January 15, 2009 — 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 strives to control us.  It’s always keep the peace, tell the patient what he or she wants to hear, second-guess everything you are thinking of saying, don’t argue, don’t do that, 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 right along with the victim.  But guess what, that screeching sound you hear is me dragging my heels.

So much of the time I’ve found myself walking around on tippy toes trying not to break the eggs.  Before AD, and in a good marriage — which I was fortunate to have — we didn’t have to view the world through one another’s eyes.  I often said that to Ken when we had a disagreement and he felt his way was the only way.  “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 it was all right to agree to disagree.

Once Alzheimer’s entered into our lives in full force — and it was a gradual thing — I somehow put my life on hold, not really knowing how not to.   I can’t say what year it was when the eggs became a permanent fixture underfoot, but they are there and I live my life accordingly — which I find  extremely frustrating.  If the room is too warm, we turn off the heat.  If he wants the door open, it stays open — even in the winter with rain coming down and  the north wind blowing.  He asks me a question, then gets angry with my answer or direction.  I used to say, “If you don’t want my help, don’t ask for it.”  That is long past, now he just views whatever I say as “telling him what to do.”  And the fault I dislike most of all is their need — any of the three men in my life —  to argue.

Ken always liked to banter with people (and me) and would take 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, and we all knew it was just “in fun.”  But that “need,”  if one can call it a need,  is still there, but without the fun, and when he gets into a 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 or she is no longer dealing with the person they married.  So now I just walk away telling him, “I’m not going to argue with you.”

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 moment I can do exactly what I please  Alzheimer’s has Ken in its grips, but for that small window of time, his disease doesn’t control me.

Originally posted 2009-01-19 08:14:36.


Decorated Christmas Tree
Even something as simple as putting up the Christmas tree could be a great help for Alzhiemer’s caregivers.

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Originally posted 2011-12-10 05:37:08.

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