Burnout
By Ute Carson:
Preface
The night sky was moonless. We jumped into our 1998 Lexus and drove to our after-hours neighborhood clinic. There was no traffic on the road, and the parking lot of the clinic was illuminated only by a dim, flickering light. Semi-darkness persisted in the small, cozy clinic, staffed by one doctor, a nurse, and a technician. In the evening hours, my husband had complained about abdominal pains increasing in severity. After checking in, vital signs were recorded, blood was drawn, and x-rays were taken. It was hours before the blood sample results returned from Austin’s central lab: only a small bowel obstruction showed up on the illuminated screen. We passed the time talking to the elderly physician, who seemed glad to complain to sympathetic ears about the American health-care system. As the first sunrays peeked through the night’s darkness, we drove home happily for a sumptuous breakfast.
Consent, Negotiations, Surgery
“Medicine at its most barbarous."
Our euphoria evaporated as swiftly as the morning mist. A cold sweat covered my husband's body. His undershirt was wringing wet, and he started to vomit. Consulting with our primary physician on the phone, we drove to a nearby hospital. And so began the Helter Skelter. As a nasogastric tube was inserted, a shout erupted from my husband’s normally calm demeanor, and his usually steady feet bounced off the examining table. He later recalled the forceful insertion as “medicine at its most barbarous.” At this point, the tube was a necessary measurement to show how much nourishment was able to pass along the intestines. By evening, the x-rays showed no movement, and the nausea increased. We gave consent for exploratory abdominal surgery the next day. Forcefully, my husband pulled out the tube. We negotiated that the tube would be reinserted only after my husband was anesthetized.
Would a surprise celebration before a frightening event increase or decrease the anxieties, I wondered. It was his 86th birthday. Two of our grandsons, K and L, joined me at the bedside with colorful posters, sunflowers, and a tiny candle we secretly lit. L whispered, “Pappy blew out the candle,” and K remarked, “He also smiled.” Our girls arrived soon after we informed them of the emergency.
Pacing in the waiting room of a loved one scheduled for surgery is akin to watching the wall clock’s dial move at snail’s pace. We counted steps back-and-forth the length of the room and compulsively checked our phones. When the surgeon, still in scrubs, pushed through the swinging door and announced that all had gone well with little time to spare, we all hugged him with relief.
The Team
“A physician should know a disease by the whiff of urine.”
Three surgeons were responsible for my husband's care. The head of the team, Dr. H., was brusque at first. He immediately told us of his suspicion, which later proved correct: we were dealing with a strangulated hernia. His initial demeanor soon contrasted with his feeling hands that palpitated my husband's swollen belly with gentleness and skill. His intuitive diagnosis reminded me of an Abraham Verghese lecture, where he recalls a saying of his old teacher that "a physician should know a disease by the whiff of urine." Dr. H., too, seemed to possess a sixth sense.
The senior resident, Dr. B., charmed us with her engaging smile and her directness. I immediately felt a kinship and then discovered that we shared a belief that scientific facts and emotions are joined in synergy. She assured us that she would personally be inserting the intestinal tube once my husband was anesthetized.
Dr. P, whose mention of caring for her aging parents who disliked hospital stays as much as us, provided a reassuring connection to elderly parents as patients.
Care Under Strain
“Are you in the medical profession?”
It’s on the hospital floor where care collides with reality. Hospital floors are nurses’ territory, and their jobs aren’t easy. Not only was there a staff shortage, but the cleaning crew seemed to restrict its work to swinging a dripping mop around. I dreaded stepping onto the floor barefoot and avoided the bathroom.
The shortage showed in hurried care—delays in changing a soiled bedsheet or long waits for a much-needed pain pill. I also experienced both ageism and a prejudice against privilege. Not primarily wealth but education and familiarity with medical information. When I was able to recall my husband’s medications from memory or when I inquired about a proposed procedure, I was met with, “Are you in the medical profession?”
When I stepped into the hallway with a bottle of Perrier that I could not open, I stopped a nurse. He unscrewed the top and handed the bottle back to me, quipping, “That’s what happens when you drink this expensive stuff. We folks here drink plain water.”
Being old, I always had to prove that I was not demented or hard of hearing. During a conversation at my husband’s bedside, the talk inevitably turned to my children, and my comments were ignored or cut short.
There is a fierce competition between hospitals and their doctors who have privileges in one facility but not the other. During the hospital stay, doctors who had never met my husband tried to change his course of treatment or his medications. A senior cardiologist wanted to perform a cardioversion when my husband experienced an episode of atrial fibrillation. I insisted on contacting our long-term cardiologist, who immediately advised against it. She wanted to see my husband after his release. When I mentioned this to the senior physician, he retorted, “If the lady wants to visit, she is welcome. But she has no privileges here. I make the decisions at this hospital."
Vigilant Sentinels
“If he doesn’t comply, we’ll have to use restraints.”
Our girls, our son-in-law, and I took turns spending the night on a cot next to my husband’s bed, not only as a comfort to him but also as ever-vigilant sentinels. We wanted the best care for him but also questioned protocol when it didn’t make sense. Does a patient who’s been awake for 36 hours need to be woken every 4 hours throughout the night by switching on fluorescent lights just for vital signs to be taken? We objected vehemently to restraints when my husband tried again to pull out his nasogastric tube. A conscientious nurse later brought a pair of mittens, placing them quietly on the bedside table. If not watchful, the overworked nurses would tell my husband to pee into a urinal when he insisted on being taken to the bathroom.
I also took issue with familiarity when young doctors or staffers called an old professor like my husband by his first name. But it brought moments of humor when a technician, intending to place a PICC line, catapulted into the room calling out, “Hey, man.” When I had presumed the PICC line was made from pigskin and therefore kept pronouncing it a “pig line,” everyone had a much-needed laugh.
Chaos
“Mom, I think we’re going into the wrong neighborhood."
After a week in the hospital and an incision that left a scar the length of his lower belly, my husband was released—just as the thunder started to rumble outside. He was weak, painfully thin, and burdened by what he called a “mind fog.” A physician we had seldom seen signed the release forms; he knew nothing about my husband’s chart. In the ambulance home, the driver was given the wrong area code. One of our daughters, following behind in her car, texted me, “Mom, I think we are going into the wrong neighborhood."
She was right. Later, we called the hospital to get in contact with Dr. H. but were denied any information. The admissions nurse on the floor where my husband had stayed hung up on me after I requested Dr. H.’s contact information. I ended up spending hours calling every surgeon’s office in Austin with Dr. H.’s last name, and I finally found a helpful assistant who provided what I needed.
Rehab or Home Care?
“At home, I could comfort him in ways no facility could.”
We were assigned to Home Health Care, a governmental agency free for two months that provides scheduled visits by nurses and physical therapists modeled on the now-defunct housecalls, where the doctor knew his or her patients not only as individuals but as members of a family and a living environment. During the two months we shared with the Home Health Care workers, we heard many moving personal stories. The caretakers also became a part of our illness story.
Soon, however, I realized that we were being punished for our decision to take my husband home, thus avoiding the recommended two weeks in rehab. Following our request to have the staples at the incision site removed by a qualified nurse, a delay or long wait was predictable: “You had the choice of a rehab where everything is provided for.”
Why did I decline the rehab offer—a marvelous choice for patients living alone or those who would choose such a facility so as not to burden their families? In a rehab, no relative can spend the night. Although this might not be a big deal for many, it was for us. Who would be at my husband’s side when he had nightmares, was frightened, or called out? How often did my husband reach for me, “Are you there?” At home, I could roll onto him, spreading warmth and reassurance. I could whisper a few loving words and even hum a favorite song. For us, touch has healing qualities. I believe in the power of physical contact. For the same reason, I did not hire a night nurse. She could not provide what was most beneficial to my husband. Asked how I would manage sleep disruptions, I retorted with what I call “my baby reflexes.” Even as a new mother, I would sleep deeply, but a single cry would wake me, only to fall soundly back asleep after the required task had been done.
Burn Out
“The interruptions exhausted me more than my husband’s needs.”
I was repeatedly warned about burn out, and here it gets complicated. Each person has a different threshold of tolerance. I never felt it was a burden to take care of my husband. I recalled physician-writer Richard Selzer mentioning in one of his books about a woman who was asked how she would manage her incontinent husband. Her reply was, “How much of a mess can one man make?” I felt the same way!
I know how to handle my stress levels, but the constant delays of a nurse having car trouble, the changing of appointments, different nurses and physical therapists appearing at a home visit, or strangers crowding my house or personal space stressed me more than my husband's demands. I have always been independent and listened to my limits. On my "free” days, my husband and I established a comfortable routine, but the countless intrusions proved a nightmare.
It would be arrogant to claim that I could do the caretaking all by myself, but what helped were daily acts of kindness: staying with my husband while I took a nap, bringing prepared dishes, running errands, taking me to my own doctors’ appointments, and maybe asking instead of presuming what I needed.
At the beginning of this process, my husband was either in surgery or in pain. All his effort went into recovery. He absorbed very little of the turmoil that surrounded him. Later, he made his wishes known.
Helpers
“I needed a health-care worker, not a friend.”
If the hospital staff was burned out, the agencies are barely able to keep glimmering coals warm.
It’s an adjustment to have a stranger at your side for 7 hours a day. It’s especially taxing if you also have to train them. It’s quite different from hiring household help, where you feel comfortable leaving for work in the morning to return to a clean house in the evening. When you have done your household chores by yourself all your life, an extra person can become an unwanted burden. A helper knows nothing about your household, your schedule, or your preferences. Our helpers included what could be found in the tumult of the job market.
Some needed the job but weren’t trained for it; others were looking for advantages. “Tell the agency I am doing a good job. I can still do it.” Others wanted to provide companionship. I needed a health-care worker as an associate, not a friend. After several mismatches I found R. She has an opinion but adjusted to my rhythm with curiosity and ease. She was flexible and respectful and participated, not just observed. I laughed when our beloved cats swished around her feet and she protested, “I don’t take care of kitties. Do they scratch?” I like R., and we worked well together, but I couldn't wait to have my old routine back.
Who Is My Brother? My Sister?
“We live in a society of strangers."
We all need help. I knew that I was not able to take care of a loved one all by myself. Most children work and have their own families. When a parent falls ill, children are not always able to jump in. They cannot take on another obligation in their already busy lives, and they become overwhelmed. Parents then are vulnerable, feel neglected or not listened to. We live in a society of strangers and sometimes have to adjust to finding a sister or brother in unexpected circumstances.
There were days I felt dejected, exhausted, and even questioned my ability to sustain my caregiving. I’d mumble, “Will it all end with a whisper or a bang?” But inevitably, I pulled out of my dark moods as soon as my husband reached for my hand and squeezed it with appreciation and love.
What we long for in a caregiving situation is a close approximation to our former ways of life, and we often look to our children for help. But sometimes it’s a friend or a neighbor or even a stranger who gives unexpected support and assistance.
Hope
“What do we still have to learn, and will I have to shed my old skin like a snake?”
Do I believe in omens? I have always found them thought-provoking. In the past, I have been both right and wrong about them.
The afternoon my husband’s abdominal pains began, I was waiting for friends to pick me up to go to a book reading. I was standing in the middle of the group when a large flying instinct swooped down, missed all others but stung me on the cheek. The bite immediately swelled to a large red lump. Was it a warning?
The evening after my husband’s surgery, I was watering my garden before heading back to the hospital. Over pebbles bordering a colorful flowerbed, a tiny snake slithered by—its wet coat illuminated by the sinking sun. I watched the reptile make its way gracefully and smoothly over the terrain then disappear under a shady green leaf.
Three days later, I was again watering when I spied the snake's skin draped over the blades of grass, a long, glittering, unbroken necklace with dew drops like diamonds covering its elongated shape. I carefully gathered the skin and brought it into the house. What is an augury? For me, my husband, or us both? We’ve lived a fulfilling life. But where will the future lead us? And what do I have to learn? Do I have to shed my old skin like the snake?
After I found the remains of the snake's skin, I caught a glimpse of its owner only once more. Flitting by in the blink of an eye, I saw a blue hue enveloping its scales as the flaming sun dried the birthing mucous. Its skin looked smooth and elastic. I parted the sprouting grass blades and searched under leaves, but the snake was gone. Perhaps its message was that future plans could not be revealed.
I wonder if my new skin will glitter in various ways? Or be bluish like the snake’s? How might it be different from my familiar skin?
The years of growing old have been rewarding, filled with joys of family life and the devotion to our beloved grandchildren. Perhaps now my husband and I have a new trail to blaze. It is time to be just the two of us again, travelling full circle to the beginning of our relationship. It was fun then and should be fun now. The snake has shed its skin, revealing a new life. We, too, believe there remains another chapter in our journey. Just a few more years at each other’s side is all we need.
Ute Carson, a German-born writer from youth and an MA graduate in Comparative Literature from the University of Rochester, published her first prose piece in 1977. Colt Tailing, a 2004 novel, was a finalist for the Peter Taylor Book Award. Ute’s story “The Fall” won Outrider Press’s Grand Prize and appeared in its short story and poetry anthology, A Walk through My Garden, in 2007. Her second novel, In Transit, was published in 2008. Her newest book, Time Did It can be bought at any bookstore, or it can be ordered as a signed copy directly from the author at utecarson.com.
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