sense of being real and in fact to me, this place can feel more real than the “real world” can, things make sense here, nothing demeaning happens here. You are not an idiot, a lunatic. You are not useless, a burden on anyone. In many ways, in this place you feel more like your old self, the person you worked your whole life to be than you have felt in the so-called real world in a very long time. In fact you may not even remember the last time you felt this “human.”
While there the patient can outwardly appear to be any of asleep, “zoned out” or even intoxicated. Depending on the level of insertion into that world, the patient may seem unresponsive, although prodding can bring me back. The big take-away here is that the patient is definitely not “gone” or “empty upstairs.”
Given everything we have seen so far, it is not unthinkable that others can be taught to reach this place as well. Its not a magic place, some Shangri-La only reachable thru fables; in fact this place is more likely where EVERY so-called zoned out or “gone” dementia patient actually is. I suspect how well they do there can depend on some personality traits but as for getting to and existing in such a place, I am pretty sure thats where we all end up sooner or later.
Now that in an of itself is a big mental mouthful but recent events have taught me a few more lessons about this I wish to share.
I remind the gentle reader that this is a place a seemingly infinite “chill” or lack of stress. Restoration. So when the real world gets bad for us, say if we are in a bad situation where we are overwhelmed with a situation or if we are in a fog in general and are forced out in public or...pick your poison, if it sucks, now I have a place to go, a mental safe-room. Once I found how easily I could slip into this place, I got to where I was not just going there all the time when things sucked, I got to look forward to it. At night, after the lights are off, the wife is snoring, I can just go there for a time, Sometimes short, sometimes long but its like a trip to the sauna at the end of the day. I know I am not asleep because I am doing things while there and when I get back I am awake but not groggy like you are after a cat nap.
This past ten days has really sucked for me personally. I know I am of limited ability so I try to pick my battles in the real world and without going into details, I only have like three things I am still trying to accomplish with whats left of my sanity and I had two of the three blow up (quite permanently) in my face. In both cases, the cause of the fail was purely in the realm of dementia/LBD. Not chance, poor luck or even “shit happens”. I did them, I own the failures but the bad part is, they also own me because I don’t have it in me to try to do them over, not again, not anymore.
And so I find myself where I am today, one foot in a world where I count, I mean something, I am not easily taken advantage of there like the real world, I am not so easy to out-wit. I have one foot remaining in the other world where every attempt to do anything results in failure, you look at what you even CAN do in a day and you weep at what little is left. To a pretty large extent you begin to have a sense that you are simply…..waiting.
Waiting for this world to make more sense or stop being as it is or waiting for the effort of this reality to no longer be worth the effort it takes to stay and fail all the time. At which point the other place, my refuge or Randy’s more pastoral environs looks less like a refuge and more like….a home.
I am having a really hard time ignoring that feeling of being at the end of my rope. My verbal communication skills are such that I have to re-explain what I meant so much I just quit talking. On the rare occasion I forget I am broken and try to talk and feel natural/normal, I foul things up so much usually ill feelings result and the messed up part, there was never anything like that in the original message but what people don’t get is that if I can’t get it out right the first time, I sure as fuck don’t have it in me to explain it a second time with more detail. To expect anything else is to expect me to simply not have dementia anymore, were it that simple.
So from my POV, that place is looking better and better all the time and each failure, each indignity I experience in the real world pushes me more and more in that direction.
Make no mistake: it would take absolute zero effort to slip into that world and simply not come back. No effort or will at all. And I am having a harder and harder time telling myself its better not to stay there….the real effort is NOT to go there at the first (and every) sign of trouble. And I can’t say how long I will keep putting effort into something doomed to fail before I even start.
It is not set in stone or a done-deal….and in fact while the events and facts of the real world push me to m refuge, remember those connections I spoke of? Well connections to people are what my mind holds onto binding me to this place. My caregiver, Randy, a few more but not many. Were it not for them, I would not be writing this on my tablet (LBD broke my laptop, another reason I don’t type as much anymore); I would be there gaming on the rig from hell, no pun intended.
So right now, in all honesty I am at a crossroads. I know which way I *should* go, I know which way I *want* to go, I also know where I may end up anyways. If I vanish from this medium, you will know which I chose. There is alot of real life that is all around us every day but in a end, we are all going alone (and no I am NOT talking death or anything, just that point after you are considered "gone" and before you are room temperature. After that I really don't care.
One more thing about this before I close: I found it startlingly amusing that ...you know how in the movies about people doing dream walking and stuff, they say if you die in your dream you die in the real world...well the opposite in true too.
As real, as fun, as excellent as that place can be, if my body dies in the real world, I am gone there too. Kinda bakes your noodle doesn't it?