The Meeting
The meeting I attended that spring evening is one of those indelible memories that remain crystal clear even several years later. I can still picture the slender elderly woman with her hair in a loose bun on top of her head when she rose to speak. Her right hand was braced upon a cane and her left hand rested protectively on the shoulder of the man who sat next to her. She was noticeably stooped, as if the tortoise shelled glasses which hung on a cord around her neck pulled her head downward. Her face, heavily wrinkled, appeared desiccated, but held soft grey eyes that matched the color of her hair.
I guessed her age was late seventies and the man beside her was perhaps twenty years her junior. He was likely her son, I knew, with the same oval face, grey eyes and aquiline nose. Unlike her, however, he was obese and sported navy blue sweat pants, a matching tee shirt and an Atlanta Braves baseball cap, which rested askew on top of his head. Because I sat in the front row of the audience and she sat in one of the middle rows, I turned in my seat to see her as she addressed the panel of three who sat behind a long table at the front of the room. It was the question and answer segment, which followed the presentation by two of the panel members.
The gathering that month was heavily attended with all of the forty or so seats taken and a few outliers who stood at the back of the room. The evening’s topic was the pros and cons of seeking guardianship for a developmentally disabled loved one. The panel consisted of two lawyers whose law firm specialized in helping families with a special needs’ family member to understand Georgia law in this area. The third person on the panel was Alice Lewis, the moderator and director of the county nonprofit who sponsored the monthly meetings and whose purpose was to provide information, guidance and support for families with a developmentally disabled family member.
Most of the people in the audience were the parents or relatives of a developmentally disabled adult, and I was acquainted with several of them, but it was the first time I had seen the woman and her son. Although most of the attendees didn’t bring their family member with them to the meetings, a few always did because they hadn’t anyone else to watch over him or her at home. Everyone in the audience well knew the enormous responsibility of providing care for the developmentally disabled and everyone there sought help and support wherever they could find it.
She spoke haltingly, in a raspy voice and introduced herself as Jean something or other—I don’t recall her surname—and her son, John, who looked up expectantly when he heard his name spoken, then writhed in his seat and made a moaning sound in recognition of his name. Jean informed us that she was a widow whose husband had died over a decade ago. John was an only child, we learned, and suffered from cerebral palsy as well as developmentally disabilities, including his inability to speak. Jean has been his sole caregiver since the death of her husband.
After Jean’s introductory remarks, she hesitated, as if unsure whether she could continue. The silence in the room stretched, broken only by random coughs and whispers, while some of us stole glances at others in the audience or we idly checked our phones. But just when it seemed something must happen or Alice must surely intervene, Jean began again, in a tremulous voice, which oddly reminded me of my sister’s voice when she’d called me that night years ago to tell me our mom had died. Jean informed us she was dying of stage four lung cancer, even though she had never smoked, and that her doctor told her she had one to two months left to live. The chemo and radiation treatments were no longer effective, she’d been advised, so she should get her affairs in order.
Jean commenced to softly weep while John gazed up at her and plaintively keened in a deep, mournful voice, the sounds of which I shall never forget. We didn’t know, of course, whether John actually understood his mother’s declaration or whether he’d become upset by her crying. Jean patted John’s shoulder in a mostly successful effort to quiet him. Grief always has a recognizable element to it, whether it be heard in a voice or seen in a face, the tragedy having either already happened or about to happen; we are held hostage by it, unable to free ourselves from its implacable bonds, whether for days, months or even untold years.
Jean regained herself and she told us that she had no other living family members and that she’s been John’s primary caregiver for all of his fifty-four years. Jean then turned to the room at large and asked if anyone there would consider taking care of John and become his guardian after she was gone. She was not John’s legal guardian because she could never afford to hire a lawyer, but now she was desperate to find someone before she died or John could end up in foster care or even in a state institution. Quiet enveloped the room as she scanned our faces, as if to find a hopeful countenance among us who might answer her urgent plea for help. It was a heartbreaking moment to witness Jean’s anguish and desolation.
Alice stood and asked Jean to stay after the meeting so she could talk to her about resources that might be available to help Jean and John. I never saw either of them again, but we did learn from Alice a couple of months later that Jean had died. John had been placed in a foster home for the time being until a permanent group home placement could be found that would be suitable for John’s needs. Sadly, there hadn’t been enough time to find a permanent group home for John and despite Jean’s pleas no one had stepped forward to become his caregiver or guardian. The Georgia Department of Child and Family Services would likely become John’s legal guardian, whose employees were underpaid, overworked and overlooked by the state’s politicians.
Cases like John’s happen all the time and those of us with the responsibility of caring for a developmentally disabled family member worry constantly about the future, which often sneaks up on us in unexpected ways. It is tragic that Jean had died not knowing what would become of John or who would care for him. As the richest nation in the world, it is grievous that we don’t take better care of those among us who cannot take care of themselves, be they elderly, poor, sick or disabled.
We are fortunate to have a wonderful daughter who will help look after her older brother when we are no longer alive. But she has her own children to raise and a demanding career ahead of her, so once we are gone the adjustment for our son will not be an easy one, my wife and I know. After years of diligence, we are also equally lucky to have secured a Medicaid Waiver for our son so that he should be able to live in a good group home for the rest of his life.
Although it is likely that neither my wife nor I will be there at the end of our son’s life, still, it is a scenario that haunts me from time to time. I picture how frightened he will be if he learns that he is dying, which I desperately hope he never does learn and that our daughter is there, with him, at the end, holding his hand and assuring him that he will be okay and not to worry, that tomorrow will be a better day.
Jeff Hyndman is a retired IT worker who then worked for four years as a substitute teacher at a nearby middle school teacher. He lives in a small town outside of Atlanta with his wife of 39 years, two dogs and a cat. His daughter lives and works as an attorney in Atlanta and his son resides in a group home north of Atlanta.