His wife's early-onset Alzheimer's challenged them both, emotionally and spiritually, but acceptance bolstered by faith brought them comfort.
Posted in , Nov 26, 2018
For five years, I’d been dealing with the fears as best as I could: prayers, books, Scripture, retreats, talking to people. Now I was at the end of my rope. I had to do something, something different, even if it meant traveling halfway around the world. I wanted to meet the one person whose words had made the biggest difference. For both my wife and me.
Martha had been 50 years old when she got the diagnosis, devastating both of us: early-onset Alzheimer’s.
Martha had always been a force of nature, her energy level twice mine. “What’s next?” was her response to any challenge, whether it was raising our three children or working with me at the magazine I’d started or serving on the St. Petersburg city council. Then in 1997, something went wrong. There was a creeping listlessness about her, a blank look on her face, the inability to remember something I’d just asked her. She laughed less and less and was checking off fewer items on her to-do list.
At my urging, she made an appointment with a neurologist but walked out before even meeting with him. “I got tired of waiting” was all she would say. The second time around, I went with her and sat in the waiting room while she went through a battery of psychological and memory tests. The weeks crept by as we waited for the results. I already feared the worst.
Still, hearing the doctor say “Alzheimer’s” was a shock, even if it wasn’t a surprise.
“Are you sure?” I said, my question unconvincing even to me.
“There’s no mistake,” he said.
A disease that steals your memories, your personality, everything that makes you who you are…how were we going to get through the years ahead?
We talked to our Presbyterian minister, the man who’d married us and baptized our kids. His usual booming voice became hushed. Tears crept down his face—I’d never seen him cry. He had one suggestion: that we go on a retreat with the Catholic Sisters of Loretto in Kentucky. There was one nun in particular he felt we should talk to: Sister Elaine. “I’ve never met another person with Elaine’s gift for discernment,” he said.
So began our spiritual journey, one set out on in desperation. At the retreat house, Martha kept practicing responses to all the diagnostic questions that had stumped her. What was her birthday? What was today’s date? Who was president? Could she count backwards from 100 by sevens? As though, by memorizing the answers, she could reverse her fate. Her struggle broke my heart.
We told our youngest daughter first. She was a junior in high school and still living at home. She’d noticed the signs. Our other two were away at college, and we made a trip to see them both. The four of us cried together.
I kept focused on the internal work I needed to do to get through the day, what Sister Elaine had told me at the retreat: “Your main calling at this time is to trust that you belong to God and not to yourselves. And to deepen your love for God and between yourselves.”
I took over more and more of the household chores. Food shopping, getting breakfast ready, figuring out what to make for dinner before I headed to work. We managed okay for a while. Martha took an art class with her sister-in-law, painting watercolors. I carved out some dedicated prayer time, trying to do what Sister Elaine had said.
Then one day, Martha’s art teacher called me at the office. “Carlen, Martha walked out of the art class.” Where had she gone? She could be anywhere. I got in the elevator and stepped out into the lobby of my office building. Just in time to see Martha walk in the door.
After that I had to hire caregivers to watch over her when I wasn’t there. Our older children—now graduated from college and living on their own—came up with a plan to take over one weekend a month, giving me precious time off. They’d help Martha dress, take her out to eat, go for walks, see a movie, visit friends. Meanwhile I’d go off on a retreat, to vent and seek solitude.
I read all I could about how faith could heal, not just for Martha but for me. The small Tennessee town where I’d grown up saw its share of tent revivalists and faith healers. They were expert at two things—shaking fear into you and shaking money out of you. But the people I read now were different, credible. In particular I was drawn to Canon Jim Glennon, an Anglican priest from Australia and a spiritual healer. I read his book Your Healing Is Within You and listened to all his tapes.
One thing he suggested was turning physically away from fear, rotating your body 180 degrees from the fearful thoughts. I’d do it at my desk at work or at home. Sometimes I did it so much it actually made me dizzy. If only it banished my fear.
I got Jim’s number and called him in Australia. “I’m enjoying your book and tapes,” I told him. “But I’ve got to tell you I’m scared. Really scared.”
“We all get scared,” Jim replied. “That’s not the issue. The issue really is what we do with the fear.”
Martha and I had met back when we were in college. We connected again when I was coaching football and teaching at a high school in Atlanta and she’d just moved there to work at a different school. After helping her unload her things at her new apartment, I asked very casually—hoping against hope—if she wanted to come with me to scout a football game and then “grab something to eat.”
“No, thanks,” she said.
I did a double take.
“Okay…well, then, can I come by and see you after the game is over, Martha?”
“Sure, that’d be great.”
I got in my car and sat there for a minute, then went back to her apartment, knocked and asked, “Out of curiosity, if I’d asked you to the downtown Hyatt for dinner tonight, would you have gone with me?”
“Of course,” she said, her blue eyes dancing. I laughed. This was a woman who knew her mind.
“I just needed to know what the rules are,” I said. Martha and I got married 10 months later.
Now, five years since the diagnosis, that sharp woman I’d loved for 30 years, who knew exactly what she wanted, was gone. She resisted my help every step of the way. It took me forever to get her dressed in the mornings. On our evening walks, she literally dragged her heels. I would have to pull her, step by step. Is there any part of her left to love me or for me to love? I wondered.
I listened to Jim’s tapes over and over, but it wasn’t enough. I decided I needed to see him face-to-face. I called him, telling him I wanted to come to Australia. I arranged for the kids and caregivers to be with Martha. For a week. The longest we’d ever been apart.
I got off the plane in Sydney, picked up my bag and caught a taxi to the retreat center where Jim worked. Jim left a note saying he would meet me at 10 o’clock the next morning. I showered and fell fast asleep, jet-lagged.
I ate breakfast with a handful of guests and staff, then waited for Jim in a large drawing room. The door opened and he entered. I’d seen pictures of him, but they didn’t come close to conveying the presence that filled the room. We both sat down. “Why have you come?” Jim asked.
I thought I’d made it clear on the phone. I needed healing from the worry and pain. I fumbled for an answer. Jim said nothing. There was silence. And more silence. I found it hard to catch his eye. Maybe it’s his age, I thought. He was 82, of my parents’ generation. Finally he broke the silence, launching into a story about a couple whose young daughter had a severe case of scoliosis. Severe scoliosis can be disabling, causing heart and lung damage. The doctors said that her prospect for growing into adulthood was dismal.
They went to their pastor, looking for a healing ministry, and found nothing. They decided to study the New Testament, highlighting all of Jesus’ healings. They began to focus their prayers and thoughts on God’s gifts and promises rather than on their daughter’s problems. When Jim met the couple many years later, their daughter had grown into adulthood, her spine fully straightened.
I’ve already heard this story, I thought. In fact, I must have already heard it half a dozen times on his tapes. “Why ask for what you’ve got?” Jim would say, just as he said to me now. The healing that the girl’s family needed was there all along. Sure…but wasn’t there some fresh insight he could share? I waited all week. In the meanwhile, Jim was both spiritual guide and tour director. He showed me Sydney’s iconic opera house and its fabled surfing beaches. He arranged for me to meet with friends of his who’d been healed in their own right. He sat back and listened as they talked.
“If you’re fighting with your problems,” he emphasized, “you’re already on the losing side.” I was reminded of all my wrestling with Martha’s symptoms and the fear they engendered.
On my last day in Sydney, I was stirred awake early in the morning. I found myself praying the Lord’s Prayer: “Our Father, who art in heaven, hallowed be thy name…” Something jarred me. In my mind’s eye, I saw God step down from his throne in heaven and unfurl a tent over me. It covered my dear Martha, our children and me. But it was more than a tent. It was as though God was unfurling his name over us. We were protected; we were his.
Back home in St. Petersburg, things were different. Martha began to relax during our short evening walks, holding my hand. Changing her into her nightgown was no longer a wrestling match. An empathy that I thought she had lost for good returned. “I love you, Martha,” I told her. She looked in my eyes and said without hesitation, “I love you too.” Was it my change in attitude that had changed her? I couldn’t be sure, but I knew the fear had faded.
Martha stayed in our home for another six years and then entered a nursing home. I visited her there almost every day. I know people wondered: Why see her when she can’t walk, can’t talk, can’t feed herself, rarely recognized me? “Because Martha is still the woman I love and our children’s mother” would be my response.
I would sit beside her and take her hand, which I’d often find clenched into a fist. I’d envision Christ spreading his cloak over us. A stillness from somewhere beyond Martha and me would descend upon us. The tension in Martha’s body would relax. My heart and my mind too would settle. And our hands would soften and gentle within each other’s.
Martha died in 2014—16 years, nine months and one week after she was diagnosed. She was 66 years old. In the viewing room at the funeral home, I sat beside her one last time, held her hand as I had so often before and said the Lord’s Prayer—“hallowed be thy name.” Once more I sensed the tent that covered us. It had always been there. For Martha, the children and me.
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