Authors

  1. Roush, Karen MSN, RN, FNP

Article Content

Your dying had started weeks earlier, but we refused to notice. It was late September. The shortness of breath, the protracted vomiting, the hours every morning emptying your bowels into the toilet before you could get on with the day. The emergence of bones everywhere, cheekbones and pointy shoulders and the orderly stacking of ribs.

  
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You have been gone 15 years this week.

 

A phone call that morning sends me speeding to your house. I find you naked, wrapped in an afghan, confused, and lethargic. I help you dress and drive you to the hospital.

 

You are 26 years old.

 

That first night you slip into a coma, your thin limbs lying unnaturally straight beneath the sheet. The next morning I awaken in the chair next to your bed to find you sleeping, curled on your side, corticosteroids doing their magic on the swelling in your brain. Two nights later I'm running to the diner at 1 AM for burgers and fries, and now here we are eating popcorn and laughing.

 

You are more than my best friend. Have I told you that? I sit by your bed and wonder who I will laugh with, lament with, drink beer with on Saturday nights. Who will hug me, who will think me beautiful? I want to demand that this dying stop, scream at you not to leave. But instead I bring popcorn and videos and the Bazooka gum you love. And we laugh. Because even now, it is what we do best.

 

A nurse comes in, glares at us. "This is a hospital, you know!!" and leaves, closing the door after her. We crack up. It becomes a running joke between us. We admonish each other repeatedly, "This is a hospital, you know!!" "Oh, I thought it was the Four Seasons!!"

 

It is mid-October, two weeks since your admission. After the first few days you have steadily worsened. We both accept you won't be going home again. Outside your window the sun shines on a glorious fall day. "Do you want to go outside?" You look surprised, not believing. "Do you think I could?" I want to cry with gratitude that there is something I can do after all, this small thing that has lit your eyes. "Sure, there's a porch off 2 East. We'll bundle you up in blankets." I find a wheelchair and extra blankets and soon we're rolling down the hall. People stare. I stare back, defying their curiosity, their fear, their health. Outside we sit silently, your face tilted to the sun, eyes closed. We stay like that until shadows envelop you and the air turns cold. "I'm ready to go back now."

 

You can't eat much anymore. Yet still the diarrhea is relentless. Sometimes it goes on for hours, I help you onto the commode, then back into bed, then a minute later, back onto the commode. It exhausts you. Soon you can't make it onto the commode in time. One night at 3 AM I help you into the shower, hold you up, wash away the accumulation of shit and sweat clinging to the remains of your body. You are 5'11" and weigh 85 lbs.

 

You don't seem to fear death. You don't seem to fear the pain. But you are terrified that you will lose your mind. AIDS dementia, from the early days of your diagnosis you have dreaded that possibility. And now it has begun. You hallucinate, there are outbursts, disorientation. And then you will be absolutely clear again. It is during one of these lucid times that you ask me to kill you. You don't say it like that, you ask me to "help" you if things get too bad. "Don't let me end up like my grandfather," you say, having watched him die incontinent and demented. "I would do anything for you, you know that." I answer, horrified. "But you can't ask me to do that!!" But it is too late, you have already asked.

 

You slip in and out of consciousness. Days and nights I sit, caress your shoulder, talk quietly into your ear. You're restless, moaning softly, one night you call out my name repeatedly. I had promised to take care of you. Now I sit by and do nothing while you lie diapered, delirious, suffering. I stare at the IV pump, watch the morphine drip. It would be so easy to accomplish what you had asked.