Our Lives Together By Carrie Lewis, UNC-Chapel Hill

Early on a Saturday morning in September, seventy-eight year old Kay Lewis expertly rattled off a long series of foreign words ending in “azapins,” “ocides,” “forims,” and “epozils.” Three minutes later, she moved on from her husband’s morning medications to his nightly ones. Kay became fluent in this second language a years ago. While a few months earlier, figuring out how to use the voicemail function on her cell phone seemed impossible, today she finished her expert pharmaceutical recitation with ease and began sorting through the sea of medications. She cut some of the white and pink pills in half and counted out the others before placing them each into a slot with the appropriate time and day of the week.

She did not foresee herself becoming an expert on dosages for all of these medicines, or any of the other skills her life now requires, for that matter. But, this is their life together. Ironically, one of the things that first attracted her to her future husband, Johnny, was how many new things she learned from him. And anyone can infer from the book-covered walls of her ranch-style home in Rocky Mount, North Carolina that Kay is a learner. However, ten years ago, she had no idea what her relationship with her husband was going to teach her, or how hard it would be.

They met when he was finishing his last year of Duke Divinity School while pastoring a small church where Kay’s brother attended. One night, Kay was asked to sing at a service, and it was there that Johnny heard her sing for the first time. As their friendship developed, her eyes began to be opened to more things. She could understand concepts about God and life that she had not been able to before. Even though she had had other offers of marriage, Johnny’s insight, boldness, and religious zeal made him stand out from the rest. She was completely enamored by him, and it didn’t take long for her to realize he was the man she wanted to marry.

Her deep respect and admiration, although in many ways good, also had some negative consequences. “I was just awed by him I think and so much in love that I just wanted to make him happy,” she explained. “So Johnny was the head of the house, the leader, and I just followed along and just kind of lost myself in that…It was more like his family instead of it being ours.” Despite this, they made a good life together. Johnny would get out breakfast at the parsonage and lead his family in devotions in the morning, then help out with baseball in the afternoons. He was loved by his family and by his community.

Around nine years ago, Johnny’s sharp mind and respected character began to shift, which made the lack of partnership in Johnny and Kay’s marriage even more problematic. Kay began noticing irrational behaviors. He would pull off the side of the road if someone was behind them on the highway, or move her out of the way at the grocery store if someone was near them. In general, he was less capable of processing things, became more anxious, and his world was increasingly self-focused.

After a series of medical problems, hospital stays, and surgeries, his doctor encouraged him to see a psychiatrist and take some tests with a geriatric doctor. Through this, they eventually diagnosed him with Alzheimer’s Disease.

After his disease advanced more, Johnny and Kay decided they needed to move away from their South Carolina community of thirty years to be closer to their sons. The move, among most everyday activities, was difficult because Johnny still had the mindset that he was the head of the household. But at the same time, he was not in a state that would allow him to lead well. He was suspicious of Kay, double-checking things she said and taking over things she did. His lack of cooperation when deciding what to pack and even what house to buy forced her into a difficult balancing act of respecting him while making logical decisions about what was best.

This was also a season of loneliness for Kay because even though she had family near, she lost many of her friends in the move while continuing to lose her husband. “It was just like being by yourself,” she shared, “and it didn’t have anything to do with something that could be controlled.”

Things have only gotten worse in that regard.

Now there is no talking in Johnny and Kay’s marriage, except when he voices anxieties about how he feels physically or about fears of people breaking into the house and car. Kay said that there is nothing left that resembles a real relationship, even just talking about a television show. “It’s like I have to draw on what has been,” she explained solemnly. She also feels the tension between needing her family for support and wanting to protect her sons’ love and respect for their father, which can make feelings of loneliness even harder.

Kay used to feel resentful toward Johnny because of all these things. She was doing everything she could to care for him, but it was never enough to make him feel better. It was frustrating to exert so much energy and get nothing, not even a conversation, in return.

Amazingly, she doesn’t feel this anger anymore. She believes God has taken away a lot of frustration and given her the strength to care for him the best she can. One thing she said also helped was her volunteer gardening. She pulls, digs, waters, and hauls at a local community center early every morning before her husband wakes up. It’s hot, she sweats, and her knees sometimes ask her to stop, but she says that is has been so good. She started doing it to fill a need and to make something beautiful for the community, but it’s therapeutic for her and keeps her steady. Somehow hard physical labor five or six days a week gives her more energy.

And because taking care of him is a constant job, she needs it. She comes home from gardening and landscaping around noon to give Johnny his medicine, make lunch, and help him with his basic hygiene needs. Even things as small as finding the toilet paper or the handle to flush it. In the afternoons, Kay helps him find his clothes and get dressed before they go driving in their small white pickup, which takes up to five hours a day. They listen to music, and he points out pretty trees and rosebushes. He likes to go to the same places, and sometimes they only make it to the kitchen before Johnny asks if they can go back out driving again; so that is what they do. “I know he’s here a lot, and I expect it feels good to get out, so I’m glad to go for him….but it isn’t what I would do,” she added with a chuckle.

Every night they watch television, eat dinner, and she reads to him while he falls asleep. Scattered throughout are countless questions about their physical safety, whose house they are in, and if people are coming over. The questions are followed by trips around the house to check whether or not the doors are locked. “I want him to move beyond the struggles. [I answer the questions and check the doors] because I want him to be the best he can be,” she explained. “I want him released from all these anxieties. I want him to be at peace. I want him to know that love surrounds him and that he is safe. He doesn’t’ need to try to protect himself or try to see enough or hear enough or put enough locks on the doors. I just don’t want him to feel like he needs to do that. That he’s safe.”

Even though this is far from the life she expected, she is content. Kay believes there is a plan in all of this and that there is untold joy in going to bed every night knowing that she partnered with God that day by honoring and serving other people. Even if Johnny doesn’t understand and sometimes sees her as the enemy, she pours out love.

“I think that as long as there’s life, we need to see it and embrace it and let [God] do what he wants to do. There’s joy in doing what’s right.”

Anyone that knows Kay can see how amidst hardships, loneliness and exhaustion, this joy radiates from her. It’s not that in every moment she is happy, but that in every moment, she has a deep peace and contentment that overflows into selfless love and care for her husband. She accepts that this is her life, and that this is their life together now.

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Carrie Lewis

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