Me, My Dementia, And What I Write

Miscellaneous and Personal Stuff I Must Share
1

One of the manifestations of my disease is inappropriate behavior. When you read about about the symptoms in Stage IV, the behavior occurs in public and that happens with me, but not as much as with the written word.

I know why this is: I’m not as gregarious as I was before. I can’t just hop in the car and drive myself to a movie. Matter of fact, I can’t drive anywhere anymore because of the accident I caused last year that almost killed 3 people, me included.

So the only opportunities which present themselves in public are when we go to a restaurant, a family function or if we have people over. And except for a few isolated instances (“off color” jokes, laughing at inopportune times, and even sitting in a corner sulking) I’m okay out in public. Friends and family know beforehand what may or may not happen, and the situation is “maneuvered”, for lack of a better word, around this eventuality.

But then there’s here.

Here on The Dope and here in my little office there’s no one but me to keep myself “in check” when I’m on the keyboard, and it’s like I’m a racehorse just being let out of the gate: the ideas, the (to me) humorous thoughts and the inappropriate language race out of me onto the keyboard and into the ether eventually winding up here.

I know why this is, too; I’m afraid that if I don’t get this out of my head and onto “paper” asap, it will leave me within a very short time and this cannot be allowed to happen. I forget too many things too quickly anyway and here’s a way to save it. By sharing it. With you. I tell myself that this is my intent.

And so I let it out. Just as hard and as fast as I can and with little or no censorship. The correction of a misspelled word, grammar and sentence structure are about all.

Finished. Did you forget anything? All those thoughts pretty much in order and easily understood?

“Yeah, yeah YEAH, dammit! Turn loose of my button stabber, damn you!”

SUBMIT

And there it goes. Arrives here at SDMB to lie dormant until someone chooses to read it.

But more and more often it comes back here to my office. I know it does, because I see its ghost and it’s telling me I had better damn well reread my post which, I at first thought was so articulate, (to me) humorous and hard-hitting.

So I do read it again, and as I sit here and cringe at my words wonder (out loud sometimes) how I could’ve have written something so vulgar as a reply which the OP didn’t expect or maybe even wanted to read.

This happened today with the “do you guys miss the toilet bowl and hit the wall?” thread." I could have written my post in a hundred different ways, but no, I had to embellish it with vulgarisms having nothing to do with the answer expected.

Oh, I know: it happens to some of y’all as well, right? And I shouldn’t beat myself up over it?

It bothers me, guys and ladies, it really does, and that’s why I wrote this: to explain the processes and the outcome. If I’ve made you uncomfortable or upset, I apologize. A lot of the time it happens to me as well, but it happens too late and I don’t know how to fix it. (Genie out of the bottle, etc.)

Do you?

Thanks,

Bill

2

I love all your posts Quasi.:slight_smile:

3

Bill, you are much loved sweetie. We all understand. Please don’t worry about it. (((hugs)))

4

I did not read the post you mentioned, but I do not think that you should be so hard on yourself.
It sounds like writing your thoughts here, is sort of therapeutic stimulation for you.
From what I know, some people with later stages of Dementia loose interest in communicating with others.
If posting here is more comfortable than some social situations you find yourself in, then you are lucky to have found an alternate method of communicating and socializing.
I think you express yourself very well, from the posts that I have read, and It must not be easy going through the changes you are talking about.
I believe that It shows functional ability to communicate as well as you do, and I respect your efforts to hang in there, and work along with the changes that you are going through.
I have heard that other great therapeutic stimulation- can come from recalling, and writing about past events and memories.
Also, remembering lyrics, and music, well enough to sing some of your old favorite songs.
Be good to yourself.:slight_smile:

5

Quasi, that you’re here expressing yourself is the important thing.

People here make themselves uncomfortable or upset all the time by posts on this board - don’t think you’re so special! :stuck_out_tongue:

6

Quasi, you are one of my favorite posters here and I’ve even shown some of your posts to my wife, who thinks this whole SDMB thing is weird, and she liked them.

I also appreciate the honesty with which you have written about your health, I know it can’t be easy.

7

What’s so hilarious about THIS thread is that I reread IT, and had the same reaction: “Hell, man! I can’t believe you wrote that!”:D:D:D

I reckon it’s like water: seeks its own level, and it’s gonna come out somewhere, whether my head’s up my ass or in its proper position!

Thanks, y’all, for letting me whine a bit. I do it very little in real life/time and I promise to keep it at a minimum here, though it’s great to have friends who’ll let you to a degree and kick your ass when you go over your quota/content!:wink:

Enjoy your weekend, and PapSett, if you’re on the road with pet transport, please take care of yourselves.

Thanks

Q

8

If you’re really worried about it, why not compose a signature, that offers a disclaimer about your condition and chance that you’re wildly inappropriately overspeaking your point, apologies begged, patience appreciated, etc. Something short and pithy.

I, personally, didn’t read the thread you mentioned, and don’t think you have much to worry about. Do try not to worry about it, that’ll only make it worse, I’m sure. They are only words on the internet, after all, we have tougher skins, than you imagine, broader shoulders, and oceans of understanding, to tap into. Please don’t worry.

9

You don’t seem any different from the average poster here. Maybe you don’t have dementia, just Dopementia.

10

I’m very fortunate that in having opened up about my mental status, the Doper community are pretty much all aware that I may sound way off the wall at times, and I appreciate that a lot.

Be that as it may, one of the things I am struggling to keep intact as much as I can is being cordial and as we all know, it’s difficult to gauge a person’s personality on the web.

I’ve made no bones about loving satire and when I see the opportunity, I use it and take a lot of poetic license with it. What I often forget is that it isn’t everyone’s “cup of tea” and I shouldn’t force them to drink it.

At the end of the post in question, I believe I came off sounding like a smart-ass, and I noticed it too late to make any editorial changes. When I put the whole thing together, it ALL sounded “smart-assed” to me, and if the tables were turned and I as the author had received that response, I’d be pissed - satire be damned.

I need to temper my writing a bit and consider the person on the other end a bit more. My short term memory loss shouldn’t be an excuse, so there’s now a large font reminder on the rim of my screen: STOP!!! ARE YOU SURE???.

Thanks

Quasi

11

:smiley:

12

I think Trip just coined a new word for the Lexicon! :slight_smile:

Q

13

You’re a good man, Charlie Bill…

Or somesuch expression.

14

Quasi, I won’t speak for the rest of the Doper community, but I am glad you’re here and a member of this community.

I’ve been a caregiver and a hospice worker my entire adult life. I’ve seen hundreds, probably thousands of people with dementia, and a huge percentage of them simply give up, or refuse to acknowledge it. You obviously have done neither, which to me shows both an understanding of your symptoms and a willingness to fight.

Having said that, your posts appear to me to be reasonable, thought out, and on-topic. There are some bat-shit crazy posters on this board, you are not one of them.

Again, I am glad you are here, and your presence on the SDMB is a positive one. Don’t let anyone – including yourself – convince you otherwise.

15

I think it’s wonderful that you’re sharing your experience with us. I hope it’s helpful for you. Any of us could develop Alzheimer’s, and I, for one, am extremely interested to learn what happens when a very intelligent caring person faces the disease openly and honestly.

Please keep the reports coming. You’re dong something very significant here. You’re already a legend, but this solidifies it.

However, you’ve got a long way to go before you score a spot on the List of Top 100 SD Loonies.

16

I think you’ve been very brave to post so openly and honestly about your condition. :slight_smile:

(by the way, I think my PM thing is working now, if you want to PM me about your writing!)

17

Hey, Quasi. I don’t know if you keep up with the MMP, but the whole last month has been me dealing with my dad’s diagnosis of Alzheimer’s. It was only given as an aside when the nurse needed a diagnosis to yank Dad’s driver’s license after he had a trans-ischemic attack. Maybe it’s Alzheimer’s. Maybe it’s vascular dementia. Maybe it’s both. Whichever way, it’s been a very ugly rollercoaster of a month.

If I could make a wish - other than making Alzheimer’s vanish forever - it would be that my father had one-tenth the self-awareness and honesty that you did. Everything is harder because he will not acknowledge what’s going on, not to us, and not to himself. Everything is more painful, because when he loses things - like his ability to drive, his wallet (we’re on loss #4), his ability to dial a phone - it’s a blow to his personhood, not the symptom of a disease. I’m not allowed to help or make his life easier, because then he’s not a man.

I wish I could introduce you to him. I wish he could see how you’re handling the progression of your illness - with wit, humor, humility, honesty, and strength. I wish he could see how much easier it would be if he’d just let others help.

So, not that it probably helps you at all, Quasi, but you’ve become the gold standard of how I think people should handle Alzheimer’s. I just wish my dad could be more like you.

18

applauds
My mother doesn’t have Alzheimer’s and she refuses point blank to accept or admit that there is something wrong with her. Last night she wouldn’t go to bed because she was trying to break up two men fighting (a photo from a rugby match, in the paper). I eventually got the paper from her and got her to bed. She kept on asking if those men had gone? I kept telling her they had. She wouldn’t believe me. She then decided that I was insane.

Sometimes I feel like I am…

19

Not driving this weekend, I was supposed to monitor a transport today, but they found a long-distance driver to tsake the dog all the way, without hand-offs, so my monitor ‘job’ got canceled. So I’m taking MY kids for a nice long walk with one of the other Above & Beyond ladies! And yesterday, did my stint at the horse rescue, so I’ve put in my animal volunteer work for the weekend.

“Work” never felt so good! :slight_smile:

20

I don’t want this thing to be my “badge”, friends; somehow silently indicating it’s okay for me to be a dick because I’m batshit. While I can sit here and think clearly enough to write complete sentences which get the meaning across, then that’s how I’d like to be perceived. That’s the only way for us to be the kind of friends I need us to be. Otherwise it’s all a farce.

I don’t have a clue how and/or when the next “step” will present itself, but I sure am glad y’all are “taking the ride” with me for as long as we’re all comfortable with it. And you know I’ll be there for any of you who need me. Matter of fact, we (D and I) would very much like to be needed and will help however we can.

At the risk of sounding like a teary-eyed drunk at our favorite bar, I love you guys. :slight_smile:

Bill

PS: @ Corgaigh. While IANAD, it sounds like your Mom may be “sundowning”.