HOMEBOUND, JOHN | Kathryn Mousaw
The air conditioning unit about 10 floors above always drips on my head while I search for the right buzzer, 22G, John's home. He lives in a high-rise apartment building in the downtown area of our city. There is no parking lot, so I park about a block away and walk towards the building, work bag on a dolly so I don't have to shoulder it the long distance. I spray my bag, cart, shoes and pants with bed-bug repellent before entering this building; it is historically infested with bed bugs and I do this whether or not the person I see “has them” I take all precautions.
I have been seeing John every weekend, Saturdays and Sundays, for about two months. He’s in his early forties, legally blind, on dialysis, with one leg amputated below the knee. He is a Type-1 diabetic, diagnosed in his early twenties and very frail, or brittle. I see him to change a bandage on his good leg where all his toes have been amputated and the incision is not healing, also related to his diabetes. It is very unusual for any patient to receive daily visits; insurance usually will not pay for such indulgences, even for a one-legged blind guy.
I could probably do this dressing with a blindfold on myself and be back in my car in less than 20 minutes, but I always make at least a 30-minute event of it. We talk about life: the city, current events, our fears and hopes. John listens to the radio, eats cereal twice daily; he was in a book group, has never married but tells of past women he loved. His apartment is sparse, unvacuumed and smells of stale food. His refrigerator is half full of items like: a single piece of white bread under cellophane on a Styrofoam plate, four expired 8-ounce cartons of skim milk with dates too small for him to read, salad dressing and mustard bottles on the shelf door. Sometimes I take out the trash, wash the dishes in the sink or hang up towels in the bathroom. I tried to vacuum once but the vacuum was broken.
John listens to me too. I told him about when I met my half-sister—the whole story from pursuit, to correspondence, to confrontation, to relationship. He was eager to ask me each weekend what had happened and gave his opinion and own feelings about it. His family was not a part of his life. Both of his parents were dead and there was a step brother he never kept in touch with who lives states away. That’s it. It feels so empty and lonely here, but he never speaks that way. He is always pleasant and accepting of his life.
After about one month of seeing John, I felt an uneasy confidence that he was going to lose the other leg, the one I came to see daily. He could not feel me pushing the 12 inches of gauze into the hole where his toes once were. The skin was discolored, thick and peeling. It did not ever bleed or blanch when touched. I told him my concerns when he asked, but downplayed my intuition as merely a feeling, though I have been a nurse for nearly twenty years and seen my share of pale, blackened, failing limbs. I called his doctor to inquire about using a different product for his wound to help prevent infection and decrease the need for daily visits. My questions were met with a condescending tone and dismissal of my concerns. I became calloused and angry with this physician as my attachment to John grew. My feelings hardened as I continued to participate in what seemed pointless.
John was never calloused or angry. He was accepting of his life, these circumstances, these days. He was able to enjoy what was. John would leave for dialysis at 5 p.m. three times a week and be brought home at 4 a.m. to the apartment building, his empty apartment, the bed bugs. He was brought home in darkness, but it didn't matter because his world was already dark. He told me that once, when I complained with my own worry for his safety. He didn’t have a full leg to stand on, he wore thick glasses that did not help him see better, his vacuum was broken and the milk was spoiled. A stranger comes to his apartment twice each week to shower him, and another stranger delivers bread slices and pre-made meals once a day so he has some food to eat. And I, a stranger, comes to his home once a day to wash his only foot in the vain hope of some type of healing.
It is decided this foot will also be amputated below the knee; he will have a matching set. Surgery is planned with a likely stay in a nursing home for rehabilitation so he can learn how to live without feet: taking on and off two prosthetic legs, dressing, balancing, walking, getting in and out of the cab for dialysis. John is hopeful, but I worry deeply for him. More precisely, I cannot imagine living so alone with so little and now facing surgery, so I worry for him and ruminate about myself.
Three months pass and I am in John's building to see another patient. I casually decide to check if John is home or maybe someone else lives in 22G. The door is open and for a surreal moment I believe he is there.
“John? It's the nurse,” I say.
Two women are inside and meet my eyes. The apartment has boxes in it and John's few belongings are scattered about. There is that stale food smell, but he is not there. The women introduced themselves to me, from his book group. They tell me John died this week. He has been in heart failure since suffering a heart attack during the amputation surgery. One of the women is tearful and we all talk fondly of him and how remarkable his quiet, accepting way was.
As I leave the apartment I feel a loss. I am upset he had the surgery, spent months in the hospital, suffering, and now has died. It’s hard to comprehend what his options were with a slowly dying leg, failing kidneys, dimming eyesight? To continue dialysis with 4 a.m. curbside drop-offs? Not feeling the ground under one artificial leg or other toeless foot? I am so angry about this, but not able to pinpoint the real source besides simply grief. Is it selfish of me to care, to miss him?
I think, and I think, watching the elevator numbers decline one by one. I step outside and feel the drip of the air conditioner hit my head as I walk to my car.
Kathryn Mousaw is a registered nurse, mother and writer. Working with patients in their homes changed her understanding of medicine, family and herself.