And then those words, which turn out, in some instances, not to be a relief at all: “She seems to be out of the woods.”
She had not had a stroke. She’d had a massive seizure. The differences between which being not exactly clear. And, if she had more seizures, which she likely would, this would kill her, an explanation and urgency that somehow resulted—“Did you agree to this?” I said to my sister. “I don’t think I did, did you?” “I don’t think so”—in my mother getting vast amounts of anti-seizure drugs, as well as being moved, once again, into more or less long-term hospital residence.
Coherence was completely gone. All that was left was a jumble of words and incredible anger.
Oh, yes, and here was the thing: The anti-seizure drugs were preventing further devastating and probably lethal seizures but, in themselves, were frying her brain even more.
And too, within a few weeks of lying in bed and resisting this final cataclysm, what abilities she had to walk, what slow and shambling remnant of walking, were gone.
This is where we were: immobile and incoherent. And filled with rage.
And so the first effort to directly talk about the elephant.
It happened in an interior room at the hospital, too small for much, and filled with cast-off furniture, into which fit her doctor, her neurologist, her social worker, and my sister and me. It seemed like the adult thing for us to do, to face up to where we were, and to not make these people have to tiptoe around the obvious.
I thanked everybody for what they had done, and then said reasonably: “How do we get from here … to there?”
An awkward number of beats.
NEUROLOGIST (shifting in his chair): “I think we want to define here and there”—and tossing to the doctor.
DOCTOR: “Your mom is quite agitated. So we don’t really know what her less-agitated state will be.”
MY SISTER: “What are the chances that she will come back to anything like where she was before the seizure?”
SOCIAL WORKER: “We always have to deal with a variety of possible outcomes.”
ME: “Maybe you could outline the steps you think we might take.”
DOCTOR: “Wait and see.”
DOCTOR: “Change the drugs we’re using.”
MY SISTER: “Can we at least try to get a physical therapist, someone who can work her legs, at least. I mean … if she does improve, she’s left without being able to walk.”
NEUROLOGIST: “They’ll have to see if she’s a candidate.”
ME: “So … okay … where can you reasonably see this ending up?”
NEUROLOGIST: “We can help you look at the options.”
ME: “The options?”
SOCIAL WORKER (to my sister): “Where she might live. We can go over several possibilities.”
It was my Maui brother who, with marked impatience, suggested that I obviously had no idea how the real world works. Such a conversation, treading on legal fine lines and professional practices, must be conducted in a strict code—keep saying, he advised, “quality of life.”
A week later, same uncomfortable room:
ME: “Obviously we are concerned on a quality-of-life basis.”
my sister: “She is completely transformed. Nothing is as it was. She’s suffering so much.”
DOCTOR: “The baseline has clearly dropped.”
NEUROLOGIST: “The risk is that the levels of medication that the agitation might respond to could depress her breathing.”
ME: “Again, this is a quality-of-life issue, right?”
DOCTOR: “Of course.”
ME: “The agitation seems extreme enough to warrant I would think going some distance, considering the quality-of-life issues. Even if that—”
NEUROLOGIST: “I’m not sure I’d be comfortable …”
ME (with a sudden brainstorm): “Or what happens if you just discontinue the drugs? Just cut them out.”
NEUROLOGIST: “Cold turkey could precipitate a massive seizure.”
ME: “And death?”
NEUROLOGIST: “And death. Possibly. Yes.”
ME: “Is this an option?”
NEUROLOGIST: “You have to make that decision. We can’t force her to take medication.”
Discontinuing the medication felt like both a solemn and giddy occasion. A week passed, and then the doctors began to report in a chipper way that she was doing well, all things considered. She had withstood the shock to the system. She was stable.
And then the social worker came around to say we were coming threateningly close to the maximum number of hospital days for which Medicare would pay. (We’d heaped another few hundred thousand in cost on the American taxpayer.)
“Now,” said my sister taking the straight-man role, “what do we do?”
My mother—infuriating us with her primal stubbornness—was transferred to the locked-floor dementia ward at the Atria facility in Riverdale, where the only caveat to patient behavior seemed to be a strict rule against hitting. Nine days later, after my mother socked a locked-floor aide, we were back in our room at St. Luke’s, where—because of her brief discharge, she could begin her Medicaid hospital-stay allotment from day one—she was happily received (for another couple of hundred grand).