i saw my beautiful blue-eyed lady today. she is confused and has hallucinations, and i’m not sure where i fall in those slushed-together worlds of reality, memory, and pathology. i don’t know whether or not she knows who i am, but she always gives me air-kisses, five or six in a row, her mouth puckering up in soft creases, even after i’ve made her turn over to listen to her lungs or change her bandages or when i’m making her drink her ensure because she’s more likely to do it for me than for the aide who is there all day. she’s bedbound now, and her skin is getting bad… i’m afraid, have a feeling that it’s really going to go, break down into multiple, unhealable wounds. i know what it would look like and i can’t stand the thought. she’s always been precarious, but i think things might be ready to tip. this despite all of us dong everything we can to stall or stop it.
this is how it goes: something happens, something slips. it’s eating or drinking or infection or things unnameable or who knows, maybe the weather or the stars or ghosts of memory or just plain time and the unavoidable appointments of destiny. things imminent become actual. the slope rises up at you as you plummet down its course, more quickly than you ever could have imagined.
i do everything i know to do for her and then go to see a patient of someone else’s – a very old man, in renal failure, refused dialysis, dying.
we professionals want to focus on pain control. it’s one of the things we know we can do. there is a bottle of fast-acting liquid morphine in the home, unopened. his family is afraid of giving it. they are afraid the medicine will separate him from them. he has already gone silent. he is awake, his eyes are open, but he is weak, does not respond, except to wince with pain or annoyance while i examine him. i teach his family about the morphine, i try to help them see that it could be useful, try to give them a sense of options, possibility, control, relief. i don’t push too hard, though. i want them to be able to decide, to find their own balance of what is most important. everyone’s afraid of morphine — i don’t know what it is, if it’s what they’ve seen in movies, or ideas about addiction, or maybe just the feeling that it means giving up, or worse, that it means participating, pushing toward the ending… that it is some betrayal, that it is killing.
we could say, we could acknowledge, that he is actively dying already. i don’t know who came up with this term, but we use it. and i can’t put my finger on why, but it bothers me. does it make death an action, a condition, more than a moment or event? does it mean that death starts even before life ends, seeping backwards in time to seize us before we arrive? i know the question itself is dualistic, an either/or, and that pins me tight into western thought and the traps of reason. but there are eithers and there are ors. they exist. breathing or not. heart beating or not. eyes open or closed.
killing, keeping, letting go, holding on, going. at times they are each other — keeping is killing. letting go is holding on. going is keeping. it’s fluid. much more fluid than one might think. i say this, even though i just said either/or exists. but both is also real.
letting things take their course. keeping him comfortable. we want to do everything possible. nothing more we can do.
they all mean different things. different things when i say something, when a patient says it, when families say it. i give information that is framed by knowledge, clinical judgment, experience. it is received in a frame with a completely different shape to it — a shape based on different knowledge and experience, plus a relational frame — husband to wife, father to child, grandfather, brother, uncle. every frame is different and each one brings its own history, its own meaning, its own limitations. it frames what we want to do or hear, what we are able to understand or decide.
the patient’s wife asked me, at the end of the visit, what is the state of his health?
i know they’re going to lose him, that the time is close. she may know it too, and she tells me to speak frankly and i do but i don’t tell her an amount of time, because it’s impossible to know and i wouldn’t say it anyway. and i see in her face that it’s still not real that things are ending — that sixty years, six children, the whole life together that brought them from one island to another might finally stop. yet perhaps more terrifying, more strange, is that there will be something beyond the two of them, a place where she’ll go on alone.
i ask her if i have answered her question. she says i have. when i prepare to go, she thanks me for coming. they all thank me — wife, daughter, two granddaughters, the home health aide. they smile, they express gratitude. they carry gracefully the coming grief. they wait for it, even in their worry, in their knowing, in their un-knowing. they wait for it with love. and i am sure they will be ready, in whatever ways they need to be. i hope they will be. i hope he will be.
