Lifestyle

A journey's end

Jane Shropshire’s death on Jan. 26 was unusual in several ways. It came relatively early, at age 60, after a two-year struggle with Creutzfeldt-Jakob Disease, a disorder that took away her ability to walk, talk and, to a large extent, think.

But her daughter, Annette Gildemann, says the dementia and pain Shropshire endured, and her fear of dying, was offset by one important factor: family.

In the midst of her death, there was an abundance of life.

Gildemann, her husband Gregg and their three children helped care for her mother for the last three months of her life. It was a demanding task, Gildemann said, but they found strength through several sources, including religious faith and a team of people from a local hospice service. The team was led by a Federal Way man named Matt Dixon.

Dixon is a jovial-looking, slightly balding man in his early 50s, who works as a nurse for Franciscan Hospice. He smiles easily and often as he recounts the day he was dispatched to Gildemann’s Auburn home. He said he was there to help her begin a process most people can barely discuss, much less undertake. In Gildemann, however, Dixon found a willing participant.

“I remember we went out to the back porch for a real intense Q&A,” Dixon said, smiling at the memory. “Annette was determined to make her mom’s last days the best they could be. She wasn’t afraid to dive in there and learn or do anything.”

Though she wasn’t sure what hospice was, Gildemann had called her mother’s doctor and asked for a referral. “I didn’t know anything about hospice,” Gildemann said, shaking her head. “I just felt it was right for my mom and for us.”

Dixon’s relationship with the Gildemann family is deep, borne of both joys and sorrows. “He was incredibly kind to us and to my mother,” she said. “I couldn’t have gotten through his without him, without everyone connected with the hospice service.”

THe journey

Creutzfeldt-Jakob Disease (CJD) is a neurological ailment that has been linked to bovine spongiform encephalopathy, or Mad Cow Disease. The disorder can lie dormant for years, even decades, and causes the sufferer to endure increasing bouts of dementia, finally losing all normal mental and physical functions prior to death.

Gildemann said no one knows how her mother acquired the disease. It is thought to be transmitted through organ transplants, or exposure to some contaminated material, particularly brain matter from infected cows. Mad Cow Disease has been a recent threat in Europe, but there have been no documented cases in the United States. Though their family lived in Germany for several years while her father was stationed at a U.S. Army base, Gildemann said they have no way of knowing if that’s how she contracted CJD.

The active onset of Shropshire’s disease was suspected to have been two years prior, when she complained of a headache so severe the usually stoic woman called 9-1-1. The months that followed were a descent into dementia and loss of muscle control, symptoms that were as perplexing as they were painful.

Hospice team

Gildemann had hoped that her mother would be healthy again until Shropshire was diagnosed with CJD. “I let go of that struggle,” she said. “I began to think about how we could help her through what was inevitable.”

But Shropshire was not her disease, nor was she her death, said Dixon. She was the sum of her life experiences and accomplishments.

“Jane was a wife and daughter, a fully realized person who gave a lot of joy to her family,” he said.

Dixon, who had worked as an emergency-room nurse at Harborview Medical Center in Seattle, has been an R.N. for Franciscan Hospice for three years. “We had all this high-tech equipment that seemed to drag people back to life, only to have them die anyway,” he said. “I went into hospice work because I thought there had to be more humane ways to go out of this world.”

The services Dixon and the other hospice workers performed for Shropshire included massage, bathing, pain management, spiritual counseling and help with funeral arrangements.

“I’m so wrapped up with symptom management,” Dixon said. “It’s great to have others who can help with all the aspects of the patient’s care.”

That additional help enabled Gildemann to pay more attention to her mother’s emotional needs. “I read this book, ‘Final Gifts,’ written by two hospice nurses,” she said. “It said that dying people often speak in a symbolic language.”

It was certainly true in her mother’s case, Gildemann said. “Right before she died she was upset that she couldn’t walk. She kept talking about not being able to ‘walk in the forest,’ that she didn’t have her shoes. If I hadn’t read that book, and took the time to listen, I wouldn’t have understood what my mom was trying to tell me.”

Gildemann was able to comfort her mother, telling her that when the time came she’d be able to walk — to dance — if she wanted to.

Today, four weeks after Shropshire’s death, Gildemann recalls how much her mother’s death taught her.

She thinks about her own death in a new way, she says. “Both my parents are gone; there’s no generational buffer,” she said.

She considers her life differently, too. “As I watched my mom let go of things that weren’t important, and never lose her faith even with all the pain and confusion, I learned to value every day I have,” she said.

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