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February 26 - March 1, 2015 

The Caregiver and Her Charge

Beneath the patient’s rough edges, a complete life

The New Physician March 2010

Aging WomanDear Ms. Sophie: When I met you, I actually thought you were dead. All gnarled into yourself, eyes closed, stiffened and still. The NP, Deirdre, kept on saying your name and rubbing your arms and even your sternum without any response. Essie, your home attendant, called the clinic because you had seemed off. The feeling of those first minutes in your bedroom reminded me of working on labor and delivery and waiting with terror for the newborn’s cry, sign, anything. I had half a mind to grab you and shake you awake myself. Finally, you let us off the hook and decided to squeeze Essie’s hand. That was all you were willing to put out that afternoon. No flutter of the eyes, no murmurs or sighs, nothing else.

We were occupied by your likely pneumonia. While there, I noticed a photo on the kitchen table of you in your 30s. Essie told us that you had been a businesswoman and never married. Beyond that, I didn’t know much except that you are without family or friends. We had other house calls to make, so we wrapped up efficiently.

On the way out, Deirdre said to me, “You know, Anna, Sophie is cachectic. Essie takes such good care of her, but in my years doing this, when I see someone who seems to be developing a pressure ulcer despite such good attention, they usually won’t make it past a year.” I cringed at the image of you waiting to die from an infection.
I’m ashamed to admit it, but I immediately felt pity and sadness from our visit. I knew that you were unable to leave the house anymore, and that Essie and your other caregivers were the constant people in your life. I didn’t realize how deeply unsettled you had left me until the evening when I found myself thinking about you as I lay in bed. I thought of your loneliness, your waiting, and I thought of myself, too, and being without my loved ones.

You also spooked me, Ms. Sophie. The way you were in bed with your waxy and unresponsive rigidity. It actually brought me back to my own grandmother who I had not seen since before she broke her hip. She had been a plump and vigorous lady with a penchant for shouting, not speaking. At her funeral, she was unrecognizable to me: wasted with a bizarre expression molded onto her face. This is how I couldn’t help but see you.

I kept coming back to your relationship with Essie. She is in her third year caring for you and stays over from Monday morning to Friday evening, only going to her home in Brooklyn on the weekends. She reposi-tions you every two hours so that you don’t get ulcers. And I mean every two hours, 24 hours a day.

I needed to forage for more pieces of you. Certainly I had come across people in the hospital who were ill, but to me, there remains an incongruence in finding someone so sick at home and in a place where time moves so seemingly quietly amidst a bustling city. Surprising myself, I requested permission to go back and see you again on my own. I also surprised Essie a bit. “None of you people ever came back before,” she said, but she welcomed me warmly. I was moved to return because the last visit discombobulated me so much so that I left with the impression that you almost weren’t a person anymore. I saw your wasting, smelled your sickness, felt your paper-thin skin, and heard your problem list. But I certainly didn’t see you, did I?

When I returned, you were awake and enjoying your daily dose of “Emeril Live.” Your eyes were open with a vague vacancy but tracking me at least. You weren’t with it enough to have a conversation. I mined Essie for tidbits of how you were and how you are now. Before that, I interrogated Essie about herself. She’s a talented lady and has had numerous careers from cosmetologist to nursing home aide. I got the sense that she doesn’t have to work in this position, but she said to me, “Anna, when you agree to take a case on, you take it on. You commit.” In Essie, you’ve found a gem. She sleeps in a corner in your living room, within earshot of your bed.

She diligently blends up all your food, attempting to put chicken and fat into anything you’ll eat. No one at the home-care agency ever wants to work holidays, especially Christmas. She wasn’t about to leave you alone last Christmas, and so she worked. She told her three kids that she had to because she couldn’t possibly leave you alone and was at your place for the holiday. They ended up knocking on the door and surprising the two of you with gifts, a great meal, and probably one of the best Christmases she’s had. Essie seems to be driven by a sense of duty and genuine compassion despite your stubbornness, Ms. Sophie.

I discovered that you hate having your hair touched and have no qualms about calling Essie a “bitch” until she stops fussing with it. You spent your career with Exxon. You used to be able to go outside with Essie and loved watching the little ones at the playground. You liked to spend your money on travel and visited Paris several times. You like to sing, but unless the song is “Mary Had a Little Lamb,” Essie doesn’t know what you’re singing anymore. You actually watch Emeril so much because you think he is your cousin Jack, who used to call daily from Canada until he became ill. Essie sensed that you had a special relationship, and this was confirmed when one day you told her that you had wanted to marry him but that your parents would not allow it.

It took me two visits to reconcile with my initial reaction. It’s easy sometimes to forget that there is a person in front of you because she cannot communicate with you. Thank you for reminding me how powerful the caregiver–patient relationship can be, for demonstrating that there is value in every season of life, as well as in the impact that we have upon one another. For even in a state of significant incapacity, you have retained the wonderful ability to teach and remind others about kindness, fortitude and humanity.

Anna Huang is a fourth-year at Cornell Medical College.