Is it them or us?

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Is it them or 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



Comments

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Thank you so much for sharing. My husband has LBD and I am in constant search of understanding his perspective. Reading your stories has helpd. So many things are the same with him. Sometimes he can explain how he feels most of the time he can not, So again thank you! Your perspective helps those of us trying to care for our loved ones understand just a little bit better. I wish you everything good in life.

Feb 20, 2017 - 9:33 AM by Trina J

Trina, sorry, this happens..the cognitive bit of LBD slides up and down on me, totally FUBARing my memory. The key thing, the reason why I was sad for me is that since I didn't know there was a real person still there and not the caricature of a person as displayed by her symptoms, I spent, no wasted what time I had with her talking to her symptoms and not trying to reach *her*. I think she would have loved if someone did that. And that was the point. Sorry. Hey, I am periodically nuts so....

Feb 20, 2017 - 3:35 PM by Jeffrey C

Trina, cheers for the encouragement and kind words. The reason I write this is in a probably weird karmic way seek redemption for not understanding my own Grandmother when she was in the worst stages of Alzheimers (although knowing what I know now...). True I was young, definitely not told anything more useful about it by my family than Grandma had old-timers disease. All I had to go on was what she said and did. Some of it freaked me out because she was very casually speaking with dead people. M. Night whatsisname figured out that was scary stuff too. The thing is, they (family) just let her roam around free on the farm; with the clarity of 20/20 hindsight and a little education on the matter I feel deeply ashamed of them...and sad about myself. Not for now but ...the way Grandma acted, it seemed to me that she was really "gone" and so how she drifted through each day didn't matter to her much; pretty much everything she said was considered crazy talk and much was...but now I know there was a person in there, trapped in her own mind. My Grandma came out of the depression, zero schooling so probably didn't understand what was happening to her; if the family told me little, they told her less. And I know how isolated and lonely you can feel with loved ones all around that you cannot really connect with....they don't take what you say seriously (and why should they? in their minds and in time, yours as well) and depending on the damage it can be tougher and tougher to follow whats going on, furthering the sense of isolation. So now its my turn, to paraphrase fellow nut Randy C. Its nothing like what I thought and I am just getting started. That was the thing that really surprised me about this...the fact that even though I am still in here (writing is vastly easier then spoken-word for me) a lot of who I was, while still here never gets expressed because to look and listen to me, I could see where folks would soon be treating my like my Grandmother...I know in time I will in-fact be a houseplant but until that happens there is a lot of me left and if this helps even one person ....see over the wall I guess you could say, I would feel a little redemption.

Feb 20, 2017 - 3:32 PM by Jeffrey C

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