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'I died. I died,' she said. But also, 'I love life.' A story of dementia and humanity

Rebecca Barnard was in the early stages of dementia when her husband, a fellow software developer with a Ph.D. in philosophy, dragged her to a philosophy conference in Baltimore.

Self-portrait of Rebecca Barnard before her dementia progressed.
Self-portrait of Rebecca Barnard before her dementia progressed.Read morePhoto courtesy of family

Rebecca Barnard was in the early stages of dementia when her husband, a fellow software developer with a Ph.D. in philosophy, dragged her to a philosophy conference in Baltimore.

They heard a young philosopher muse about ethical questions that arise late in dementia. Should the wishes a patient had when her brain was working properly be honored "after she ceases to be a person?" the speaker asked.

Beck, as Barnard was known, turned to her husband and whispered, "She doesn't know what she's talking about."

Her husband, Richard Rubin, agreed.

He came to the University of Pennsylvania recently to talk about how the essence of personhood - love, humor, grief, the need to connect - survived deep into his wife's destruction. He could see it in an eye roll when her father told her to "be a good girl" and hear it in garbled words that managed to convey concern for her beloved cat.

His presentation, "I Am Life: Humanity in Advanced Dementia," included his and Beck's photos plus grim video and audio. He hoped it would help doctors, who rarely see such patients once they've gone to assisted living, and other caregivers better understand the dementia journey.

Jason Karlawish, codirector of the Penn Memory Center, met Rubin at a 2013 conference on dementia at Washington University, where Rubin, now 68, got his Ph.D. in 2000. While many could tell a similar tale of the deadly, tragic progression of dementia, Karlawish said he brought Rubin to Penn because he was impressed by the St. Louis man's ability to describe his wife's illness while raising broader issues. The question of how the families of five million dementia victims can live with the disease at a time when there is no effective treatment is a theme of Karlawish's work.

Barnard was Rubin's second wife. They got together in 1997, the year of his divorce, and married four years later. She made her living with computers, but fine-art photography was her passion. The photos that Rubin displayed revealed her fascination with light and shape in both the natural world and man-made objects. "When I'm with my camera, it's as if the world is giving me all these gifts," she told him.

She was laid off from her job in 2002 and never found another. He wondered whether she was depressed. He noticed other symptoms in 2005. She repeated questions. She got frighteningly lost on some trips away from home. Her spatial skills were faltering. She parked the car at odd angles.

He finally got her to a memory center near their home on April 6, 2006. The doctor concluded she had "severe cognitive loss of undetermined origin." It was her 53rd birthday.

Four months later, the doctor went further. She had dementia, possibly caused by Alzheimer's or Lewy body disease. "My life is over," Beck said.

The couple went to an Alzheimer's Association session on dementia. "The nurse running this program made a point of emphasizing that Alzheimer's is a fatal disease for which there is no cure," Rubin said. Beck screamed during the car ride home.

There were moments of tenderness. The couple saw a wedding party rehearsing in the Missouri Botanical Garden across the street from their house.

"I'm not going to be good for you much longer," Beck said.

"You want a divorce?" Rubin asked.

"No, do you?"

"Beck, I'm in this for the long haul," he said.

She took his arm and pointed at the rehearsal.

"This," she said, "is more romantic than anything going on over there."

By 2008, she had no idea where the midpoint between two points was. She needed help dressing and bathing and using the toilet. She was an emotional wreck.

"I have to get out of here," she bellowed as she wandered from room to room. Rubin accepted a psychiatrist's recommendation to medicate and hospitalize her for "psychosis."

He came to regret it.

"Her misperceptions are driven by a fear that something terrible is happening to her," he said, speaking in present tense for emphasis. "It is. There's a monster inside her head and it's real."

Just before Christmas that year, he moved her to an assisted-living facility. Then they drove to her brother's house. "The neurons are flying," she said as the scenery whizzed by.

Her decline was rapid. She lost her ability to walk and then began slumping in her chair. Her speech grew fragmented. Then she barely spoke.

She died last summer at 62.

She could still take pictures for a while after her diagnosis, but Rubin soon became the primary photographer. His pictures trace her decline from a slightly dazed-looking blonde to a woman with mussed, gray hair and anguished eyes. Partly to make sense of this awful chapter of their lives and partly because he thought he might write about it someday, he took notes and video and recorded his wife's high, breathy voice, sometimes fragile and feathery, sometimes tinged with panic.

While some people with dementia seem to be unaware of their symptoms, Beck seemed to understand her predicament and continued to have an emotional life.

One day, after he tried to force her to take her medicines and she resisted, she said, "Oh, sweetie. Oh, sweetie. I'm just a person." Then, "Oh, squeasy, I'm in a mad place."

In 2009, he recorded her saying, "I want, I want my husband. I am love with my husband."

In one of his film clips, she appeared bereft. "I died. I died. I died," she lamented.

A month later, he asked her whether she wanted to die. She stared for about a minute, then said, "I love life diddle diddle daddy love life."

In October 2012, she could manage "love, lovey" when she saw her husband.

But there was another time that year - she was barely speaking by then - when she looked at Rubin in a "rare moment of obvious recognition" and said "sad sad sad."

Rubin has lived with another woman for six years now. He said he continued to love Beck and visit her several times a week until her death, but she was no longer the woman he had fallen in love with. "Beck was probably the deepest emotional relationship I'll ever have," he said.

He is awaiting the results of her autopsy.

The point he wants to make is that Beck was still reachable even in the late stages of whatever disease was attacking her brain. One of Rubin's video clips is of Willie Ethel Brantley, a 97-year-old resident of the assisted-living facility who recently died, patiently - and effectively - coaxing Beck to sit up straight.

He said he wanted to "make very clear how important it is to engage with people even when they get to a point where they appear not to be responding."

Why? "Because they're human beings and their lives can be enriched that way."

Rubin also wanted to show other caregivers that one can endure the horror of watching dementia kill a loved one.

"If there's any hope," he said, "it's that I'm here to tell the tale."

sburling@phillynews.com

215-854-4944

@StaceyABurling