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Next Stop: The Undiscovered Country....






I am not even sure how to open this. It will be unlike anything I have written
before. For some this may bring fear and horror, for others it may represent
hope or at least a sense of hopefulness. Is hopefulness a word? Well it is this
morning.

Much of what we patients write about here typically involves trying to describe
what the world looks like on the other side of the mirror, perhaps in an attempt 
at building a common understanding between the caregiver and the patient. This
will not be such an article. That said, this may be the most important thing I will
ever write.

As of this writing, a common assumption about dementia is after it passes the
point of Mild Cognitive Impairment (if I ever meet the person who coined that
expression I will kick him or her right square in the seat of their pants) is that 
the patient is basically mentally "gone", "checked out", etc. This is convenient for
others like caregivers so they might feel less bad about what their charge is
going through; in fact it may sooth them in some fashion to think that literally
"nothing" is happening behind the patients eyes, and as long as nothing was
happening, nothing bad was happening either. I thought and assumed this as
well until only very recently. Part of the problem is, the people who have gone
past this point are or cannot talk and therefore cannot relate or relay what
happens there. So no one, not doctors, authors, nobody knows for sure what
happens. You may notice the sharpest minds don't even hazard a guess. Where
is Isaac Asimov when you really need him?
Since being diagnosed with LBD and having a decent clue what is coming WRT
to the outwardly-observable symptoms, I have been conditioned to dread the
delusions and hallucinations, the isolation, the inability to have much if any
control over my life from then-on, etc. You will find no reliable information to
dispel or mitigate that threat anywhere. I have been trying for the sake of others
to embrace the horror that the future might likely bring with as much stoicism as
I can muster but when the only major events left in your life is to go crazy and
then die, well there are only so many ways to shellac that particular turd of an
idea.

A Revelation: The Undiscovered Country
I want to present to the readers here a totally new (to me) concept or possibility.
I want this to spur discussion if possible because the most truth will come from
us collectively, not any single contributer to the discussion. I must first apologize
for swiping the term Undiscovered Country from a Star Trek movie (who swiped
it from Wllm. Shakespeare who probably copped it from someone else we will
never hear of) but the term fits as well as any I can think of.
My plageristic tendencies aside, I am now of the tentative understanding that
what happens after the MCI phase is done isn't the "end" but rather it just might
represent steps in a completely new journey in the aforementioned
"Undiscovered Country". My reasoning for this assumption is pretty simple, as is
all of my reasoning these days. Consider the following points:
* One common complaint of dementia patients is perception of time goes
straight to hell in a hand-basket. For some its mild but others with almost
bizarrely-bad. It might be easy to fall into the trap of thinking "well the screwy
time is just in his head so it doesn't really matter to the rest of us." As true as this
might seem on the face of it, I would also remind that Einstein was considered a
pretty smart cookie when it came to the concepts of time and he was absolutely
of the conviction that the perception of time was an absolute reality to the observer.
* One important thing I would like to point out for those with functional, reliable
memories is that memory loss doesn't appear to us/me as missing time, or
missing records in a database; its just gone and as such, the events I do recall
before and after the missing time are seamlessly joined in my concept of what
happened or didn't happen. What this means is I have no sense at all of the
missing time and only find out out it when others tell me. Now when time is
missing in that fashion, time for me appears to be moving much faster than
normal. Think of it like this:
Say for example you contracted some odd sleeping illness that caused you to
randomly sleep completely through one day in seven. From your perspective,
weeks will become six days long, months are now maybe 25 days and years a
little over 300 days long. If you consistently slept through two days per week,
weeks become days, months are just a handful of weeks and years are now a
fraction of what they were. And from your perspective, there isn't one thing to
dispel that notion of reality.
Dementia patients don't miss whole days or anything with round numbers like
that; think of them as micro-slips or something...but they add up to the exact
same effect. On top of that, the time problems are not static; they are in fact
increasing in frequency and duration, which means not only is time moving
faster for me, it implies that the time compression will continue to accelerate
until....I don't know what lies there....
So I started thinking, if this is changing my reality right now (and while not great, 
losing time is a relatively benign symptom compared to the previously-
mentioned delusions/etc) then what other relatively changes to my reality might
be in store for the years ahead? If the time element alone will continue to
change my reality for the rest of my life, I can see a reality awaiting me that
while it may be bad or scary, there is also the possibility and even likelihood that
the reality awaiting me might simply seem to be like another place, another
country even. For me, it will seem as real as yours does to you. This to me opens 
open not simply the chance of avoiding or side-stepping a hellish existence but more
 importantly it could also represent a new and perhaps
final adventure to explore for me. I am pretty convinced now that no matter how
things may appear on the outside, I would be willing to bet that I will be busy and 
doing things within the confines of my very own "undiscovered country".This may 
not work for everyone; I think it depends on how you are personally
wired. When traveling the world I have observed two basic classes of tourists in
a foreign country: those that embrace where they are, find the good or
interesting and enjoyable points. The others seem to spend all their time
complaining that this country isn't just like home, they don't have this or the food
tastes funny or whatever brain-dead observation that seems to effortlessly
escape their lips. Yes, I have always had a dim view of such tourists and when
they would approach me or my wife when traveling, we would pretend to forget
that we spoke English so they would leave us alone. I doubt this is exclusive to
American travelers but we do seem to do a better job of seeming idiotic when
abroad.

The thing of the thing as they say is I have always embraced new places,
always curious to find what they have to offer that I have never seen before. I
think it would take exactly this kind of attitude to get the most out of this
undiscovered country, that is if there is truly anything to find in the first place. I
think the other kind of people, when faced with something like this will spend the
literal rest of their lives trying to scramble back or cling to a reality that is simply
 no longer theirs and never will be again.
So rather than dreading the future, I am cautiously anticipating it as a new place
to explore and maybe in some twisted fashion, even learn from. As my wife: I
have sought adventures and places to explore my whole life and there is every
chance that this just might be the grandest adventure of them all. As it is right
now, every day is a magic show: people and things appear, disappear, and so
on. I can only imagine what the David Copperfield-level changes to my reality
will bring. It could be scary or it just might be cool as all hell. It is not illogical to
think that this realm might not be bad or good, evil or nice, it simply is what it is,
and the evil or good part comes from how the visitors to this realm embrace it or 
allow it to embrace them. Think about it: the only reason a hallucination or
delusion is scary is if its of a scary thing and those are the ones we all hear
about. You don't hear about the Alzheimers patient having the hallucination that
he is happily fishing at his favorite watering hole or working on a project in his
workshop or if she is hallucinating she is working in her garden on her beloved
roses....those folks are just off having a good time, no pain, no stress, no
anxiety. In the same way the average person doesn't have nightmares every
night, there is reason to think even if the hallucinations and such come that they
are destined to be bad or distressing. There are many instances of LBD patients
who can joke about their delusions and hallucinations with their caregivers; I
would state these are the idea candidates to explore this undiscovered
country....Questions:
* If this is possible, what sorts of things might be done now in preparation for
that? If I am going to live through it and I am destined to live through it, why not
make it the best reality that you can?
* This is a lot of supposition about a possible future reality that I can not support
with first-hand observation because everyone who has gone to this place ahead
of me either cannot or simply don't talk about it. Perhaps where they are and I
might be, there simply are not words adequate to describe there. Already that
problem visits me on a regular basis; so many times am asked about the weird
stuff in my head and I usually end up giving up because I can't describe it in any
way that makes sense to a normal person. So the follow-on question might be:
how can I or anyone "report back" about what happens? I am not thinking
seance or anything like that, I am too....logic-minded for such things. However I
think it might be amazing if someone still alive could somehow send back
messages in a bottle as it were, with the hopes that some of these messages or
reports wash up on the shores of reality everyone else shares.
* I wish personally knew a decent science fiction author. Doctors can't tell you a
single thing about this new reality we will be exploring; they can't. Aside from
being stuck in the world of provable "facts", they don't have the mindset to allow
their imaginations to really speculate on what comes next for us. A scifi author
on the other hand is perfect since they take the science fact of today and try to
follow its evolution in the future to see what the future might bring or represent.
There have been tons of books about crazy people but none I have found try to
really detail what the world of a crazy-person is actually like. This is less a
question than a wish....
* For me, knowing (assuming with certainty) this is there takes alot of the fear
and trepidation out of things for me. It is my hope the idea I am not really "gone"
but on a different adventure might lessen the sense of loss in my caregiver
when I can no longer communicate well enough to be understood. I am not lost,
simply in my own world, speaking as well as I ever have. I can't word this part
right but if the roles were reversed, I know I would feel 1000% worse if I felt my
wife was just a vegetable versus she was simple gone somewhere else living
life. I would still miss her but knowing she was at least somewhere not hostile
and maybe even comforting is a pretty powerful alternative.

Jeff


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