by Allan S. Teel, MD
As a community, we are negotiating an uncharted minefield between the oft-ignored rights and needs of our elders, the interests and viewpoints of their adult children, and the medical field’s out-dated interactions with elders. Many families are understandably distraught over how to best help mom or dad deal with their advancing years.
Jonathan Rausch (“Letting Go of My Father” The Atlantic, April 2010) emerged from caring for his aging father more than “a little indignant….The medical infra-structure for elder care in America is good, very good. But the cultural infrastructure is all but nonexistent. How can it be that so many people like me are so completely unprepared for what is, after all, one of life’s near certainties?…. today’s invisible caregivers face their own version of a nameless problem. They are being asked to do alone and out of sight what in fact requires not just private sympathy and toleration but public acknowledgment and proactive assistance….. convincing caregivers they need help is not easy, at least not until they need it too much. Americans pride themselves on resilience and independence. We don’t want to burden others with our problems. We don’t like to acknowledge that a crisis is happening or imminent. Above all, we prefer to assume that our own and our parents’ declines will be smooth and uneventful. By keeping the problem out of sight and consigning it to the realm of the ‘personal’, the culture enables our natural tendencies toward denial, procrastination, and silence.”
While such dedication to a parent as Mr Rausch demonstrated is common, it is not universal. He envisioned the need for a mandatory course at age 40 on elder care. In my view, such a class should incorporate a discussion of “the dignity of risk.” As originally framed to address the challenges of deinstitutionalizing those with developmental disabilities wishing to live independently in community, I believe it has special relevance to our elders as they blaze new trails living longer at home with more chronic conditions. In order for individuals to live a full and productive life, and have the opportunity to grow, they must have the possibility to succeed or fail. We can not orchestrate a risk-free life. Embracing an alternative approach to a highly controlled environment entails accepting some risk. Adult children of aging parents must come to terms with their own attitude toward risk. Their parents, generally, accept risk as an inherent part of every daily activity, whether going to get the mail or taking a shower.
However they may acknowledge their mortality, for many elders, aging in not particularly appealing. 83 year-old Poet Laureate Donald Hall writes in “Out The Window” in The New Yorker of January 23, 2012, “However alert we are, however much we think we know what will happen, antiquity remains an unknown, unanticipated galaxy. It is alien, and old people are a separate form of life…When we turn eighty, we understand we are extraterrestrial. If we forget for a moment, we are reminded when we try to stand up, or when we encounter someone young, who appears to observe green skin, extra heads, and protuberances.” Fortunately, most who come into contact with him, and his generation, feel honored to have the opportunity to share a few moments of conversation. It is critical that we create a community where such interactions are possible and frequent: a recreated intergenerational community. One that focuses on what our elders have to offer, not one that dwells on their limitations. That is a central theme throughout the work of Full Circle America and its ‘Maine Approach.’ engaging elders to be an integral part of the lives of those around them.
There is a sea-change coming, and last week’s New England Journal of Medicine lead story, “Goal-Oriented Patient Care – An Alternative Health Outcomes Paradigm.” signaled such a transformation. Its authors urge other physicians to ask what the patient wants, rather than focusing on managing the disease. “Ultimately, good medicine is doing right for the patient.” Whether the stakeholder is the community, the adult child, or the medical establishment, as we address the rapidly increasing numbers of elders around us, we would all do well to remember this simple statement.