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 For demetia patients ONLY: Is it them or is it us? 
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Joined: Fri Mar 10, 2017 11:36 am
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Post For demetia patients ONLY: Is it them or is it us?
I wish the world would make more sense

or

Is it them or is it us?


Caveat: The absolutely-bizarre nature of trying to write something of
worth when you have dementia and thinking there might be something of
value in it still blows my mind, not that it needs much help. So if
anything here rubs you the wrong way, just remember this is the
perspective from the captains chair of the USS-Dementia and take it
with a 50 ton grain of sodium. Hell half the time I can't even control
what comes out of my mouth.


This is something I need to write down now, at this particular stage,
because of the BFO (engineer parlance for Blinding Flash of the
Obvious or the answer you should have had all along) that dementia
isn't like a switch being thrown, you don't go to sleep with a job,
family, responsibilities and wake up with a lost mind, no job, living
on the government and basically have the same responsibilites as a
house-plant. Same conversational skills too I imagine.

No it happens a little at a time, different in each person with some
overlap but I am pretty sure no two stories would be exactly the
same. But if you generalize just a little you being to understand what
life is like during what my speech pathologist calls my MCI or Mildly
Cognitively Impaired phase. My meager understanding is it can last for
as little as 6 months or as long as 5 years, give or take. So its over
this long period of time where reality seems to start breaking down
little by little. How well each person adapts to that is a discussion
for another time.

For me it started with....gosh thats tough; memory was a goofy thing
and since my job/skill was problem-solving, I started leaning on that
like a crutch so when faced with something I had supposedly known
before and not remembered, I would mentally go through the
re-engineering of that item in my head, basically re-inventing the
wheel and using that as memory as to how some bit of software or
computer hardware worked. Sometimes I was right and sometimes not but
it worked for a good while. Then the inexplicable falling (and all of
the frankly brain-dead testing for inner ear injury that pursued) and
going into "fugues" at work, getting in the middle of a sentence and
suddenly being unable to complete it, the simplest of things that
junior programmers were capable of I was having to struggle with
suddenly. Used to be me teaching the young 'uns. And so it went and
working in San Fransisco involves a LOT of public transportation so
the falling down bit was worrying and I worked from home for
months. All of this part took about a year and at the end I was forced
onto STD to find out what was wrong; had a serious case of denial
then. My logic seemed simple: if I failed to function then my home and
family will fail to and I will have lost everything I worked towards
(happiness, family, rewarding job, friends), therefore logically I
cannot be malfunctioning, therefore I just have to try harder. So I
did and nearly killed myself working all the hours trying to keep up
with something I had no hope of. All this time people around me
thought I was so smart and inside I knew waaay different......and it
scared the hell out of me, didn't know where to turn when everyone
starts with the preconception that you are better than alright.

Then time started screwing with me badly; we were in the middle of
frankly a war with CIGNA insurance because if this is hard for a
doctor to diagnose, the insurance company has 1,001 outs for getting
out of paying. It took all we had, nbearly lost the house but
eventually with luck, spunk and determination we prevailed. But this
took another year of me watching things fall apart from the inside and
the worst is the aforementioned problem with time. Because of that it
seemed like things were going wrong more than they were but also it
was taking an eternity it seemed to figure out what was wrong. I was
seriously looking into an insane asylum at one low point. I think when
my perception of time got totally hosed; thats how it felt but was
more likely small gaps in memory and if you don't remember the time,
it didn't happen in your reality. This can lead to pain, anger,
frustration but in my case it was surprise, absolute, unvarnished
brutal surprise. One minute I am walking to the bathroom; the next I
am on the floor with a skinned knee. The little bit of ouch is there
but nothing like the case of surprise I get to find myself there. Or
thinking I am walking to the kitchen and suddenly (in my reality,
*instantly* there is a wall in front of me and I have no chance to
stop the momentum and bam, into the wall, cabinet, etc I go. and
again, the most overpowering feeling is one of utter surprise. That
happens too much and you really do start to question reality and since
you have faith it that, your own sanity.

Another year of .....shall we say underqualified doctors and finally I
got to the Cleveland Clinic and they got me more or less sorted
immediately.


All of this is to say I am where I am today (good cycles with
medication like now and bad ones that leave burners going all night,
water taps flowing until flood, stuff like that) but that it took time
and has been pretty gradual. And with all this going on (and here is
where only another LBD peep will understand), it really does feel like
your reality is being chipped away a little at a time. This is a time
of compromise, where you eat what you are served instead of what you
thought you ordered (or could not speak and nodded your head at the
first thing the waiter suggests)(I don't go out to eat much anymore;
in the words of the immortal BB King, the thrill is gone). You do what
everyone else is doing instead of doing something of your
own. Planning things is almost impossible. Not to say you are hopeless
but there isn't alot of hope. I mean, for what (with any practical
chance of it coming true in the time you have). Having worked with the
FDA and the pharmas in the past I can speak for certain that if a cure
was invented this second I would be dust before it hits the market. I
am a pragmatist I guess but I consider using the time I have pining
for something that I know for fact is out of reach is the worst waste
of time there is. And right now, time is a precious commodity to me,
perhaps the most precious. Not until I die; by then I will be beyond
caring. No, when I finally cease to be me and achieve official
house-plant status. That is what I fear and if anything fight against
the most. Because here is the bottom line: if I can at least control
how this goes from sane to crazy, even a little bit, then for a time I
will still have a semblance of control over my life. You have no idea
how comforting that can be when so many choices are removed from your
options.

In the words of the great sage Shecky Greene, I told you that story so
that I could tell you this one...

This is the point of the post/story/whatever. If you understand the
above description of life at all you will know this period of time is
a little tricky for us folks to navigate and if I recall one of the
main things people can do to help folks with dementia are things like
sticking to routines, etc. The more "normal" you can surround us with,
the better. It helps, honest.

So at this point you know you are no longer at the top of your mental
game or whatever and you open the news to find story after story that
makes absolutely no sense WTF these people are up to or why they are
doing it. Whats going on in the country may be good for someone but
its hell on people in this state, let me tell ya. I almost stopped
looking at the news because I kept having to ask my wife why this and
why that. I can no longer tell where my "crazy" leaves off and the
current brand of "crazy" picks up. Its a blurry line indeed.

YMMV
Jeff


Wed Mar 15, 2017 1:37 pm
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Joined: Sat Mar 04, 2017 10:02 am
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Location: Near Fort Bragg,NC
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Post Re: For demetia patients ONLY: Is it them or is it us?
Thank you Jeff for the optic of what you went through. I know it was/is even tougher for you to then what you wrote.

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Jim


Thu Apr 13, 2017 7:34 pm
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Joined: Fri Mar 10, 2017 11:36 am
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Post Re: For demetia patients ONLY: Is it them or is it us?
Jilytibrme wrote:
Thank you Jeff for the optic of what you went through. I know it was/is even tougher for you to then what you wrote.

Jim, you and Randy are the only two I know who will understand this but I make most of what I write pretty PG. Not the subject matter or language (I am an ex soldier and hacker and worst, a catholic school student. My language has been and remains not fit for TV) but rather the actual reality of it all. You gotta hold certain things back; the reasons are boundless: we want to spare our SOs, we want to hide the incapacity we feel, etc....but if..."normals" for lack of a better word (hey I have documented aphasia so there) actually knew what this was like, *exactly* what this was like they would go running for the hills. Like making sausage, more fun to eat than to watch being made. So I only let out enough "truth" to make the point but you know yourself, when enough wild and crazy or just creepy stuff goes on in your head, stuff you don't even have words to describe, when someone asks how its going...you answer "OK" because the truth cannot be adequately explained. It got to be a routine for me and my speech therapist. I show up, he says hows it going today, I always answered OK...but after three sessions of that I had to explain, I am feeling OK for various values of "OK". For example, OK to me most days means I actually accomplished something, I didn't fall, I didn't break something etc. Got through the day without screwing up too badly. Some days, "OK" simply means I can say the word "OK" without really attaching any real meaning to it. The point of all this being, the stuff in our heads isn't necessarily ready for prime-time. I have been advocating the PTB to start a section just for us where we don't have to worry about explaining things that other patients understand without question.


Thu Apr 13, 2017 8:36 pm
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Joined: Sat Mar 04, 2017 10:02 am
Posts: 35
Location: Near Fort Bragg,NC
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Post Re: For demetia patients ONLY: Is it them or is it us?
Jeff,

Yep, I hear yeah. Good willed folks ask me how I'm doing and I usally say "good" cause explaining would think I was making stuff up or crazy....lol. I did explain a few times when asked....I went back to them and apologized for dumping all the stuff on them.

But the way, I hate writing due to loss of spelling skills, I have trouble with simple words sometimes. At work, before retiring I was writing an operational order that contained the word "fatal", I spent 45 minutes looking it up, finally called my wife to spell it, to embrassed to ask coworkers. That has become more frequent. On my introduction I will write more of my story, you can't make that stuff up.

Happy Easter guys

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Jim


Sat Apr 15, 2017 9:04 pm
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Joined: Fri Mar 10, 2017 11:36 am
Posts: 135
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Post Re: For demetia patients ONLY: Is it them or is it us?
Jilytibrme wrote:
Jeff,

Yep, I hear yeah. Good willed folks ask me how I'm doing and I usally say "good" cause explaining would think I was making stuff up or crazy....lol. I did explain a few times when asked....I went back to them and apologized for dumping all the stuff on them.

But the way, I hate writing due to loss of spelling skills, I have trouble with simple words sometimes. At work, before retiring I was writing an operational order that contained the word "fatal", I spent 45 minutes looking it up, finally called my wife to spell it, to embrassed to ask coworkers. That has become more frequent. On my introduction I will write more of my story, you can't make that stuff up.

Happy Easter guys

Happy Easter back atcha. The problem is the fact that most people are trained from a very young age to inquire about the health and well-being of others, a societal courtesy with the expectation of an equally perfunctory response ("I am fine, OK, etc). So when they get a very real and visceral answer from someone who actually has one (us) they have no idea how to respond or even process what we tell them. For them, its a little Too Much Information.

Still, I wish the medical profession would realize. This may sound egotistical but I know for fact that I am a good person...want to know how I know that for certain? Because I have expressive aphasia, makes it hard to say what you want or mean...and when my caregiver and I are in the doctors office and the nurse tries to ask me questions, the aphasia is explained. It is at this point that the nurse actually said to me that yeah, she has days where she doesn't feel like talking to people either. I am a good, a very good person because I did not stand up and beat her to death with my cane. That woman avoided assault and battery that day. I expect less of the public which is why I rarely go out into it anymore but the medical people are SUPPOSED to understand....sadly, a non-trivial number of them simply do not.


Sun Apr 16, 2017 8:31 am
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Joined: Sat Mar 25, 2017 1:32 am
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Post Re: For demetia patients ONLY: Is it them or is it us?
Awesome restraint Jeff, not sure I could have managed it!
Randy


Mon Apr 17, 2017 7:26 am
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