Illustration by Ponomariova_Maria / iStock / Getty Images Plus
My mother’s slender, graceful fingers are knobby now. Rheumatoid arthritis was the final gut-punch of the Legionnaires’ disease that collapsed her lungs 15 years ago. Massive doses of antibiotics so screwed up her system that she cannot tolerate other drugs, especially not the fancy new medicines for RA. At 87, she has been forced into inactivity—the cruelest loss of all, because it leaves her no way to burn off lifelong anxiety. The only bit of relief is the lowest-dose Xanax, which she then cuts into quarters and takes eagerly every four hours, abject as a saint opening her mouth for Communion.
On one of our increasingly frequent dashes to urgent care, she is asked whether she has a living will.
“Living will, dead will,” she says with a shrug. “I’ve got ’em all.”
The templated form makes her wishes crystal clear: no extraordinary measures, no heroic interventions in the natural order.
It just fails to clarify what is heroic.
When Nette’s ankles swell like pufferfish and her words slur, I worry. As thin as a sprite, she carries no water weight, nor does she toss back martinis. These are warning signs.
My husband, Andrew, drives her to urgent care, then calls me at work: “Babe? They want us to go straight to the emergency room.” She winds up admitted, her heart rate spiking wildly. The RA is stiffening lungs already scarred by Legionnaires’, and thus burdened, her heart—which has held more love than most—is not doing as well pumping blood.
I wrap my arms around myself, blame the chill down my spine on the hospital air conditioning. Then I swaddle her in extra blankets, realizing that the role reversal now begins in earnest. She is my baby-mama, even frailer than I knew. I need to see her through this.
The hospitalist says she is anemic and suggests giving her iron by IV so it doesn’t upset her stomach. For some reason, they do this late in the evening. We have just gotten home, and we are greeting our worried standard poodle (whose nervous system resembles my mom’s) when the phone rings.
It’s the charge nurse, and she begins with so many caveats about procedural safeguards that I ought to know something is wrong. But I am my mother’s daughter, swiftly reassuring the nurse that we know how good the care is—which frees her to get to the point.
My mom has had a reaction to the iron transfusion, and her heart stopped.
Resuscitated, Nette’s first words are a gentle, teasing reproof: “I told you I couldn’t tolerate drugs!” In the wake of her demise, she seems unusually calm, and we are too gutless to explore: What if she does not realize she died, and finding out further stresses her heart? Andrew and I wait for a clue, but nothing comes until she is near discharge. We beg her to come stay with us “just for a while, till you’re stronger.” She pushes back. We push back harder. Then she asks, in the practical mom tone she used to quiz me on the multiplication tables, “What will you do if I code again?”
We just blink.
By the weekend, my mother is ensconced on a reclining loveseat in front of our TV and fireplace. A sullen gray oxygen concentrator squats next to her, a clear tube looping from its mouth. The dining room table is stacked with gauze for her swollen, weeping legs, oxygen cannulas we call “nosie-things” because we can’t remember the word, and soft footies I have split to accommodate her swollen feet.
“Oh, what I’ve done to your house!” she moans, waving at all the medical accoutrements. My mother lived amid pastels and sparkling glass, and now she’s stuck in a cluttered century-old farmhouse. I do my best to pretty things up, tucking the amber pill bottles in a wicker basket and tying a big bronze bow on the concentrator. We use the streamers to tug it down the long hall every night, rolling toward the telemedicine machine. She dreads this procession; her heart rate spikes the minute we say it is time. Then a nurse sees the reading and calls, saying we need to rush her to emergency. And then we explain that this happens all the time…
I settle her on the loveseat again. “How about a new blanket?”
“How about a new life?” she retorts. It takes negotiations worthy of Malta to convince her to use a pill minder. She pokes through the assortment. “Why do I have to take this A-fib pill?”
“Because your heart is racing.”
“Well, let it race on home like Marigold.” I look up sharply, thinking she’s addled, but it turns out Marigold is a racehorse who had to be put down.
Nette’s beloved primary care doc makes a house call, and they sit together on the loveseat while he checks vitals and she checks on his health, his son, his dog who just died. Afterward, escorting him to the front door, I ask, awkwardly, how she is really.
“She’s dying,” he says gently, “and she wants to die.”
We switch, at the doctor’s suggestion, to hospice. A week later, her numbers are so much better, Nette decides that she will renew her car insurance after all.
This often happens, according to Dr. Erin Bakanas, professor of palliative medicine at Washington University. “People thrive when you have to stop intervening for everything. Some care is data-driven; it’s reacting to numbers”—which is a nervous chase, when you’re not even aiming for a cure. Still, it makes me nervous not to react to those numbers, as though I have stopped fighting for my mom.
“What you are fighting for now,” Bakanas reminds me, “is her comfort.”
But she’s so perky now. Maybe we did this too soon?
“There are rally days, and they are a gift,” Bakanas says gently. “They don’t mean you made a mistake.” People come to hospice too late, she adds, because no one wants to broach it with them. The earlier you begin, the better the hospice team can understand what matters most to you. Your quality of life improves dramatically. Besides, you can go right back off hospice if you get better.
Nette has no such intention; we scheme about ways she will malinger to stay in this program. She loves her nurse, Linda, who is calm and funny and tender, and she is thrilled that she no longer has to make that trek down the hall. No vitals need be taken. Nothing is vital anymore, except her peace of mind and body.
A friend lends us a motorized recliner to take the pressure off my mom’s bony bottom, and she operates the controls like it’s a video game. We eat dinner on trays, watching Frasier reruns and Wheel of Fortune. “Thank you, Jesus, for the Wheel,” Andrew sings out every time it comes on, quoting an old sitcom, and we all laugh. But beneath the coziness, I feel a formless dread, cold as dry ice. Somebody once asked what my greatest fear was. “To watch someone I love suffer and not be able to help,” I blurted.
And here we are.
Except, I swiftly remind myself, the whole point of hospice is to alleviate suffering. Linda has already given us an emergency care package of drugs that can ease breathing, pain, anxiety, nausea. I need to relax, let up on the frantic overwork, the “helping” that really doesn’t. Why, again, am I grinding up calcium supplements and forcing that grit down her narrow throat when she could be swallowing homemade soup instead? As I lose the habit of panic, this new framework comes as a blessed relief: Nature will take its course.
This is a tough lesson for anyone raised with the cowboy triumph of Western medicine. But we are fast learning it. A study published last December in The New England Journal of Medicine noted that for the first time in more than a century, more Americans are dying at home than in hospitals. Turns out we prefer the quiet ease of a family home to beeping codes and constant interruptions and the miasma of adrenaline.
My mother seems deeply contented to be with us, and the next few weeks are good, full of laughter and tenderness. Until the digoxin that is helping her heart starts making her hallucinate.
“Last night I dreamed I was sleeping on the ceiling,” she confides, amused. But soon she can’t sleep at all. There are jolts, like punches, at her and around her, and men and women walking through our house, staring at her... How do you choose between nightmare and blood flow? Linda uses the word “balance,” which helps me feel less like we’re trapped between boulders and sandpaper. For days we experiment with dosage and crank up the oxygen concentrator, which by now seems like a dull and wheezy distant cousin who has invited himself to stay indefinitely. Nette starts asking us to pray that she dies soon. What if her lungs fail before she does? Just thinking about what it must be like to fight for breath squeezes my chest tight, and I pour myself a shot of Jameson.
“Honey, do you drink every night?” my mom asks worriedly.
Only these nights. My nerves (likely inherited) are starting to fray. My sweet stoic husband has come down with shingles, no doubt from the stress of keeping me sane. I wonder wildly whether we could persuade Linda to move in. Refusing to use a walker (they are for old people), my mother totters down the hall in a too-long bathrobe she refuses to let me hem, clinging to the wall like a drunken sailor. I lie awake at night waiting for her to fall. In the morning, I put the dog’s food on my mom’s cereal and her blueberries on his kibbles and fall asleep at stoplights on the way to work.
Incontinence, which I had forgotten to dread, arrives next—and it is a relief. I would not have predicted this particular epiphany, but there is something redemptive about cleaning up your mother’s shit. All the mess of humanity becomes tolerable. I believe I could diaper Great Britain’s prime minister, should the need arise.
Weirdly, I am finding that I prefer the crises, the harried times I’m cleaning up diarrhea with two phones and the doorbell all ringing at once and the dog barking and my mom tangled up in her oxygen tubing. What is worse is when life quiets into normalcy, that godawful “new normal”—which is all about an ending, yet there is no end in sight.
And then there is.
One Saturday, Nette wakes from a nap confused and so agitated, I run for the emergency pills, find the one meant to calm her and ease her breathing. She pushes my hand away, saying, “Goodbye, goodbye, goodbye, goodbye.”
Is this it? I take a deep breath and calmly offer the pill again. This time, she accepts it. Her breathing softens almost immediately.
We are OK for a while.
And then the bleeding starts.
She notices it in the bathroom, and we have no idea what is causing it—UTI? Kidney? Time after time, when she rises, the bowl is bright red. I gear up for a trip to the ER. Then I remember: We are not doing that.
She is not in pain, she assures me, but I see frantic worry in her eyes. Waiting for the usual sort of medical alert and intervention, she has forgotten, as I did, how hospice works. Diagnosing would mean tests, some of them likely invasive, and medicines or procedures she cannot tolerate.
Linda is also puzzled by the bleeding but just says we should watch it. My mother has never been one to “just watch” anything. She is clearly alarmed but too weak to take charge, and I can’t be sure what she wants. Is it just that blood is viscerally upsetting? What if she’s forgotten what hospice means? “Do you want to switch gears, get this looked into?” I ask. No, no, she assures me—but she still looks scared, way more scared than she was to hear that her heart and lungs were failing, and she checks for the blood every time, and I have no idea whether she understands why I am not rushing her to the hospital or if she thinks, deep down, that I just don’t want to bother.
Every time I see that blood, I feel like a murderess.
Later, Bakanas will remind me that rushing a dying person to the hospital is not necessarily a simple charitable act: “Medicine can go barreling down the path, and once you start intervening, there are consequences. More problems can arise, leading to an outcome your mom didn’t want.”
When families come into the BJC Hospice program, Dr. Patrick White, its chief medical officer and the chief of Bakanas’ division, tells them plainly, “There will be times that you second-guess your decision.” I could regret not rushing her to the ICU, or I could think, “How could I have handed her over to the ICU and let them put her through all that?” Ten different doctors rushing around, decisions to make every hour, chaos all around her…
I take a deep breath and set my qualms aside. What I am really setting aside is the last illusory burst of control: When and how Nette dies is not up to me or anyone else. Forcing myself to stay in the present tense, I fight my way through body fluids: blood and feces; the cloudy, sticky drinking glass (we are using thickener now); the weird dark goo that mysteriously gathers at the corners of my mother’s lovely mouth. Her death does not scare me anymore; I crave it as much as she does. We are past the point of savoring these last days. She is so done.
Still, I push the breathing treatments. Air is not something you compromise on.
Or is it? This is what I still do not trust myself to know: when to nudge and when to let be. The question goes far beyond hospice. It is the deepest secret of relationship.
“She’s more out of it now,” I tell Linda. “Should we try an oxygen mask? Jack up the concentrator another notch?”
“I think she is just having more difficulty with breathing,” Linda replies evenly. “Her lungs are just not very good right now.” Again, my need to be reminded: There is no need to fly into action. Nothing to fix.
We muddle on, until a fine spring day—her favorite season, soft and new—when she flips back to agitation: “The taxes!”
“All done,” I say a little smugly. “I even paid your estimated taxes for the year already, so I wouldn’t forget.”
Her fine-boned face lights with relief, and she closes her eyes, spinning herself back into the cocoon that shields her from the world’s jostling. For dinner, I make her gourmet macaroni and cheese with bacon crumbles, plus brownies from scratch.
“That smells delicious!” she stuns me by saying, and for once she eats every morsel. After dinner, we watch a little Frasier. Then Andrew freshens her bed, and as I tuck her into the smooth sheets, she scolds, “You’re not praying for the right thing.”
“We can’t quite bring ourselves to do that,” I say. “But Baby Jesus” (my mom loves babies so much, she prefers to pray to one) “will know when the time is right.”
She smiles, gives a little nod, closes her eyes.
The next morning at dawn, I tiptoe downstairs, relieved that for once, she seems to be sleeping peacefully, with no moaning or chatter.
Her face is serene, her bedclothes untangled: She died just as she hoped to, peacefully in her sleep.
