Anne L. Rooney
Oak Park, Illinois, USA

 

Hospice hands

The emaciated woman lay scrunched in a fetal position with her back to me. I stood in the doorway to her cramped bedroom.

“Hello, Loretta. Can I come in?”

Loretta rolled over, squinting with suspicion. “You a nurse?”

I nodded. “I’m a nurse who visits people who are really sick. The doctor over at the hospital asked me to stop by and see if I could help you out. ”

“What’s it gonna cost me?

“Don’t worry about the money. There’s no charge. ”

“Those bastards down at the plant cut off my insurance.”

“Okay,” Loretta continued. “I guess I could use a little help. But just until I get my strength back.”

Our covenant began.

I slipped on my exam gloves and surveyed Loretta with my hands and my stethoscope, just as I had for hundreds of cancer patients before her. From her ashen look, I guessed her blood count to be well below normal levels. An upper front tooth was missing, its twin stained with nicotine. Bony arms clutched the pink chenille bedspread.

Finally it was time to inspect what Loretta called her sore. “Just can’t get it to clear up. Maybe you can make it better.”

I lifted her hospital gown and removed the large bandage that covered the entire left side of her chest. Only a bumpy green crater remained where her breast had been.

I gulped air through my mouth to keep the putrid smell from reaching my nostrils. A fly buzzed around my head. For a moment, I was not sure that I could keep from gagging. Loretta stared at the ceiling.

Gingerly, I replaced her bandage with a clean one and asked about her pain. “Rotten! Maybe you have some rat poison in that bag of yours.” She nodded in the direction of my bag.

“What you’re taking isn’t strong enough. I’ll call your doctor and ask him to order morphine for you. That’ll take care of the pain and help you sleep at night.”

“Morphine?! NO way!”

“I’ve used morphine many times with other patients who are in pain. We’ll start with a small dose that will relieve the pain, but won’t make you groggy.”

“I ain’t gonna get hooked on no dope!” Loretta growled.

“I promise that you won’t be hooked,” I said calmly.

Loretta finally relented and took the medicine, although she always called it her blue syrup.

This was the first of my daily visits to Loretta in the mobile home she shared with her partner, Mae. She had been referred to our new home hospice program by a cancer specialist at the local teaching hospital, where Loretta had been taken by ambulance after she fainted at the factory. That is when her end-stage breast cancer was diagnosed. As the director of the home hospice, I assigned myself as Loretta’s primary nurse. I wanted to evaluate how our new program could best meet the needs and challenges of an actual patient and family.

My first examination tired Loretta, so I encouraged her to rest, and then slipped away to the kitchen to continue talking with Mae.

Mae sipped the Coors in front of her. “I never knew. She always hid it from me. I’ll take care of her, but I can’t handle her sore. Anything but that.”

We agreed that I or another nurse would visit daily to bathe Loretta, change her dressing, and monitor her pain, appetite, and medications.

Mae had taken an indefinite leave from her factory job. “How long do you think it’s gonna be?”

“No one can say for sure, but my guess is that Loretta might live only another month or so,” I replied.

Mae told me that they had met bowling thirteen years earlier and had lived together in this mobile home for the past ten. Loretta had a brother and a mother in the area from whom she had been estranged for many years.

“They want nothing to do with her,” said Mae. “Loretta’s a cranky old cuss. She’ll never call them. Even now. Especially now.”

“I don’t know how I’ll handle it when she gets worse,” Mae continued in a worried voice. I reassured her that the hospice program would help her to keep Loretta comfortably at home as long as possible, hopefully until the end. Mae relaxed a bit.

Their remaining support seemed to be the bowling team. No one from the factory where Loretta had worked for seven years had called to ask about her condition. “Can’t handle it, I guess. Who can figure?” Mae shrugged.

While Mae brewed me a cup of  tea, I glanced around the living room. An old photograph of an adolescent Loretta peered at me from atop the television. A bookcase held some faded encyclopedias and a photo of a grinning Loretta and Mae, holding a bowling trophy triumphantly above their heads. Plastic daisies sprouted from the milk glass vase on the coffee table. Their plump caramel-colored cat slept in an overstuffed rocker.

“What would you think of getting a hospital bed for the living room? The hospice will pay for it,” I suggested. “That way Loretta could be out where the action is, and it might be easier for you.” Mae agreed.

At home that evening, my thoughts were filled with Loretta and Mae. I tried to eat some tuna salad for dinner, but I could taste and smell Loretta’s lesion. Brushing my teeth did not help. What was it that allowed Loretta to keep this desperate secret for two years or more? How could she have gone to work every day, in pain and so debilitated? I imagined her at the plant, punching the time clock, sneaking a cigarette break, exuding an aura that dared anyone to puncture her veil of isolation. Until she fainted and an ambulance was summoned, she was the sole guardian of this incredible knowledge.

She must have known that she was dying. I wondered how Loretta felt about her rotted breast. Was she in denial, or perhaps paralyzed by a fear of cancer? Did she somehow think that she deserved this? How did Loretta see herself as a woman in a culture that idolizes physical perfection?

Missing tooth. Missing breast.

Working with Loretta would be both a challenge and a privilege. I knew that I was piercing a shield of fierce privacy. In order for Loretta to trust me, I must accept her on her own terms. She would call the shots. I felt protective toward her. I had been around enough university hospitals to guess how she might have been treated at one. Undoubtedly she would have been presented at weekly Tumor Rounds, where the most exotic cancer cases are debated. Loretta would have made great gossip in the nurses’ lounge. It was because of people like Loretta – the most vulnerable ones − that I had chosen hospice work.

In the days that followed, Loretta, Mae, and I settled into a rhythmic intimacy. I would arrive mid-morning, before Loretta settled in to watch Search for Tomorrow, and assist with her bed, bath, and dressing change. I went about my business matter-of-factly while Mae read the Sun-Times at the kitchen table. Loretta’s chest lesion resisted all my attempts to neutralize its foul smell or minimize its purulent drainage. She averted her eyes when it was time to remove the bandage, and never asked if her sore was healing. The morphine controlled Loretta’s pain reasonably well. Her appetite improved a bit with vanilla milkshakes and Portillo’s hot dogs.

Occasionally she reminisced about growing up on Taylor Street, the old Italian section of Chicago. My familiarity with the neighborhood from my graduate student days afforded me a grudging credibility. We argued over our mutual affection for Mama Tish’s Italian ice. Loretta thought watermelon the better flavor, while I held out for raspberry. She deftly changed the subject anytime her family was mentioned. Mae was her family now.

The only other visitor I ever saw was Judy, a bowling buddy. On an early evening visit, I met the tough and stocky woman in a man’s plaid shirt with Camels in the breast pocket. Initially I was put off by her smoker’s cough and coarse language. Later I learned that Judy had given Mae money for Loretta’s morphine and a subscription to cable television.

Loretta and I never shared musings about the meaning of life or death, or the struggles that we all encounter in our families. My one oblique reference to the possibility of contacting her mother wilted with Loretta’s bark: “Uh-uh! Never!”

I reflected silently and often about my own family and the depth of my connection to them. Sometimes I imagined an emotional reconciliation between Loretta and her kin, not unlike the ones on the soap operas she loved. Although some part of me would have loved to facilitate a Norman Rockwell-style deathbed scene, my job as her nurse was to respect Loretta’s choices. This was her life. Her death. Not mine.

One morning about a month into our shared journey, I received a frantic phone call from Mae. “She’s much worse. Can’t swallow anything. She’s breathing weird and moaning. I think she’s in pain.”

Ten minutes later, Mae greeted me at their door, puffing one of her ubiquitous cigarettes. Loretta’s pained whimper floated to the doorway from the living room, where she lay curled in the hospital bed. She gulped the minute droppersful of liquid morphine I squirted on her tongue, her face contorted in suffering. Her breaths came in short gasps, like a fish trapped and dying on a sandbar.

“I’ve been up all night with her. I’m losin’ it. I think she should go to the hospital.”

I could see the pleading in Mae’s eyes. Even Loretta agreed. “Maybe they can give me something to make me a little stronger.”

Although one of my goals was to help Loretta die peacefully at home, I could see that was not going to happen. Mae had reached her limit. I called her doctor and an ambulance.

While Mae packed a bag for the hospital, I pulled the rocker close to Loretta’s bedside and took her bird hand into mine.

“Am I dying, Anne?”

I gently squeezed her hand and nodded. “Yes.”

“Soon?”

“I think it will be pretty soon. Mae and I will make sure that you are not alone or in any pain.”

Loretta closed her eyes. “Okay. I thought so.”

I met the ambulance at the local hospital and helped arrange her admission to the nursing unit that would care for our hospice patients. Loretta slipped into a coma and died a few hours later.

Her closed casket wake drew few mourners: a few old Taylor Street acquaintances, some fellow bowlers, Judy, Mae, and me. The brief service was as spare and unsentimental as it seemed her life had been. Mae and I talked a few more times in the weeks that followed, until she moved from the mobile home park and left no forwarding address.

I smile when I remember Loretta and the orneriness she flaunted as a badge of honor and hugged as a lifejacket. I learned to meet her on her terms. Dying is not an orderly process that wraps up all the loose ends of life. People die the way they have lived. Loretta was angry, defiant, and estranged from her family until her last breath.

“Just until I get my strength back,” was her eternal anthem. Did she ever realize that it had never left her?

 

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ANNE L. ROONEY  RN, MS, MPH is a nurse and an international health consultant whose work focuses primarily on health system strengthening and quality improvement in developing countries. She worked as a consultant, surveyor, and executive for The Joint Commission and Joint Commission International for more than twenty five years. Her international work includes consulting and educational engagements in Europe, Africa, the Middle East, and Asia. She has published in health care quality journals and most recently in Globalization and Health. She lives in Oak Park, Illinois.

 

Fall 2018  |  Sections  |  End of Life