Monday, May 19, 2014

Crossing That Line!

I believe that we have covered this topic before, but I feel too many people still do not get it, understand it or want to accept it. There comes a time in dementia when we the recipients of this wonderful gift reach a point of leaving our current reality. I call it crossing that line. I hope that i personally am gone by that time or have enough for thought or feeling to leave before it comes. You see many still do not understand the time between Early Onset Alzheimer's( like the medical profession even has the slightest idea when that reall happens) and Later Onset or the End Stages. Those are all that are covered in the media or what people think of when they hear ALZHEIMER'S strikes again.
I cannot tell you how many have written me emails and called me and personally met with me and said, mom, dad, wife, husband, etc., hell they were fine even after the diagnosis for a number of years and fine this day and the next were all fucked up and knew nobody or anything around them. Yes it happens that fast in many a case. A fellow co-worker of my wife, mother or mother-in-law, just took that journey and he asked Lynn if it does really happen that fast. Of course her answer was YES it does. She was doing well the one day and the next well Alzheimer's said now you are completely mine and took over and the lady is headed for a nursing home.
You see we can go to sleep tonight doing ok, wake up tomorrow in a different world. Hell it can happen just from a nap, or walking out of the kitchen into the dinning room. Snap the other reality takes over. I wrote an article called Caught Between Realities that is posted somewhere on my blog. That tries to explain what it is like living between the beginning and end stages. Here is where my family finds out where I am at. I hide as much as I can from them. I do not think it is out of denial, hell I know I have it, but more so that they do not have to carry any of the burden, but it is getting harder by the day to do so.
See in the in between stages we feel basically somewhat ok and I must confess at times think the tests and doctors are nuts and I am ok, but it does not take long for AD to let me know who is really running the show. It is not me. See the outside appears ok to others, the old saying Do Not Judge A Book By It's Cover, well that is me and many like me. See the cover is ok, but open it and the pages are bent at the corners, toren, crinckled, highlighted so much that you cannot read them. Many are missing so the story does not mat sense Thoughts and words line up to be written, but the pen goes dry and your are not able to get them out.
Do not feel bad even those in groups I have been invollved with do not understand this phase very well. They seem not to grasp the fact that they are not ok and cannot do anything they want, you see we live with a disease, set of symptoms, condition, syndrome, whatever you want to call it that is a great deciever and painsts things so that they look ok. But it is nothing but sound stage decoration.
I was reading an article the other day that just pissed me off. It was about Glenn Campbell's Valiant fight against his Alzheimer's. What the hell about Mary, Sue in Canada, Jan in Oklahoma, John in Iowa and the list goes on. Do you think these folks are any less important, I sure the Hell Don't. We just are not rich and famous so the press thinks. Had to get that out we Count damn it!!!!!!

Stay well and be kind to yourselves.

God Bless & Keep You & This Country of Ours!
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