Dementia and the language of the soul

By Martin L. Smith

How many years do I have left with a clear mind?—a question I asked myself a few days ago after I had phoned to check how my godmother is doing in her nursing home in Toronto. Her Alzheimer’s has been progressing over 15 years. One of the most poignant losses is the total eclipse of her religious awareness. She had been a faithful Christian all her life, indeed, she was the only religious woman my father knew, which is why I ended up with a godmother who lived 3,000 miles away. Rising to the challenge, she nurtured my faith wonderfully well from a distance, with books, letters and prayers. And now the disease has taken away every conscious vestige of the faith that had sustained her. It could happen to me. It could happen to you. It may have already happened to someone you love. As life expectancy grows, more of us will live under its cloud than ever before.

I have been thinking how important it is not to lose the language of soul in our faith today. You hardly ever hear about our souls. The concept is commonly regarded as antiquated, tied up with an obsolete notion that our bodies are inhabited by a kind of entity that floats away to heaven when we die. But if that concept is misleading, it doesn’t mean that we should stop referring to soul. To talk of our souls is to point to an ineradicable core to our being. In the ‘innermost person’ our lives are ‘hidden with Christ in God’ (Col. 3:4) in a bond that no loss of brain function, however ravaging, can diminish. Far from being obsolete, deep faith in the soul is a vital assertion of our absolute human equality in God. When it comes to our souls, we are all equals and remain so. At the core level of soul, the man or woman who has succumbed to complete dementia is equal in dignity and worth and spiritual standing to the brother and sister whose brains (so far) are in brilliant form.

If we let the language of soul fall into disuse, a malign sense of inequality can creep in. Just because a woman or man has lost the ability to remember or recognize those she or he once knew, we might be tempted to think of them as blighted lives best put out of sight, out of mind. We may find ourselves tolerating horrible clichés about people ‘becoming vegetables.’ We may look down pityingly on those whose brain functioning is compromised as our inferiors. But the souls that God holds in life are not diminished, even though the brain is injured. In God their suffering, and the eclipse, partial or total, of awareness, diminishes them as persons not one iota. Rather they might be the special objects of God’s tender and compassionate regard. My godmother refuses the offer of Holy Communion as something incomprehensible to her, even irritating. But her soul’s union with Christ cemented by decades as a communicant is as real and solid as it ever was, isn’t it, though accessible to us only by the second sight of empathic faith?

Where the language of soul has not been lost, those with dementia are cherished within the community, not abandoned. For years I used regularly to celebrate the Eucharist in convents and the nursing homes they ran, and learned the ropes of including those with dementia in the act of worship. I remember a mother superior looking at me with a searching smile to see how I would react when a rumpled but feisty old nun would start to scream obscenities as I gave her communion, whether I could muster both humor and respect in this incongruity. And I remember one contemplative convent where one of the oldest sisters would frequently interject into the services an amazingly penetrating rendition of “Hickory, dickory, dock, the mouse ran up the clock.” I got the impression, from the equanimity with which this was woven into the service, that her sisters believed that God lovingly accepted her song as her way of worshipping, a language that God had no difficulty in decoding.

The thought that I myself may enter dementia eventually is not new to me. For some years I served as a volunteer subject in Alzheimer’s research in a Boston hospital, so I am aware that dementia is not something that just happens to someone else. Tests revealed a brain in fine form, but if dementia is my destiny I hope I will be surrounded by people who have faith in the reality of my soul, and acknowledge that within the confusion and fog is that intact and abundant inner man whose life—here’s that priceless verse again from Colossians—is “hidden with Christ in God.”

Martin L. Smith is a well-known spiritual writer and priest. He is the senior associate rector at St. Columba’s, D.C.

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