What’s in a detail?
It’s the details that count!
I’ll take my scrambled eggs dry…
When I met Eugene he was living with eight teenaged boys in a group home. I suspected that the boys were abusing him, but I was wrong; they treated him fairly and respectfully. He was neglected often enough but not for malicious reasons; it was pure and simple benign neglect, and it broke my heart. The group home was not set up to care for anyone who, like Eugene, was severely disabled. He could not walk, needed alot of help to use the bathroom, was fast losing muscle in his arms and no longer able to push himself through the house, and depended utterly on the good graces of others. Eugene watched and saw everything that went on around him — and, I suspect, given encouragement could have taught us all a great deal about how to raise children and teens in foster care.
As the new social worker for five group homes, I first met Eugene in the kitchen of his group home. The rest of the boys had moved into the rec room, and neither they nor the counselors had remembered to bring Eugene along. He sat calmly, neatly dressed in navy blue slacks and a pilled argyle vest over a yellow button-down shirt. One of 125 young people under my purview, Eugene stood out for several reasons. At 21 he had technically aged out of foster care, had no family, was severely disabled, and was getting sicker every day. His options were few and dire, and I finally had to break the news that he would very likely be placed in a long-term city-run institution. He protested, but we finally visited one; it was just as awful as we had anticipated. We entered a place where life had stopped even for the healthy – an end-of-the-road kind of place. We wrestled with its unbearable reality of forlorn creatures crying from white hospital beds. I don’t recall the details of our conversation, but I doubt that I had the skill to guide it in a way that might have helped Eugene, since I was barely managing my own feelings.
In the thirteenth hour, I received word that Eugene could be moved to a home for the disabled managed by a private religious group. It was in the country — a real home. We were both ecstatic, and a month or two later, my husband and I drove upstate to visit Eugene in his new home. I had high hopes as we glided through the autumn countryside, impressed by the natural beauty surrounding Eugene’s new home. But all was not as I had expected. Eugene looked thinner than usual and expressed disappointment about his new quarters, and after an hour of talking the problem came to light as a power struggle between Eugene and the head parent over scrambled eggs. As Eugene explained it, the eggs he was served every morning were runny – really runny, and he despised runny eggs. In fact, he would gag over them. He had talked to the head parent but to no avail. Couldn’t they fix that one thing?
This all happened some 30 years ago, and I don’t remember all the details about the eggs. Did I approach staff? Did I put in a special request? I don’t recall. I do recall, though, that my husband kindly offered to “punch out the house parent” on Eugene’s behalf. He didn’t, of course, but I think the three of us enjoyed the idea of it. A week later I learned that Eugene had died the previous night. I closed my office door, fell to my knees, and wept. I wondered if the tapes I had sent him had arrived before he died and felt immediately that I hadn’t done enough. I thought about our last visit and how unhappy Eugene had been. I also thought about the scrambled eggs. I still do.
When Dominique Moyse Steinberg told me about Custom Care Trust (CCT), I thought immediately of Eugene. If only, if only, if only… I thought. How is it possible to explain to someone that those undercooked eggs were the last straw in a life over which he was unable to exercise any control? He had been tossed about from house to house, left behind, ignored, and abandoned. Was it really too much to ask for eggs on the dry side? Those fights over those eggs represented the fight for some fragment of control that Eugene wanted over his life. He never got it.
I think that at its heart, Custom Care Trust recognizes that while we can’t change much of the course of life, we can bring dignity and honor to those in care. And by doing that, it alters the perception of caregiving. ECL