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diggA joy that dementia could not crush
The frail and elderly have an inherent dignity no disease or disability can erase.
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.
Thank you for sharing your beautiful thoughts. The lord works in mysterious ways but he always has a plan.
The dignity of a person (someone, not something as “shell” or “shadow")is perpetually inalienable, though he be deprived of all trivial characteristics that does not necessarily distinguish man due to diseases..He will always possess God, as God possesses him; he will always possess his family, possessed by his love and example; he will always possess life, that which gives him the possibility to possess. In the last analysis, he will always possess that which we all share in common -the source of our dignity..That testimony tells us that he shares the very same rights we have, and that cause for the preservation of life in all stages is the fight your father fought with conviction despite his condition till the end. Congratulations to him. He can truly say, “I have fought the good fight, I have finished the race, and I have kept the faith”.
I spoke about the joy of Thomas Joseph Carroll again this morning at Mass. I was struck before Mass by the second reading of the Office of Readings for the feast of St Dominic which begins this way:
‘So noble in character, so ardently on fire with divine love was Dominic, that there can be no doubt that he was a chosen vessel of grace. Except when he was moved to pity and compassion he always displayed great firmness of mind. A joyous heart is reflected in the countenance, and Dominic revealed his tranquility of soul by the joyful kindliness of his look’.
And 10 August is the feast of another great saint renowned for his joy, St Laurence of Rome.
Thank you, Colleen. I’ve drawn the attention of others to your article and used it in my homily this morning.
There’s something particularly touching about this:
‘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.“‘
It brought a smile to my face too. And it brought to mind the Irish Gaelic for a gentleman, ‘fear uasal’, ‘a man of true nobility’.
And what a beautiful way for a man of deep Christian faith to die, with the word ‘joy’ on his lips. God rest the noble and joyful soul of Thomas Patrick Carroll Sr.
Thanks for sharing this wonderful real life article.
Thankyou Colleen for this beautiful testimony to life and JOY!
Beautiful and moving!
“putting people before possessions, principle before prestige and love of God and family before his own desires” - sounds like the perfect mission statement for one’s life. I’ll take it!
Thank you so much for this story.
It is so nice to find someone who understands.
I too have dementia and am still “positiv” 9 years after I was diagnosed.
The joy of the Lord is our strength, more so now than ever befor in my life.
That joy and what it outworks as in our lives is what makes us good about our selves and give self worth.
God says we are worth so we believe it.
Thank you so much for the article. I wasn’t with my father when he died but I can feel your father’s warmth through your writing.
Thank you so much for this article. My father died of dementia last year, and I have lost count of the number of people who have told me that I really lost him ‘years ago’. As far as I’m concerned, my father was totally recognisable and very much loved right up until he died. He certainly lost many of his abilities, but his essence remained.
I believe the “joy” that couldn’t be crushed was a manifestation of what we think of as the soul or spirit.
Thank you to Colleen Carroll Campbell for talking about her father’s struggle with dementia, which shows that even very ill and old people can make a significant contribution to human happiness or, more simply, to humanity. We need to be reminded of that, especially in an age where people’s worth tends to be measured solely by their performances or, more crassly, by their possessions.
Having lost both my mother and father to dementia and my mother-in-law to Alzheimer’s, I found your article truly on point. The dignity is always there and they deserve our utmost respect at all times. Thank you for your article.
Thanks for your comments on human dignity. We are grateful for your word pictures describing the life and times of your beloved father. He was blessed, and even now blesses all of us.
I was greatly moved and reassured by this perceptive piece, the more so as I am now in my 81st year and have contact with a few of my contemporaries, many of whom fear a dissolution into dementia or Alzheimer’s. I remember in my childhood some very old people were hidden behind curtains and never saw the light of day. We were somehow embarrassed into a mute silence, and it was a sign of our helplessness I suppose. So several visits to famine-torn Ethiopia taught me, long ago that the dignity of old age can be joyful and a sacramental sign of the divine love. Somewhere in the very heart of being, love still reaches out and strengthens us for the coming mystery of our own death.
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