"Well, it's off to the 'God Forbid' wing," said the weak and stooped man as he left the dinner table. Despite his physical decline, he had lost neither the old wit nor the ever-new twinkle in his eye.
Asked what a "God Forbid" wing was, he turned back to the guests to explain. "For years, the kids would say, 'What if Mom dies before Dad—God forbid—what will we do to care for him when he needs help?" They did something. They built a little addition to their home so their father could have some dignity and they all could have some privacy. The daughter and son-in-law had an excellent kidding relationship with Dad. That is why they could conspire to smile as they called his residential quarters the "God Forbid wing."
Obviously, I have been describing the kind of middle-class family in which people can afford to build additions to their house to accommodate the aged or the ailing. Most home care situations are much more grim. Dad may even be desperately ill, demanding constant attention and unable to join the family and guests at dinner. Mom may be afflicted with Alzheimer's and can't follow a conversation. Grandma is bedfast. And in as many cases as not, the woman of the house does the caretaking even though she is poor, busy with a job to stay above subsistence level, preoccupied with her own children, and untrained. In such circumstances—God forbid—there is no extra room for the ill or aged, and little patience or reason for hope.
Caring in the home is still the great overlooked medical-social problem among all classes in the United States. Most congressional debate about health care deals with financial support, institutional situations, equity in access to hospitals, and who pays for it all. Overlooked are the millions of homes whose occupants, sometimes generous, often testy, wake to persevere another day. Who cares? What to do if one cares?
Ask administrators of hospitals about early release of patients, and you might hear: "We don't send them home dangerously ill, but uncomfortably so." And the listener gets caught back with the word "home," before "dangerously" and "uncomfortably" are uttered. Where is home? Who opens the resistant pill bottle for someone "at home"? Who calms their fears? Who will know if there has been a stroke? What if there is no family for the older person, or the family is far away, or unable, or unwilling to care?
Listen to administrators and you hear little hints and clues. "Well, we have to count on other agencies, such as local churches, to provide support and resources and care." And many local institutions do. But in many cases the congregations are themselves unsupported and lack resources. And they are often made up of people who themselves need such care or cannot provide it.
Professional agencies often go unmonitored, are inefficient, and not easily accessible or affordable. There are few funds for more institutions, and institutionalization itself represents a defeat for anyone who wants care or wants to care at home.
It would be nice if we could offer a catalog of solutions, recommendations, and counsel. But it is too early in the game to do much more than sound alerts and alarms, or to offer hints and clues and, of course, stories. Through hearing the stories, we can become conscious of the need to develop diverse strategies and put both imagination and willpower to work. Where these are lacking, there is no benign "God Forbid wing," but only the forbidding gasp: "God forbid!"