Dementia claimed his wife, writing helped him survive

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.

"...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 frozen rain, he explained.

"She said, 'That's amazing. I've never seen that before. What's it called again?'"

That's where the recollection ends.

"The world changes for these people," Brad says. "They don't understand what's happening."

The world changed for Brad, too, in the years following LuAnne's 2010 dementia diagnosis, just before her 55th birthday. He became her caregiver. Like many of the roughly 38 million U.S. family members caring for a loved one, he struggled with guilt and stress.

He suffered from loneliness and helplessness – feelings so endangering Americans that the U.S. surgeon general recently warned of an epidemic of loneliness and isolation.

Brad, now 67, believes his ability to wrestle 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... you know it was really a survival tactic."

Brad and others 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. An outlet like poetry can heal.

"Self expression in other words, it's really important," said Dr. Steven Wengle, director of the geriatric psychiatry division at University of Nebraska Medical Center. "It's really good for the soul and good for the brain."

***

The first sign something was off came at a funeral service in March 2009.

LuAnne saw a cousin she had known since childhood. "Who are you?" she asked. It unsettled Brad.

"I just kind of put it away and said, OK, one of those hiccups or something."

It was easy to put away in the moment. LuAnne and Brad married in 1975 when they were both 19. Thirty-four years, three states and two children later, life seemed otherwise normal.

But other oddities gradually emerged in LuAnne's behavior: failures of memory, bouts of depression.

They thought it might be menopause.

LuAnne, who formed the nonprofit Lincoln Irish Dancers in 1997, was still active in the dance community. Brad joined in some time ago.

"I realized if I didn't start dancing, I wasn't going to see her," he said.

LuAnne also continued working as the business manager for the University of Nebraska-Lincoln's Department of Modern Languages and Literatures.

But the work grew more confusing. She couldn't read emails. She printed them and traced the words with her fingers. She struggled to recognize coworkers. She tired easily and couldn't follow what people were saying at times, though her own speech was perfectly coherent.

LuAnne's coworkers contacted Brad in the fall of 2009. Something was wrong.

There is no single test to diagnose dementia, an illness affecting roughly 10% of Americans 65 and older. It's a process – interviews, lab tests, sometimes a brain scan. LuAnne's diagnosis came in May 2010: semantic dementia.

***

It's spring and Brad is set to record a poetry reading for "30 Poets in 30 Days," a celebration of National Poetry Month 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."

His delivery is calm, quietly comfortable. It sparked more phone calls and conversations than all the readings, including ones from nationally known poets, said Karen Shoemaker, founder of Larksong.

For most of his life, Brad never wrote or read poetry.

But around 2013 Karen Noel, then president of a local Alzheimer's support group, asked Brad if he would speak during a fundraising event.

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 observations – "thought bites," he called them. The 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, said Matt Mason, Nebraska state poet. Really, it's 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. Obviously it had an emotional impact."

***

For a few years LuAnne was largely self-sufficient.

But she lost her driver's license after failing her third annual screening.

Brad hired caregivers to come to their home while he worked. He set up cameras so he could monitor her before they arrived.

Social activities stopped. Friends drifted. It became Brad, LuAnne and a few family members.

"You try and be positive," 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," he thought.

LuAnne had boarded a city bus. She wanted to go to the bank, then buy a car. She wanted her independence back.

Less than a week later, LuAnne fell into a manic state. She threw furniture in their home. She screamed.

They got LuAnne to a mental health holding facility at Bryan Medical Center. That day she openly contemplated suicide. After 30 days of trying to recalibrate her medications in the hospital, it became clear: LuAnne wouldn't be coming home.

The family picked Douglas County Health Center in Omaha, which specializes in caring for people with memory loss.

Shortly after she was placed in September 2014, Brad became ill. He realized he hadn't been sick in years – as if his body hadn't allowed it.

"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 serious public health concerns.

A 2022 American Psychological Association survey found that 27% of adults said that most days they were so stressed they couldn't function.

Between one-third and half of U.S. adults have experienced loneliness, according to surveys.

In May U.S. Surgeon General Vivek Murthy released an advisory titled "Our Epidemic of Loneliness and Isolation." It 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.

UNMC's Wengle said research shows that when we engage with our emotions through artistic expression, it forces us to use a different part of the brain.

"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 joined 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 people need one another."

***

LuAnne died on Jan. 20, 2017. She was 61.

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, though she would still laugh when he entered the room.

"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."

LuAnne always said she wanted a wake. Brad and the family improvised.

There was music. Dancing.

Brad took a break from writing. It felt too painful.

He then 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 it.

"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.

Brad is retired now. He 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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