Once Upon a Time

It was 1985, and Bursack had two very young sons, one of whom was ill with juvenile rheumatoid arthritis and other problems, when the wife of an elderly neighbor died. The man, in his early 80s, was totally deaf and “helpless with communication.” Bursack thought, “How can I not help?” She was his caregiver until he died five years later. “We basically adopted him,” she said.

Just as that was ending, her aunt and uncle moved to Fargo to be closer to family. Her aunt soon died, leaving her uncle, who because of past strokes, required in-home help. At the time, Bursack’s parents were also able to help—until her father required surgery to remove fluid buildup from a closed head injury he had sustained during World War II.

The “routine” surgery to put in a shunt left him “totally demented and paranoid,” she said. “The most frustrating thing of all was, the medical people looked me right in the eye and told me that he was fine and was the same as he had been before surgery.”

The deception still hurts. “The worst nightmare is to have (health professionals) lie to you.” She knows they did it for liability reasons, and Bursack believes there should be a law that says you can’t hold medical personnel liable if they tell you the truth about a procedure that may have gone wrong.

Her father had to go into a nursing home, as did her uncle. Meanwhile, her father-in-law was ill, and her mother had hip replacement and was showing signs of dementia.

“I was running between my mom’s apartment and the nursing home seven hours a day, seven days a week, plus taking care of my children,” she said. “I’d get the kids to school, go back and get my mother and go see my dad and uncle at the nursing home.”

After her father-in-law’s death, her mother-in-law began suffering the effects of dementia as well. So while Bursack’s mother visited with the others in the nursing home, she’d go to her mother-in-law’s apartment and take care of her. Her mother continued to grow weaker and thinner, and started falling frequently, leading to calls for assistance.

Bursack chuckles at the memory of all those calls, noting how humor was essential during the otherwise difficult time. “Every town needs one person to be on-call to go pick up old people who have fallen,” she says. “Every city should have this. They would be trained and have a lot of muscles.”

Between the falling and the worsening dementia and arthritis, her mother, too, wound up in the nursing home.

Her mother spent seven years there; her dad, 10 years; her uncle, 5 years; and eventually, her mother-in-law moved there as well.

“Every day for 15 years, I went to the nursing home,” Bursack said. “My sister and I joke that our kids were raised in the nursing home.”

Along the way, Bursack got divorced and then got her first job after a 20-year lapse while she was caregiving and freelancing, working in the library of the Fargo newspaper. And she started talking to other caregivers at the nursing home she practically lived at. She interviewed 20 of them, then started writing their stories as well as her own.

Her parents died five months apart; her mother was the last of the six family members to pass away, in May 2005. The book that came from her writing, Minding Our Elders: Caregivers Share Their Personal Stories, was published three months later.