Brad Anderson still remembers the night his wife forgot hail.
He was sitting on the front porch of their Lincoln home as a storm rolled in. It was around 9 p.m. LuAnne had gone to bed earlier. Brad wanted to watch the rain.
“It starts hailing and next thing I know I hear LuAnne running down the stairs hollering ‘there’s something hitting the house!’”
She poked her head out the front door.
“I said ‘it’s hailing,’ and she looked at me like ‘What?’”
Brad grabbed a stone and showed it to his wife.
“It’s rain that’s frozen hard,” he explained.
“She said, ‘That’s amazing. I’ve never seen that before. What’s it called again?’”
That’s where the recollection ends.
“You don’t think about that,” Brad says. “The world changes for these people. They don’t understand what’s happening.”
The world changed for Brad, too, in the years following LuAnne’s dementia diagnosis in 2010, just before her 55th birthday. He became her caregiver, and like many of the estimated 38 million family members caring for a loved one in the U.S., he struggled with guilt and stress.
He suffered from loneliness, helplessness and despair – feelings that Americans have become increasingly familiar with, so much so that the U.S. Surgeon General recently warned of an epidemic of loneliness and isolation.
Brad, now 67, believes his ability to diagnose and wrestle with his loneliness is owed to the very thing that LuAnne gradually lost her grasp of: words.
“I just started writing (poetry) out of need … ” he said. “I had a need to express some things that I didn’t know how else to express, and you know it was really a survival tactic.”
Brad and leaders in the medical and writing communities caution that his story isn’t a blanket prescription. But it does, they say, reinforce things we’ve long known: Creative expression can help in more ways than we might realize. A creative outlet like poetry can heal.
“Self expression in other words, it’s really important,” said Dr. Steven Wengel, professor of psychiatry and director of the geriatric psychiatry division at University of Nebraska Medical Center. “It’s really good for the soul and good for the brain, as it turns out.”
The first sign something was off came at a funeral service for one of LuAnne’s aunts in March 2009.
At the service, LuAnne crossed paths with a cousin she had known since childhood. “Who are you?” she asked him.
Brad was unsettled but didn’t dwell on it.
“I just kind of put it away and said, OK, one of those hiccups or something.”
It was easy to put it away in the moment. LuAnne and Brad had been together since getting married in 1975 when they were both 19 years old. Thirty-four years, three states and two children later, everything else seemed perfectly normal that day at the funeral.
CORRECTION: This article incorrectly stated the year Brad and LuAnne Anderson married. It has since been corrected.
But other oddities gradually emerged in LuAnne’s behavior: failures of memory, bouts of depression.
They thought it might be menopause.
LuAnne was still active in the dance community. She formed the nonprofit the Lincoln Irish Dancers in 1997 after teaching a class through the city. Dancing became such a central part of her life that Brad joined in.
“I realized if I didn’t start dancing, I wasn’t going to see her,” he said.
LuAnne also continued to excel at her job as the business manager for the University of Nebraska-Lincoln’s Department of Modern Languages and Literatures.
But the work grew harder, more confusing. LuAnne couldn’t read emails. She printed them and traced the words with her fingers. She struggled to recognize coworkers. At first, they put photos of themselves on her desk to help. She grew increasingly incapable of connecting the people in the photos with the faces in front of her. She tired easily and had a hard time understanding what people were saying to her, though her own speech was perfectly coherent.
LuAnne’s coworkers reached out to Brad in the fall of 2009. Something was wrong.
There is no single test to diagnose dementia, an illness affecting an estimated 10% of Americans 65 and older. It requires a process – interviews, lab tests, examination of medical history and sometimes a brain scan. LuAnne’s diagnosis came in May 2010: semantic dementia.
Brad was, he says, “pretty ignorant” at the time. He imagined LuAnne forgetting her car keys – routine lapses we all experience – with greater frequency.
“Well, it’s a lot more than that, and you learn pretty quickly,” he said. “Then you start thinking, ‘Well, what’s next?’”
It’s March 1 and Brad is set to record a poetry reading for “30 Poets in 30 Days,” a celebration of national poetry month in April organized by the Lincoln-based nonprofit Larksong Writers Place. The roster of readers includes poets from Nebraska and across the country.
Brad is reading a poem written as a letter to his daughter, Hannah Kahler. It is titled “Daughter.”
He reads from the iPad where he writes all his poems. His delivery is calm, quietly comfortable.
Brad’s poem sparked more phone calls and conversations than all the other readings, including the ones from nationally known poets, said Karen Shoemaker, a Lincoln-based author and founder of Larksong.
“It’s just such a beautiful poem,” she said.
For most of his life, Brad never wrote poetry. He didn’t really read it, either.
But around 2013 Karen Noel, then president of a local Alzheimer’s support group, asked Brad if he would speak during a fundraising event organized by United Way and CHAD Nebraska. Brad’s story might resonate because LuAnne was particularly young when she was diagnosed.
Brad said yes. He wrote down thoughts and memories to fold into his remarks, which were so well received that he continued speaking in the following years.
Brad kept writing out memories and observations – “thought bites,” he called them. His goal: Convey what it’s like to care for someone with dementia. Soon he saw how his “thought bites” fit together.
Poetry is often viewed as abstract, an art form studied in school, said Matt Mason, Nebraska state poet. Really, poetry is about expression.
“It’s a complicated thing and it’s very basic,” Mason said. “It’s about telling stories but it’s also … so useful for transmitting emotional elements that are otherwise hard to express.”
As Brad continued the fundraising talks, he decided to end with a poem, “The Devil Calls the Dance.” The sniffling started in the audience by the second stanza.
“It kind of jolted me. … I almost stuttered because I wasn’t thinking about what it sounded like to somebody else. I was too busy processing and putting my thoughts out there and not thinking about how it was received. Obviously it had an emotional impact.”
Mason said the poem reflects a man struggling to make sense of trying circumstances. It’s a vulnerability Mason said he is familiar with, having turned to poetry to decipher difficult chapters in his own life.
“You can see (Brad) figuring things out as the poem goes on,” he said.
For a few years LuAnne was largely self-sufficient. She could drive, having passed required annual driving screenings. She was still leading local dances. Initially she was excited about the idea of being retired.
“I said OK, I’ll take that as a win,” Brad remembered.
Wins became fewer.
LuAnne lost her driver’s license after failing her third annual screening.
Brad hired caregivers to come to their home for a few hours each day while he worked. He set up cameras so he could monitor her in the morning before they arrived.
Social activities stopped. Friends drifted away. It became Brad, LuAnne and a few immediate family members who helped when they could.
“You try and be positive and make the most of each day that you can,” he said. “You know you’re losing that person, and you have to remember that every single day might be the best day that person will ever have.”
By 2014, life was unraveling. One day Brad noticed LuAnne got out of bed earlier than normal. She left the house and headed across the street.
“Not good,” Brad thought.
He rushed home from work.
LuAnne had boarded a city bus headed downtown to, as Brad later learned, go to the bank to get money to buy a car. She wanted her independence back. She brought her iPad, which allowed Brad to track and intercept her.
Less than a week later, LuAnne fell into a manic state. She was throwing furniture in their home, yelling.
They got her to a mental health holding facility at Bryan Medical Center. That same day, LuAnne referenced running in front of a moving vehicle to end her life. She couldn’t be left alone. After 30 days of trying to recalibrate her medications in the hospital, it became clear: LuAnne woulnd’t be coming home.
The decision in the summer of 2014 to place LuAnne in a care center weighed heavily on Brad, who was already wracked with guilt. He consulted his daughter Hannah and LuAnne’s brother Tim Shaw, an attorney and disability rights advocate.
They picked Douglas County Health Center in Omaha, which specialized in caring for people with memory loss.
Shortly after she was placed in September 2014, Brad became incredibly ill. He realized he hadn’t been sick in years – as if his body hadn’t allowed it while he cared for LuAnne.
“I didn’t realize how much stress I was under until after we finally did have her placed and I realized that she was cared for,” he said.
Debilitating stress and loneliness have emerged as public health concerns in recent years.
A 2022 survey conducted for the American Physiological Association found that 27% of adults said that most days they were so stressed that they couldn’t function.
Surveys have found that between one-third and half of U.S. adults have experienced loneliness.
In May U.S. Surgeon General Vivek Murthy released an advisory titled “Our Epidemic of Loneliness and Isolation.” The report cited research that found loneliness and social isolation increase the risk for premature death by 26% and 29%.
Writing initially was an outlet for Brad – a way to wrestle with festering feelings.
UNMC’s Wengel said research shows that when we engage with our emotions through artistic expression, it forces us to use a different part of the brain. This can unlock a deeper understanding of emotions that may otherwise rattle around in our heads.
“So when you put a name on feelings, it helps you,” he said. “It doesn’t make them go away, but it helps you deal with it.”
For Brad, writing also opened the door to a community.
He started attending open mics and got involved with multiple writing groups, including Larksong, which Shoemaker formed in 2020. Brad was there from the beginning.
“There’s a myth about writers … often they’re alone, churning out best sellers,” Shoemaker said. “I think that’s a huge myth. I think people need one another.”
LuAnne died on Jan. 20, 2017. She was 61.
He struggles to admit it, but Brad felt relieved when she passed. Her last year had been one of decline – death in slow motion. She was in a wheelchair and could only muster four words: “oh gosh” and “then again.”
She had forgotten Brad’s name some time earlier, though she would still smile and laugh when he entered the room. Brad believes their love endured.
“I don’t know what part of her was there and what part wasn’t, but there was enough that I think the emotional connection was there.”
About a month after her death, family and friends held a memorial service. LuAnne always said she wanted a wake, Brad recalled. The family had no idea what that entailed, so they improvised. There was music. Dancing.
At a certain point, Brad took a break from writing. It felt too painful.
He eventually picked it back up, after realizing he could write about more than dementia and the accompanying feelings, though he hasn’t shut the door on those topics.
“If you loved that person how could you not have that grief and have those feelings? I earned those and that’s fine,” he said. “I wouldn’t want them to go away. I think that would be worse.”
Brad is retired now, and spends his time with grandchildren and writing. He hopes that sharing his story might help someone else.
“You have to find your way through it,” he said. “Writing, I felt, was a very helpful way to do that.”
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