back to Issue 16
by Alisanne Meyers
Drop I
Hospice Nurse Hana dangles the syringe from white acrylic nails. “Hon, if you don’t want fentanyl patch you drip morphine under tongue.”
“Fentanyl is out of the question. And isn’t morphine for when someone’s dying dying?” I ask.
“Yes, Hon. The morphine. It’s end of life, as needed.”
Hospice Nurse Hana, who always announces herself as “Hospice Nurse Hana,” jumbles words when she’s rushing. Even as I grimace at her yanking my mom’s rail-thin arm to get a pulse read, I have to admit she’s a vision for home health care. Her charcoal-lined eyes intermittently lock with mine above the white mask and scrubs. She’s like a hot angel whom none of the women in the room trust. Only my Dad has been respectfully nodding along. I can’t quite stomach the end of life, as needed, and wonder if the process is as simple as asking the waiter to stop with the pepper grinding.
“Morphine and fentanyl would ruin the lining of the organs and cause her to die faster,” says one of my mother’s live-in caregivers. “We’re not giving it to her.”
“Listen, Hon.” Hospice Nurse Hana is fond of sweetening her mortality proclamations. “Hospice care is for comfort, when patient has only six months to live, so Mary here can relax. Hon, you have only give four teeny drops whenever pain—”
“She’s miserable,” our second live-in caregiver interjects. “No fentanyl yet but we should give her the morphine.” She glares at the first caregiver.
I turn to my dad. “We’re not giving her morphine, and we’re certainly not giving her fentanyl.” To Hospice Nurse Hana, I say, “We won’t be administering any of this to my mom until she’s on her last breath.”
When Hospice Nurse Hana leaves we wonder at the beautiful white Mercedes SUV that landed in our driveway, as if she really did fall from heaven.
*
But it was my mother who fell. She smiled at an aide as she collapsed on the bathroom tile, probably after a sudden drop in blood pressure. She couldn’t accept the news that she would never walk again because she has Alzheimer’s and is incapable of acceptance. Now our interactions are little physical routines that reinforce a deep affection, what I imagine having a pet is like. My mother doesn’t know me as her daughter, but she kisses my face when I put it to her lips.
At this point in time, the members of her care team are me, my dad, a caregiver who has lived with us for five years, a caregiver who has lived with us for two, a shower aide who comes to our house twice a week, and the hospice company that visits on weekdays for prescriptions, evaluations, and catheter maintenance. We’ve kept my mom home for the eight years since her diagnosis, so now our house is a clinic, complete with an oxygen tank, three cabinets of medical supplies, and a cluttered table of toiletries. Our family has become a Mary Industrial Complex. Squabbles between the two live-in caregivers, who I will hereon refer to by the pseudonymous Ariel and Caliban, are more constant than the omnipresent whir of my mom’s self-inflating mattress, which helps prevent bed wounds.
As they had time and again over the preceding years, the mechanics of care changed. My dad and I followed a 7-minute Youtube video to guide us through every diaper swap in those early days of bed confinement, though for us it typically took over an hour. Inevitably we’d mess up the hospice bed turn, where you pull on the under sheet to flip the patient to the opposite side. “Oh God,” my mom would mutter as we lifted her from under the knees to replace ripped diapers with backups, and then she’d shriek when we pried her legs open. There’s nothing quite like wiping the shit out of your mother’s clitoris and having your dad tell you to “make sure to get under the fold.”
My mother’s body is difficult to behold. Bent into a fetal position with legs that can no longer straighten, she’s morphed into a gnarled hook. The broken left hip swells uncomfortably in proportion to contracted stick legs, now slimmer than their fastening knee and ankle joints. When her gown is stripped, former double-D breasts deflate on sharp ribs and a gap looms between the diaper and her 90 pound corpus. How I imagine Christ might have looked if dismounted from the cross and framed on a twin mattress.
I curl up beside my mom in the new at-home hospital bed and read aloud from Carl Jung’s Aion. Growing up my mom and I had “reading dates” until my dad came home from work. In the early days of her disease, we modified our routine to alternate reading aloud from the same book for mental stimulation, even though she couldn’t follow a plot. Finally, it became just me reading to her.
Halfway through the chapter “Christ, A Symbol of Self,” her translucent hand reaches out to hold the other side of the page, like we’re once again reading together. I keep going as if nothing has happened, afraid to dispel the illusion of togetherness, onto a passage about the Christian doctrine of privatio boni. God is good and evil is strictly the absence of God. Jung’s rebuttal: “Unconsciousness makes no difference between good and evil.” The hand drops when my mother falls asleep.
Drop II
When someone close to you has lost their memory, you face the gaps in your own. I never took a mental snapshot of my healthy mother because I didn’t realize she was vanishing. The signs first presented as a mood disorder when she was 59, and were undetectable as precursors to Alzheimer’s. As a teenager I thought my mother had become cruel, and I largely avoided her during her last functioning years. At some point I came home from college and noticed her eyes were vacant. We lay on her bed and she said, “I used to be a normal person, you know.” I held her hand and promised that everything would be all right.
Now my mother holds an apple, small and red with proportionally tiny bite marks. Apples are the only food she can still recognize and eat on her own. Anything else needs to be spoon fed by me, my dad, or a caregiver. We supervise so she doesn’t choke, except this time my dad took a phone call and absentmindedly left her unattended. I walk in on her alone with her apple. “Nah uh uh,” I say, wrestling the apple out from her grip. She looks to me angrily. ”Well my friend was, yeah or, she’ll tell him.”
My mom forgot who I was about a year before the fall. In the months leading up to that she repeated to me daily, “Remember, I’m your mother.” Now she responds only to her own name. When I say, “Mary,” she says, “What.” I tell her I love her and she struggles with a response, sometimes saying “Thank you,” “Ok,” or, on one special instance, “You’re the best one I want.” This time, when I tell her how beautiful she is to make up for the stolen apple, she says, “Good,” then rolls her eyes and looks away.
Hospice Nurse Hana visits for a sponge bath and wound care. She reminds me to turn my mother every two hours before pressuring me again to administer the fentanyl. As I explain that I don’t want to give her anything that will induce nausea, I’m suddenly overtaken by my mom’s muscle tissue glistening through the open sore on her lower tailbone. I pretend to follow the steps in the wound dressing routine while riding out my own nausea wave.
I should be over the sickness, or at least better adjusted to drifting at sea. Prospero and Miranda had an island to call home in The Tempest, but my father and I have no such rock, only Ariel and Caliban. We’ve hatched far more outlandish schemes than Prospero’s—coordinating schedules to the minute and hiring a rotation of strangers from disparate walks of life whom we provide with free board to suppress the cost of care—but they never end with a magical resolution.
When my dad returns I yell at him for leaving my mom unattended with her apple. “I was on a call with a client,” he snaps. My dad still works at 77 so my mother receives health care benefits. Then, more gently, he adds, “I’ll try and do better next time.” He walks Hospice Nurse Hana out.
Ariel and Caliban enter. Ariel starts playing with the remote attached to the hospice bed, to prepare for turning my mom to the other side. “It looks like the remote has buttons for the head, the feet, and to bring the whole bed up and down.” A robotic humming accompanies my mother’s shapeshifting from an upright V to a faint horizontal line.
“Get her feet down,” says Caliban to Ariel. “You’re pushing the buttons wrong. It looks like they’re up and the hospice people told us to have the head and feet down as flat as possible.”
“They’re as far flat as they can go.”
“You’re being stupid. Pay attention and see if you can get them flat.”
Ariel tosses the remote to Caliban, who’s embarrassed when she presses the same button and the feet refuse to lower.
“The bed keeps them elevated for circulation. I think even at their most down they’re a little up,” I say, to cut the tension.
Falling will long outlast my mother’s ability to eat the apples, and after every fall, the rest of us enter a brave new world.
Drop III
As I morphed into a caregiver I became more self-centered and ashamed. The more time I spent caring for my mom diminished the bandwidth I had for my own life. I was behind in my career and trapped in a perpetual adolescence, externally helping my family but internally panicking more over lost life milestones than the existential threat facing my mother. After the fall I started driving to my parents’ house several times a week, first to help with turning when Ariel and Caliban had the day off and then to watch movies with my dad so he didn’t feel lonely. There’s nothing a woman in her reproductive years wants to be told less than “You’re such a good daughter.” It’s all I ever heard.
I arrive at my parents’ home and follow the reek of urine to a Gehry-esque symphonic explosion of paper pads shrouding my mom. I rush to place the triangular cushion support under her splayed legs when my dad says, “Don’t touch that. The fentanyl is transmittable by touch.” He points to a patch taped on her backside.
I stare at him. We had agreed not to administer the fentanyl.
“I am in charge here, and I do not want her to suffer.” He enunciates each word like he’s negotiating a contract, not speaking to his daughter. I’ve read that one-third of Alzheimer’s caregivers are daughters. I wonder what portion feel so powerless.
“Those drugs will make her more sick. The hospice is prescribing them because they don’t want to deal with her.” I’m wedging a small pillow underneath the broken hip when I see where the catheter has spilled, dripping from the railing to the floor.
“I don’t want her in pain at all, and careful, you’re—”
“The one thing we have going for us is that she forgets the pain.” My mom is clutching her broken hip. I take that hand into my own.
“What time are you?” she asks.
I attack my dad. “You want her to die. And you’ve gone behind my back to kill her just like you went behind my back to do a diaper change alone. If you can’t handle this you should both go to a home.” I stoop to the accusation because I’m desperate to save him from life-ruining regret.
“Alisanne.” He readjusts the triangle wedge I used to tilt my mother away from the wreckage. “You’re standing in the piss and spreading it around.”
*
Before the fentanyl my mom was partially verbal, but a week goes by and she’s incessantly writhing, eyes rolling in the back of her head and barely letting out a word—never even an “I love you.” I tell my dad to look at the evidence and see that the fentanyl is making her worse.
“It’s that the pain is getting worse,” my father says. “We’ll just have to give her more morphine, that’s how this works.”
After another week I start my own self-help work. I’m prompted to list out the worst-case scenario of whatever I feel anxious about.
Mom on fentanyl and dying, I write in my journal.
What action could you take to face this fear? goes the next prompt.
The action I could take would be to Google the side effects. I scan several websites and call my dad.
“She’s overdosing. No patient should go on fentanyl without prior exposure to heavy opiates like oxycodone, and mom’s on Zoloft, which when combined with opiates induces Serotonin Syndrome and causes rigidity, twitching, small pupils…”
“Show me a link. I promise to look at it,” he says.
I go back to bed, praying he really will.
*
“She’s already much better,” he texts me the next morning. “Thank you for saving your mom.” My father called the hospice and an on-call worker removed the fentanyl patch at midnight. At first we weren’t sure he had done it in time. My mom began passing black liquid stools that the nurses called a sign of “the transition.” She stabilized as the stools solidified. I apologized for saying he wanted her to die.
I had doubted myself and not taken the right action initially because I felt too much shame, a lack of confidence from not having hit the right benchmarks in life, to trust myself. As we later learned, the doctor who had prescribed my mom fentanyl had twice had his medical license revoked for drunk driving, yet I was suffering from imposter syndrome.
One night after the contraindicated overdose, I dream that my mother is sprawled on unfamiliar dark ground, disfigured as she’s been since the fall. I speak to her like I always do, like I would to a dog. Instead of looking up adoringly or spitting up some word salad, she barks, “You get to tell everyone how you take care of me. I’m never set up right in bed, my body aches all over, my skin is dry, I’m lying in shit.” In fury, she begins to cry. “My hip is broken.” She rests her head on her knees. “My hip is broken and no one cares.” I begin sobbing with her. “I know, Mama, I’m so sorry. I know, Mama, I’m so sorry.”
When I awaken my first thought is that somewhere in the non-material realm my non-Alzheimer’s mom is infuriated with me. For not being sad enough, for co-opting my grief as an excuse or a means of self-inquiry, for not acknowledging her suffering body and masking all our interactions in cuteness instead of grieving with her. In real life, though, it’s unfair for me to act sad around my mother, who picks up on emotion but cannot process it. Both analysand and amateur psychoanalyst at this point, I discern that it’s not her who doesn’t think I’m sad enough, but me. The mother Mary of my dream was the part of myself begging me to stop deriving worth from my own or someone else’s suffering.
Drop IV
We got my mom a new hospice company.
It’s not perfect but they’re not trying to kill her. We don’t administer fentanyl, and we give her only a tiny dose of morphine if an apple or bed adjustment doesn’t keep her from grinding her teeth. I moved back in with my parents, replacing the two caregivers who burned out (Ariel needed her freedom, and Caliban’s storminess spun out once Ariel ceased being her rod).
My dad calls spending time with my mom “communing” one evening when he has the hospice bed pulled up to the foot of his own and is lying horizontally so she can wrap her arms around his. I agree that it’s a kind of otherworldly communing, but we still mourn the lives we’ve lost in this one. I just turned thirty and my dad hasn’t been free for a moment of his retirement. Sometimes I blame my father for not protecting me from what’s come to be a situation threatening my own life. Other times the pendulum swings manically the other way. At the end of an impassioned monologue where I detail to my dad how caregiving has transformed every part of me and I can’t imagine who I’d be without it, he nonchalantly replies, “I don’t know if we’re better or worse people for it, and I don’t know if we were right not to let her die.”
My mom has adjusted to, if not accepted, her new reality. She sighs happily between meals, naps, and kisses, and still eats an apple a day. Her word salads sound more like chopped vegetables lately: “I love love love you too too too too too.” If you stretch out a limb she’ll wrap her fingers around it, like a sea urchin. We give her stuffed animals that are mistaken for food and lose ears or tiny tails. I myself confuse things around my mother, such as feeling comforted by her petting my hand, which is really just a neurological tremor. When she brings my hand to her mouth I say, “Wait! You only have one daughter. You might not want to eat her.”
*
It’s a year after my mother was given six months to live. We’ve advanced past the video for bathroom changes. I pull the bottom quilt overhand to roll my mom like a taco to the left. Then wrap the latex gloves over my hands, place wet wipes and spray on the corner of the bed, and bring the trash can right up to the side of the railing. I unfasten the top velcro tags of the diaper and scoop the poop into the trash. I dress any wounds, cover the pubic area with mystery ointment, bunch the soiled diaper away, slide the new diaper in, fasten it while she’s on her back and then flip her to the other side while we roll the clean mat out from where we jammed it under the old one. Place pillows under head, legs, beneath the arm she’s lying on, and between her legs. Switch the catheter to the other side of the bed rail and empty it into the basin, flush urine down the toilet and then rinse the basin in the tub. Write down the nature of the bowel movement and amount of urine in milliliters on the legal tablet set out for the day. Take out the trash. Throw out my gloves and wash my hands for twenty seconds. Yell at my dad to do the same. Some days it goes so efficiently I’m psychotic enough to wonder if in the end I kept my word when I told my mom everything would be all right.
The Last Teeny Drop
When I feel the pain of having lost my real mother, or the guilt of having saved this one, I go back to a childhood memory of us in a hotel pool. My hands were wrapped around her wet neck when she whispered in my ear that she would teach me to float. She dipped my head back several times, and with a gentle baptist’s hand, released me to the surface.
I muse whether my floating state is a depression response, as in more like apathy than unhappiness, and conclude that depression is actually more of a struggle not to drown. I couldn’t feel my true unhappiness until lying back, surrendering to the next unceasing routine. I’ve been floating a long time now, wondering when I’ll hit the shore mentioned eight years ago at the diagnosis—when we were given a horizon of three to five years—but the gentle lapping waves kindly sting my eyes and ears and, in their salty way, remind me, “The end of life doesn’t come as needed, it comes as death.”
Alisanne Meyers lives in Los Angeles. Her essay “SoFi Stadium, Not so Super” was published by Knock LA. She posts 59-second music videos to @59erbaby on Instagram.