I’ve been debating for some time whether I should write this post. On one hand it seems whiny and self serving, but on the other if it helps one care giver understand why their LO may recoil at their once so welcomed touch, then it will be totally worth while.
The first part of the person I am becoming I have written about to some degree before. It’s my becoming so short tempered over little things, minuscule things, someone clicking their fingernails for ex. is enough to send me over the edge. And I will snap at that person. Hurtful, mean things come out of my mouth before I even realize they’re in my mind. I can’t stop them. I don’t mean the words that came out and I would give anything if I could stuff them back in and tie them in some dark recess forever. But, unfortunately, I know they’ll be back all to so.
Those I’m fortunate enough to have in my life those who love and care for me understand now what is happening but that doesn’t lessen the immediate hate they feel when I unleash this vitriol. They tell me it’s alright and they understand but I can see the hurt and sense of loss in their face and eyes. No matter the reason, no wants the person they care for most in this world to snap their head off out of the blue. Even if that person is slowly slipping into the darkness. And trust me, I don’t want that either.
Another, and in many ways much more disturbing, new aspect of the stranger I am becoming, is my absolute abhorrence of any physical touch when I even beginning to become foggy. It’s not something conscious but if I’m touched or held or even approached to closely when I’m phasing out/phaseout, I can feel myself physically recoiling. The thought of that touch almost makes me nauseous. It’s not that I don’t crave that contact consciously, I do. But subconsciously the thoughts of it make my skin crawl. And this is so backwards of how I’ve lived my life. My wife and I have especially always been expressive. Touch has always been a means of expressing care to those I cared for and cared for me. For my wife, it’s just another sad, terrifying step closer, and additional proof, that our time is undeniably drawing to a much earlier conclusion than we had ever anticipated. It breaks my heat to see her going through this “freeze/thaw” cycle so often. Once is enough but over and over is torture. To realize you’ve taken an irreversible step forward toward the end, finally come to some sort of peace with it and then be slapped in the face with it again in just a short time, it hurts, it’s tough to deal with. And I hate being the cause of it.
Well, that’s the self serving part, I got to whine and get all that off my chest and lay it out there to make your weekend merrier. As for the other part, I can only hope it helps some of you who are near the end of your rope with your patient/LO, gain just a bit of solace and understanding. And, hopefully, most importantly, some peace of mind.
I hope one and all has a great weekend.
Randy
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I will consider you post a reminder to myself to be more patient with my friend Meg who, as she retreats into another stage, insists on correcting my views and "fixing" my hair and tucking in my shirts.
Dude....I....I guess that I only have the most-worthless of things to add. I think a sort-of life skill I developed decades ago is helping me with one of the problems you describe. I still feel the sudden rush of rage but I am able to side-step most (read: not all) of the usual results of such rage by using a trick I came up with many years ago as a programmer in the 80's and 90's.
This was an age where because of the stereotype of the programmers back then it was not just requested but expected to work insane hours at the end of a project. Back then, the field of software design for the systems of the day was still relatively primative and hitting schedule was sort of a fantasy for many. However the programmers ended up working insane hours to meet the unrealistic schedules meaning 80 hour weeks were not uncommon. These are known as "death march" projects and tend to burn out programmers left and right.
However until you burn out, you are usually stuck working working about half your working hours when there are normal corporate droids milling about, doing the things that corporate droids did...and the other half is when they go home and you are still there working. One thing that long stressful and most importantly, sleep-deprived hours can produce is almost like a paranoia; people you would normally look at and thing "So What?" you now view everything they say with something akin to "What did they mean by that? REALLY?" It becomes easy the longer you go without sleep or rest while still keeping your brain turned to 11 to mistrust managers, coworkers and more. I recognized this after going through it a few times, and then after the death march is over and you are more rested and "normal" again, that same suspicious manager or co-worker you were keeping an eye on before now seems their normal only partially-offensive self. But when you are in the throws of it, its almost impossible to react to it correctly.By the end of a deathmarch project, most coders are ready to take hostages; some even left the profession entirely to go be goat-farmers in Montana....
So a habit I developed is this: everytime someone started to seem dodgy to me I would ask myself A. Am I on a deathmarch? and B. I remind myself that last time they turned out perfectly fine and as real and justified as the anger/mistrust feels at the time, I was in time able to convince myself that with sleep that person will seem fine again. Simplistic as this is, this actually worked for me for years.
Why tell you? Because now, when I get these sudden rushes of rage, frustration, things that make me want to lash out, I try to remind myself that its just me, the world around me is fine and that I just need to accept I just don't understand everything about the situation or misunderstand/misinterpret things being said. Doesn't work every time like it did in the death marches but it works more than it doesn't. Its unexpected to me but once I am able to accept the part that the anger is a product of my mind and knowing as I do that my mind is outside its warranty period, the anger/rage/frustration starts to recede. Its not instant but it is observable.
The problem of course is I am using/relying upon a method I made almost second-nature (only way I remained employed thru the dot-com bust), this advice may not be helpful if you are starting behind the 8-ball. Perhaps its enough simply to know its possible; the only other options for rage involve meds that make me more of a potato than I normally am.
As for the other problem, that one I am not too sure on, are you referring to any physical contact or more....amorous advances? The former I have no clue on but the latter sadly I do, fog and everything. Theres alot rolled up in this but at the end of the day, I remember some famous psychologist expert on the subject that states something to the effect that 90% of everything in the boudoir is mental, not physical and to make that remaining 10% work, you need all of your brain working, firing on all cylinders....and at least with the way the dementia hit my head, that is really HARD. Wait that sounded bad...I mean if the occasion comes up, it may be happy moments for the partner but for me, its like suddenly being forced to manage a company or something obviously outside of my capabilities, I just get so overwhelmed and not long after than I forget I was there and starting thinking about a bowl of Cheerios or something...
Of course if you WERE just talking about general physical contact, well then I just embarrassed myself for no good reason. Been that kinda day and its 08:45am...
Hey, yeah, I get the it’s me not the world around me deal. And for the most part I am able to feel the pressure mounting and remove myself from the situation. But sometimes, I don’t even realize anything is wrong until I explode, like I say, it’s out of my mouth before I realize it’s in my mind. Then I realize that whatever the inconsequential act was, it has my tension to an explosive level. That’s what I’m really struggling with.
As for the other, sorry dude, you embarrassed you’re self for nothing! Just kidding, that was a really helpful response. But truthfully, I was referring to any physical input at all. All I want to do is cocoon myself in my recliner. That seems to be my safe have at the moment when I’m at my worst.
As for that kinda day, gotcha. Think I finally “slept” around 10:30 am.
Actually I totally get that too; while the physical touching is not a thing with me, the need for what I think of as a "safe room", a place where I can shut down all of the external input thats overwhelming me, no ringing phone, no extra people, things going on, etc. IOW stimulii is turned down to about a 1 and thats what I need to recharge sometimes. I have my safe room, you have your "safe haven" recliner and Trump has his golf courses as a safe place; people with dementia need that I think or maybe more to the point, I worry what I would be like if I didn't have that safe place to run to....it helps us deal with the other 50% of the time, if that makes sense.
I'm going through the same thing... a stranger to myself. This feeling comes and goes, but lately it just stays... so much for the January thaw. I know that its hard on spouses and families, as they watch us slowly disappear... just a shadow of our former self. Here's the thing, I don't care... but I do?
Daddy; to paraphrase the bard: To Care or Not To Care; that is the question before us. You ended your phrase with a question mark, indicating query. As I have often said, all the answers in life can be found in movies if you know where to look. Hey I am crazy and say weird stuff all the time. In this case though it was the great sage of the 70's Harry Callahan (The Enforcer I think) who opined that "A man has GOT to know his limitations." Now Clint meant that in a derisive manner but for folks like us it can be gospel (small "g") because we can add that addendum: anyone who expects or demands that I exceed those limitations can kiss my...attitude.
The thing is, you only have the brain to work with that you have, and part of having a full-working brain is being able to control impulsive feelings/thoughts/moods. I am not saying its totally great and OK for others around you, simple suggestion that you don't spend alot of time kicking your own ass for not being able to do something you can. Its like making a blind person read an eye chart to get a disability check....
Daddyt, your last line sums it up very nicely. As time goes on it matters less and less to me. That’s one of the reasons I dread what’s to come more for my family than I do for me.
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