Tuesday, June 28, 2011

Learning to live by Alzheimer's rules

"It takes a lot of energy, learning, and patience to deal with Alzheimer's disease." So says Bob DeMarco, author of the Alzheimer's Reading Room.

No kidding.

One minute I'm his favorite person. The next minute I'm his worst enemy. What did I do wrong?

I left a bottle of water sitting around open.

"I just don't understand why anybody would do that!" he repeats over and over.

As his world becomes more confused, he understands less and less and wails louder and louder about trivial matters until I am agreeing with him that I'm the worst wife in the world and he is absolutely right, I'm just no damn good.

Yet it is way too early in the game to get too frustrated. At least he's not accusing me of stealing his things, or threatening to kill me. Maybe it will never come to that, but for some it does. And worse.

I read of Alzheimer's patients who remain sweet and gentle, never uttering an unkind word. My husband is not one of those.

What I should have done was not leave the bottle there. But I am messy. I am having a devil of a time obeying his new rules. Open bottles of water were not a problem before AD. And they may not be a problem tomorrow. The rules change. Every day there is a new rule.

Caregivers spend a lot of time tap dancing, trying to understand what their loved ones need. We have to hang loose and be ready to shift into their dimension at any minute. For some of them, perfect order would not be enough to allay their fears. So meeting their needs as they arise is about all we can do, while accepting that no matter what we do it will never be enough.

However, at times his dimension becomes a lovely place to be. He apparently feels happy, peaceful, grateful and content for a little while. These are the precious moments to savor. I'm going to remember them later, even though he won't.