The rate of hospitalization for all other age groups is declining or holding steady, but for people over sixty-five it’s skyrocketed. The elderly use 50 percent of all hospital days, according to one study. Emergency rooms, the last stop for gangbangers and the rootless, at least in the television version, are really the land of the elderly, and their first step into the hospital system—where, as Medscape matter-of-factly explains, the “inability to recognize normal aging changes … raises the chances of iatrogenic illness.” Iatrogenic illnesses being the ones caused by hospitals or doctors.
My mother went to the Atria’s after-dinner movie—The African Queen, as I recall—one evening in May and then told someone she was short of breath. My sister got to the emergency room first—St. Luke’s Roosevelt—and called me to say I ought to come.
Everybody would manage his or her parent’s decline differently. Nobody is proud of himself. We all mess it up. This is partly because there is no good outcome. And it is partly because modern medicine is a random process without a real point of view and without anyone ultimately being in charge. The buck is relentlessly passed. Down this rabbit hole, we all become ineffective and pitiful.
My mother’s cardiologist, Dr. Barbara Lipton, a peppy younger woman who, annoyingly, called my mom “Mom,” had been for many years monitoring her for a condition called aortic stenosis—a narrowing of the aortic valve. The advice was do nothing until something had to be done. If it ever had to be done.
This was good advice insofar as she had lived with this condition uneventfully for fifteen years. But now that she was showing symptoms that might suddenly kill her, why not operate and reach for another few good years? What’s to lose? That was the sudden reasoning and scenario.
My siblings and I must take the blame here. It did not once occur to us to say: “You want to do major heart surgery on an eighty-four-year-old woman showing progressive signs of dementia? What are you, nuts?”
This is not quite true: My brother expressed doubts, but since he was off in Maui, and therefore unable to appreciate the reality of, well, the reality of being near, we discounted his view. And my mother protested. Her wishes have always been properly expressed, volubly and in writing: She urgently did not want to end up where she ultimately has ended up. She had enough sense left to resist—sitting in the hospital writing panicky, beseeching, Herzog-like notes, to anyone who might listen—but of course who listens to a woman who scribbles such notes?
The truth is you’re so relieved that someone else has a plan, and that the professionals with the plan seem matter-of-fact and unconcerned, that you disregard even obvious fallacies of logic: that the choice is between life as it was before the operation and death, instead of between life after the operation and death.
Here’s what the surgeon said, defending himself, in perfect Catch-22-ese, against the recriminations that followed the stark and dramatic postoperative decline in my mother’s “quality-of-life baseline”: “I visited your mom before the procedure and fully informed her of the risks of such a surgery to someone showing signs of dementia.”
You fully informed my demented mom?
The operation absolutely repaired my mother’s heart—“She can live for years,” according to the surgeon (who we were never to see again)—but left us longing for her level of muddle before the valve job. Where before she had been gently sinking, now we were in free fall.
She was reduced to a terrified creature—losing language skills by the minute. “She certainly appears agitated,” the psychiatrist sent to administer antipsychotic drugs told me, “and so do you.”
Six weeks and something like $250,000 in hospital bills later (paid by Medicare—or, that is, by you), she was returned, a shadow being, to Eighty-Sixth Street and her assisted-living apartment.
Unmoored in time, she began to wander the halls and was returned on regular occasions to the emergency room: Each return, each ambulance, each set of restraints, each catheter, dealt her another psychic blow.
And then we were evicted. I had been pleasantly surprised when my mother moved in that only a month-to-month lease was required. Now I learned why. Dying is a series of stops, of way stations, of signposts. Home. Assisted living. Nursing care. Hospice. You are always moving on.
But before we were evicted, there was another Thanksgiving—this one at my house, my mother collected and transported, my children reassembled—and then the next day, the “event.” The big one.
We had reached, I gratefully believed, her end.
EMS arrived, and once more, we were back in the St. Luke’s emergency cubicles. My mother’s “presentation” could not have seemed bleaker. The young resident was clearly appalled that we might have strayed outside the time frame for administering the drug that could slow the effects of what surely seemed to be a stroke. Of course, they were yet game to try. But we held our ground: We elected to do nothing here (prompting much renewed scrutiny of the health-care proxy). And please note the DNR. Hours passed. I left and came back. My sister left and came back. One of my mother’s aides left and came back.
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.”
What? How?
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 antiseizure 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.”
NEUROLOGIST: “Monitor.”
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.”
ME: “Live?”
It was my Maui brothe
r 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.”
ME: “Hum.”
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).
What do you do with your mom when she can’t do anything—anything at all—for herself? This is not, first and foremost, about how you address her needs but about where you put her. No, it is first about who or what facility will take her.
No, it is first about what member of the family will actually sort through the incredibly byzantine and deadening options—or lack of options.
It is at this point that I became unreasonably mad at my Maui brother. In a way I understood the basis of his excuse: It was not a coincidence that he was living in Maui—his twenty years in paradise were in part an exercise of the modern right to distance himself from his family, a point which he was militantly maintaining now. He lived in Maui precisely to be far from all this. It was notable that among the people with whom I shared my tales-of-mother crisis, many, with far-flung ailing parents, identified themselves as the Maui brother. Of all things to escape, this might be the big one. And, too, in my Maui brother’s defense, all responsibility is relative: If he was doing less than I was doing, I was doing by a significant leap less than my sister was doing.
It is among the most reductive facts in this story: Women take care of the old. They can’t shake it because they are left with it. In the end, it is a game of musical chairs. The girl is the one almost invariably caught out.
My sister assembled the list of potential nursing homes, special elder-need facilities, and palliative-care centers in commutable distance. I grudgingly went along to the best after she’d eliminated the worst. Medicare grades each of these institutions on a five-star scale. Four stars were already charnel houses. One star therefore unimaginable. Just about the only five-star facilities in Manhattan are for HIV-positive patients.
Finely tuned into my mother’s profound fear of virtually all strange presences, touches, and noises, and yet her need for constant attention and reassurance, my sister found fault with every place. This might have finally annoyed me, except for the fact that each of these places wanted you to pay prodigiously for its depressing indifference, and, what’s more, many either excluded my mother’s condition or had waiting lists that would, it seemed reasonable to assume, outlast my mother.
Hospice was the best alternative. But while my mother was surely dying—with her doctors gladly willing to certify her in this regard—hospice, we so learned, was not for the certainly dying but the promptly dying.
Curiously, and unhelpfully, it was at this time that one of the neurologists making occasional visits took it upon himself to reevaluate my mother, declaring that her diagnosis was wrong. She did not have Alzheimer’s, as everyone seemed to assume. She had dementia, surely, but it was not going, and would not follow, the pattern of Alzheimer’s. She would not disappear; she would maintain some awareness and consciousness of her surroundings, he said, as though this were good news.
It was Marion, my mother’s aide, a woman of remarkable humor and constancy, who had shown up one day, sent by a random agency—and who has now been with my mother every day for almost eighteen months, not a day missed—who suggested just “bringing her home.” The best Manhattan approximation of “home” when there is no family homestead seemed to be the studio apartment where she is now, a short walk from my sister’s house.
My brother could only see this as a quagmire of cost and responsibility. My sister assured him, as the doctors were assuring us, that six months was a realistic outside framework. My brother did his own Google search. “Yes, yes, they’re right, six months at this stage is what you can expect. But you know what they die from? They die from neglect! Neglect! There’s no neglect here! It’s unnatural!”
I signed the lease.
“Who can believe it’s been a year?” said Marion when I signed the lease for another year a few weeks ago.
My sister comes over every morning. She brings the groceries, plans the menu, and has a daily routine for stretching my mother’s limbs (this in addition to the administration and paying of caregivers, and the collecting of monies from the always recalcitrant John Hancock). I’m here a few times a week (for exactly thirty minutes—no more, no less). Her grandchildren, with an unalloyed combination of devotion and horror, come on a diligent basis. And we have our family events: holiday meals eaten around her bed. Her eighty-four-year-old brother and his wife visit regularly, and so does her eighty-nine-year-old cousin and her daughter. She even has one friend left who still calls her every day (all the other friends fell away a long time ago), conducting an extremely one-sided conversation over the speaker phone.
An occasional letter arrives from retired friends in sunny climes who have somehow missed or have been unwilling to register my mother’s condition. They take up in mid-conversation, proposing lunch the next time they are in the area, and recounting details of lives still going on. They continue to regard my mother as a woman who chats, cooks, reads, gossips, and commands attention. Always, suddenly, shatteringly, reading these letters, I see her this way too.
The absurdity of where we are, here on death row, measured not just in our heartache but nationally in hundreds of billions of dollars, can only be missed by the people who have no experience with the true nature and far-flung extremes of quality of life.
A few weeks ago, my sister and I called a meeting with my mother’s doctor. As others had fallen to the wayside, the head of gerontology at St. Luke’s, Dr. Brenda Matti-Orozco, a patient, long-suffering woman, had stepped up to this job.
The doctor eased into our meeting with tales of health-care-administration woes, of cuts in Medicaid, of fewer beds in fewer facilities aroun
d town—did we know, she asked, that Cabrini had closed? Some people, she said, just upped and left their old relatives in the hospital. So much for the small talk.
“It’s been a year,” I began, groping for what needed to be said: Let’s do this, close it down, end it, wanting to murder the euphemisms as much as my mom. “We’ve seen a series of incremental but marked declines.”
My sister chimed in with some vivid details.
The doctor seemed at first alarmed that we might be trying to foist my mother back on her and the hospital and relieved when we said, frankly, we planned never to return to a hospital. We just wanted to help her go where she’s going. (Was that too much? Was that too specific?)
She does seem, the doctor allowed, to have entered another stage. (These half-life stages of death, such that you never reach it.)
“Perhaps more palliative care. This can ease her suffering, but the side effect can be to depress her functions. But maybe it is time to err on the side of ease.”
Another advance of sorts in our grim descent: Over uncertain weeks or months, her functions will depress even further in this ultimate, excruciating winding down.
“Your mom, like a lot of people, is what we call a dwindler,” said the doctor.
I do not know how death panels ever got such a bad name. Perhaps they should have been called deliverance panels. What I would not do for a fair-minded body to whom I might plead for my mother’s end.
The alternative is nuts: to look forward to paying trillions and to bankrupting the nation as well as our souls as we endure the suffering of our parents and our inability to help them get where they’re going. The single greatest pressure on health care is the disproportionate resources devoted to the elderly, to not just the old, but to the old old, and yet no one says what all old children of old parents know: This is not just wrongheaded but steals the life from everyone involved.
Best American Magazine Writing 2013 Page 23
