Watching her mother's ordeal prompted Judy Berry, a former sales executive, to launch a 20-year effort to help people with dementia.
Berry's mother had just moved into a nursing home in the late 1980s when one day she wandered around the building without telling anyone. She was labeled a "flight risk" and moved to the facility's memory-care section: a hallway with a few rooms and locked doors on either end. She was in her mid-70s.
"When they told her this was her home now and she wasn't going to be going out, she went berserk," recalled Berry, who is now 72 and lives in Cokato, Minn.
The facility attempted to subdue the older woman with medication. But when not drugged, she turned rebellious and aggressive. Eventually, she was asked to leave the residence. The same thing kept happening elsewhere. Berry's mother occupied 12 facilities in seven years.
Finally, she wound up in a nursing home that kept her so heavily medicated she "sat in a chair for two years and drooled," Berry said. "It just ripped my heart out."
Berry knew her mother's behavior stemmed from fear and loneliness, that she needed "someone to hold her hand." But other facilities Berry saw had neither the budget nor the staff to provide such time-consuming personalized care.
After her mother died in 1996, Berry remained determined to create a different system. With no health care background, she spent several years educating herself, reading, visiting long-term care facilities and talking to staffers.
She knew her plan was a stretch. "But because I had been in so much pain watching what my mother went through, I wanted to at least try."
At 55, Berry quit her job as a regional sales representative, borrowed $500,000 and built a home on property she owned in Darwin, Minn. She admitted 10 residents — eventually 15 — who, like her mother, had been rejected elsewhere.
Her approach to care differed sharply from what she'd seen elsewhere. She told staffers to sit and talk with residents. Allow them to make choices. Validate them as human beings.
"If somebody is crying, they're sad. You need to be free enough to walk up to them and say, 'Oh, my gosh, I see you're sad. I'm not going to leave you.' "
Berry originally planned to build four homes together on the 11-acre piece of land, sharing staff and resources. But neighbors sued. So she built a second home in nearby Dassel, Minn. Her nurses and other care providers formed a staff-to-patient ratio of 1-3, far higher than most facilities could afford.
In the end, Berry couldn't afford it, either. In 2014, she sold the homes into which she'd sunk her life savings.
"I was 70, and I was tired. For 17 years, I fought to get the money to keep this alive," said Berry, who now works as a consultant.
Her one consolation: During those 17 years, she was able to save 370 families the pain she and her mother had endured.
Katy Read
