Dementia: A Living Death

Leonard Ewy

When my mother’s body dies, her obituary will accurately state her date of birth, but the reported date of her death will be a lie. The truth is that her soul has been dead for a long time.

Mom has dementia, probably Alzheimer’s disease. Her memory is lost. She awakens every day not only to a world of strangers but as a stranger to herself.

Her condition has set me to thinking in a very personal way about the nature of consciousness—the sum total of memory, self-awareness, free will, and personal identity that many people, especially the religious, call “the soul.” If I ever had any doubt that the human soul is nothing more than the interaction of chemicals and neuro-electrical impulses in our brains—processing our experiences and containing our memories—that doubt has been dispelled by the amyloid plaques and tiny bits of tangled protein that are insidiously corrupting those neural impulses and destroying my mother’s mind.

Every specific lost function, faded memory, and regression of her identity can be described in terms of neural blight in a specific physical portion of the brain. It is an entirely physical process that can be explained in naturalistic terms.

Yes, Mom’s soul is dying. I used to think of it as evaporating, but that isn’t the right metaphor. Evaporation changes a substance from one state to another—such as liquid water to water vapor. However, the water still exists as a gas. It is amorphous but very real. My mother’s soul, on the other hand, is fading away. It has gone, but it has not gone anywhere else or changed into something else.

The soul is but the mind’s awareness of its own identity through time—memory. In nineteenth-century essayist Ralph Waldo Emerson’s “Memory,” he wrote, “Memory is a primary and fundamental faculty, without which none other can work; . . . the thread on which the beads of man are strung which is necessary to moral action.” Moral action depends on knowledge of good and bad, joy and suffering, past and present, along with hope for the future and the awareness of the consequences of our past and present actions in that future.

Emerson, who himself lost his memory and succumbed to dementia late in life, said, “Without [memory] all life and thought were an unrelated succession.” That is now my mother’s life—an unrelated succession. She knows no history.

Enlightenment philosopher Rene Descartes (1596–1650) claimed that by pure reason alone, he could prove that the world consisted of two basic substances—matter and spirit. Matter, he said, is the physical world that includes our bodies, and spirit is the human mind or soul that can exist independently of the physical world. As hard as he tried, he never proved it.

The soul grows from nothing other than increasing complex neurological connections in the brain, created and sustained by the body’s metabolic functions. The mind’s experience of living the life of the biological body is the sole source of meaning and morality. That is the only thing I can know. I have no use for faith in anything beyond that. What I do treasure is experiencing life and sharing the life experiences of others. I treasure awareness and meaningfulness and memory—in other words, self-identity. “Nothing,” wrote Emerson; “is at last sacred but the integrity of your own mind.”

To live life fully in this moment is to have memories of the past and anticipation of the future. Without that, life and the soul wither in continual chronological isolation, trapped in the infinite and meaningless present. There is no enjoyment of past loves and accomplishments, no regrets for past mistakes—everything that makes life joyous, painful, ironic, and, ultimately, exquisite.

During the long dying of my mother’s soul, there was a phase when she was aware of her mental decline. I remember her terror upon discovering that fact and her anguish at not remembering the names of friends and loved ones and important events in her past. She once said, “I sometimes forget who I am. Sometimes I just disappear.”

When I have spoken with friends and acquaintances about how my mother’s Alzheimer’s has eroded her soul, some have chastised me for “writing her off” or denying her the continuation of her spirit. One day, as I looked at a pile of books and magazines I had accumulated while reading about Alzheimer’s and (later) gathering background for this essay, I noticed that the bookmarks I was using had been made by Mom. She had a tradition of buying me books I had requested as gifts, and she always made a unique bookmark for each one. Usually it was made with laminated pressed leaves and flowers. Sometimes she would write something on it as well. One simply states, “It gives me great joy that you love to read.” Mom’s soul, metaphorically at least, does live on in those bookmarks, in the person I have become, and in all of the people whose lives she has touched. That will have to be enough.

Leonard Ewy

Leonard Ewy is a thirty-year veteran of professional firefighting and emergency medical services.


When my mother’s body dies, her obituary will accurately state her date of birth, but the reported date of her death will be a lie. The truth is that her soul has been dead for a long time. Mom has dementia, probably Alzheimer’s disease. Her memory is lost. She awakens every day not only to …

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