Grandma and Granddad had enjoyed my brother’s picture- perfect outdoor wedding, held on a scenic hilltop beneath clear blue skies and sunshine. They had smiled and been hugged all afternoon. I had pulled them away to leave before the celebration was over to avoid exhausting them, but when I got them home, it was clear that I had kept them out too long. Granddad and I struggled getting Grandma out of the car and into the house, and as soon as we closed the door behind us in the house, Grandma’s tirade began as she insisted on leaving the house. Initially, she had hollered for the police. “Poleeeeeeece! Heeeeeelp! They’re trying to kill me. Heeeeeeelp!” But in the final phase of her fit, she called out to her beloved Christ. Her call to Christ awakened my inner spirit, and I went to war.
“OUR Father, who art in heaven! HALLOWED be thy name! THY Kingdom come! THY will be done! On earth, as it is in heaven.” I began shouting the Lord’s Prayer on repeat, pacing in a circle through the house because this had worked for the past few years. Sometimes Grandma would settle down as soon as she recognized the familiar words. Other times I would pray and pace for close to an hour to calm her. The prayer also settled Granddad and gave me peace. Depending on the severity and time of Grandma’s storm, I would recite the prayer in steady moderate tones or yell it at the top of my lungs.
It never failed to calm Grandma—and anchor me too. When the Alzheimer’s-induced storms of wild violence or quiet disorientation raged, threatening to flatten anybody in their path, the familiar and reverent sound of the Lord’s Prayer saved the day.
But sometimes I feared I was losing my own mind. I was afraid I was looking and sounding like a religious fanatic. Even Granddad, a devout Christian and deacon in his church, seemed puzzled and worried at the sight and sound of my fervent prayer. I had never seen him go into war-like prayer. I had never seen anyone in my family, which is very religious, do this. Our religion had been Sunday service for the Christians, daily salats for the Muslims, and other rituals on occasion. But Grandma’s Alzheimer’s served as a storm that ripped away the pretense of religion for me. I was learning that prayer is more than a neat, tidy little tradition. Prayer is power. In the middle of the night when neither Granddad nor the overnight aide could manage Grandma, my recitation of the Lord’s Prayer prevailed.
On that fateful night after the wedding when Grandma’s whirlwind hit with more force than usual, the Lord’s Prayer won. Grandma eventually whimpered out.
“Come on, baby. Let’s get you to bed. You know I love you,” Granddad said tenderly, taking Grandma by the hand and leading her upstairs. I plopped down on a chair in the dining room and turned on the Gospel Music Channel to continue filling the house with the familiar sounds of unquestioning faith. Douglas Miller’s song, “My Soul Has Been Anchored in the Lord,” came on, and I almost broke down in tears. Now I knew what this song meant. Grandma’s soul had been anchored in the Lord. It was all those decades she’d committed to church worship. Her brain had been trained. When she could not understand the world around her, when she feared everyone around her, she called out to her Lord, and her calling stirred something in me—and others.
God had planted the Lord’s Prayer in my heart when Grandma and Granddad took me to church with them when I was a little girl, some forty years before I would need it for Grandma’s healing. Closer to the time I would need this prayer, and Bible stories and classic hymns, for Grandma’s healing, I was prompted by an experience in the hospital with Grandma. It happened when Grandma was scheduled for major surgery. There was a fifty-fifty chance she would survive it. On the eve of her surgery, I arrived at the hospital just in time. Grandma had been over-medicated and was so agitated she was fighting the staff. They were about to buckle thick leather strands around her wrists when I intervened. “Let me try something,” I insisted. I grabbed a Bible from the nightstand next to her bed and began reading it. Instinctively, I knew that even when she was out of her mind, something deep inside her knew she had to quiet down when the Bible was being read. She had learned that as a little girl, and taught it to me in my youth.
It worked. Grandma dozed off, and so did Granddad. That surgery seemed to trigger her dementia, which was followed about a year after the operation by an official diagnosis of Alzheimer’s. Occasionally violent and disoriented, more often quiet and vulnerable, Grandma became a test of my faith. She also became my Christ on the Cross, laying bare the frailty of our humanity and exposing the strength of our divinity. Jesus had come to teach unconditional love, and now it was making more sense to me. I loved Grandma despite her uncontrollable, sometimes violent behavior. I loved Granddad beyond his words and actions I believed to be wrong. They had taught me about religion and faith. This disease was teaching me about love.
Grandma had taught me much in my lifetime—how to cook, how to sew, how to love, and when to let go. Some of her old school lessons I turned upside down; and she never said so, but I think some of my responses to her lectures gave her something to think about. When I was in my late twenties she told me, “Men have to get a license to fish, or drive, or hunt. Make them get a license to be with you.” I responded, “Grandma, I am not a sport or a plaything.” She said I would learn. But in the end, she seemed to cheer my womanist ways, which her generation had not been afforded. When she spoke that old refrain, “Why buy the cow when you can get the milk free?” I shot back, “I am more than an animal, and I cannot be owned.” That was the kind of relationship she and I enjoyed. I deeply admired her lifelong marriage, and felt deeply disappointed when I could not achieve it myself. But I also considered that I have been afforded freedoms and experiences my grandmother had not.
In the end, my brother was sure she admired my independence. He thought she had in some ways lived vicariously through me. Once, when I took Grandma and Granddad to a dinner theater with a couple of my friends who had once been married but now enjoyed life together as close friends, Grandma joked, “Can we have what they have?” And I was glad she acknowledged that her granddaughter was living in a whole new world.
When Grandma’s Alzheimer’s ushered us into a new dimension, it was old familiar songs that helped ground us. Some summer nights, Grandma and I sat on their front porch and sang her favorite hymns: “At the Cross,” “Power in the Blood,” and “Keep Me Near the Cross,” to name a few.
I attended six weeks of workshops for Alzheimer’s caregivers at the Veterans Affairs hospital and found the meditation tools, pep talks, shared stories, and listings of available resources extremely helpful. Yet living with Alzheimer’s day-to-day I learned even more. I learned the value of patience. Learned what the Bible means when it says love is long-suffering. I learned a lot from Granddad’s determination to keep his wife home. When Grandma’s violent spells got so bad I worried she might push him down the stairs to his death, he still would not concede.
“I’d be lonesome without her,” he said sadly.
All the turmoil and the tests we were experiencing together struck down a lot of my old judgments about my grandparents, especially Granddad. I’d considered him verbally abusive. Had blamed his controlling behavior for Grandma’s mental deterioration. From the early stages of her dementia, I would confront him about his tone of voice with her. “That tone of voice rattles her,” I scolded. “It rattles me!” One Sunday morning, on our way to church, Granddad, seated up front in the passenger’s seat, ranted and raved bitterly. Grandma’s response from the back was, “Go ahead and get it all out. Cleanse yourself out.” In that moment, I considered that all those years I heard fussing, she’d heard a man crying like a baby.
She had been a nurse, and she knew the meaning of tears better than I did. Even with Alzheimer’s, Grandma experienced incredible moments of lucidity when she would drop me a pearl of wisdom. “Let the Lord fight your battles,” she said, seemingly out-the-blue in church one morning. We were standing, singing and clapping in praise, and she turned to me with that bit of peace. I looked at her and smiled. I was going through a divorce, which I had not discu
ssed with her. Another time, we were having dinner at their dining room table and she turned to me and said, “Ray-Ray, don’t let anybody intimidate you. I don’t care how much money they have, or what position they got on the job. You are just as good as anybody else.”
Within moments she was back in her private world, a sort of dazed look on her face. One time after work I was sitting on a stool in the kitchen talking to Granddad about a conflict at work. Granddad was stirring pots on the stove, and Grandma was sweeping the floor. I didn’t think she was paying attention to what I was saying until she turned to me and said, “Raise your skirt hem a little, just a little.” I said, “Huh?” And she added, “Your boss is a man, isn’t he? Raise the hem on your skirt a little.” Granddad and I burst out laughing. I had only known Grandma as the staunch deaconess who had chided me for wearing super-tight or see-through pants.
According to her doctor, Grandma’s brain cells were like a light switch with a faulty cord. Sometimes the connectors worked and she could understand and articulate. I treasured those rare moments.
In the end, I was grateful for what I had learned for Grandma and from her. I had learned the songs and prayers that would soothe her in her final years. I had learned from her life skills and insights that could comfort me the rest of my life. Most importantly, through this experience I learned the power of prayer. When I told a dear friend about this experience, she suggested that the prayers had also summoned angels into the house. She shared a similar experience she’d had repeating Hail Mary prayers over herself, feeling certain pains dissipate.
Grandma died in 2016 at ninety-seven years old. As my family recovered from this, I had time to reflect on the lessons. One Sunday morning I was on my way to pick up Granddad for church and heard the song, “My Soul Has Been Anchored in the Lord,” on the radio, and my heart smiled. During church that morning, a surprise guest emerged with his saxophone and played that song. The irony compelled further consideration. Anchored in the Lord? That’s got to mean more than being anchored in churchgoing. I considered that being anchored in the Lord is being anchored in Love because Jesus Christ’s great commission was to teach humanity to love and forgive. Thanks to what I had to give and what I received caring for Grandma, I am better anchored in love to survive life’s inevitable storms.
REVELATIONS
LORETTA ANNE WOODWARD VENEY
For more than thirty years, it was a tradition for our family to journey together to the Kennedy Center to see the Alvin Ailey American Dance company. We never missed a year. My mom, Doris, was always the organizer. She kept count of how many family members would be going, purchased the tickets months in advance, and even allowed those on a budget to save up to pay her back on the day of the performance. Mom’s favorite Ailey dance was “Revelations,” and we always bought tickets to attend the performance that featured that dance.
In addition to Mom and me, other family members attending included my grandmother Alberta, my aunt Diane, and my sister Renee, and four or five cousins always joined us when they were available. The informal rules required those attending to dress up for the event. We all looked forward to this annual family tradition, but none of us as much as my Mom. For her, seeing the Alvin Ailey dancers was nearly a religious experience.
“Revelations” is Alvin Ailey’s signature dance and has been since it premiered in 1960. It is performed to some of the most moving spirituals ever written, including “I’ve Been ’Buked and Scorned,” and “Wade in the Water.” The costumes worn by the dancers are spectacular and colorful, swirling as the dancers spin across the floor. The choreography and music are so mesmerizing; the nearly thirty-minute performance turns the concert hall into a church and your seat into a pew. My mom usually always cried during the dance, and she wasn’t alone, as many others in the audience were moved to tears as well, simply because of the pure beauty of the dance.
Over the three decades that our family saw Alvin Ailey each year, family attendance changed dramatically. My grandmother and Aunt Diane both died of colon cancer, my cousins were busy with careers and family, and my niece and sister were now living in California. Yet even after Mom was diagnosed with dementia in 2006, she and I continued to attend the Alvin Ailey performance. Mom enjoyed the shows as she always had. We just kept a closer eye on her in the crowd before and after the performance.
The evening that changed everything, I had purchased front row tickets for me and Mom to be as close to the stage as possible, hoping that would ensure Mom would recall her favorite performance. That evening I had helped Mom dress in her favorite burgundy suit with a green-and-burgundy-flowered blouse and her fancy black shoes. She looked beautiful. I thought sure she’d remember the Kennedy Center, but when we entered the huge concert hall, Mom asked, “We haven’t been here before, have we?” I assured her that we had been coming to this event for many years, and she said, “Oh.”
Almost as soon as the performance began, I knew bringing Mom had been a mistake. Even in the darkened hall I could see the blank stare in Mom’s eyes, and she asked, “Where are we?” She watched the dancers glide across the floor, but she clearly couldn’t make sense of what was happening. My stomach clenched, and I felt sick. Even though Mom looked confused, she seemed content enough, but I was worried that she’d eventually get frightened by the loud music and scream out that she wanted to go home. Thankfully she didn’t. As the performance progressed, Mom clapped at the end of each dance, but she still had no idea what was happening or where she was. In previous years, she was always on the edge of her seat watching every move, but this time she stared straight ahead with her hands folded in her lap.
In spite of all that, I was sure she’d “come alive” when “Revelations” unfolded onstage. But she didn’t. As the music started, she sat unmoving and unfazed. I whispered to her, “This is your favorite dance.” She said, “Uh huh,” clearly not understanding what I meant. I panicked. Why wasn’t she remembering her favorite dance of all time? I started to silently cry because I was having a revelation of my own. I never thought I’d see the day when Mom didn’t remember her favorite dance, yet that day had come. I was devastated and held her hand for the last ten minutes or so of “Revelations.” I cried even harder at the end of the dance because I knew I had seen it for the last time with Mom. I wondered when she’d eventually no longer recognize me.
When the performance was over, I was emotionally drained. I had spent almost $300 on an event that Mom had no idea we attended. As we always did, we headed to the restroom before heading home. We got in the long line, and Mom stared down at the program in her hands. She read the title out loud, “The Alvin Ailey Dancers.” Then she said, “You always used to take me to see this show, why don’t you take me anymore?” I tried to quietly explain that we had just seen the show, and then she shot back loudly, “That is my favorite dance troupe! I would KNOW if I had just seen it.” Other women in the restroom line started to fidget and look around awkwardly. Then Mom turned and ran from me, which she’d never done before! My leg was in a cast at the time and I couldn’t chase her, so a woman who had been in line ran to retrieve Mom for me. I felt a pain in my heart I’d never felt before. Life as we knew and loved it really had ended.
Mom had loved dance her entire life, and now she had no idea what it was or what it had meant to her. I held Mom by the shoulders and took her to a stairwell so we could be alone and explained to her that we had just seen the show and that she was holding the program in her hand. Sobbing, she said, “You spent all that money on these tickets, and I can’t even remember.” I told her it was okay, and that I loved her. She said she loved me too, and I hugged her as tightly as I could because I wanted to make it all better, just as she had done so many times for me when I was a child. We held hands and slowly walked back to the restroom to wait our turn.
Once back in line, I started to explain to her the dances that had been performed, and she listened intently. Her eyes locked on mine as I began to explain, and she nodded as if she
was actually following what I was saying. I had left out an important detail of one of the dances, and a woman behind us said, “Don’t forget to tell her about . . . ” And she filled in some of the blanks for me. I was relieved that someone understood what I was trying to do for Mom now that her brain no longer worked the way it used to. Standing in that restroom, I was devastated that this would be the last time my mother and I would share this cultural ritual, but I also felt loved, encouraged, and supported, by the other women in line in the ladies’ room, who understood what I was going through.
I haven’t been to see the Alvin Ailey dancers since that night. I don’t think I can return and watch “Revelations” again without my mom and not feel overwhelmed by the grief of what we have lost. I hope to be able to go again at some point, maybe with my granddaughter who is now six years old, so that she and I can start a new family tradition. I think Mom would be proud if I did that, but I know that emotionally it’s still a few years away for me. Dementia robs families of everything, starting with their joy and traditions, but it can’t take away the love shared between family members. The last thing Mom said to me when we got home that night was “Thank you for always taking care of me.” Since then we’ve discovered other new traditions to share, and it doesn’t matter if Mom only remembers the experience for just one second, or not at all. Every day we are still together is a revelation.
ALL THAT REMAINS
INTRODUCTION
The disease appears to take everything. Everything, that is, that we value most. Speech, although body language is the most precise indicator of what we feel and think. Our words are so often throbbing with mixed, muddled emotions, and varied intent. Memory, even as we know that our memories are subjective, unreliable; as often as not the manifestation of wish-fulfillment or denial. Alzheimer’s, the most common form of dementia, eventually will take it all—movement, thought, bodily functions. The brain, the god of intelligence, cognition, and wisdom, becomes a ruin, a desolate region, incapable of harvesting the kind of thoughts that affirm, measure, and define what we think of as life.
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