JOAN’S BLOG – MONDAY, MARCH 7, 2011 – CLUELESS

I find it astonishing that so many PWD ( persons with dementia) are able to articulately express their feelings about having Alzheimer’s Disease. Tracy Mobley, Dave Howe, and Richard Taylor, Ph.D, are just a few of the many PWD who wrote about feeling as if they were enveloped in a fog; how they could sense their abilities to figure out problems, to understand books, movies, television, conversations, and the world around them, slipping away. Except for the realization that his short term memory is getting worse, my husband is CLUELESS, absolutely clueless, about what is happening to him. He does not think he is in a fog (although everyone else around him observes that he is). He has no insight into how his memory loss affects every aspect of his, mine, and our lives, nor does he recognize his inability to understand all but the most basic of communication.

When I had word finding problems, due to a Statin drug I was taking; when I had organizational problems, due to the long lasting effects of anesthesia; when I became disoriented and forgetful due to massive stress, I KNEW something was wrong with me. I became frightened, and looked for the source of the problem. I realize that my husband has Alzheimer’s Disease, and the very nature of the disease may not allow him to be so self reflective, but he must realize SOMETHING. Yet he does not seem to, which would indicate to me that he is farther along in the disease than either I or the doctor realize. As I observe his behavior and reactions to events, I think that perhaps for a moment, he is aware something is amiss, but he forgets it in a flash.

Is it possible that he has reached the point where he is happy in his own little foggy world, because he doesn’t know he’s in that world? Does that even make sense? I understand that Alzheimer’s Disease is a constant mystery, and full of surprises, but I was under the impression that by the time a PWD descended into that foggy world, that they would be totally disabled. I pictured my husband, at that point, as unaware of who I was; unable to handle any of his ADL’s; and completely dependent upon others to take care of his basic needs. Sid knows me and everyone else; he appears normal to outsiders; he can dress, shower, and shave himself. But his understanding of his deficiencies is almost nil. He could never write an essay or poem, describing his situation as Tracy, Dave, and Richard have done so eloquently. He literally does not know that there is anything wrong with him, except that his memory is bad.

We are back to the same old scenario – it is MY problem; not his. I am aggravated, frustrated, sad, and angry that he is the way he is. I am constantly trying to play catch up to his declines. I am the one who gets hurt and remembers it. No matter what hurt he may suffer, or inflict upon me, what anger he may feel, he forgets it and returns to the calm of his very own Fog City.
I am left to ponder the question – What is it about the brain and this disease that allows some people to observe and understand their own deficiencies, while others live cluelessly in the Land of the Fog?  While I, the spouse, sit helplessly by, watching her husband’s personality fade away before her eyes.

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