Thursday, Jul. 03 2008

A father's lesson: Joy and dignity amid dementia
By Colleen Carroll Campbell

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

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 defense 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 marveled at his good humor 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