He is slowly dying from the inside out of a degenerative cognitive disease. With no awareness this is happening, he continues to pride himself on his good memory. He doesn’t know what year it is, how many children he has, or what he did this morning.
A little over two years ago, we sold his house, picked him up, and drove the several hours back to our house, which would be his new home. Since that day, he has been pretty much attached to me by the hip, watching soccer games, going out to eat, taking the kids to various activities, having coffee, sitting and staring into space for hours while I sit across from him trying to do my work, sometimes waiting in my office while I teach. He increasingly fiddles uselessly with watches and razors, only able to do tasks that comprise precisely one step. He loves to talk about the past — the stories of which repeat hundreds and hundreds of times, increasingly intertwining, splicing one into the other, copies upon copies spinning out like a suddenly exploded nucleus bursting with unrecognizable virus. The Eiffel Tower is the first stop on a trip to China, where they saw the Pope and got on a cruise ship to see the Kremlin. The military, malaria, boats through the Golden Gate, flying, harvested sweet potatoes stored in a mound of dirt, holding up the leaning tower, chickens fighting underneath his bedroom floor, selling boiled peanuts from his family’s farm to the mill workers changing shifts, sending a postcard from a place called “Hell” in Mexico, truck stops, Morse Code, spies, torture, a girl on a bus, businesses, dead bodies in airplanes, swimming in muddy creeks, race cars careening into the fences but landing back on the track, overcoming a carjacker with a gun. Together we spot and admire the contrails of airplanes, both of us fascinated by air travel.
He is and has been a man of his era and of the rural south. Race is everywhere and almost always salient enough to mention, but he’s sure he is no racist. And indeed, the friends he makes at daycare are not white. He loves them. Men and women are fundamentally different, and he has that particular form of religiosity that places devil, demon, and warring angel in the middle of everyday life, taking active roles even in the mundane. His inner model of the world has been one both of bootstrap pulling and of powerful forces outside our control. These days, it is a fantastical, ephemeral one, one in which a strange, flying life-form I cannot see — and he pities me for this — buzzes around power lines and into bushes, occasionally, he has been told, diving to the sea to collect salt water, which is somehow related to the power lines. He asks my son if he has ever heard of a man named Christian Turner.
After about six months with us (a particularly low period for all of us, with every point of stress a resonant tone awakening vibrations among many other point of stress), we were able to get him into an adult daycare center for six hours a day. Without that help, it’s hard to see how the situation would have been tolerable absent a full-time stay-at-home family member, especially as his friends, family, and church back home rapidly dropped off the map. It reminds me of caring for a toddler, but instead of having faith that one’s hard work would be rewarded by the development and growth of a new personality, you know this particular hard work will grants little more than the intrinsic reward that always attends acting for others.
You’re constantly reminded of your own selfishness, how much more you could be doing, the fleetingness of this existence, the contingencies that bear on your conception of your own mind, your many inadequacies in everything else you’re trying to do but failing at. Watching someone else’s brain die teaches you about yourself like an atom smasher teaches you about unsmashed atoms. It has been a great but hard won gift to be forced to accept, in the most visceral and direct way, the mind as ever-changing and temporary. It is one thing to think of one’s mind as a more or less undifferentiated part of the rest of the universe. It is quite another to feel it.
Early on I wrote an impressionistic blog post after seeing a poster that depicted the inevitable decline of the mind as a series of less and less transparent jewels, ending in the opaque luster of a pearl. And then, reflecting both on my father-in-law’s increasingly distant orbit from my reality and on my grandfather’s death, I wrote about the way we seem to die now, out of our minds, of thirst, with just enough morphine not to care so much, probably perceiving our predicament through the refractions in dream of a lifetime’s memories. I’ve also started and junked a post more than once about What I Believe, my own religion, perhaps driven by a need felt because I lack the fellowship on these matters that many others have. But like everyone else, I grapple often with what’s really there. Out of the darkness, in the flickering of light perceived with closed eyes, I see the fundamental idea that happiness lies in appreciating and truly accepting that one’s objective significance is no more or less than that of so many crumbling bits of concrete from the broken edge of a curb, weeds beginning to colonize. What does it mean that these bits of soon-to-be-dust and I are similarly fleeting manifestations of the same universe? Observing a dying brain makes what is intellectually plain into something that is emotionally plain. And that’s the trick, isn’t it: accepting emotionally what is all too easy to grasp intellectually.
At the beginning of this year, two years after the day we picked him up, we placed him in an assisted living facility. We had neared our limit in providing a good life for him, on account of his inevitably declining mobility, his complete and utter inability to entertain himself, and his chaotic swings between love and extreme dislike of the daycare and our routine. Sooner or later he would fall down our stairs, slip in the shower (which he only took when I give him realtime, step-by-step instructions and manage it), wander off, or otherwise manage to hurt himself. It soon became even more apparent. Within days of moving him in, we got a call that they needed to move him into the locked memory care center. I’ll omit the details and just say that this was hard but has gotten easier. I love him.
Many of my friends have shared their own, their family’s, or their friends’ struggles with illness, death, divorce, or mental breakdowns. And I think of all the struggle that lurks unseen beneath even the happier Facebook status updates. I certainly don’t think the burden my family has carried is or has been unusually difficult, our tragedies any worse. Surely they have been less so than those of my friends who have lost children or struggled with life-threatening diseases. I thought, though, I would share this, because maybe it will help someone else feel less alone. No matter how dark your here and now, please know that people do care. While I believe our senses of separate, subjective experience and self-importance are illusions, also illusory are our feelings of isolation.
We cannot, no matter how we might wish or pretend, drop everything and give ourselves over completely to all others in their private struggles. But we can each do our best, where we can. Over the past two years, my friends and family have given me great comfort, and for that I am forever grateful.