This blog is about Lewy Body Dementia from the perspective of two fellows that have it. Think: Beavis and Butthead on dementia.
Serving up the snarky side of dementia since 2018
I Don’t Want to Be the Person I Find Myself Becoming
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.