I’ve just returned from a much anticipated, much dreaded three-day sojourn in Connecticut, where I saw Mom for the first time in her new living quarters, an extended care facility called Arden Courts. My family had given me a pretty clear picture of what to expect, but they couldn’t prepare me for the emotional wallop of seeing her, dozing in the common room, wheelchair-bound, listing to the side, head tilted back, arms stiff, legs atrophied, feet puffy in her unused shoes. She rouses when prodded, but mostly stares off in the distance. When she looks at you, her brown eyes seem glazed, as if milk has been added to the coffee she always preferred black and hot.
In past visits, I found it challenging and even amusing to analyze Mom’s speech as if it were modernist poetry, with its odd juxtapositions and parataxis. I got satisfaction from trying to piece together the associative logic of whatever constellation of phrases she managed to utter. What my poetry reading training didn’t help me with, however, was her performance of the poems. When she strained and grunted to get words out, it was so excruciating that my intellect and imagination failed, and I was wrecked by a complex of grief (desire to hold on) and desire to flee.
But now Mom scarcely speaks at all, and when she does, she is barely audible. There is no longer any trace of associative logic. Just flutterings of weightless words, like dust bunnies that hop away when you try to sweep them into a dustpan. Language eludes her going in as well as coming out: she got no pleasure from listening to me read Jane Austen aloud. She seems remote and distant, like a cuckoo tucked away in an elaborately carved wooden clock. She chirped up when I talked about her grandsons, Luke, Thomas, and Zac, and she sang along to a couple of children’s songs that she used to sing to them at bedtime, “Jack Was Ev’ry Inch a Sailor” and “Edelweiss.” She couldn’t get out all the words, but her sweet, pure voice came through here and there, marred only by my quavering pitch.
Although she said little, she knew who I was. When I told her I loved her on the first day, she replied, “I love you, too, Suze.” On the second day, she didn’t seem to recognize me, but on the third, when I said, “Do you know who I am?” She said, “Of course I do.” “Who am I?” “You’re Suzanne Churchill.” When I cried (admittedly often), she smiled more, as if trying to cheer me up. Her strongest sentence, the one she can articulate most clearly and at appropriate times, is: “I love you very much.” One could do worse for famous last words.
It was hard to see her so altered, hard to realize that her caregivers would never know her as she had been—a lover of books and music; intellectually curious, meticulously dressed, and sociable; an ardent wife, devoted mother, loyal friend, anxious perfectionist.
Mark Olsen and Will Scheffer, creators of the HBO series “Getting On,” talk about these hard losses in an interview with Terry Gross on NPR’s Fresh Air. The show (which I haven’t seen but want to) is set in a women’s extended geriatric care facility, and the writers draw upon their own experiences caring for their aging mothers. Olsen’s description of his grieving process struck a chord:
I had that poetic little moment that was quite narcissistic that, oh my God, there will come a day when she says I love you for the very last time. And that was sort of my self-involvement with it initially.
But over the course of those years, I certainly learned that – that day did come, certainly, but the relationship did not die in any way, shape or form. It continued and progressed and had great value. … but when my mother finally lost the capacity to speak – because she was a very articulate woman, a very verbal woman with a very storied past – when she lost that ability to speak, and she was left with caretakers, it saddened me tremendously.
And it didn’t matter who the caretaker was, good caretaker, bad caretaker. It didn’t matter – that they would never know who this woman was.
That’s the bald reality of dementia: so much just doesn’t matter anymore. Even if her caretakers could know who she was, she wouldn’t know the difference.
You’d think losing language would make it harder to be with Mom, but strangely, I found it easier. My plan had been to visit twice a day, stopping in for a few minutes on my way to do research at the Beinecke Library and again at the end of the day. I thought short visits would be better—and probably all I could bear.
But now that she can barely speak, the only thing I can do is be with her, sitting beside her repeating stories about my life and hers, holding her hand, wheeling her around the halls and courtyard, and breathing with her when she gets agitated. An hour passed yet I had no desire to leave.
I didn’t understand my strange sense of quietude until I heard Will Scheffer’s explanation on Fresh Air:
I think what caring for our mothers really taught us, all the way up through the hospice experience was…that this part of life… that so many people are afraid of, and for good reason, it’s kind of a privilege to be able to be there when you can.
…that act of carrying on conversations with someone who can’t speak to you and being with them as they’re dying, there was a kind of sense of privilege that we began to feel and sort of a sense that gosh, you know, I was so afraid of this, I didn’t want to do it. I didn’t want to be here.
But being here is starting to feel like a good thing, a good part of life, something that we avoid in this culture but that actually is a rich experience, albeit painful. It actually is so much a part of life. And so many people never get to be in it.
I didn’t want to be here either. None of us did. I only get to be in it with Mom for a a handful of visits, a few times a year, so it is a privilege—”a rich experience, albeit painful”—to be with her as she withdraws, as her brain shrinks and the channels widen between its folds. As she diminishes into a state of mere being, all I can do is be with her—just be. That’s what my yoga teacher, Amy Schneider, invites us to do; she asks us to set aside our thoughts and feel “how good it feels to just be.” It’s a kind of meditative state, this mere being, one that makes me wonder what it feels like to be Mom, as she reaches the end of cognition and finds herself on the outskirts of language.
Wallace Stevens tried to imagine this state in his late poem, “Of Mere Being”:
Of Mere Being
The palm at the end of the mind,
Beyond the last thought, rises
In the bronze distance.
A gold-feathered bird
Sings in the palm, without human meaning,
Without human feeling, a foreign song.
You know then that it is not the reason
That makes us happy or unhappy.
The bird sings. Its feathers shine.
The palm stands on the edge of space.
The wind moves slowly in the branches.
The bird’s fire-fangled feathers dangle down.
~Wallace Stevens, 1954~
Stevens combines gleaming imagery and gorgeous alliteration to transport us beyond reason and emotion into a realm of pure sight and sound. I try to imagine what it’s like in Mom’s mind—”at the end of her mind,/ beyond the last thought.” She is moving to a state “without human meaning, / Without human feeling,” and it’s a “foreign song,” one I don’t understand and can’t sing. But there is a kind of grandeur to the utter, defiant loneliness of “mere being,” a primal beauty in the isolate calm. When Mom stares out into the distance, maybe she is seeing “fire-fangled feathers dangle down.” Or maybe she sees nothing at all. In any case, it is good to just be with her.