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.

Dr. Steve Hume, Alzheimer's patient

The difference between Alzheimer's and cancer

When I knew he had Alzheimer's, I wanted to fill his days with memory-makers, just as I would if he had been diagnosed with some type of incurable cancer. The problem is, no matter how unforgettable a day or an hour might be, he's going to forget it. It's the nature of the beast eating his brain. So I slog on, knowing these good days and hours are disappearing behind him, and I'm left to remember alone.

We have a new motto at our house: Just start now...

Never had much of a heart for service.  Self-sacrifice was never my strong suit, especially when it came to men.But the mighty oak bends under a mightier wind. Solid ground gives way to rushing waters and begins anew downstream. At last I loved someone enough to try to adapt to him. Good thing. He couldn't change if he wanted to. Can't reason with him, his reasoner is broken, to quote an expert on the Alzheimer's message board, www.alz.org, my lifeline to sanity and instruction.

Bob DeMarco, author of the Alzheimer's Reading Room www.alzheimersreadingroom.com, and caregiver to his mom, says an alternative universe moves into your house. He calls it Alzheimer’s World. It has a language of its own. The other day he wrote about how when the craziness starts, you just take one step to the left, and you are out of your reality into theirs, where things make sense to both of you, where, if you can remember in time, you say the most comforting thing, which probably has very little resemblance to anything other people would recognize as truth. There is only one truth in Alzheimer's World. Theirs.

However, occasionally their truths become life lessons, such as when he walked into my office and announced he had come up with a new motto. 

I started to take one step to the left.

 "Well, you know how I have a lot of regrets...well, what if I just start now just being the best I could have always been."

Sometimes his reasoner works just fine.