Sunday, June 8, 2014

REM Sleep disorder


My papa recently came to live with us.  He's 94, though Social Security and the IRS say he's 95, he'll admit to 94.  He told his latest girlfriend that he's 93.  My father was an aerospace engineer, a rocket scientist who helped put man on the moon.  The first man of color to matriculate from Kansas State University's College of Engineering.  There is even a scholarship there given to engineering students of color in his name.

My papa has dementia.  We think it's Lewy Body dementia, which includes a host of issues, hallucinations, memory loss, mood swings, anger, aggressive behavior, dragging gait, stooped posture, and REM sleep disorder, which means he acts out his dreams, which are at present mostly stress nightmares.

Lewy Body is the second most common dementia, affecting about 20% of all geriatric dementias, yet there is no understanding of how to make the sufferer more comfortable.  Most with Lewy Body are drug sensitive.

Maybe we're not supposed to suppress the hallucinations and nightmares.  One known symptom of Lewy Body dementia is "talking with dead people".  I wonder why we assume these are hallucinations?  Maybe he's reached a place where the veils are thinned and his access to other worlds is just greater than those of us stuck in "reality".  And maybe not.

After seven years of writing about Mina and her dreams, her nightmares, it is odd that Papa has come here to show me the real terror of being active inside a waking nightmare.  He's hunted.  He's escaping.  He digs his way out of tunnels and balances on the edges of tall buildings.  All that he can no longer do awake, I find him doing in his dreams.  He climbs, he crawls, he stands, he walks, he talks to people I cannot see, and they respond.  I've found him perched on top of a file cabinet waving his arms for airborne help, and huddled under a desk, as bunker.

I watch him to make sure that he doesn't hurt himself.  I'm there to cover him up when at last he falls into bed, to rest up for the next REM thrill ride.  Sometimes I speak to him, but always in the context of the dream, because to pretend that my world is real, while his is not, only makes him angry and protective.  I have learned to go there with him.  To guide him, as a character in the dream, away from danger, and hopefully, when he lets me, to help him complete his missions.

I have overnight help coming tonight, for the first time since I began this adventure, 5 weeks ago, when Papa's eyesight completely vanished along with much of his rational mind.  I am looking forward to sleeping through the night, but there is also a part of me that regrets the dreams I will miss.

*coda -

The overnight helper was afraid of dogs.  Agnes, our rescue coon hound, who mostly curtsies and pees when she meets someone new, barked once, and the sixty-something woman, in the turquoise turban, took a big step back, shaking her head and sucking her teeth.  I felt chastised, as if I had wasted her time with intent, like I'd crank called in a pizza order.

The agency is sending someone new tonight.   I'm too tired to muster much enthusiasm.  I feel like I was blindsided by a wave, and I can't find my feet, and even when I do, the sand quickens, sucking me down into its gritty ooze.  Yikes!  Back to Disbelief.

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