Comments Welcome: A Caregiver’s Journal (No. 4)

A Gratitude Flag






















It is a glorious shout of defiance that I have made in my own chest, in back wards and other gutters, during my worst defeats.

It can still stir spirit’s embers into flame.

But—is it adequate, now? Will it do for what I have seen, what I am seeing—now? The death by slow drowning followed by coma that is lung cancer? Or the far slower disintegration of Alzheimer’s, as natural and dreadful as the host of ravenous wasp larvae implanted in a paralyzed caterpillar?

For these, for now—the brave words must be modifed.

In times of stone, gauze has its blurring virtue. But needed as well are granite views. Stones to set amid the stone. As markers. As signatures of self.

All that I see can, and will be, taken from me.

Yesterday, two Marys. One, her suffering done, lowered by three pairs of hands into the ground. The other, still going with faltering steps over the Earth, her brain shrinking, her spirit swelling with assault, supported on either side by those she rains down minuses on, as if to sew a zero, a bag of blackness we can be swallowed by together, no one alone.

So what avails? Does anything?

To be a steadfast witness?

All that will be taken from you will be seen by loving eyes.

You will be helped until all help is done, and before and beyond that, witnessed utterly. A witnessing beyond mere observation. A being-with and going-together to the end. Your hand held and your going attended.

What is demanded of the caregiver?
Everything.
Are there limits to the asking?
None.
What is returned?
No less than is demanded.

The strange contagion of suffering and comfort, how they swap places constantly. Arm around her shoulder as she weeps at losses she cannot recall, then pats my hand to dry her eyes. An hour later it is I who am forced off the road by streaming eyes, who feel, at 2 a.m., on a shoulder of the 401, a sudden rinsed and ruined space, a raw clearing as of dawn over a battlefield. All exhaustion gone, and resolution renewed, as if the sorrowful hard 20-hour day were, not a crushing burden, but a rare exhilarating privilege.

And it is. In moments of mad gladness, I know this: a privilege. To be offered, and to be prepared by a lifetime to accept, the position of loving witness.

To plant this flag of gratitude.

Comments Welcome: A Caregiver’s Journal (No. 3)

Pebbles in the Stream

“I need to tell you that you are a good son, and a good person.”

L, in her kindness, may need to write the words—but how badly I need to hear them! The email is a glass of clean water I keep sipping in a dry, polluted zone.

It’s not exactly that I doubt it. I know that only a good son, a good person, would do what I am doing. Or, if referral is the best recommendation, put it this way: I am the sort of son, the sort of person, I would want as my caregiver.

Only—why is it so hard sometimes to feel good? To believe it all the way inside? The answers to that might be as deep and manifold as a life, but here are a few I know.

First is that a day of caregiving is made up of a thousand moments—it is a dense fabric of exchanges lasting from a second to a quarter hour—any hundred of which may be coloured by irritation, resentment, boredom...all the hues of bad feeling. So it comes to seem a hybrid, qualified thing. A quilt which, even if the overall design is good, has too many missed stitches and dull or plain ugly squares, to earn that open-vowelled epithet: good. (I tutor a boy who prints the word as four perfect circles, then adds the up-tail and down-tail at either end, leaving out the g’s curl so as not to jar the symmetry.)

No real relation is so simple as good. Good may suit a given moment, a cursory look. For anything sustained or scrutinized, it is too fondly round.

That is part of it.

But also—often I am just too plain exhausted to feel that I am doing good. Satisfaction with exertion requires a pause, a moment, after the breath is caught, to appreciate the effort expended. First, though, the head must be kept down, tucked inward over the heart to regain the spent strength. Until that happens—and there are days when no pause lets it happen at all—exhaustion takes all the space it needs, which is often all the space there is, leaving no room for anything else.

Exhausted, I am not good, no more than I am bad; I am not even I, quite, since I requires some corner of consciousness not given over to doing.

And—there is more. There is always more when you parse a common word.

It is hard to feel good about any efforts that are part of something producing so much suffering and destruction. I imagine a doctor treating wounds behind the front lines in a war. Can he feel good about the stumps he cauterizes, cleans and dresses—actions without which lost limbs would have been a lost life? (And the soldier screaming Let me die! I don’t want to live without legs!—that, too, forbids good, shoves it out of the room as an obscenity.) The most the frontline medic may feel is that he, or his actions, though they occur in a zone of deep wrong, belong to a stream that comes from, or goes to, a place of good.

At a given moment, he may be flailing, cursing the debris-choked water, fighting its turbid shifting currents, choking, even drowning—but he is in the right stream.

How can you pin a gold star on flailing in the right stream?

Because sometimes you just have to. Sometimes nothing helps but the simplest, most unmistakable murmurs of our earliest rewards.

Good person. Good son.

Good. The first, best prize. The relic in the deepest cave of self, wrested in how many pitched battles from the dragon hoard of bad.

Good.

The round bright pebbles, bathed by a crystal stream.

Comments Welcome: A Caregiver’s Journal (No. 2)

Trench Mouth

Whitman: I above all promote brave soldiers.

So do I. And I want to be one. And sometimes, perhaps often these days, am. Days will go by when I can fight in sweat and silence—without feeling the need to talk, except to myself, about what I am doing and how I am doing it. But then an un-brave need wells up in me to howl, to whine, to jabber at anyone about what I am experiencing. I can beat the urge down, repress it. Often I do. But when I do, when I shrink it forcibly back into silence, I feel it turn into something small but hard in its need, something sapping, even poisonous. Then the unsaid sayable becomes an animal, tiny but with sharp teeth and claws, that I have driven into a corner of myself. It will stay there, for now, but it can’t live there. Eventually it will have to force a way out, gnawing and tearing.

But there is this dilemma: how to give voice to my own suffering without violating the suffering of others?

Within true expression, there is no perfect solution. However much I censor and edit (and already in the first post I deleted more intimate glimpses that bubbled up), I cannot talk about my own life caring for Dad and Mom without trespassing, at least a little, on their lives.

I will try to avoid what seems too graphic, too intimate—skirting, as a sacred area sensed in the dark, what would shame or dishonour them, or others. I will fail at this sometimes. But I will try to use the failures to readjust my sense of too-far, my compass of decorum.

I will try to focus mostly on the feelings, thoughts and quandaries caregiving roils up in my life. But to do so without ever referring to the events of caregiving, the thousands of acts and moments that make it up, would be to make caregiving seem abstract.

And abstract is the very last thing caregiving is. It is such a relentless plunge in the real and urgently required—a kind of waterboarding of the necessary—that it can make the rest of life—the merely preferable, advisable, strongly needed: all that falls short of the absolute Do Now!—it can make all that abstract.

That is a very alienating thing caregiving does. To make the stuff of daily life, all that is not caregiving, seem like a hollow mask, a set made from papier mâché and poster paints. Or if the world stays real, it does so as a shell, a mere thin casing to hold caregiving itself.

For some months I had stopped seeing my longtime psychiatrist. The hour I spent with Lindsey, as helpful as I found it, made my day an hour longer, by delaying by an hour all that had to be done by day’s end. Just recently we resumed. Hour-saving ran up against “airplane survival” as advocated by Segbingway’s doctor. If you don’t keep your own oxygen mask in place, you can’t hope to help the passenger in the seat beside you.

That is my excuse, too, for when I say too much, for when my mouth runs away with me.

“Sorry, Mom and Dad,” I say silently, and sometimes aloud at such times, still speaking as if sitting with them in their living room, though Dad has been dead almost ten months and the house sold five weeks ago, “but I cannot help and honour you unless I sometimes pause and help myself, even at the risk of dishonouring you.”

Talk was the oxygen I needed. I’d lived so long in airless striving that I thought I had nothing to say. But my mouth opened of its own accord, and out the words ran. It was like a spigot of bitterness and disgust that only needed one small twist to gush.

What poured out that day was nothing that dishonoured Mom and Dad, not directly. That day, it was about the others—I will not name them here—who know what this fight is costing us, and me, whose duty by any reckoning is to help, and who contribute nothing of their time or energy or presence. Who know that we are floundering and will not reach out a hand or so much as a stick to help. Who will not even look on in sympathy from the shore.

They maintain a perfect silence. Them—the uncivil civilians—I won’t forget.

Silence is only brave if it keeps you in the war. Some soldiers, not the noblest, need babbling in the trenches.