We'll Be Takin' Him Home
2016; Wiley; Volume: 64; Issue: 8 Linguagem: Inglês
10.1111/jgs.14185
ISSN1532-5415
Autores Tópico(s)Family and Patient Care in Intensive Care Units
Resumo“We'll be takin' him home, Dr. Rousseau. We'll do the carin,’ not some strangers. He's family, and family takes care of family.” “But …” “Ain't no buts, Dr. Rousseau, he's comin’ home.” Robert was an 89-year-old African-American man with dementia, heart failure, diabetes mellitus, renal insufficiency, a Stage III pressure ulcer, and a feeding tube. I was worried that the family would not be able to provide the care he needed at home—after all, there were pills, insulin injections, Foley catheter care, wound care, tube feedings, bathing, doctor appointments, and the emotional and physical toll that comes with caregiving for a loved one, but I reluctantly agreed to let him go home and arranged for home care to follow up. Before they left, I made sure the family understood the demanding obligations of caregiving—24 hours a day, 7 days a week, with no respite. “We know it's 24 hours a day, but he's our brother, so don't you worry, we'll get it done. We also got church family to help.” I felt awkward. Here I was, a white doctor new to the Deep South, telling a black family how they should care for their loved one. How pompous I must have seemed. Later that afternoon, Robert disappeared down the hall on a gurney with six family members in tow, all in their late 70s and 80s and all with their own medical problems. As I stood watching them leave, I was afraid that the burden of the living room becoming the dying room would be too much—I expected to see them all in the emergency department within hours to days. The next day, the home care agency called me expressing concern about the overwhelming care needs for Robert. I told them I understood, but I wanted to do all that I could to honor the family's request. I also told them I thought Robert would die soon and perhaps they could work with the family in transitioning him to hospice. Two days later, the home care nurse called and said they were done—the care needs were too great, and they were concerned about liability. I called Robert's family and they provided another story; he was doing well and being cared for. They felt the home care agency had an “attitude” and were glad they would no longer be coming. I asked if I could make a home visit sometime in the near future. “Stop by anytime,” they said. A week passed, and there was no emergency department visit and no admission to the hospital, so I decided to visit Robert on my way home from the hospital. The house was one of many on a parcel of acreage in a rural section of the county. I learned that family members lived in the other houses in a kind of communal living arrangement, an occurrence not uncommon in the area. I walked up the tattered steps and knocked on the door. I heard slow footsteps, and after a minute or two, the door swung open. The smell of a home drifted out with the air—fried chicken, fresh bread, “old ladies’ perfume,” and love. This was a home. “Come on in, Dr. Rousseau. It's good to see you.” As I followed Robert's oldest sister down the hall, I noticed an oxygen tube snaking past an end table and into the living room. “We put the oxygen concentrator in another room, the noise bothered him.” As I entered the living room, there was Robert, sitting up in bed, eating fried chicken and okra. He smiled as his lips smacked with the taste of homemade food. He looked better than he did in the hospital. I was impressed and told the family so. “You all are doing a wonderful job. Robert looks great.” I let him finish eating and then gave him a brief examination. His skin was soft, the wound was clean and healing, the Foley catheter was well cared for, and the feeding tube—well, he was eating by mouth, but the insertion site was clean and without any redness or inflammation. I asked about the tube feedings. “Doctor, you see he's eatin.’ He's swallowin’ okay. He don't need that brown liquid goin’ through that tube, he needs my fried chicken—he needs real food.” What was I to say? Robert wasn't choking; in fact, he seemed to be swallowing just fine—in spite of a history of dysphagia. Still, I told them the risk of eating by mouth, probably more to make myself feel better than anything else, but one thing was for sure—Robert was being cared for, and he seemed to be thriving, at least for now. I reminded them to keep Robert's appointment with his primary care doctor in 1 week and then thanked them for their hospitality and bid my good-byes. Flash forward 7 years. I have learned much during my time in the Deep South, but what has impressed me most is the culture of care among African-American families. There is a history here, a black experience if you will; African Americans take care of each other, and they do not abandon a loved one. They gather together to provide care, and that includes not only family members, but also friends, neighbors, and church family. It is a true community of caring. And Robert? He was hospitalized one more time for pneumonia and heart failure but recovered enough to go home and never returned to the hospital. He faithfully kept his primary care appointments, and his sisters regularly telephoned in updates, but he declined after a small but deadly stroke and died 14 months after my visit. I was saddened when I heard of his passing but smiled when the nurse told me he died in his home, his family singing gospels, the church pastor holding his hand, fried chicken on the bedside table. Conflict of Interest: The author has no conflict of interest to report with this paper. Author Contributions: Dr. Rousseau is the sole author of this paper. Sponsor's Role: None.
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