It is the twenty-second of April, and this will be my mother’s fourth hospitalization since the sixteenth of February, trapped in a deadly cycle of infections acquired, beaten back, acquired again. I text my brother and call Stacey, a friend of my brother’s and a private caregiver who for over two years has dedicated herself to making my mother’s dreariest days tolerable and her tolerable days transcendent. For the past two months she has also shouldered the heaviest burdens of those repeated hospitalizations. Ambulance rides. Long hours in ER waiting for a diagnosis and a room. Ordering meals three times a day, visiting on her days off, rescheduling salon clients to accommodate my mother’s needs.
I do what I can at two hundred miles’ remove, which mostly involves attempting to repair admission errors and occasional conversations with doctors. I meet only slight resistance whenever I ask that the hospital rescind the mechanical soft feeding order that enrages my mother when it mysteriously appears on her chart every time: “Yes I know she’s partially paralyzed but that stroke was years ago and she’s perfectly capable of eating non-pureed food.” Opposition grows stronger when I request that they reinstate the lorazepam which disappears from her chart all four times. This becomes considerably easier after the second hospitalization, when I can point out to the nurses that after it was withheld my mother made 120 phone calls in a single day. Sixty of them were to me, though I don’t mention this.
Stacey sounds terrible when she answers, wrung out and enervated, but says she’ll pack up her things and try to get to Mother a little early. “I won’t be able to visit with her tomorrow though,” she warns. “I can’t reschedule my clients again or I won’t keep them and…”
“No, I totally understand,” I reassure her. She is a person who lives life on the economic margins, as so many caregivers do. I wish I could do more to help but my mother’s own financial resources are buckling beneath the weight of the $7000-plus a month it takes to keep her housed and meet her complicated care needs, and I manage both hers and my own with an anxious eye on what I’ll be able to take on if she outlives them.
Within an hour the ambulance is summoned. By mid-afternoon Dr. M. calls to tell me that my mother is suffering from “some mental dysfunction” and has a white blood cell count of 29,900. Before I can ask what either of those things mean she adds, “Hopefully we caught it early enough, but my understanding is that you don’t want any heroic measures?”
She has never asked this before and my own blood chills. I start to reply with a simple “no” but hear the estate lawyer’s clipped tones echoing in my head – You are agent and executor and heir with disinherited siblings. Always, always watch your words – and amend it to, “We will all be abiding by the terms of my mother’s POLST, which specifies no invasive treatments.”
I am deep into research when my brother calls. A normal white blood cell count ranges between 4300 and 10,800 cells per cubic millimeter of blood. A count of 30,000 or higher is considered a “massive infection.” He has been doing research too, and sends me links on platelets and mean corpuscular volume. I ask if he knows what Dr. M. meant by “some mental dysfunction.”
“Well, when the ER doctor asked her what state she lives in she didn’t know, and after he told her she kept asking Stacey whether she’d gotten to California yet.”
That cements a decision that had been slowly coagulating in my mind. “I’m coming down.” I book a room in Arcadia for Saturday through the following Thursday and begin making stacks: of clothing, of yoga gear, of reading material, of the paperwork I need if she survives the infection and the paperwork I need if she doesn’t. The dull anxiety that has dogged me for two months is joined by a numb dread. Over and over with my parents I’ve walked the dark paths of debility to total or partial recovery and – once – to death, and decades of past experience have taught me that all roads lead to failure, that I’ll never do enough. The path of least resistance murmurs that I should stay home, manage medical and financial affairs from afar, leave the work of comfort both physical and spiritual to those with a better temperament for providing it than I. But right now my brother’s life is dictated by an Excel spreadsheet charting medication and feeding schedules for his cancer-afflicted shih tzu and Stacey clearly needs a break, so with a longing look over my shoulder at what a friend once called my “Zen-like existence” I point my Subaru south.
* * *
My brother texts me while I’m driving down. Isolation gear – including mask – required so if you need a drink or snack text me and I’ll come down. We meet at the hospital coffee shop – a surprisingly cozy space decorated largely with Starbucks logos – to review what we know of the situation. It’s a grimly familiar tale: UTI, clostridium difficile, pneumonia. During prior hospitalizations the doctors tried to maintain the tricky balance between the conflicting drugs required for the pneumonia and those that would knock down the c. diff, but this time they throw a lab sink worth of pharmaceuticals at her and hope that something sticks. Six antibiotics – three oral, three IV – up from four the previous hospitalization and three the one prior to that.
My mother calls before I’m halfway through my coffee, her words slurring together. “Where are you?”
“Chris told you that I needed to get something to drink before I came up. I’ll be there in a few minutes.”
“Chris? He was here, but he left.”
“I know. He’s with me. We’ll be back in a few minutes.”
“No he won’t. He was just waiting for you to show up and then he’ll leave.”
“We’re coming up together. But we can’t drink in the room because of the masks, so we’ll be there soon.”
The phone rings again in the elevator, but I don’t answer it.
The nurse looks annoyed when I stop by her station to ask how my mother is doing. “I’m busy right now but if you’d like to go to the waiting room – “
I cut her off. “We’re going to her room right now, so if you’d like to stop by when you have time…”
Her annoyance falls off slightly. “All right.” She looks down at the chart and then sternly up at me. “Wear a mask.” I nod but she isn’t satisfied. “People don’t like them because they’re uncomfortable but we don’t want her infection spreading all over the hospital.” I nod more aggressively. She glares as my phone rings in its pocket. “And don’t use that in the room.” My resulting nod is more tentative since I know my brother was texting me, and I flee before she can give me any more instructions.
“There are bleach wipes on the cart,” my brother says as soon as we’re out of earshot. “The nurse yesterday said it was fine to use your phone as long as you clean it.”
The cart is metal and coated in a scratched, pale yellow paint. I stare at it as if it’s going to bite but my brother, who has dealt with isolation protocol before, casually opens the narrow drawers and hands me things: a one size fits all yellow paper gown, bright blue latex gloves, a pale green mask. “The hole at the bottom of the sleeve is for your thumb,” he explains as I struggle with the gown. “Gloves go over that. It helps keep your wrists from being exposed. If,” he sighs as he opens all the drawers, “they have the right sized gloves.” Over the next five days I’ll encounter a few hospital employees approaching my brother’s 6’4” height, and all of them will complain about the lack of extra large sizes.
I examine the sign on the cart while I fumble to fasten paper ties behind my back. Small metal cards with pictures of gloves and gowns are nestled between rails, but the one for masks is missing. Intimidated by professionals who obviously know better I don a mask anyway although the nurse is right – they are very uncomfortable. It takes effort not to hyperventilate and my cheeks are sweating in the warm, dark room before fifteen minutes have passed.
My mother is, as usual, poised between excited to see me and angry that I haven’t been there all along.I refrain, as I always do, from pointing out that my husband and I tried to move her closer to us several times and she always refused. For the fifty-plus years that I’ve known her she has never particularly grasped the notion that actions and decisions have consequences – she and my father’s teasings that I was the only adult in the family grew less humorous as the years went by. And I suppose some dark corner of my soul has always been a little relieved at those “noes.” Because…well…sixty phone calls in a day. Multiplied by proximity. The existential math is daunting and my brother, who she turned us down to be near, has always been better at his own “noes” than I have when it came to our mother’s desires.
When I ask her how she’s feeling she says she’s fine and doesn’t know why she’s there. The six IVs, nasal cannula delivering two liters of pure oxygen and lymphedema pump with its cuffs wrapped around her legs seem to tell a different story. The lab results concur. Her white cell count has dropped to 29,100 but the furrowed brows of the hospital staff suggest that isn’t far enough, fast enough for the quantity of drugs being pumped into her.
As do – to be indelicate – the state of her bowels. The c. diff is still raging in her intestines and when the tiny young PCA Jessica, whose English is dubious but who communicates effectively enough with her radiant smiles and laughter, comes to change out her pad she realizes midway through the operation that volume and viscosity prevent her from handling it alone. She gives my brother and I a look of desperation. “You – help – please?”
My brother immediately disappears to the far side of the curtain. My husband had texted some mild concern over my being in such an infectious environment and my snarky response – It’s not like I’m going to be handling bodily fluids – is coming back to haunt me, as is my years’ of joking that I never had children because I couldn’t deal with vomit and pee. I wish I could join Chris out of sight and out of mind but instead repeat the mantra that the last four years of letting entropy have its way with my parents as gently as possible have taught me: It doesn’t matter if you think you can’t, you’ll do it because it needs to be done.
I don’t have some epiphany in the moment, it is as unpleasant and unsettling as I thought it would be. Modesty was paramount in my family and such elemental training isn’t easily unlearned, but Jessica thanks me repeatedly and assures me I’m being very helpful and manages as much of the process on her own as she can, and it is her need as much as my mother’s that carries me through.
As Jessica is bundling away the waste one of the infectious disease specialists strides into the room. She is tall and lean with short blond hair and a low-pitched voice, and for the entire week I am unable to convince my mother that she isn’t a man. She looks at Jessica curiously and at my brother and I in outright disbelief. “Who on earth told you that you had to wear those masks? She doesn’t have an airborne illness.” We look sheepish but peel them off gratefully, gulping in unrestricted air.
And then a curious dance begins between doctor and parent and children. “How are you feeling?” the doctor asks.
Mother stares at her until I repeat the question more slowly, more loudly. “Fine.”
“How is your appetite?”
“She didn’t eat lunch,” my brother puts in.
The specialist spares him an irritated glance and then returns her attention to my mother. “Have you had any diarrhea?”
I can speak to this in the most intimate way possible and nearly yelp my response. “Yes!”
She doesn’t even look at me. “Well, Mrs.,” she looks down at the clipboard in her hand, “Rapp, that’s good to hear. I’ll see you tomorrow.” And then she is gone.
My brother leaves soon after to dose his shih tzu with anti-nausea medication so that in a few hours he may eat with a prayer of keeping his food down. I can tell my mother is annoyed and I’m waiting for her to start winding up but then a meal tray arrives. Jessica has been nearly running back and forth along the hallway but she pokes her head in. “Dinner…you – help?”
I’m tired from the drive and entertaining visions of curling up on a hotel sofa with a dish of alfredo pasta and a glass of wine and an episode of Agent Carter or something equally undemanding. But Jessica looks tired too and after all isn’t that why I’ve come down – to help? I plaster a smile on my face and say, “Sure.”
Far from a hospital veteran, I fumble everything while my mother provides narration. “Are the bed controls broken or do you just not know how to use them? What’s wrong with the table? It was fine this morning. Stacey always knows where the towels are. The jello is too far away. I’m supposed to get two cranberry juice for dinner and they only brought one. Stacey says I need to stay hydrated.” Finally the bed is upright, the overbed table raised and extended, plates lined up in the proper order, food cut up into bite-sized portions, a second cranberry juice ordered and a straw inserted in the first. She looks at me expectantly. “The man fed me this morning.”
The mechanisms of helpfulness freeze inside of me. My mother always despised weak, needy, damaged things. Sick children were banished to their rooms without books or TV or music or light, to lie in bed until they got better, food delivered on a tray while healthy people ate and laughed in the dining room. Sick pets were euthanized even if a relatively simple cure lay to hand. But now…but now? A bitter laugh rises up but I push it down. There is no honor in revisiting the sins of the past on an old, frail woman nearing life’s end, and no virtue in scolding or punishing her for failing to see the gaping discrepancy between what she wanted from others when she was strong and they were weak and what she wants now that her position is reversed.
Still, I can’t make myself feed her. “You should be trying to stay as strong as you can,” I say. “See if you can manage it yourself.”
Her face wrinkles into an apple doll pout but she picks up her fork. Her single usable hand is shaky but she does indeed manage. The cup’s grip on level is far too tenuous however, so I hold it for her while she drinks through the straw. When she is finished I collapse the table, recline the bed, tell her I need to go. “Aren’t you going to wait for the second juice? I need help.”
I feel like a gargoyle as I say, “It’s getting dark and I’m tired and I need my own dinner. Besides, you said that the staff helped you this morning. I’m sure they will again.”
Her “Thank you for coming” has a mechanical stiffness to it. My brother always looks hurt when she adopts that tone, I think because he’s still looking for “Mom,” as he persists in calling her. But to me she’s been “Mother” since I was nine, the woman who brought me into the world, who sometimes says that she regrets it, for whom I have always tried to exercise the appropriate measure of filial duty. Of course the problem with duties assigned by a silent, intangible force is knowing when you’ve done enough.
* * *
Sunday morning I am up at six and at the hospital by 7:30, determined to catch Dr. M. on her rounds. I had spent the first hundred miles of the drive down fretting about my mother’s care options. We followed conventional routine after her first hospitalization, transferring her to a skilled nursing facility for intensive therapy. But when her stay there was twice punctuated by additional interludes at the hospital, the administrator from assisted living called. “I think we should bring her home.” After a pregnant pause she added, “And perhaps discuss hospice.”
Two days later her physician probed at the same subject. “We don’t seem to be getting the infections under control. If your mother returns to the hospital in less than a month, I think it would be appropriate,” she was silent so long I thought we’d been disconnected, “to consider hospice.”
We have been here before with my mother, after a hemorrhagic stroke nearly nine years ago left her unconscious and unlikely to survive. Hospice workers fluttered about her hospital room like kindly sparrows, adjusting pillows and morphine drips. But when against all expectation she returned to wakefulness they scattered and vanished as if life were a kestrel diving down for a kill. I don’t think my mother ever knew they were there.
But this would be different. She would be conscious. She would know that we had given up hope. My brother had suggested not telling her, to let her enjoy her last days, but something about that didn’t sit well with me. Yes, doctors had stripped her of capacity, and for nearly four years I’ve been responsible for her finances and her medical care. But I prefer to imagine myself, with regard to the latter in particular, as no more than a kind of surrogate for the executive function she is missing, smoothing over the impulsivity to which she is prone. Making the decision to end her life? That was far, far beyond my charter.
Still, this last hospitalization has indeed come less than a month than the last one, and I think Dr. M. and I should talk about that.
Dr. M., however, doesn’t. Like the infectious disease specialist before her she comes in and asks my mother a series of questions that my mother invariably answers wrong then looks annoyed with me when I interject the correct response. And when I ask to speak with her a moment she says, “No hallway conferences. Your mother specifically said she wanted to be present for all conversations.”
My mother stares at her, clearly confused. “I did?”
“Yes,” Dr. M. replies firmly, “you did.”
I am almost certain that this is a lie. Through all of their medical procedures and hospitalizations, from reconstructive surgery after cancer treatments to triple bypasses, my parents always had an almost childlike need not to know what was going on. They had no desire to understand the minutiae of their ailments and treatments, the risks and side effects and probable outcomes. And that frankly was one role I was comfortable with, researching and assessing the quality of the information uncovered and then being decisive about courses of action, managing expectations and curbing hysteria.
For over thirty years they have looked to me to help them navigate the maze of medical treatment. I find it hard to believe that has changed overnight, but I tighten my mouth to a thin line. “Never mind then.”
Dr. M.’s smile can only be described as self-satisfied. “Fine. I’ll see you tomorrow, Mrs. Rapp.”
I can’t help but feel like she’s punting, that she remembers what she said and doesn’t want to discuss it now that the moment of reckoning has come. But she’s left me in an awkward position. The administrator and head nurse from assisted living are planning to drop by to broach the subject of hospice – should I let them or not? It was an easier decision when there was unanimity. I fret over it for a few hours until my mother suddenly blurts out, “I think it’s a conspiracy.”
Confused, I reply, “What’s a conspiracy?”
“The hospital and where I live. They’re sending me back and forth all the time so they can make money off of it. People just want to make money off of me.”
I shake my head. “No, that’s not what’s happening.”
“You always defend other people and not me. I’m sure that’s what it is.”
My position begins to feel slightly less awkward. Because whether hospice is right for her now or not, I have no desire to let her tumble any further down this rabbit hole. “Look – if you get sick and assisted living doesn’t have what they need to make you better, they are going to send you to the hospital. And the hospital will make you better and then send you back. There’s no conspiracy here. This is what they do, for everyone. This is what they’re required to do. The only person who can stop the cycle,” I pause for a moment, “is you.”
She brightens up. “I can? Then I want it to stop. Definitely. What do I do?”
I sigh inwardly. Impulsivity. Impaired executive function. “You’d have to go on hospice.”
“Hospice? There are people at home on hospice.” I nod. “So I wouldn’t have to come back here?” I shake my head. “Then I want to do that.”
“You need to understand what that means.” I lean closer to her. “It means no physical therapy. No more medication except to be comfortable. You’re agreeing to get weaker.” The next words don’t really want to come out, but she needs to hear them. “And then to die.”
She furrows her brow. “Chung won’t come?” Chung is her physical therapist.
“No. New people, from hospice, would come, but they wouldn’t be there to make you stronger or healthier. That all stops. No more getting better.”
I see confusion bubble up from inside her, cross her face, then vanish. She smiles at me. “You decide.”
“Oh no.” I throw my hands in the air in front of me. “No, no, no, no, no.”
“But you’re good at decisions. You always know what to do. You always have.”
“No I don’t. And this decision?” I slouch back in my chair and it’s an effort not to push it halfway across the room. Or out into the hall. “I am absolutely not making this decision for someone else.”
The room falls quiet for a good long while, silent save for the rhythmic, mechanical pulsing of the lymphedema pump. Finally she says, “I know I’m a nuisance. Maybe it would be better.”
I edge my chair closer. “That’s not a reason. This is about how you feel about the quality of your life. You have to weigh the good moments – going out with Stacey, lunch with Audrey, doing word search puzzles, visiting with Bob and Betsy, listening to music – against being here.” I wave my hand around the hospital room. “Whether this is worth enduring for the rest.”
Before the stroke she studied Hebrew and Arabic. She knew a bushel full of Emily Dickinson’s poems by heart. She could stand mind to mind with my philosophy professors, who admired her wit and her curiosity. The stroke took much of that away, and senescence has taken more, but occasionally a dim flame of the woman she was licks out from the coals of her brain. I think I see one now, as she looks wistful and sad. “Stacey always makes me feel like there’s going to be a happy ending. But of course there isn’t.”
She studies my face, which I hope betrays nothing, though in fact there’s little enough to betray. She has spoken the truth, a truth I’ve sat in a room with as elderly dogs that vets assured me I could do nothing more for had poison course through their veins. A truth I’ve heard on the end of a phone line when the hospital called to say that my father had died, raging and incoherent and alone because no one had thought this small cold would be his end. If my brother were here he would talk of his God. But just as my parents taught us modesty they also taught us not to tell lies, and though I’ve no doubt it’s a truth for him, for myself…I don’t know. And the decision is too momentous, the moment too unreclaimable, for me to tell her that I believe in an Afterlife. Or even that I don’t.
The fingers of her unparalyzed right hand type out a nervous crescendo on the sheets. They are almost never still, except for when she sleeps. Finally she says quietly, “I don’t think I’m brave enough to do that.”
“This isn’t about bravery,” I say. “This is about whether any moments of life at all are still worth living. You’ve answered that question. No hospice.”
She spends the rest of the day worrying at her decision. Sometimes she tries to take it back. Once she says, “I’ll do what you want. You always know what’s best for me.” She smiles a gap-toothed smile. It was a long struggle to get her to go to a dentist, and when she finally did she complained bitterly about how long I’d made her wait, but then she refused to go back. I had more immediately life-threatening battles to fight at the time, like getting her to a urologist to deal with dangerously chronic urinary tract infections, so I let it drop. Now whenever she smiles it feels like an indictment. But where are the boundaries of autonomy and folly and tyranny? What used to be abstract philosophical exercises have taken on a terrible tangibility.
No I don’t, I think. And tomorrow you won’t even believe that.
* * *
By the next day even the thought of hospice has vanished into the deep, dark pool of my mother’s failing memory. I think on balance that’s a blessing but the thoughts that have replaced it – revolving around the news that Stacey is taking the day off to do laundry and take her father to the movies for his birthday – are more problematic to deal with. Gerald, the RN who dispenses her medications, rolls his computer into the room while I am wrestling with my mother’s disappointment. “Why doesn’t Stacey manage her time better? Why does she always have so much laundry?”
“Look, I gave her the day off, because I was going to be here anyway.” This is a lie, she had asked for the day, but I am hoping to deflect some of the negativity away from her.
I succeed. “What did you do that for?” Mother snaps. “You’re too good to her.”
Gerald’s mechanical sorting of pills stutters, but he looks away when I glance at him. “You’ve been in the hospital a lot, and Stacey has spent a lot of time with you, so she may very well have gotten behind.”
The corner of her mouth curves down. “You pay her for that.”
“That doesn’t mean she wasn’t here,” I sigh. “And anyway, just to be clear, I didn’t pay her for all of her hours. She gifted a number of them. She’s a kind person, and worries, and wanted to see you.”
“She says that you’re really good to her.”
“Good, not extravagant,” I reply in exasperation, and at that Gerald can’t hold back a soft laugh. I grin at him, grateful to share the absurdity of the moment with someone else.
* * *
And so the day goes. “I think it’s stupid that people,” meaning my brother, “prioritize a sick dog over a human.”
“Except Dewey doesn’t have anyone else to take care of him, and you have an entire building of people. And me.”
“It’s still stupid. You were like that with your dogs, too.”
* * *
When the bags of IV antibiotics are empty the console on the stand begins to beep, softly at first then louder. “I suppose you’re going to tell me that someone is coming.”
“They always do.”
“But the noise is terrible.”
“I know it’s annoying, but they need to be able to hear it. They’ll be here as soon as they can.”
“You always say that. You always take other people’s sides.”
* * *
“I hope Stacey didn’t order me a hamburger. I’m so sick of hamburgers.”
“Well, you wouldn’t exactly let her order you anything else for a while.”
“That’s not true. She just does what she wants.”
I know for a fact this is false, as Stacey had fretted to me about the nutritional quality of an endless diet of hamburgers. “Well, let’s just wait and see what it is, shall we? Anyway, Chris will bring us a good lunch.”
“If he shows up.”
“Of course he will. He said he was coming.”
“If he brings what you asked for.”
“Of course he will.”
“You always say that. But you know what I say, when people ask if I want lunch and he says he’s coming? I say that he’s supposed to be bringing it.” She gazes at me with a saccharine adoration that curdles my insides. “I never say that about you. You’re reliable. You always have been.”
I say nothing in reply. I know she will change her mind about that soon enough.
* * *
“Will you come every time I’m hospitalized now?”
“No, I can’t. It’s too far. My back can’t handle the drive too often and – ”
“And your husband and dog are more important,” she interrupts bitterly.
“They are important, yes.”
* * *
I remember my mother grabbing my shoulders when I was a child and saying, “Life is long, horribly long. Think twice about every decision you make, because it will haunt you forever.” When I was in my twenties, leaving college and getting ready to embark on my professional life I reminded her of that and she said, “Your life hasn’t seemed long at all.”
“No,” I said, “it hasn’t. Life seems terribly short to me.”
She shrugged. “I think some people are just born happier, and happiness compresses time. You were a happy baby, and a happy child, and now you’re a happy adult.”
“Not all the time,” I countered. “But I think happiness – or contentment at least – is to some extent a discipline. Just like controlling your temper or practicing the piano.”
“You always say that.”
I don’t write about my mother very much. Her relentlessness in raging against the things she clings to – her caregivers, her children, life itself – confounds me. Her moments of grace seem few – or perhaps I forget them too easily. In the face of her anxiety, her anger, her bitterness, empathy fails me. I don’t want to imagine myself into that existence. And yet I feel a tremendous sorrow for her, because I think that she is seldom happy now, and seldom was throughout her life, and that when her end of days comes – and sometimes it feels as if it must come soon – she’ll curse the coming darkness just as she cursed the light. And then she will be gone.