For 17 years, Carlen Maddux held the hand of his wife, Martha, as she descended into oblivion.
In the beginning, he held the hand of a woman, walking around chatting with former classmates at her 30th high school reunion where whispers of "What's wrong with Martha?" trailed behind her.
In the end, he held the hand of the shell of a woman totally withdrawn from the world as she lay curled up in her nursing home bed.
His lifelong companion, the mother of his three children, died June 30, 2014, almost two decades after she had been diagnosed with early-onset Alzheimer's disease.
In 1997, the Maddux family was living a normal, happy life in St. Petersburg. Carlen was a journalist, who for 26 years produced the Maddux Report, a business magazine covering the Tampa Bay area. Before that, he was a business writer for the then St. Petersburg Times.
His civic-minded wife of 25 years, Martha, had just turned 50. A teacher at St. Petersburg High, she chaired the Juvenile Welfare Board, a county agency that dealt with children and family issues. She had been elected to the St. Petersburg City Council that voted to build Tropicana Field.
Two of their three children, David and Rachel, were away at college. Their youngest, Kathryn, was 16, a junior at St. Petersburg High.
And then, the family started noticing changes in their spirited, energetic mom. She was listless. She was forgetful. Her competitive spirit drained. She didn't talk or laugh as much. They urged her to get checked out.
Martha finally agreed to the doctors and tests that would lead to her diagnosis. The family was confused and crestfallen.
In the beginning, Carlen Maddux read everything he could get his hands on about the disease. When it was suspected that aluminum was the cause, he threw out all the aluminum pans in the house. He checked deodorants and other personal and household products for traces of aluminum.
They tried fringe medical alternative healing methods.
But in the back of Maddux's mind, he knew there was no hope for a cure.
That was when he started a spiritual journey in which he turned everything over to God. His wife would not be healed along the way, but he would.
He kept a journal of his days as his wife's caregiver and his search for the meaning of life and its cruelties.
Maddux talked to a local Presbyterian minister, Lacy Harwell, who was a friend of the family.
At Harwell's urging, he and Martha went to Bardstown, Ky., to talk to Sister Elaine Prevallet, the spiritual director of the Sisters of Loretto retreat center. He learned to meditate with the Trappist monks at nearby Gethsemani, one of the oldest monasteries in the United States.
Maddux would travel to Sydney, Australia, in search of spiritual healing for his wife.
He turned all of his journal entries and memories into a book, A Path Revealed: How Hope, Love and Joy Found Us in a Maze Called Alzheimer's, which was published in September. It is not a guide book or an FAQ on Alzheimer's. "There are enough of those," Maddux said.
It is, instead, the story of a man who learned to turn over to a higher power that which he cannot control.
We sat down with Maddux to ask him some questions about his journey.
What is the one thing you'd like to tell caregivers of Alzheimer's patients?
Don't succumb to the tyranny of suffering. You have got to learn to be gentle with yourself. If you can't do that, you can't take care of the person you love.
What was the most difficult part of the 17 years?
There were four: the diagnosis, taking her car keys away, her first seizure and putting her into a nursing home.
How did you reconcile being a fact-seeking journalist having to deal with a disease about which there are few facts to be sought out?
I realized I could not be dispassionate; I was not an objective observer. I had to realize I'm not always going to get the answers. That's where the whole idea of God comes in. I'm not going to get an answer. I went from not feeling loved to feeling loved by God.
Along the way, you were told "If you are fighting with your problems, you are already on the losing side." How did that change your perspective?
If you ignore the problem, you lose; if you fight with it, you lose. You have to allow yourself to be drawn into God's presence. God is the one who heals. You don't heal yourself.
When did anger turn to acceptance?
When I was at Gethsemani, I was mad at God. I would have knock-down, drag-out sessions. I would go outside the cabin yelling, "Why?" But God needs an avenue in which to work. We have to allow this power beyond us to move in the way it can.
Do you believe Alzheimer's sufferers should be sheltered or brought out into the world?
I believe they should be brought out into the world as much as possible. A woman had business cards made up that said, "Thank you for being kind to my mother. She has Alzheimer's." She would hand them out if her mother would inappropriately hug or touch others.
Do you see an end to Alzheimer's?
They keep looking for a cure. The two biggest fears of baby boomers are cancer and Alzheimer's. I believe there is an emotional component to the physical one. Neuroses, obsessions, long-embedded resentment that we both ignored our whole lives are stress drivers. I think that has something to do with it.
Contact Patti Ewald at [email protected]