Everybody’s already made up their mind

Illustration by Jeff Crosby for Salon.com

Illustration by Jeff Crosby for Salon.com

The sound of vomiting awakened me. The smell of it assured no return to sleep.

My roommate was coming out of his coma.

“That’s OK, that’s OK,” a woman told the gently groaning man who had just emptied his stomach and, I noticed a moment later, his bowels. “We’ll take care of that. You don’t worry.”

I heard but did not see any of this. A gauzy, cornflower blue curtain on a metal rod trembled from the activity behind it. Between gulps, the man apologized, his words wavering in the air.

“No problem, no problem at all,” said another woman. The pair sounded much younger than the man they were addressing. “Here, just roll over a little this way so we can get – there, that’s it.”

The whisper of changing bedsheets filled the room. The thud of something wet and heavy landed in a plastic bucket, followed by another thud.

My attention span rippled like water in a breeze. The drugs administered to arouse me from surgery were prying me out of a deathly slumber, but a mild grip continued. The analog wall clock said 3 a.m.

As I noticed this, the women emerged from behind the curtain wearing purple smocks, latex gloves, and their frosted hair bound up in small buns. Each clutched a bulging plastic trash bag and a facial expression wrought from a hard night. The air improved when they left.

My roommate coughed and cleared his throat a few minutes, then was silent. When next I heard him, the hands on the wall clock had spun around three times and sunlight dribbled through the window blinds.

I needed to pee – I could not remember the last time that happened – and so began focusing on how to do it. I had come out of surgery without a catheter and without the use of my shoulders. Long, raw, S-shaped scars curved beneath my arms. A tube jutted from the bottom of each scar. Beneath each tube, a plastic bulb collected orange fluid. Concentrating on how to squirm out of bed unaided softened the edge on my urge.

But in fumbling to stand, I brushed the room dividing curtain, causing one side to slide back on the rod. And that is when I met Clarence from Anna, Illinois. His drooping, swollen eyes stared at a muted TV on his side of the room. He had long white and red tubes running the length of his black arms.

“Hey, hi. Sorry about that,” I said as I grabbed at my loose gown with one hand and my rolling intravenous fluid pump with the other. Pain coursed from my shoulders to my ribs. The half-filled bulbs pulled on my scars.

“No, that’s fine,” he replied and waved to me with thick fingers. “Hope I’m not disturbing you. I guess I got a little noisy last night.”

“Nah. I wasn’t really asleep anyway. They kept waking me every hour to ask a question or poke me with something. How are you doing?”

“Better, I think. They tell me I was out awhile, so I’m not sure,” he said, groggily.

“You mind if I asked what happened?”

“Car crash. I was making a delivery and a woman plowed into my side at a stoplight.”

“You remember that?”

“I remember that much, then I woke up here.”

“So, you feeling better?”

“Yeah. I think one of these tubes is morphine.”

As the last syllable dribbled from his mouth, two other women slid past me, nodded acknowledgment, then positioned themselves on either side of Clarence’s bed. He greeted one as Mom.

“Ohh, baby, how’re you feeling?” She knitted the words together in a long, soft musical note.

“Mmm. ‘K,” he mumbled.

At that, I regathered my gown and rolling IV stand to address the business that forced me upright. When I finished and returned to bed in a way as innovative and as painful as I had left it, the conversation behind the re-extended curtain had changed from a lovely tune to legal matters.

“Police say she’s already got a lawyer …” the woman called Mom said.

“… and he’s already talked to them,” the other woman added. Clarence called her a word like “Sulee.”

“She was the one who didn’t stop,” he told her. “I was stopped and moved out a little to see past the car and then she was slamming into the side of me.”

“I know, honey,” Mom said. “And they know it. But she’s got this lawyer now.”

Piece by piece, the puzzle came together before me. Clarence was working his second job, floral delivery, and had pulled up to a flashing stoplight two blocks from his destination. Cars parked close to the intersection interfered with his view, so he stopped then inched and stopped then inched forward to see better.

He remembered flashing lights, a siren, and someone shouting questions at him. That was four days ago.

“Mmm, yes,” Mom hummed.

“But now you gotta get a lawyer, too,” Sulee said. “You gotta talk to somebody at the college. Got a lot of friends there, right? You’ve worked there a long time. Somebody there knows someone who can help, right?”

“Dunno,” Clarence said. “Maybe.”

“Oh, we gotta try,” Sulee said.

“Dunno,” Clarence repeated. “I mean, look at me, look at that town. Everybody’s already made up their mind.”

The best birthday gift for my mother

Hospice careMy mother just had her 78th birthday. She doesn’t know it though.

If I or anyone told her, she still wouldn’t know it. She’s past the point of understanding or caring.

Earlier this year, Sandra Kay Sheets, ravaged by an untold number of strokes, entered hospice. Now, three nice nurses monitor her all day. They bathe her, change her bedding, administer pain medication and feed her three squares daily. Or try to; Mom loses interest in food after one spoonful.

In the evenings, she picks gingerly at the edges of her bed sheet and mumbles about distant memories, though from what I can interpret, those memories involve times when she was young and vibrant and happy.

She is among the estimated 1.7 million people nationwide who receive hospice care, according to the National Hospice and Palliative Care Organization. However large that number sounds, it’s double from a decade ago as palliative care expanded beyond its original intent of serving terminal cancer sufferers to include patients diminished by other diseases.

My mother entered those statistics because she was in and out of hospitals and rehabilitation centers after her initial attacks, with varying success. Her health trended up and down, but never improved enough for her to regain a clear perception of the world around her. My uncle and I, who share legal responsibility for her care, began measuring her status by the number of moments we thought she knew who we were.

That number is down to the low single digits.

“Hospice care is designed to address the needs of the entire family,” writes Sheryl M. Ness, a nurse educator specializing in end-of-life care, in a blog for the Mayo Clinic in Rochester, Minn. “The focus of hospice care isn’t to treat or cure the underlying disease, but to provide the highest quality of life for whatever time remains.”

Because of that, more dementia sufferers continue entering hospice. By 2011, cancer diagnoses constituted just 33.7 percent of all hospice admissions, with dementia topping the list of non-cancer diagnoses at almost 13 percent of the whole, according to NHPCO findings.

“As the average life span in the United States has increased, so has the number of individuals who die of chronic progressive diseases that require longer and more sustained care,” the NHPCO says in its 2012 analysis of hospice care nationwide.

At first, I resisted putting my mother in hospice, her health decline notwithstanding. For one thing, “hospice” is synonymous with “terminal” in our culture, and I wasn’t ready to ascribe that term to her condition.

For another, I, like most everyone, was inculcated to believe that “cure” and “care” were synonymous, too, and that both extended across the breadth and depth of modern medicine.

But then I witnessed the exhaustion among overworked doctors and nurses at hospitals and the relentless workload at understaffed rehabilitation facilities along each step of my mother’s treatment. I realized then that “cure” and “care” can be exclusive of one another where cost, time and patience force a choice.

So, my mother reposes in a place devoted to her needs, such as they are. She can’t move, so the nurses move her to prevent bedsores. The nurses change the TV channels for her, brush her hair, talk to her, tuck in the stuffed gray kitten I bought because it resembled her own cat.

Her express respite care instructions, dictated by her when she was clear-minded and accepting of the likely course her condition would take, discourage much else.

When I visited her last, my mother looked through me to the reality she selected. At various times, I was her son, her brother, her uncle. One afternoon, she worried about the state of her wedding dress. Another afternoon, she worried about the cleanliness of an outfit I was supposed to wear in a parade.

It took me awhile to realize she was talking about a parade I was in at age 5.

I indulged her and said not to worry; the outfit was clean and ready. She said “OK,” then settled into sleep.

For this birthday, peace of mind was the best gift I could give.

__________

Update: Sandra Kay Sheets died Aug. 20 of complications from a series of strokes.