The Predicament of Dementia

Father Tadeusz Pacholczyk notes an unfortunate, but natural, reaction to dementia. Relating the story of a woman who could only connect with her afflicted mother by singing hymns, with the lesson being that “there’s always someone in there,” Pacholczyk goes on to lament our tendency to behave as if that’s not the case:

Sometimes we may view the situation more from our own vantage point, rather than the patient’s. In a report on care for the elderly, physicians Bernard Lo and Laurie Dornbrand put it this way: “Family members and health professionals sometimes project their own feelings onto the patient. Life situations that would be intolerable to young healthy people may be [made] acceptable to older debilitated patients.”
[Steven] Sabat notes how this raises the prospect of reducing the patient to a kind of object:

The dementia sufferer is not treated as a person; that is, as one who is an autonomous center of life. Instead, he or she is treated in some respects as a lump of dead matter, to be measured, pushed around, manipulated, drained, filled, dumped, etc.

Two thoughts: First, it’s possible to see a debilitating mental illness of late-life as a means of easing the process of death’s separation. To the loved one, the circumstances of the patient appear intolerable — perhaps more so than death itself — but if treated properly, the sufferer may not have to see the circumstance as one of suffering. In that way, the gradual loss of a connection to reality makes the final separation bearable.
Second, the particular affliction of dementia relates intriguingly to a metaphysical interpretation that I’ve come to see as broadly explanatory. Basically, we are all instantiations of the idea of us in every circumstance in which it would be logical for us to appear, given the constraints of physics and history; that is, if it were logically possible for you to be a millionaire movie star at this moment in time, an instance of you exists in that very role.
Our individual awareness of continuous time (another way of saying “our souls”) moves from one instance to the next with each passing moment, but according to the rules of reality. Your soul can’t, in other words, instantly leap into the version of you that’s a movie star, but you could take the steps — educational, social, economic — that lead you closer. This isn’t just a linear progression in a unique, circumscribed reality; it’s a transition of the very state of your being.
The experience of mental disorders, therefore, would be movement from one step to another with no logical coherence. To those of us living in a more ordered sequence of reality, that incoherence seems unreal.
So, it would be more correct, by this model, to say that the demented person is “over there,” rather than “in there” (lateral, rather than buried) although it remains no less possible to draw them back, perhaps so strongly and sustainedly as to effect what appears to be a miracle overcoming of biological logic.

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13 years ago

I wrote this after encountering Edwin, a man definately “over there” rather than “in there.” Loss He’s old, now, closer than ever to infinite eternity. His mind is gone, the brilliant thoughts that once sprang to life as written words confused and meaningless, just syllables uttered to a stranger who came into his life too late to appreciate him, and possibly learn from him. I sat across from in the back of Rescue 1, mesmerized, his eyes still burning with intensity as he uttered strange words, some in Spanish, some English. The words had a cadence when he spoke them, a rhythm and maybe some kind of message. His eyes bored into mine as he said over and over, “stink, stank stunk.” He would change into a foreign language and utter more words in the same way, earnest, almost desperate. At first I was amused, things like this don’t happen every day. As the ride progressed, sadness crept in. Sadness for the man, and what was lost, sadness for myself as I envisioned a similar fate and sadness for those close to him, who had experienced his intellect before Alzheimer’s Disease invaded his mind. This is a strange existence. Edwin Honig, poet and translator, has published ten books of poetry, eight books of translation, five books of criticism and fiction, three books of plays. He has taught at Harvard and Brown, where he started the Graduate Writing Program, and has received numerous awards from the Guggenheim Foundation, Mishkenot ShaAnanim, The National Endowment for the Arts, and the Academy and Institute of Arts and Letters. In 1986 he was knighted by the President of Portugal for his work in literary translation; and in 1996 by the King of Spain. He is Emeritus Professor at Brown University. An inclusive volume of Edwin… Read more »

13 years ago

Michael, thank you for your post.

13 years ago

Thanks for the thoughtful commentary on a topic that touches far more people that many realize.
Coming at the topic from another direction, i.e. the loved ones of the dementia sufferer, a disease that is probably the most dreadful disease of all on an emotional level for the families….a years long process where your loved one slowly becomes debilitated, becomes a stranger to you, does not recognize you, cannot express to you how they feel or what they need et al.
Yet for those of us who’ve experienced and witnessed the terrible grip dementia holds on a loved are also buoyed by one thing – the soul is still there and is touched by the familiarity of voices and feel. That person is still “in there” and on some level is comforted by our presence.

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