Please Talk about Me When I'm Gone

Reversal

(August, 2002)

The idea is that, in theory, as your parents age you assume some degree of responsibility for them and, to some degree, you take care of them when they can no longer take care of themselves. This cycle begins, in theory, the second you're born-setting a natural process of physics in place-and is accelerated by terminal illness.

As this scenario unfolds, you forget almost entirely about yourself and steadily put all your energy, hope, and attention toward someone else. It's a reversal of the process every parent initiates when they hold their baby for the first time: This is my life now; everything I do must revolve around this child's safety. The first and foremost obligation of any mother or father is to make sure their baby stays alive.

There is, in theory, an intermediate stage, which occurs when you watch one or both of your parents' parents pass away. After my father's mother died, leaving him an orphan (in theory) at fifty-one, one of my first thoughts was: I have to have children now; I've got to keep the line going and preserve the family name. I was twenty-one. Arguably that was Society, under cover of Cliché, thinking those thoughts and putting that familial imperative at the forefront of my mind. But there's undeniably something instinctive about this circling of the genetic wagons: we see it in virtually every species-that innate compulsion to create and protect.

...

With end-of-life caretaking there are no half-measures: once the inevitable becomes apparent, there's nothing but total commitment. I had one unambiguous objective, which was making sure-after having already done everything I could to prolong life and obstruct suffering-that death was peaceful. What does this, in actual practice, mean? It means ensuring that the person dying is not alone. And what does that mean, exactly? Not in a hospital. And never alone, literally. From Monday, August 12 until Monday, August 26, my mother was not by herself for a single second. This became our collective mission, and an undeclared obsession: this was the least we could do.

My mother's two oldest sisters-the two aunts I had always been closest with-were present for what turned out to be the final eleven days, and we all took turns doing the things that needed to get done: making food, washing dishes, doing laundry, administering medication, changing clothes, talking, listening, crying, laughing, worrying, remembering, reminding, and reinforcing. My father, sister, two aunts, brother-in-law (when he wasn't at work or tending to two young children), and I split the days into segments, guaranteeing that someone was awake and alert, stationed at or near my mother's bedside at all times.

For the first week this was almost entirely for my mother's sake. She was still coherent, occasionally uncomfortable, and experiencing brief but acute flashes of distress. By the second week we were acting in interests that were more communal: being present, taking the opportunity to experience time slowing down and languidly turning away from the outside world. Except for welcoming the visits of the hospice nurse, we had a decreasing level of care or even awareness that on the other side of our air-conditioned fortress the late August heat was keeping its own kind of time-the kind measured in minutes and on calendars.

The primary apprehension, also unspoken, was not being there: What if I'm not here when it happens? Being stationed in the house I grew up in, it seemed that much more inconceivable to imagine going anywhere else, or falling asleep, or eating, or showering, et cetera. We were on high alert. The stakes were conspicuous and we understood our responsibility-to her and to each other.

Being able to say a long, slow goodbye turned out to be the best gift we could ever have given, or received. My aunts and I have often recalled the shared impression that those were the two most exhausting, emotional, unexpectedly exhilarating weeks of our lives. Helping someone die is a luxury, and the hardest job you will ever love.