A joy that dementia could not crush

When Ronald Reagan died in 2004 after a decade-long battle with Alzheimer's, pundits across America repeated the conventional wisdom about dementia. The former president was only a "shell" and "shadow" of himself in his later years, they said, and his physical passing was a mere formality, the symbolic loss of a man who had vanished long ago.

Those comments always bothered me, but I never fully understood why until two weeks ago, when I lost my father, Thomas Patrick Carroll Sr, to the same disease.

Dad's diagnosis came on a bleak January afternoon in 1996 during my last semester of college. In the years that followed, I watched a brilliant man once heralded for his articulate defence of mentally disabled children become disabled himself. I grieved as the wordsmith father who had rejoiced at every article I ever wrote struggled to read my name or sign his own. A paragon of strength in earlier years, Dad gradually grew weak and dependent before my eyes.

Yet Dad had joy — immense, contagious joy. Everyone he met noticed it — from the hairdresser he serenaded with Irish songs during their appointments to the adult day-care aides who marvelled at his good humour and quick wit.

Even in his last years, after his condition forced my mother to move him to a nursing home, Dad provoked smiles with courtly bows and tips of an imaginary hat to the elderly nuns who stared at him from their wheelchairs. "Great to see you," he'd say, as he sauntered the halls. "You're the best."

Led into a room full of dementia patients, he would find his way to the corner where the most distressed one among them was muttering incoherently. Plopping down next to her, he would whisper, "We're all in God's hands" and stroke her arm until she grew quiet and calm. "I like to take care of people," he would tell me, when he could remember what he had just done.

Alzheimer's eventually robbed my father of everything a disease can take from a man. But it could not steal his joy. Cultivated through a lifetime of putting people before possessions, principle before prestige and love of God and family before his own desires, Dad's joy seemed to spring from some inexhaustible source, from a place the plaques and tangles of Alzheimer's could not reach.

Dad's joy consoled my mother as she lovingly and heroically poured out her life to care for him for more than a dozen years. And it solidified my belief in the truths Dad had taught me as a girl: that the human person has an inherent dignity no disease or disability can erase and that life is a gift to be cherished, even in its most fragile forms.

Although long anticipated, Dad's death came to my mother, brother and me not as a relief but as a blow, the heartbreaking loss of a man who was for us a living, breathing embodiment of unconditional love. As I watched Dad struggle for the strength to kiss my mom once more before he died, nothing about him looked like a shell or a shadow. He looked luminous, radiant with a goodness that shone all the more brightly because all else had been stripped away.

A few days before he died, I found Dad sitting in his wheelchair, looking unusually alert. His blue eyes brimmed with tears when he spotted me and his arms opened wide. He smiled and said, simply, "Joy!" It was the last word I recall my father speaking to me, a fitting farewell from a man who lived joy with his every breath, to his very last.

Colleen Carroll Campbell is an author, television and radio host and St. Louis-based fellow at the Ethics and Public Policy Center. Her website is www.colleen-campbell.com. The above article first appeared in the St. Louis Post-Dispatch.


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