Susan and I have had many conversations about what we do and do not wish when death comes to one of us. Should that death come as a result of cancer, we both agree, the surviving spouse is not allowed to include the phrase “after a courageous battle with cancer” in the obituary. It is bad enough to have terminal cancer, and I would prefer not to have the social requirement to be “courageous” about it added to the burden. But I object even more strenuously to the word “battle,” yet another example of how we use the language of warfare to take about disease. We declare “war” on diseases, we “hit them with the heavy artillery,” we are committed to “conquering” every condition that hastens the mortality we wish to deny altogether. If you do not choose to “battle” your disease with courage, you are labeled a failure at having cancer.
Daniel R. George has written an important essay for The Lancet titled “Overcoming the social death of dementia through language." He argues that “Guided by the language of warfare, we have come to view people with dementia as ‘victims’ who are ravaged by a singular marauding disease. Alzheimer’s disease is personified as a ‘mind-robber’ that ‘attacks’ or ‘strikes’ the brains of individuals…” Such language, he insists, demonizes the very aging process itself, a process that will bring cognitive changes to virtually all of us.
He challenges other words associated with dementia, including the prevalence of the word “burden” in describing not only the toll on caregivers, but upon wider society. “Burden” multiplied by the demographics of aging baby-boomers quickly gets us to the language of “crisis,” feeding the engines of fear and guilt (for “being a burden” is the ultimate sin in a consumer society which assigns value to persons almost exclusively upon the basis of their productivity).
Add more terms to the list. Dementia is a kind of “living death” that takes away the person and leaves only a “shell” behind. Dr. Richard Taylor wryly observes that “My dementia did not turn me into a turtle!”
The language we use to describe the changing circumstances of our life matter. When we declare “war!” on AD, we have established an unobtainable goal unless we are prepared to vanquish aging and death itself. I am fine with goals that include words like “delay” or “mitigate,” worthy goals that may one day be attainable.
But above all we need to eliminate the language of “victim” in describing persons with dementia, for a victim is someone to be pitied rather than enjoyed and appreciated. George notes that the Intergenerational School employs the word “mentor.” I would be happy with most any terms which suggest that the person with dementia is still among us, with his or her personhood intact even if changed. Personhood, after all, is always defined by both continuity and change. Perhaps “elder” is as good a word as any, for we will all become elders whose cognitive condition will change as we journey into late life. If we sort elders into two rigid categories, the “victims” and the “survivors,” we have created losers and winners in the contest of “aging well.” Life is neither a contest nor a war. It is a tapestry of relationships that will continue to be woven so long as we have life and breath.