Becoming the official caregiver to your sick parent


I imagine the world as a vast, boundless frontier weathered by our swirling human emotions and complicated energies — hurricanes of intense heartbreak and tornadoes of joyous, unbridled celebrations, with every weather pattern in between. Sunshine and rain included.

If I could gather this world, foolishly believing that I could sweep my arms and hands through the unsuspecting air to collect a smaller, more-contained version of reality, I know with absolute sureness that what I would be left with is a typical day’s worth of experiences in the emergency department. It is a microcosm of something similar to big life.

So many patients, so many illnesses, so many human interactions. So many words of comfort. So many experiences bombarding us daily. And try as we might to protect ourselves, building brick-by-brick our fortress of emotional barriers, ultimately, we cannot help but let some of our patients weave their very own threads into our personal life blankets.

I walked into Room 20 to treat my next patient, a woman in her mid-seventies. Because of a life-long battle with diabetes and its resulting circulatory problems, she was now permanently wheelchair-bound. She sat upright in her cot, in a hospital gown, without any blankets covering her. At the base of her right thigh, poking out from her gown, was a puckered-up cork of skin, where her leg had healed from an above-knee amputation. On her left-side, her leg extended just slightly lower, below knee-level, where, again, the rest of her leg had been amputated secondary to gangrene several years prior.

She was petite and frail. Despite a high fever and feeling ill, she sported a recently washed-and-set hairdo. She also wore some light makeup and dark lipstick, appearing well-cared for. The smell of her room, however, suggested otherwise–it permeated with the familiar stench of a Depend diaper that was overdue to be changed, most likely saturated with stale urine.

In her room’s corner, sitting quietly and patiently, was her only child. A son, probably in his late-forties to early-fifties. He appeared fidgety at times, but was very attentive to both myself and his mother. He was, as it turned out, his mother’s only living relative.

And her primary caregiver.

“Hello,” I said to both of them, extending my hand to shake first the patient’s and then her son’s. “I understand you’re here because you don’t feel well, Mrs. Smith. Is that right?”

“Yes,” she answered, slightly nodding her head as she spoke in a high-pitched, whispery voice, “I think I probably have a urine infection.” She was probably spot-on, since that can be one of the most common causes of illness and fever in an elderly woman. She went on to explain the burning she experienced with recent urinations and her need for wearing Depend diapers because of the resulting incontinence.

“Have you had a urine infection before?” I asked her.

“A few months ago, yes, but otherwise I’ve been lucky, knock on wood,” she answered, lightly knocking her closed fist against her imagined wooden temple. She then went on to explain to me that her right stump had healed beautifully from her recent surgery and had little reason to suspect that this might be the problem.

After reviewing the rest of her history and performing a stable physical exam, I ordered the patient’s tests. And sure enough, she had a UTI, just like she suspected. With the help of some Tylenol, we were able to break her fever and by the time her blood results returned stable, she had been cleaned up and was feeling much better, with an IV dose of antibiotic finishing its run into her left arm’s receptive vein.

I explained the results to her and her son, who, despite his mother’s good response, had remained quietly sitting in the corner. He was edged forward on his seat, however, as if eager to say something.

“Sir,” I said, “you look like you have something to say.”

“Well,” he said, glancing between his mother and myself, “do you think it’s my fault that Mom got the urinary infection? I’m still learning how to help care for her.”

“Michael,” the patient answered quickly, “of course not. These things happen.”

I liked her answer, but his question opened a floodgate of mine. “Why would you ask that, Michael?” I asked him, intrigued.

As it turns out, Michael, this patient’s successful, independent son, had sold his out-of-town condo, sacrificed a current relationship, and moved back to our region and into his mother’s home, all to take care of his mother after her second amputation.

“Do you have a medical background, Michael?” I asked him, amazed at his devotion. He nodded “no” to my question. “Have you ever been a caregiver before?” I continued, fully understanding just how much weight now sat on his shoulders.

The patient chimed in. “I told him to stay put, but he wouldn’t hear of it. I feel bad he’s halted his life to help me with mine.”

“Mom, I wouldn’t have it any other way. You talked me out of returning after your first surgery,” he spoke shyly, pausing to nod at her left leg, “but there was no way I was going to stay away after this recent amputation. Unfortunately, I think your urine infection is from me not cleaning you well enough.”

Now, imagine being a grown child, with no previous caregiver experience or medical background, halting the life that you’ve created only to move in with your sick parent. Your parent of the opposite sex, no less. Assuming care that included bathing responsibilities, bathroom runs, feedings, cleanings, appointment dates, and on and on and on.

And on. This was role reversal at its most intimate level.

Michael became an official caregiver. A frightening word for some, a privileged word for others. Regardless, it is a word that many people rightfully now use to describe themselves. Whether it be a sick child, a parent, a spouse, a partner, a grandparent, a relative, a neighbor, or a friend, there are currently 49 million people in our country who provide care in either a professional or personal sense.

Suddenly, I looked at this son in a new light. With no obvious agenda, he was doing what he felt was the right thing for his needing parent. And with his new responsibilities, he was going to be facing a whole new world of emotional weather.

Without any warning, my memories transported me back to when my father, my six siblings, and myself committed ourselves to providing 100% of Mom’s home care during her last few months of battling leukemia. Although filled with much learning and many surprises, I think I can say that we all became extremely appreciative of the effort involved in taking total and complete care of a loved one. We were grateful for the experience, though none moreso than Mom, whose beauty and bravery during her last few days only magnified under our personal and steady care.

The patient spoke again, bringing me back to the present. “Michael,” she said half-heartedly, “I wish you would have just agreed to put me in a nursing home like I wanted you to do.”

“Mom,” he responded emphatically, “I won’t hear of it. At least not now. If things get too complicated, then we’ll talk about it again. But wouldn’t you rather be home, still? Seriously?” The patient took her time answering. “Yes,” she finally admitted, “yes, I would rather remain home. But not if it means you are going to stop living your own life.”

“I’m fine with it, Mom. I would never have moved back if I wasn’t. And quite honestly, there is no where I would rather be right now than here, helping you the best I can.”

Their smiles reflected off one another while another brick crumbled and fell from my fortified emotional barrier.

I finished the patient’s treatment with a case management consult to ensure that Michael and his mother would benefit from several available resources, including home nursing visits. Walking out the door, I wished them both luck. But before leaving, I had to ask. “Michael, did you help your mother with her makeup, hair and clothes today?”

They both laughed. “Yes, he did,” the patient answered. “How do you think he did?” Now it was my turn to laugh with the patient and good son. “I think he did a darn good job,” I answered, “you look very nice, maam.” I turned to Michael. “Well done, buddy.” And I’m sure he knew I wasn’t talking about how his mother looked that day.

Now, if only he would learn how to change a Depend diaper …

StorytellERdoc is an emergency physician who blogs at his self-titled site, StorytellERdoc.

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