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Anyone who cares for an Alzheimer’s patient knows with certainty that the disease is the “boss.”  We don’t control Alzheimer’s, Alzheimer’s controls us.  It’s always “keep the peace,” tell the patient what he/she wants to hear, second-guess everything you are thinking of saying, don’t argue, don’t change, don’t disrupt and above all, don’t have a life.  That’s the hard part:  allowing this awful disease to control and take away not only the patient’s life, but the caregiving spouse’s life as well.  But guess what, I’m not going to allow that to happen.

So much of the time I’ve found myself walking around on eggs .  Before, and in a good marriage — which I believe I was extremely fortunate to have — we worked through having a difference of opinion.  When we found ourselves on opposite ends of a conversation I would say,  “Thank you, Ken, for your opinion, but I don’t have to see the world through your eyes.”   Nor did I expect him to see the world through mine.  Actually, we were pretty much in agreement on most things, but there were times when we weren’t, and that was okay.  Finally, we agreed that it was all right to disagree.

Once Alzheimer’s entered into our lives in full force — and it was a gradual thing — I put my life on hold without actually realizing what was happening.   I can’t really say what year it was when the invisible eggs appeared becoming a permanent tip-toe-lightly fixture under my feet, but they are there and I lived my life accordingly — which I found to be  extremely frustrating.  If the room was too warm, we turned off the heat.  If he wanted the door open, it stayed open — even in the winter with rain coming down and  the north wind blowing.  He asked me a question, then gots angry at my answer or direction.  I used to say, “If you don’t want my help, don’t ask for it.”  That was long ago.    Now he just views whatever I say as “telling him what to do,” and he doesn’t like that either.  Everything in the house is his including the house when he slips into one of his other personalities, which is all right.   But the fault I dislike most about  Ken’s three-personality persona is their need to argue.

Before AD, Ken liked to banter with people (and me) taking the opposite side of a discussion just for the fun of it.  He might have made a good debater, but was never sufficiently informed to support the side he chose.  For him it didn’t matter, he just liked to push people’s buttons in a teasing way.  But that “need” if one can call it a need is still there and when he gets into that mood it can cause us both some miserable moments.  For example:  after dinner I went to pick up the plates and he said he would wash them.  “That’s okay,” I replied, “I’ll put them in the dishwasher.  That’s why we have a dishwasher, it cleans the dishes.” “Sometimes,” he snapped.  Then he gets a know-it-all expression on his face and I realize he means to argue this to the end.  In the past, I tried to reason with him.  It takes a while for a spouse to accept the fact that he/she is no longer dealing with the person he/she married, but with the victim of a terrible disease.  So now I just walk away telling him, “I’m not going to argue with you, and I’m out of here.”

With that as a final declaration I leave him standing, escape into the office and lock the door.   Or sometimes, before he gets too argumentative I will wait a moment or two until he turns away then I disappear — to the same destination.   It might take a few minutes before he  thinks he has found me behind the locked door.   He knocks firmly and commands, “Unlock this door.”  I don’t answer and I don’t argue.  I can ignore him and I smile because I’m in control.  It’s usually just a little while, but for that little while I can do exactly what I want to do, and I am filled with a sense of freedom.  Locked in my office I feel free?  That sounds like an odd conclusion, but it’s true.  Yes, I am free because I made a free-will choice.  Alzheimer’s has Ken, but for that small window of time, it doesn’t have me.

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