Tuesday, September 1, 2009

Dementia: What do you say?

Dementia is not a kind illness. It robs those it afflicts of the one treasure trove that neither bankruptcy nor other losses can touch: one's memories. For those caring for someone with dementia, the illness presents an extra sharp edge. That's because it progresses at unpredictable paces. No one can tell when an aspect of memory or cognition will vanish. And no one can say after that what will go next.

In my experience, one of the more profoundly disturbing aspects of dementia, at least for the caregiver, is when your parent can no longer tell where they live. This starts simply enough, with a confusion, often temporary, about where they are. The questions go something like: "Where am I? Am I at home? Where am I living?" Answering those questions truthfully usually is enough to bring your parent back to reality. At this stage, the confusion is more like temporary amnesia, an affliction one moment, gone the next.

But over time, the state of confusion, of not knowing where they live or where home is, deepens and lengthens. I liken what happens in this stage to balloons breaking loose, each with a disconnected snippet of memory attached to its string. Imagine that your parent simply doesn't have a clue where she is living. In a continuous effort to figure that out, her brain offers her a few unassociated options. For example, a balloon floats free, bringing with it a memory of a house your parent used to live in, in Peoria, when you were 6 years old. So your mother tells you she's living back in Peoria. Now her brain offers her reasons for why she's there. It sends up a balloon attached to a memory of waiting for you to come home for a friend's house so she can cook dinner. And that's what she tells you she's doing. Or perhaps one day she'll tell you she's in a hotel room, packing for a flight home. All she knows is that she doesn't recognize where she is. Her reasoning for that is, "Hey, I'm at a hotel."

For you, these disconnected, seemingly irrational statements from your mother are concerning. For her, they give her a satisfying explanation that help her feel more peaceful. She's figured out where she is and what she's doing, at least for that moment.

This constant searching to understand where she is and why she's there, must be stunningly frightening and disturbing to the dementia sufferer. Disconnected from the present, disconnected from the past, with random memories ricocheting about without anchor. It's terribly poignant and filled with pathos.

So, what do you say when your parent presents you with a statement that you know is incorrect, and which reflects a scary lack of understanding of where they are. In discussing this with a psychiatrist recently, he called told me the parent's version of things is called "fictitious reality." This is a perfect label, which catches the made up aspect of the statement, along with the fact that, for your parent, it's very real.

Some caregivers are really thrown for a loop when these stories pop out of a parent's mouth. Here's what the psychiatrist suggests: You could try gently to remind her of her whereabouts by noting very simple things about who you are and where she is. If she insists this is not so, or this seems to upset her repeatedly, don't "dispute" with her, thinking you'll forcibly haul her back to "reality. This will likely be a frustrating and futile activity for you both. Instead, try to indulge her. Drop the notion of proceeding with your own planned line of conversation; make a switch to her side. Enjoy reminiscing with her about things from the past rather than trying to discuss the present. Or, if you prefer, change the subject to what you've done that day, and just regale her with a few stories from your present life.

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