Thursday, November 20, 2008

When managing fades

I arrived at my mom's assisted living facility, The Gardens, a few days ago to find the place swarming with the members of a film crew with all their equipment, and the actors and extras playing the very people who live and work there. The people who live and work there, however, were instructed to stay out of the way, in their rooms, or in the cordoned-off areas of the halls and the dining room. Ok, filming happens. Not too big a deal. A minor inconvenience for a few days. And a story gets told. Like Driving Miss Daisy (image credit, and a little bonus story on US auto industry and Madison Avenue).

But the irony of it all really got to me. Actors managing carefully scripted parts, presenting a picture of what it's like in this place, for these people, our parents, our spouses, our brothers and sisters. The criteria we have for what makes a good story requires that we make most of it up. The story has to have certain aesthetic qualities, and it can't be too real or it will scare the living daylights out of everyone and no one will come to see it. Dying and death are not aesthetically pleasing. In fact, they are horrifying and you'd give anything in the world not to have to confront them. One of the most common experiences there is (i.e., everyone has it), dying and death, and we have no clue until it happens to someone we love and are privileged to care for, and then...

Just like everyone else before us, our instinct is to cover up the worst parts, gloss over the worst feelings, fail to come to grips with the central meaning of this sometimes long and horribly painful passage. Our complicity in the "great hiding" helps everyone else to continue their own great hiding from the truth of what life is really like, because death is an inescapable part of it.

And do we really want it any other way? Is there any pent-up societal desire to live more comfortably with the realities of what dying and death are and what they mean for how we live our lives? No.

So I was in Providence last week and, coincidentally, the front page of the paper featured a story about a study of nursing homes in Rhode Island, and how awful even the best among them were, and how all that had to be fixed before the boomers begin to find themselves there because we sure aren't going to put up with all those indignities. Maybe not in our current states of mind and health, but those are not the states of mind and health that land you in a nursing home. Power dwindles. Judgment disappears. Hands shake. Eyes stop seeing. "Managing" the thousands of little things we manage so easily, so adroitly, almost without being aware that we are managing, becomes impossible. And then other people have to start managing for us. And the struggle begins, intensifies, comes to its crescendo, and then stops. This can take years.

Well, I'm not up to it. I attended a caregiver support group last night. Twelve people, each with a different story, but these folks did not gloss over. Thank God that somewhere it is possible to say what's really happening, say how it makes you feel, see how others nod in affirmation, hear what they are experiencing, how they struggle with the same feelings of guilt, fear, pain, frustration, and relief that it ends.

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