March 4, 2006
The phone rang at our Texas home on Saturday afternoon. It was the nursing home Dad had lived in for the past few months. He had been taken to the hospital in an ambulance.
I had received calls like this several times in the past two years, for both Mom and Dad. They weren’t commonplace, but also not cause for panic. Was I concerned? Of course, and I quickly gathered my things to go to the hospital. Was I also a bit resentful? Probably. It had been a crazy week at work. A weekend for errands and time with my husband and daughter would have been nice.
I drove across town to the hospital and found a legal parking space near the emergency room. The pneumatic doors slid open to linoleum floors, putty-colored chairs, and televisions bolted to ceiling corners. I approached the main desk—I knew the drill.
“Hi, I’m Kathy Miller. My father, Joe Miller, was just brought here by ambulance from the nursing home. Could I go back to see him?”
The medical receptionist poked at some keys on the monitor and looked at the screen. “It doesn’t look like he’s in the system yet. Have a seat and we’ll call for you in a few minutes.”
I found an open molded chair to sit in and waited, looking around at the assembled ailing hoping for care. Children were antsy, parents frustrated, most people resigned to their afternoon of low-level misery. After fifteen minutes, I again approached the desk.
“Excuse me, I’m just waiting to go back to see my Dad. Joe Miller? Is he in the system now? I’d really like to get back to be with him and talk to the doctors.”
More pecks on the keyboard. “Yes, it looks like he’s in the system. If you could just have a seat for a few more minutes we’ll call you so you can go back and see him.”
I sat back down. Chided myself for not putting a book in my bag. A few minutes later, a different woman in scrubs approached me.
“Are you Joe Miller’s daughter? “ I nodded. “Could you follow me?”
I stood, but she turned not in the direction of the doors behind the intake desk, but into a wide hallway on the other side of the ER. We walked on industrial carpet and turned right into a room furnished with a small table and faux leather chairs that exceeded typical hospital comfort level. As I passed through the doorway I looked at the plate affixed below the room number: Family Waiting Room. The scrubs-clad woman asked me to have a seat and smiled gently. “The doctor will be back to talk with you in a few minutes.”
I had spent a good portion of my career researching and writing about communication in health care organizations. But it didn’t take a PhD to understand why I was sitting alone in that quiet space, waiting for a doctor to come talk to me. My father had died.
The door to the hallway was ajar, and I watched as both hospital personnel and visitors walked by, most with great purpose, some at a more leisurely pace. I felt a strange anticipatory numbness about the news I was about to receive, and my academic mind turned in strange ways. Would I someday write a piece with the title, “The Family Waiting Room: On Receiving Bad News in Hospital Settings”?
After twenty minutes, a young south Asian man in rumpled scrubs entered the room. He looked haggard as he offered his hand and introduced himself as the resident on call that day in the emergency department. We both sat and he quickly got to the point.
“I’m afraid your father has had a massive heart attack,” he said.
I braced myself for the news of Dad’s death, but the doctor instead launched into a discussion of bypass options, angioplasty, cardiomyoplasty, the risk of surgery, and attendant danger posed to various organ systems.
“All of this is pretty risky,” he summarized, “even for a healthy individual. For a man of your dad’s age and deteriorated health, I would guess the chance of surviving the surgery as less than fifty percent, and the recovery would be extremely difficult.”
He looked directly at me. “Or, we could just provide comfort care, if that’s what you and your family want.”
Mom was just a mile or so away in her independent living apartment, but I was both legally and emotionally equipped to make this decision alone. Dad had been miserable for months as he bounced between institutional settings and home care. Mom knew of his longing to be free of pain and dependency on others. Indeed, during one of his hospital stays she had somewhat embarrassed me by constantly reminding each of his caregivers: “He’s DNR, you know.” So it was an easy choice.
“We won’t do the surgery,” I told the tired resident, and we left the Family Waiting Room together.
There was a taut urgency to the next few hours. A mile away, Mom waited for me, purse already nestled in her lap. She wrestled her wraparound sunglasses onto her face, checked for her keys, and we rushed back to the hospital. When we arrived at Dad’s treatment room, he was pale and still, his shallow breath interspersed with the beeping monitors. We were soon joined by the doctor who updated us on Dad’s condition. I don’t remember the details of his words, but the message I received was that death was imminent.
“Is there time for me to go home to bring my daughter back here?” I asked. “I’d like her to have a chance to say goodbye to her Grandpa.”
“Yes,” he said. “But hurry.”
A speeding dash across town, then we were back in the curtained alcove. Mom was standing by the bedside and nurses came in and out. Kalena looked tentatively at her grandfather.
“Would you like to hold his hand?” one of the nurses asked her.
Kalena looked at me with a small bit of distress. “No, that’s okay. I’d rather just be here.”
A few minutes later, another nurse came to report that they wanted to move Dad to a standard room. ER space was precious.
“There’s a room available up on the third floor,” she said. “I don’t think he’ll need to be in it long, but some more privacy might be good.”
We agreed, and I thought we would meet him upstairs after the orderlies had settled him into his new bed.
“Actually,” said the nurse, “I think you should all come with us as we take him up. You just never know what will happen.”
Indeed. So we all crowded around the gurney in a large elevator as we ascended to his final bed on the third floor. And because you never know what will happen, I sang to him a refrain that resonated from his college years through my growing up and into his old age.
We’re loyal to you, Illinois
We’re orange and blue, Illinois
We’ll back you to stand ‘gainst the best in the land
Cause we know you have sand, Illinois!
“Sand?” I had asked him as a child. “What in the world does having sand mean?”
“It means that people who go to Illinois are gritty,” he said. “We know how to get through anything.”
September 6 – 7, 2012
The phone rang at our Maine vacation home on Thursday evening. It was my sister Ann, calling from Seattle. Mom had been on hospice care for several months, but not because death was imminent. We wanted her to be as comfortable as possible and receive the ongoing care hospice can provide. Luckily, the officials in charge were able to work in the gray areas of diagnostic rules to provide the appropriate designation. But now it appeared that death was indeed near. She had largely stopped eating and was communicating with her caregivers – and with Ann – very little. My older sisters Mary and Barb had just started their school years as elementary teachers and had both recently visited Mom in Seattle. They had said the goodbyes that needed to be said. But I didn’t have family or work obligations, so I fired up Expedia. There was a flight out of Bangor first thing in the morning that would get me to Seattle by early evening. I booked it.
The next day, during my Philly layover, an email arrived from Mary, addressed to all three of her sisters. She felt heavy and sad about not being able to go to Seattle. And then, “It occurred to me driving to school that I might send you some of the hymns I know Mom loves and knows.” I scanned the list: My Faith Looks Up to Thee, O Jesus I Have Promised, Great is Thy Faithfulness, Abide with Me. My eyes welled when I read that the third verse of O Love that Wilt Not Let Me Go helped Mom get through her own mother’s death:
I trace the rainbow thru the rain,
and feel the promise is not vain,
that morn shall tearless be.
My tears overflowed when I saw For All the Saints, my favorite hymn, on the list. I’ve loved it for the fervent rhythm and soaring harmonies, but as I waited to board the cross-country flight toward my mother’s final bedside, the words of the final verse mattered most.
The golden evening brightens in the west,
Soon, soon, to faithful warriors cometh rest.
Sweet is the calm of Paradise the Blest.
March 4, 2006
It was deep night on the third floor of the hospital. In the afternoon, the gurney had arrived at its destination with Dad still alive, and the urgency of his situation dissipated. He would die soon. But not as soon as we all thought when we had crowded into the elevator.
Mom was back at her apartment. Kalena was home with her dad. Sisters were called with news of the heart attack. “Should I come?” each asked. He probably won’t be alive when you arrive, I said. He won’t regain consciousness, I said. Mom will need you later, I said.
I was alone in that room – quieter than any hospital room I’ve experienced. He was not attached to monitors. The “npo” notification on the door—medical speak for nothing by mouth—curtailed interruptions by staff. We were at the dead end of the hallway (Dad loved puns – he would, perhaps, have appreciated that detail). There were occasional footsteps, quiet murmurings from the distant nursing station, but mostly silence.
I sat by the bedside in one of those chairs that hospitals tell you can comfortably convert to a small bed. There was no conversion and no comfort, only restless shifting as the minutes passed. I didn’t try to read in the dim light, nor did I sleep or even doze. I thought I should perhaps talk to Dad—could he hear me? But I didn’t know what to say. Again, I sang. Not Illini Loyalty from his college past, but the songs I had sung to Kalena eleven years before when I rocked her to sleep as a baby. Folk songs I had learned as a child and ditties from summer camp. Today. Puff the Magic Dragon. Linger. All Through the Night. It was dangerous to dwell too much in the lyrics – a million tomorrows will all pass away … a dragon lives forever, but not so little boys … linger a little longer here with you … I, my loved ones’ watch are keeping, all through the night. The lyrics stung. So I just kept singing.
September 8 – 10, 2012
There was limited seating in Mom’s room in the Seattle assisted living facility. Her bed was centered on the tiled floor, her blue velour recliner graced the spot by the window. On the Saturday morning when I arrived after my late-night flight, Ann and I established our spots. Mom lay still on the bed, eyes mostly closed, her breath quiet and regular. One sister sat on the side of the bed, stroking a papery arm, gently massaging a blanketed leg, and offering sips of water when eyes fluttered open. The other sister enjoyed the comfort of the recliner. We’d switch at regular intervals. As the morning progressed we pulled out the folding chairs stashed under the hospital bed for Ann’s husband and daughters. Our conversation circled around the silent woman in the bed. What did the hospice nurse say? Was she in pain? Look, she’s wearing the bracelet Monika brought her from Kenya. Do you think she’d like to hear Mozart or Beethoven next?
Mom was resting comfortably, so we decided that we could leave for a lunch together. At Applebee’s, we were shown to our table for six and the conversation continued. It felt like one of the many times I would visit from across the country and we would catch up on news of our lives. It felt normal. And then, suddenly, Ann excused herself and went outside. Her husband followed, then returned. She didn’t want to stay, he reported. Then no one wanted to stay, and the others gathered their things and filed out. I flagged down the waitress, told her to cancel our orders with the kitchen, and left our sweating iced tea glasses and crumpled straw papers on the deserted table.
Sunday was a diminished Saturday. Fewer people in the room, quieter conversation, less and less of Mom as the hours crawled by. Ann would occasionally call our distant sisters from the connected room, where that resident’s porcelain doll collection regarded her with empty eyes. Aides came in and out, assessing Mom’s need for morphine and encouraging us to offer ice chips. When a hospice nurse visited, she saw me in the hallway and pulled me aside.
“You know,” she said, “sometimes people at the end of life just need to have the peace of knowing that it’s okay to go. It’s just the family members who are holding them back. Have you thought about telling her that it’s okay for her to let go?”
I’m sure she wasn’t really a condescending bitch. Hospice nurses aren’t like that. So I bit back the sarcastic, “Gosh no, I never would have thought of that,” that came to mind and returned to the room.
And, as it turned out, Mom wasn’t really ready to go. On Monday, she was more alert and a bit talkative, though not in the present except for urgent and consistent requests for water. Instead, there were fragments of the past. She mumbled about her parents, about her brothers, about people unfamiliar to me. Then, a clear thought.
“Joe was a writer,” she said.
“Yes, he was,” I said. “And you, too, Mom. You were a wonderful writer.”
She lapsed into silence, her eyes losing their focus. Then she looked back at me with concern. “And Beth died.”
Beth? Who’s Beth? Weren’t we talking about Dad? She continued to look mournfully at me, and it came to me that she was back in childhood, dwelling in her favorite book, Little Women. Jo was a writer. Beth died. When I had read the book as a girl, I had felt a melodramatic twinge when Beth—third daughter in a set of four, just like me—was the tragic figure in the family.
I sat on the edge of the bed and held Mom’s hand. “You’re right, Mom. Jo was a writer and Beth died. But I’m right here.”
March 5, 2006
There was again filtered fluorescent light from the hallway outside the dead end hospital room, muffled voices from the nurses’ station, occasional passing footsteps from crepe-soled shoes and Crocs. Mom had sat by Dad’s bedside during the daytime, but she was now at home sleeping and I was back in the sticky recliner, contorting to find a tolerable position.
I looked at the npo notice affixed to the door. Dad had been in the bed for more than 24 hours. No food. No water. He was still. His breathing was shallow and steady. We had wanted no surgery, no extraordinary measures. When I taught courses in health communication, I talked about this stage, when curative efforts were abandoned. I’d define a new word for students—palliative, when attention shifted from making someone better to abating pain and providing comfort.
Was Dad comfortable? Was he in pain? Was he thirsty? Was he too warm or too cold? Did he hear when a nurse walked by or when I shifted in my seat? I couldn’t know.
What I knew was that for months he had suffered from both physical agony and the existential indignity that accompanies the loss of most bodily functions and of almost everything that had ever given him pleasure. He told me that my only failure as a daughter was that I wouldn’t kill him. That I “sold him down the river” with each new rehab bed, home health aide, and nursing home placement.
He may have been thirsty. He may have been warm or cold. His placid face may have masked the experience of lingering pain. But there was comfort—for me, anyways—in the fact that he would soon have release from a life he had wanted to exit for a long time.
September 11, 2012
By late afternoon, it was just Ann and me in Mom’s room. Her alertness from the day before had dissipated, there were no more scattered memories shared. She was restless in her bed, her hands twitching and a leg occasionally rising suddenly to tent the light blanket that covered her. We would gently move the leg back down, murmuring reassurances that she probably didn’t hear.
On past nights, we hadn’t kept a vigil. But this night felt different and we didn’t want to leave her alone. I took the first shift, settling down in the worn recliner through the early evening and surveying her small room as the Seattle sky darkened.
In the closet were hangers with skirts—some store-bought and a few home-sewn—but all with pockets to hold the Rolaids, handkerchief, and small tub of mentholatum she never went without. There were cotton-polyester blend shirts, many with stains the institutional laundry just couldn’t remove. Years before, I had bought jumbo Ziploc bags and labeled seven with the days of the week. Those same bags remained in the closet, each with a matched skirt and blouse so the assisted living caregiver could be assured of clothing Mom in an outfit she would approve of. Garanimals for the older set, if you will.
On the table next to me was the Talking Books machine that over the years had been upgraded from tapes to CDs to audio files stored on a jump drive. Next to it, the portable CD player and the stacks of classical music discs that were her mainstay. I ordered dozens of them through Amazon, completing her sets of Beethoven symphonies, Mozart concertos, Chopin etudes, and all the specific recordings of Brahms, Mendelsohn, Schubert, Handel, and Haydn that she knew from years of listening. I dug through the pile and soon was soothed by the quiet urgency of the Moonlight Sonata.
I hoisted myself up from the depths of the chair and wandered to the walls. Photos in cheap frames clustered in purposeful groupings. Four formal portraits of daughters—our high school yearbook photos. Four wedding pictures. Five shots of the grandchildren. Their smiling adolescent faces gazed with casual openness, poked around trees, beamed from seashore rocks. It occurred to me that several decades had produced much cleverer poses for the ubiquitous senior pictures. And then the wall with the elderlies—Mom’s childhood commemorated in sepia and black and white. I peered at each stiff arrangement of Hyde and Miller relatives. Everyone in those images, save Mom, was dead.
It was a stark contrast to Dad’s final night more than six years earlier. No npo on the door. Surrounded by the familiar and cherished rather than stark hospital walls. She was not desperate to die, but was ready to let go. When Ann arrived late in the evening, we sat together for a while, quietly chatting. Then I left my sister to her own thoughts and gratefully returned to her home’s guest room for a few hours of sleep.
March 6, 2006 / September 12, 2012
The call comes to my campus office in the early afternoon as I prepare for a meeting with a graduate student. I should return to the hospital.
* * *
The call comes as I walk through Ann’s hilly neighborhood, listening on earbuds to news from a distant place called Benghazi. We should return to the nursing home.
* * *
In the third floor, dead end hospital room, Mom sits quietly on the edge of a chair by the bedside.
* * *
In the nursing home room with the blue velour recliner, Mom lies quietly in the bed.
* * *
I pull up a second chair and sit with Mom. Dad is reposed on the bed, his face already drained of the small bit of life it had the night before. Mom breathes quietly. I hold her hand.
* * *
I sit on the bed, Ann sits on the recliner. We watch Mom breathe. Uneven. Ragged. But steady. We sit for many minutes. We switch positions. The breathing slows, quiets, catches. We look at each other. Is this it? No. The breathing resumes. Slower, coarser, then pauses again. Is this it? No. Still no. And then yes. Mom breathes no more. Ann and I hold her hands.
* * *
Outside the dead end hospital room, the chaplain—a nun—notices the npo sign on the door and comes in, planning to chat with a patient before he is sent to surgery. Why else could there be an npo sign on the door? I tell her. No, there is no surgery that will be happening. There is death that has just happened. She is taken aback, but quickly recovers and offers to pray with us. I bristle, as this is the last thing my atheist father would want. I am about to tell her that when Mom responds. Yes, she says, she would like to pray. Mom stands, and joins hands with the nun. I am pulled into their circle and we bow our heads as the nun speaks of God and eternal life. Prayers are not for the dead, I remember, they are for the living. Mom’s eyes are closed and she sways a bit, finding peace as she listens to familiar cadences of comfort.
* * *
Outside the nursing home room with the blue velour recliner, Ann and I sit on uncomfortable couches. Two aides emerge from the room and invite us back in. She’s ready, they say. We enter, but do not perch on the bed or sit on the blue velour recliner. Mom lies in the bed as she has for five days. The sheets are smoothed, her hands are neatly folded across her heart, her hair carefully combed. There is no nun offering words of prayer, but I again see a bit of peace in Mom’s gently closed eyes.