Monday, March 15, 2010

Life and Alzheimer's, Part I

The beautiful golden hour faded later this evening, because of the whole pretend-time thing. (Why don't we agree on one time or another and stick to it? Twice a year I find it impossible to be at work on time.) It was cloudy, sadly, because I did want to show you the tiny wild violets blooming in one corner at my house, but they photographed poorly in the gloomy light. Happily, though, clouds are what make a beautiful sunset so here's this, partly because it's simply lovely and partly because it serves as an allegory for aging, which is what I really want to talk about.

I was thinking about Ms. Moon's lyrically beautiful post about the script of finely seasoned relationships: we have mastered the delicate footwork of the dance together because we understand the spoken words and movements, as well as the subtext with all its nuance. And then I was thinking about the things that can alter this script, this life work, this magnum opus upon which we have labored, we two, whoever we are, lo, these many years. If our center is strong, we may survive despite any changes. But we are inevitably changed, like the bottom of an ancient river, like the sculpting of rocks around that river: inexorably refined and polished, if we're lucky, by the forces of nature upon our surfaces and our underpinnings. And if for any reason whatever The Light should fail to shine upon us, we may be undone by these forces; we, and the lovingly crafted magnum opus - the shared dialog of love - on which we have built so much of our foundation.

Here is one of the many things that may unstring us: the effects of aging. In my family, these cold fingers of threat were those of Alzheimer's disease. Rodney's dad was a victim of this dread thing, and in truth so were we all; it is an indiscriminate destructor, my dear ones. It is a terrible thing. There is much to not remember, but I remember this: someone said, Get a copy of The 36-Hour Day, and read it. A few weeks before, Pop had been delivered to us a few weeks after he was released from the hospital because of overdosing himself on his daily medications: because his short-term memory was gone he couldn't remember that he'd just taken his medicine. This was just one aspect of the Groundhog Day-like theme his life began to take on. He would take the medicine, a considerable handful of this and that, paying careful attention to the prescriptions. Ten minutes later, he would just as dutifully take it again. And again. And again. So when he arrived on the doorstep, there were Rodney and me, and Mac and Dylan (15 and 13, respectively) and a couple of Boxers. And Pop, whose behavior had become incomprehensible to us. We were restrained from saying so by two things. One: in the South, you don't just come out and say to someone, "You are making a complete ass of yourself and should probably shut the hell up," especially to an elder, however complicated your relationship. And two: it didn't make one damn bit of difference what you said to him. Minutes later, he had forgotten it. So the four of us sent him to bed one night, and gathered in Rodney's and my room and I began to read out loud from The 36-Hour Day.

It describes a sort of composite person and uses her imaginary situation to describe a common Alzheimer's experience. The person gets sick with something unrelated to any symptom of dementia, and they're taken to the hospital and it becomes adundantly clear to everyone that the patient has no idea what's going on. He or she may have successfully covered the symptoms for months or years or even, as in Rodney's dad's case, possibly even decades. This is complicated, but essentially, they figure out ways to compensate as they feel the memory slipping away; if I found one piece of paper, big, little, even miinscule scraps of paper, with Rodney's or his brother's phone number scribbled thereon, I found a thousand. I am not making this up. Pop was said to be master of the art of "confabulation", a clinical description for the ability to pull obscure details together from random memories and put them together into a plausible story, pretty much at the drop of a hat. So we read The 36-Hour Day until we were all, and I mean all four of us, crying our heads off. I cried for hours; I don't even know how to begin to put that moment in words. And that was the beginning.

But tonight's topic isn't Alzhimer's (though I have many more posts in me on this one, folks). Tonight we're talking about the complex science that lies beyond our scripts, the dramatic changes that can be wrought by unexpected wind and water. ALL the scripts, not just the one Rodney and I have refined over 25 years, but the ones by which our sons operate with us and each other, and the ones by which we and they relate to people older than themselves, are changed. Rodney and I are changed. I notice things and do not say, "That reminds me of your dad," or I notice things and DO say, "Never say that again; you sound like Pop". Or something may be delightfully fine, and one of us will think but carefully NOT say, "That was fine as frog hair," because Pop said it all the time. No one ever uses the verb "cogitate": a Pop verb, always used to convey, crafilty, "I don't know, but I will after I think about it", except of course he never did. And these are superficial changes; these are the wind gently moving grains of sand around making small changes, barely visible.

The big changes swirl around the foundations under the dark surface of the water, like waves washing around the underpinnings of a dock. For us, so far, so good. The script has been tuned. The underlying equation has changed, too, but who knows: is the equation all that different from family to family? Do its subtleties work their changes similarly? I don't know. Perhaps you have some thoughts about this; perhaps you'll be generous enough to share them. I really do have much more to say about The Effects of Alzheimer's On Those of Us Who Have Not Strangled Their Family Member, because I can tell you unequivocally that we wanted to strangle Pop more than once. I'll tell you the tales if you're interested. I'd rather hear yours, really. Share them if you can.

Before you go, here is a picture of a script re-write. In this one, the people have changed around, so that it's not me making the cake. It's Rodney. It's the butter cake I mentioned the other day. And a script in which he was baking a cake is NOT something I'd have imagined 20 or 10 or even 5 years ago. But here we are: the riverbed has been slowly changed and the script is different, and for now, deliciously so. Enjoy.

Blog credits for tonight: I took all the photos and Dylan wasn't available to proof. And so it goes.


  1. Beautiful, poetic, inspiring post. Another inspiration this week was the film "I Remember Better When I Paint" which shows how creative arts open doors of communication for caregivers and their families. Saw full film on DVD and there is a clip of it on youtube.

  2. Ah. Such a scary topic and yet, one which we all must think about. All of us will be affected one way or another.
    And you wrote about it all beautifully. And honestly.

  3. Tamara, thank you so much. It's a tough one, and as we lived with it I have several more stories to tell but it seems like too much for one writing - or reading, for that matter. Thank you for sharing the link; I will defintely give it a look.
    Ms. Moon, you are as ever a voice of encouragement and especially in the case of this post, inspiration, since it was your lovely post about the mysterious dance of long-lived relationships that helped put this into focus for me.
    Love, love.


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