by Annette Nevins
“Let her go.”
The doctor’s words hang in the air amongst beeping alarms and purring machines. A bedside pump clicks, spurting chocolate-colored nutrients through a nasal tube snaking down my mother’s throat.
I reach for her hand, as I had so many times as a child. But our roles have switched. My mother, at 87, needs comfort I’m not sure how to give.
A stroke in the left ganglia portion of her brain has weakened her right side and diminished her speech to a whisper of jumbled words. The muscles in her throat are too weak to swallow solid food or water.
Over the last few years, I’ve watched the limitations of old age gnaw at my mother’s independence. The last place she wanted to be was in a bed depending on others for help. Now, as the pillar of my family lies in a tangle of sheets and tubes, I realize how much she continues to teach me. I know the days ahead won’t get easier, but I find myself clinging to the lessons they are bringing.
My mother’s blue eyes search mine for answers I don’t have.
“Everything will work out,” she used to tell me. Mom — her friends call her Anne — was usually right. Now I’m not so sure.
It’s almost midnight, but the rush of caregivers hasn’t slowed. A nurse straps a blood pressure cuff on Mom’s arm and an assistant rolls her over to change wet bed linens. Mom becomes agitated. Although she is too frail to stand or walk, she uses what little strength she has in her hands to pull out her IVs. My mother doesn’t like being tied down.
She’s not sure how she got here and she can’t understand why she can’t leave. A few days earlier she was singing at church, her walker parked as usual near the front pew. The next day she didn’t answer her phone, and my younger sister, Louise, became concerned. My older brother, Paul, rushed to her house and found her on her living room floor, unable to get up.
The doctor says she will likely have another stroke. Therapy to help her walk, talk more clearly and eat on her own will be slow and frustrating. Her fight against the infections that may settle in her airways will exhaust her. He warns that every step forward will feel like two steps back. He recommends hospice so her last days can be peaceful, not filled with drug interactions and invasive procedures, not spent in paralysis and pain. If we pull the feeding tube, he says, death will take her in a week.
“Let her go.”
The physician doesn’t waver in his prognosis.
“What would you want, Mom? Do you want to let go?” I want her to know there’s an alternative. “Do you want to keep trying?”
I’ve asked my mother these questions over and over in the hours I’ve spent at her bedside during the few months since her stroke in March.
Each time, she takes a deep breath and shrugs. It’s hard to tell whether she doesn’t know what she wants or she fears I won’t like her answer.
I’m pretty sure I know what she would say. It’s what she said when my father died of a heart attack next to her in bed on a Saturday morning 40 years ago: “At least he died in peace at home.” I remember her emphasizing “home.”
How could we take her home?
For my mother, home is the white house with green shutters surrounded by towering pecan trees where she has lived for 62 years south of downtown San Antonio. Her five children moved away long ago as houses aged and crime crept into the neighborhood. Even after scrubbing graffiti from her front porch, after finding her house ransacked after choir practice one night, my mother refused to leave the community she loves. She locked herself behind burglar bars and ignored our pleas to move.
She drove to Mass most mornings. Grocery shopping was a two-hour venture, leaning on the cart for support. She mowed her own grass until a few years ago, when osteoarthritis began to twist her spine and shrink her 5-foot-10-inch frame. Shuffling through pain, she relied on a cane, then a walker, falling more frequently.
Six months ago, we discovered her car’s side mirror wrapped in duct tape and dangling. We took away her keys, but that didn’t stop her from asking about her car. “We all have to die somehow,” she would say when we talked about the importance of eating right and staying safe. We never really explored what that “somehow” would look like. Now it’s staring us in the face as my sister, three brothers and I gather at the hospital.
Mom yanks the oxygen tube out of her nose and drops it on the bed. Is she saying she wants to give up or that she wants to go home? As Catholics who believe in the sacredness of life, we are having a difficult time accepting the doctor’s advice. Some effects of the stroke are irreversible, but we hope that with therapy her ability to talk and eat can improve.
Along the way, we are learning: DNR, living wills, palliative care. It’s a new language, forcing us to make choices. But it’s complicated. She is old and has lived a long life. We worry that she wants to keep fighting because she thinks that’s what we want, or need. Her voice is gravelly and weak. We fear she could be misunderstood.
Complicating it further are finances. Her house needs repairing and she has little savings. Home care in a poor neighborhood would cost considerably more than care at a nice facility close to her children. Unable to pay for either, we apply for Medicaid, still not in agreement with what we want for our mother.
One thing we do agree upon is our love for Mom. We want her to enjoy her last days, weeks, months or years. Even though she can’t talk clearly, her smile lights up whenever one of her children or 18 grandchildren walks into the room. We agree: No one has the right to take that away.
Nursing aides try to lift my mother into a wheelchair. When she waves them off, we are convinced. “She’s too strong and independent to give up,” my brother, Tom, tells the doctor. We begin to look for a nursing facility.
I page through photo albums hoping to elicit a memory or a smile.
“We love you, Mom.” My siblings take turns bending close and talking loudly in her ear. Her hearing aids broke a while ago and she could no longer afford to fix them.
My mother isn’t used to so much attention. She was always doing for others. As a young girl, she raised chickens and picked cotton and grapes. She quit school at 16 to keep up the family farm after her father died.
She motions for us to sit. Although she can no longer swallow food, she wants to make sure we have eaten. She always had a meal ready for us when we visited her at home.
We tell her she will be going to a nursing home.
Growing up, we were too busy to put much energy into hugging or voicing love for one another. We just knew how we felt. Now that Mom’s ability to talk has diminished, we are finding the power of touch more important than ever to communicate. We rub her forehead and caress her hands. “We love you, Mom.” We tell her again almost in apology for where we have to take her.
Her response comes slowly, one word at a time.
“I… love… you.” I reach out to hug her.
After a week in the hospital, visitors come less frequently and reality sets in for my mother. She weeps every day, often ripping out her IVs. After tugging the feeding tube out of her throat, she undergoes surgery to reinsert it.
Since her agitation is worse around sunset, doctors say she may have “sundowners,” a form of dementia that exhibits symptoms as evening arrives.
She hikes her legs over the edge of the bed as she tries to get up, setting off alarms. The doctor prescribes Haldol and Ativan to calm her down. But the sedating effects are interfering with the rehabilitation she needs to recover.
“Anne. Can you try to sit up for me today?” The physical therapist tries to work with her, but Mom can hardly hold her eyelids open. “Anne, can you wake up?”
Mom isn’t sleeping well. She’s been busy pulling tubes and removing clothing.
After consultation, doctors lower the medication dose, leaving it up to the vigilance of nurses and family, and big white boxing mittens, to prevent her from pulling tubes and disrobing. My siblings and I take turns spending nights in the hospital, sleeping in a chair next to her bed, holding her hands and stroking her hair like she once did when we were sick. When we can’t be there, we hire a sitter.
She sobs and pushes my hands away. We are concerned she’s getting worse. The nurses detect a slight fever and a catheter check shows she has a urinary tract infection, which may contribute to her agitation. After a regimen of antibiotics, she begins to respond. But the strain of all-nighters takes its toll. Tensions flare between siblings. In-laws feel slighted. It’s just past 9 at night. I feel the tension as Louise enters the room and I rush out to protect Mom from seeing us argue.
My phone pings as I head for an empty waiting room.
“You have been judging everything I do,” Louise’s text message reads. “You don’t trust the nurses and doctors. Just let them do their job.” Earlier that week, I criticized Louise for not getting Mom to the hospital sooner. Once she was admitted, I began Googling every diagnosis and questioning the side effects of every medication.
I thought I was being vigilant. Since I can’t control what’s happening to her, perhaps I am trying to take control of her care.
The argument spills into the waiting room.
“You have a guilt trip and you’re trying to make up for it,” my sister shouts.
Maybe I should have visited Mom more often, but my home is six hours away near Dallas. Louise has carried most of the weight during the last decade when our mother’s health began to decline, driving 45 minutes across town when she fell, taking off work for doctor appointments, making sure Mom had something to eat. We all have done our best to be with our mother, rearranging work schedules while caring for our own families. Tom has taken her into his home for weeks at a time. But my mother was always in a hurry to leave.
“This isn’t a contest to see who does the most for Mom,” I yell.
“I’m fed up,” Louise shouts. Her husband closes the door to the waiting room and tells us to get some rest. They drive home. I stay longer and tell Mom goodnight as a thunderstorm rolls in. Rain beats against the window and lightning flashes through the blinds. My brother Don, the youngest of my siblings, gives me a ride to his house. I splash water on my face to clear the urine smell clinging to my nostrils. I sleep in my clothes.
Over the next few days, Mom is more alert. A physical therapist gets her to sit up in bed. Mom’s legs shake as she reaches for a walking frame. She rocks her body back and forth until she swings into a standing position. The cheers of therapists and nurses can be heard down the hall.
Mom tries to say a few words.
“Go…home.” Her voice is raspy and hoarse, but the words are recognizable. “Go home,” she repeats.
Mother takes great solace in her faith. She opens her mouth in a wide smile as she recognizes the brown hooded robe and hanging beads of a Franciscan priest from her church.
“We are all praying for you and we miss you,” says Father Tony, the pastor at Mission San Jose, who comes to visit.
All five of us were baptized at the Old Spanish mission where our entire family once sang in the choir. Several of us were married there. On Sundays, my mother would sit in her car sometimes waiting an hour for Mass to begin. She didn’t want to be late.
Father Tony begins to pray: “Hail Mary, full of grace.” My mother moves her lips and follows each bead of a rosary with her bone-thin fingers.
“I’ll pray for you,” my mother often told us when we needed reassurance in life. Now that she needs our prayers, I ask myself if my faith is strong enough. Just before my mother’s stroke, my 23-year-old son was hospitalized for mental exhaustion as he tried to make it on his own while going to college. I couldn’t help but ask God what He was doing. As I swab my mother’s dry mouth, I reflect on what I have learned about letting go and trusting. I cherish these moments for bringing me closer to my God. “Thy will be done.” I’ve said it so many times I feel like I’m in the audience watching a drama unfold. I only wish I knew the outcome.
Mom’s recovery depends on her ability to talk more clearly and eat again. The therapists feed her a pureed sample to assess her ability to swallow. But she fails the test. Mom undergoes a procedure to transfer feedings from her nasal tube to a permanent incision in her stomach. After recovering from the surgery, she is released to a nursing home. An ambulance arrives, the technicians strap Mom into a rolling bed and transport her to her new home.
Photos of Dad and our family are there to greet her, but the surroundings are unfamiliar. She scans the parade of nurses, the sliding curtain, her roommate.
“The policeman tied me up in the ambulance,” Mom says.
She points to the flowers and cards on the side table.
“Take those down,” she says. “Hurry up. Let’s go.”
How do we tell her she probably will never go home again?
The porch light is still on at Mom’s house despite her usual vigilance about saving electricity. During summers, she would often turn off her window air conditioning units and sit under a ceiling fan.
Her bed is not made, unusual for the meticulous housekeeper my mom remained despite a stiff back. Old prom dresses she sewed for her daughters hang in the closet. Her sewing machine sits dusty in the corner, idle since arthritis began stealing nimbleness from her fingers. “Pain sucks the energy out of you,” she would say.
We caress a throw blanket, a pillow, anything that still holds a hint of her presence. The noon church bell tolls a few blocks away.
My mother has a few friends she met in the church Altar Society where she helped iron linens. But she doesn’t see them often. It’s too hard to get around. We encouraged her to go to the senior center for bingo or lunch, but she refused. “Too many old people,” she retorted.
A leaky faucet drips in a bowl left in the kitchen sink. My mother took great joy in preparing roasts and mashed potatoes, sharing and savoring Thanksgiving dinners, baking a cake in the shape of a giraffe or a bear for her children.
Now we try not to eat in front of her. She cries when she is rolled past the nursing home dining room. But she seems content when nurses come to provide her bolus feedings five times a day, filling a syringe with formula and draining it into her stomach. She knows she has to do this to keep living.
The horn of a distant train draws us to the chain-linked yard where we grew up. Baskets of flowers and ferns hang from a rusty swing set. An old tractor tire that was our sand box is filled with purple-heart plants my mother rooted from cuttings. Bluebonnets sprout from an old baby bathtub. My father’s workbench in the garage remains untouched. A vice still grips a piece of wood.
My mother is dedicated to the memory of her husband, who died four decades ago. She used to visit his gravesite weekly, then monthly. When she could no longer drive, she placed his name in the church weekly intentions.
My father died when I was 20. Afterward, my siblings and I helped my mother study to earn her GED. To pay bills, she went to work in a school cafeteria, then a department store dressing room and a lumberyard office.
Before we lock up her house we collect some important papers, a few photos and clothes, careful not to disrupt too much, in hopes — though distant — that someday she may return.
In her mumbled mix of words, Mom asks about her house every day.
“Don’t worry, Mom, we picked up your mail.” Louise talks loud so my mother can hear. “We watered your plants and Don is caring for Goldie” (the stray cat she began feeding).
A nurse’s aide lifts my mother out of bed and positions her in her wheelchair. Mom leans to the right and is propped up with a pillow. We bring her some clothes from home.
“Where are my black shoes?” she asks in a guttural voice. She is beginning to form more sentences. “Did you come to pick me up?”
Over the next two months, Mom moves to two different nursing homes. She is sent to the emergency room four times. We wonder whether the doctor was right, telling us to let go.
She’s having a rough day. A team works all morning to get her to move her legs. A therapist urges her to do more, but she begins to cry.
I push her around in her wheelchair to keep her occupied. Louise walks in and we show her pictures of her new great-grandson. We talk about our families and our work. But therapy has drained her. She begins to nod off.
Later in the afternoon, we return to her room where the night shift begins an hour-long bedtime ritual: diaper change, nightgown, an elastic binder around her stomach secured with Velcro to hold the new feeding tube in place. Padded cushions are strapped around her ankles to prevent pressure sores. An oxygen tube is placed in her nose and a nurse hangs a bag of fluid to drip into her feeding tube.
Louise and I join Mom for her favorite part of the day. My sister pulls up a chair next to my mother’s bed, holds her hand and turns on a rerun of The Lawrence Welk Show. We hum along to the big band sounds. My mother reaches for the necklace hanging from Louise’s neck. She touches my earlobes to examine my earrings. For once, the conversation is not about medications and clinical charts. Mother and daughters talk like they used to when Mom waited up after our Saturday night dates. Finally, she dozes off.
Later that week, Mom develops a gurgling cough from the phlegm she can’t clear from her throat. The doctor hasn’t seen her yet. It takes about an hour to find two overburdened caregivers to help move my mother from the wheelchair to bed. We have to remind the nurse to reconnect the feeding tube. Frustrated, we decide to look for another care center.
As we prepare to leave, my mother’s roommate, Mary, a 97-year-old hospice patient, presses the call button. It goes unanswered. “I need something, but I don’t know what it is,” she says in a sweet voice, reaching for me. “Can you tell me what it is I need?” I wish I could tell you, Mary. I wish I knew.
The room in my mother’s new nursing home is bright and overlooks a gazebo. Mom is showered. Caregivers clean her mouth.
But the new staff is not accustomed to my mother’s impatience. Soon after moving in, she pulls out her feeding tube. She is rushed to a nearby emergency room where her tube is reinserted.
The setback only makes her more determined to show she can do more for herself. She pushes her legs to scoot her wheelchair. Biting her lower lip, she digs in her heels to pull herself along the hall rails and inch toward her room.
“Ándale!” a patient shouts in Spanish to coax her down the hall.
Another patient approves.
My mother seems proud of herself for moving down the hall without our help. As I leave, she lifts two fingers to her lips and blows me a kiss.
I get a phone call that same week. A nurse notices my mother’s cold hands and rushes her to the hospital with low oxygen levels. A CT scan identifies a blood clot in her leg. A daily shot of blood thinner is prescribed.
Over the next few days, Mom forms more words and is given trials of applesauce.
“Flashlight. Cloth. Spoon.” She identifies each flashcard correctly. She misses the year of her birth, but she gets the date right. Most importantly, she passes a swallow test.
She is fed small portions of mashed potatoes but turns down the broccoli. She can’t drink thin liquids, so they thicken her coffee with honey nectar.
She stands for 10 minutes with a backboard, looking good as she mugs for a camera phone in her lavender polyester pants and blouse printed with glittery birds. Louise has ordered a jumpsuit with snaps in the crotch to prevent her from pulling her tube. A wisp of Mom’s white-permed hair falls against her silken skin, making her blue eyes brighter than usual.
But as the doctor predicted, for every step forward she takes two back. She pulls out her feeding tube again. Is this her way of saying she’s had enough?
Louise is frustrated. “I hope we are doing the right thing for Mom.”
It’s back to the emergency room where the wait lasts more than an hour. The hole in her stomach closes up before the doctors could reinsert the tube. So another incision has to be made. Blood levels are below average. A CT scan shows bleeding in the back muscle. The blood thinner shots are stopped.
Her arms are placed in cuffs tied to hospital bed rails, limiting movement to an 8-inch range to prevent her from pulling her tube. She undergoes surgery to insert a tiny wire basket below her heart to strain large clots. It’s Mom’s birthday. She turns 88, pulling through with light sedation.
Back at the nursing home, she enters a depressed slump. The doctor orders antidepressants. Fearful that overly aggressive efforts to save my mother may harm her, he recommends we consider a “Do Not Resuscitate” order in the event her heart stops. Unable to agree, we put off the decision.
Reflecting on my mother’s struggles, I think about how each of us ages differently. I recall a woman I had written about — Lona Lewis, who at 104, with the aid of a walker, still goes to lunch every day at the community center in Archer City, Texas. I wish my mother could be that strong. “The hard part about getting old is seeing other people die,” Lona told me. “God is keeping me here for a reason. I just don’t know what it is.”
Perhaps it’s to teach us about slowing down and living.
Before my mother got sick, I used to talk on the phone with her almost daily. Now I am writing her heartfelt letters. They’ve become my prayers for her.
In physical therapy, Mom no longer reaches for balloons tossed her way. Her lack of progress is forcing therapists to scale back their treatment. I take her to activities, but we leave when she won’t stop crying.
A psychologist tells us Mom needs more touch and expressions of love. “She has gone through a lot of changes, and she needs to be reassured that everything is going to be OK.”
My brother, Don, says he is trying. “One thing I struggle with is that even though I hug and kiss her, maybe even because I do, it seems it makes her even more sad,” he writes in a group text. “She wants so much to go with me when I leave. It seems it might almost be better if I didn’t even come. But I know in the end it’s certainly better to be there. It’s just hard.”
I comb my mother’s hair, sitting next to her wheelchair. I turn to wrap my arm across her body and our cheeks touch. She pulls her arm across my back and rests it in a loose embrace. Tears trace my face and Mom lets out a relaxing sigh. These have been some of the most difficult days with her, and some of the most meaningful.
The physician explores whether Mom is suffering from Pseudobulbar Affect, fits of involuntary weeping caused by the stroke. She starts another medication, which works to relieve her crying.
She seems more content. She begins taking an interest again in reading the newspaper comics. She likes looking at tomato plants in the center’s garden. Perhaps Mom thinks that one day she will plant some in her own garden. It’s a dream neither of us are prepared to give up.
As I wheel her back to her room, Mom places her hand on the door jam.
“Turn around,” she says.
She points to the outside.
“Take me to see my house.”