The Willing Caregiver

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...

As always, big thanks for reading. And especially for bearing with me through a few weeks of barren writing. Much happening, but all good. I dedicate this post to all of you who have intimate knowledge of the sacrifices and hardwork necessary to be a great caregiver. See you back in a few days...

The Boss

Even before entering his room, I could hear my next patient yelling as I stood in the hallway. "No," he screamed. I heard a woman's voice murmur back. "I don't care. I won't eat it." The woman's voice, again, said something that I couldn't understand. "I hate it!" the patient screamed again. "You can't make me!"

Before taking that first big leap into the unknown, I knocked on the frame of the door. I entered. And there, sitting Indian-style on the cot, his arms crossed, with a big pout resting across his face, sat my next patient. A five y.o. little boy, chunky and sulky, in a huff, refusing to eat the spoon of vanilla pudding his mother was holding to his lips.

The nurse, apparently on her knees wiping up a glass of spilled orange juice, looked back at me. Her rolling eyes told me all I needed to know about this room.

The mother put down the spoon as I approached her with my hand extended. "Hello, maam," I said, "I'm Dr. Jim. I'll be working with Nurse Michelle to take care of your son today." She smiled as we shook hands. I then turned my attention to the patient. "Hello, Scottie," I greeted him, "how are you? It looks like you don't like vanilla pudding, huh? Me either." A blatant fib on my part, all for the sake of bonding.

Scottie stared me down, giving me his best angry look. I held my hand out to him to shake, but all he did was turn his attention from my face to my hand, probably willing it to explode. "No!" he exclaimed, either in answer to my question about vanilla pudding or in refusal to shake my hand. Either way, I hadn't made a friend.

I focused my attention back on Mom, who had since taken a corner seat to rest. "Maam," I said, "what happened that brought you here to our emergency department with Scottie?"

Mom explained that Scottie had been diagnosed with juvenile diabetes just a few short months ago. Since this diagnosis, they have been struggling to find the right balance between his medications and diet. Unfortunately, Scottie has also been acting out. He typically got three shots of insulin a day, prior to meal time. And on multiple occasions, after receiving his shot, he refused to eat the food placed in front of him, instead demanding a McDonald's Happy Meal. Of which the family, in exasperation, eventually allowed. "Thank goodness we live near a McDonalds," Mom said, as if this was the answer.

It seemed that Scottie was the boss. King of the house. Ruler of the roost.

Tonight, after receiving his dinner dose of insulin, Scottie again refused to eat supper. "I want a cheeseburger!" he had exclaimed, per Mom. And then, before they could run and get Scottie his demands, Scottie went unconscious. Paramedics were called and rushed to the house to find Scottie's blood sugar low--45. They squeezed oral glucose packets into his mouth while attempting to start an IV, and soon Scottie was back with a finger stick of 115. They transported him to our facility.

"Scottie," I asked him, "you don't want to get rushed here to the emergency room again, do you?" He nodded his head "no." "Then you need to eat what Mom gives you after your insulin shot. Do you understand?"

He stared me down. I stared him down. And he stared me down some more, before finally yelling, "I want a cheeseburger!" Supposedly, his aunt and cousin were heading on in with a Happy Meal soon.

Nurse Michelle, in her best attempts, had ordered Scottie a tray. When it arrived, I went back into his room to see how he was doing. No Auntie with the Happy Meal yet, but his tray was one of the best collections of hospital food I have ever seen. Chicken noodle soup, cake, apple juice, french fries, a peanut-butter and jelly sandwich, soda, peaches, potato chips, and chicken tenders. There were no dietary discretions as we struggled to keep his glucose level up.

Unfortunately, there was no cheeseburger. "The grill is down," Michelle explained, shrugging her shoulders.

Guess how much of this delicious tray Scottie ate? Not one bite. Not one drink. Out of defiance, I'm sure. Despite our coaxing attempts, this kid appeared to call the shots. And it was obvious we weren't going to change his behavior in this one ER visit. I eyed up those chicken tenders, though, sitting on a plate under a lid, and said a silent prayer that they would still be on the tray after Scottie was discharged. Michelle, it seemed by her intensely focused eyes, was claiming the fries.

We repeated Scottie's finger stick as he continued pouting, sitting on his bed Indian-style, and were surprised to find it only at 50. "Here," Michelle said, cutting open several packets of liquid glucose, "you need to take all of these, Scottie, or else I'll have to poke you for an IV." Miraculously, Scottie devoured all three packets. "Mmmm," he said, smacking his lips and wiping his face with his shirt-sleeve.

Great, now the kid was getting hooked on glucose packets instead of real sustenance.

As we repeated his finger stick (98), his aunt and cousin walked into the room with the McDonald's Happy Meal. With that familiar greasy smell trailing them. Scottie jumped from the cot, barely able to contain himself, stepping up to his aunt and snatching the meal from her hands. No "thank you." No smile. No gratitude. He just turned back to his cot and ripped open the box of food, unwrapping the burger and finishing it in just minutes. After that, the fries. And finally, he slurped his Coke until the glass was gone.

He was good to go.

Before discharge, I pulled Mom out into the hallway. "Mom," I said, "his disease is lifelong and serious. You need to take the control from Scottie and gain it back. It appears he is calling all the shots right now."

She nodded in agreement. "I know, I know," she said, "my friends and family say the exact same thing. It's just..." Here, she broke down a little before finally continuing. "It's just that it's not fair that he had to get this diabetes crap, you know?" Now I nodded my agreement, thinking back to having those familiar feelings when my son was diagnosed with his malignancy.

"I know," I said, "it seems so unfair when a child gets a serious illness like this. But you need to show him, by example, that this is conquerable if he follows the rules. Eating a McDonald's Happy Meal isn't following the rules. Letting him make demands and granting them isn't following the rules."

She agreed again, and assured me that she would try harder in her discipline. She also promised me that she would keep the morning appointment we made for Scottie with his endocrinologist.

I wished her luck. She was the mother of a child recently diagnosed with a long-term illness. She deserved a break and some time to figure things out on her own schedule. I hoped she could see, though, that her actions would significantly affect how well her son would respond to his situation.

I hoped, too, that someday again, she would be the boss.

As always, big thanks for reading. I hope you have a great weekend...