You become a parent, in reverse.
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 are 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 is 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 is 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 is nothing else but total commitment. You have one unambiguous objective, which is making sure—after you have already done everything you can to prolong life and obstruct suffering—that death is peaceful. What does this, in actual practice, mean? It means ensuring that they are 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.
We were assisted in many senses of the word by my mother’s two oldest sisters; the two aunts I had always been closest with. Both of them stayed for what turned out to be the final two weeks and we all took turns doing the things that have to get done: making food, cleaning dishes, doing laundry, administering medication, changing clothes, talking, listening, crying, laughing, worrying, remembering, reminding and reinforcing. Along with my brother-in-law (when he wasn’t at work or tending to two young children), my father, sister and two aunts 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. 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 you grew up in, it seemed that much more inconceivable to imagine going anywhere else, or falling asleep, or eating, or showering, et cetera. As a result 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.
***
You learn how to take care of someone when you are obliged to take care of someone. Anyone who has had a child, or even a puppy, understands how this elemental injunction follows its own perfunctory mechanism. It is a combination of the most basic principles of cause and effect and a cognition of accountability. It is an experience that alters perception. Even as the actuality of your world is made inexorably smaller, the ways you view the world inside and around you—the connections with others and the parts of yourself you scarcely knew—are sharpened and expanded.
***
It was a blessing, possibly a miracle.
We could all see her steadily slipping away, more there than here, her body (and mind?) already in places we could not access or imagine. It was good; it felt right: we had all said the things we needed to say, and she had heard every word. We each had our time (we wanted more but we also grasped, even then, how fortunate we had been to get this extended, uncomplicated opportunity), and we were, at this point, more witnesses to than participants in her very personal, peaceful retreat.
Would she die on her birthday? It was plausible, even perfect in its peculiar way, but not anything any of us actively wished for (at a certain point you don’t expect or even hope, you simply wait). Her experience was unfolding at its own pace, so be aware (we thought), be engaged, be prepared.
“I feel like there’s dust on here,” she said, running her hands delicately along the sheets.
“No, it’s clean, it’s okay.”
“Oh. It feels dusty.”
“No, it’s okay. You’re clean, you’re beautiful.”
“That’s good…”
This was one of the last semi-lucid conversations I made it a point to record (another entry in another journal, another endeavor to document the story of my life). I was ready. I hoped she was ready. I was able, for the most part, not to read too much into her words, or find metaphors in the morphine. It’s clean, alright, I thought: everything ordered and its appropriate place. Of course she is telling me something with this, whatever it might be. More importantly, I was able to hear it, and then tell her something.
She slept. She knew it was her birthday. We knew too, and made sure she remembered. She was still there; still with us. I’d like a coffee frappe, she said, and it was not medication of the specter of death speaking, this was a woman who knew who and where she was, recalling the treat she had loved most since childhood, when she could get frappes in the only place they make them properly: Boston. My father, who knew a thing or two about Boston and authentic frappes, sprang into action. He went to the store and purchased the necessary ingredients, and we did our best to approximate the real thing. My sister and my aunts did what my mother had always done for everyone else: they baked a cake and around 8 P.M. we brought in the goods, singing Happy Birthday.
A miracle or something more: she sat up, smiling, and proceeded to enjoy what all of us knew would be her last celebration. She drank the frappe and ate some cake, slowly, contentedly. She was there and she was with us. We did right by her, I wrote. Just like she always did for everyone else, all her life.
***
After that, we were ready. She was ready as well, we hoped. What more could we ask for? Incredibly, we got more. After two days of serenity, where she hardly opened her eyes, we supposed we had enjoyed our last opportunity to communicate with her. We were wrong. Almost exactly forty-eight hours after we serenaded her with birthday wishes, my father leaned in to kiss her goodnight. Immediately, she became animated and hugged him, kissing him and saying things (hurriedly, excitedly, lovingly) that we could not hear across the room. He heard them, and said some things of his own, and we sat back, awed and grateful for another remarkable moment. For a second or two I may even have caught myself wondering if she was, in fact, ready—or willing—to ease into that final night’s sleep. How can she be so present and purposeful, I asked myself. How can it be possible that she’s closer to death than life?
I was thinking these things as I leaned in close for my own goodnight kiss. I felt her arms around me, her lips on my check, and for a half hour that felt like forever we held one another. I was, once more, able to tell her all the things I wanted to say; all the things she needed to hear.
***
If that all sounds too good to be true, it got better. But first, it got much worse. After we all had our extended (final?) farewells, my mother sank back into semi-consciousness and we were certain that she would pass quietly during the night.
As I had done most evenings during the last two weeks, I slept beside her, far enough on the other side of the bed to allow her all the space she needed, and not interfere with whatever she might be doing or wherever she was in the process of going. As the night passed she became increasingly restless, jerking her body with a force I would have thought unmanageable. She was obviously agitated, and her movements made it more difficult for her to draw breath. By early morning she had woken me up again, her voiceless sounds suggesting she was in an altogether different place than she had been for the last several days. But where, and why? I moved in and stared down for several seconds, trying to see if she was trying to express something.
This continued for hours, and our collective anxiety escalated as we struggled, without success, to determine what was causing her restlessness or what we could do to assuage it. How can this be happening, I thought, feeling sorry for her and, by extension, the rest of us. It seemed unfair to the point of cruelty, being forced to watch this late development we could neither control nor comprehend.
Finally, my father discovered the problem. We were so preoccupied with her spiritual state it hadn’t occurred to any of us that she had not been out of her bed for at least a full day. My mother’s body, though barely responsive to outside stimuli, still had its most basic functions to perform. She had wet herself, soaking her underpants, nightgown and the sheets. All at once, the cause of the disquiet she could not convey was apparent, and for us, appalling.
Action saved us from deliberation, and we moved quickly to improve the situation. It required all five of us to gently lift and hold her in place while we wiped and powdered her, after removing and changing the sheets. The aerial view in the movie of my mind tracks the people who knew her best and loved her most working in concert; deliberate but calm, transferring the air of anger and culpability that had almost sabotaged our best intentions. It was the entirety of the last five years condensed into one gesture, a collective act that required tenderness and tenacity, accessing previously untested stores of devotion and faith. In the space of several minutes we confronted a situation that rekindled our worst fears and ended up reinforcing our best aspirations, resulting, finally, in a unique, oddly familiar solace, as though we’d been preparing to receive it our entire lives.
Once we had her back in place she settled into a deep, secure sleep she never woke up from. Finally, irrefutably at peace, she remained so for the rest of the afternoon. We could feel it as the sun set behind us and the house grew cooler and darker. We kept up our vigil while her breathing slowed to the point where, eventually, we could almost perceive her heart drawing the blood back into itself.
*from a memoir entitled Please Talk About Me When I’m Gone.
