June 30, 2016

People with cognitive disabilities need the sense of safety and peace that love creates; care for them must therefore provide loving attention, which reveals their value to themselves. We must set aside the distorted position that a person's worth, dignity, and status as a human being depend entirely on cognitive capability. We must develop a view of personhood that takes into account the emotional, relational, symbolic, and even spiritual capacities of the person. We live in a culture that is dominated by heightened expectations of rationalism, clarity of mind, and productivity. We internalize these expectations; thus when someone we love is diagnosed with early dementia, our reaction is likely to be despair. Our goal, however, must be to remember that the deeply forgetful are neither "shells" nor "husks"; they have not become subhuman; they remain part of our shared humanity. About this we must be clear, lest we succumb to the banality of evil.

And there can be evil. Dementia is an affront to our values of hypercognition and economic productivity. Why tolerate "useless eaters" and "life unworthy of life"? In Berlin in 1939 the T-4 Project began under the direction of Werner Hyde, a professor of psychiatry. In T-4 an estimated 94,000 psychiatric patients (all of them "Aryan" and roughly half of them with dementia) were suffocated in gas chambers or left to freeze in vats of ice water as part of a research project on hypothermia. Public outcry in Germany put an end to T-4 in 1941, but the methods were transferred to Dachau and Auschwitz, where the authorities applied them to other so-called inferiors. We must never forget that the true authority, that of the kingdom of heaven, classifies no one as "inferior." A woman I know wrote me the following note after her father had passed away from Alzheimer's:

"Looking back over the years, we feel we did some things well, some things not so well. We realize times were often difficult. However, there were good times too, seeing his face light up when we walked into the room, seeing his smile, watching him laugh, seeing him enjoying music or some other activity, receiving those big hugs, watching him sleep so peacefully after hours of restlessness, hearing him say `I love you too!' or when he was no longer able to speak seeing the love in his eyes as he squeezed your hand so tightly! Yes, these and other memories are cherished. We're so thankful we were able to help him during his journey. All who knew him will remember his wonderful smile and Christian integrity. We've been told by many how he positively touched their lives in spite of, and even during his illness. We're convinced an Alzheimer's patient feels and yes, even comprehends, far more than we realize. Personally, we feel they never lose their need to be loved."

How in practice can we transmit to them our love and the love of God? As caregivers, we should talk even to the most cognitively disabled, calling them by name and expecting a response (which, sometimes surprisingly, may come). We should speak with a warm and calm voice, with a joyful facial expression, bending down to make eye contact, communicating with them rather than around them. We can use pictures, music, hymns, Scripture, poetry, meaningful symbols, and short simple prayers. Above all, we can affirm the existence of the deeply forgetful, no matter how diminished that existence may seem. We are not obliged to reorient them into our reality, but we are obliged to be an attentive presence in theirs. Why? Because we remember not only the Psalm about aging and the commandment about parents, but also the words of Jesus about the infinite value of small acts of kindness: "Amen I say to you, whatever you did for one of these least brothers of mine, you did for me."