In the space of a year, my 76-year-old dad was moved in ambulances or cop cars eight times among treatment centers. He was suffering from dementia and prone to acting out, and nursing homes and a hospital refused him to take him in. One time he was handcuffed and chained in the back of a police car– the result of an “involuntary commitment for treatment” under Wisconsin Statute 51.20. My mom, who became a full-time caregiver for her demented husband, spent the better part of 2013 navigating a labyrinth of regulations and laws. She tried desperately to find a safe place where Dad could get the care he needed.
Handcuffs are only a tiny part of the story, but they are emblematic of how a once-genial man — who in his prime had cracked Korean War codes and run newspapers — arrived at Mendota Mental Health Institute in May 2013. The notorious serial killer Ed Gein was once hospitalized at the public psychiatric hospital. Even though it’s fair to say Mendota’s Geropsychiatric Treatment Unit, where my dad was confined, treats a different sort of patient, it’s still a mental hospital. It’s not easy to explain that you have a relative in Mendota.
Bill’s Corner: Bill Capellaro had a way with words. That’s what they would say in Danbury, Conn., where he grew up. Billy was the oldest of five adoring siblings. He shipped off to the Marshall Islands during the Korean War and served as a cryptographer during the atomic tests. The GI Bill paid for journalism school at Marquette University. He met my mom at their first job after college, in the public relations department of Northwestern Mutual Life Insurance. He produced documentaries, penned speeches for the lieutenant governor and reported for Milwaukee TV news. Mom wrote for the West Bend Daily News.
When I was in second grade, my parents got fed up with long workdays and commutes and moved to New Glarus, where they became co-editors and publishers of four weekly newspapers.
For my formative years, life revolved around the deadlines of creating these newspapers every week. Dad weighed in on local and state politics with a weekly column called “Bill’s Corner.” My mom’s, “Equal Time,” ran alongside it.
My three siblings and I squabbled, but we had a chaotic and happy childhood. I realize now how much we took for granted — like being able to communicate.
The first blow: In 1996, I got the call so many of us dread: Dad had experienced a brain hemorrhage. He was expected to live, but he was paralyzed on one side. When we arrived at St. Mary’s, Dad was droopy, surrounded by tubes, and speaking something like Hungarian. Underneath a bandage was a giant Frankenstein-like scar with stitches, where the surgeons had spent hours suctioning blood from his brain.
Our family-practice doctor, Dr. Beasley, paid a visit and wrote down two words: amyloid angiopathy. People who have it are at risk of hemorrhagic stroke and dementia. Doc Beasley wasn’t sure if Dad had it, because it’s difficult to diagnose. But if he did, this wouldn’t be the last episode.
February 2013: Dad was still living with Mom in a farmhouse outside New Glarus, complete with a handful of sheep and roaming chickens. But things weren’t going well. By March, Dad’s speech was reduced to a halting stutter. We tried hard not to finish his sentences, but it was excruciating. Simple directions, like where to sit at the table, confused him. He had aphasia, so his language consisted of semi-coherent beginnings to sentences that never arrived: “What about the….” “Come on….” “No…” “Why can’t….”
When Mom stepped out of his field of vision, he would shout: “Where’s Helen?” Repeatedly. To him, minutes seemed like hours.
Dad suffered from dementia, and we realized he wasn’t going to improve. But Mom was a tough sell when it came time to talk about what was next. It had been almost 48 years since she had said “I do,” and she kept doing.
A troubled man: By April, dementia — worsened by mini-strokes and seizures — had taken a heavy toll on Dad. His sleep patterns were disrupted, and he roamed the house at night. He tried to tear the sink off the wall. He shattered a glass panel on a door. He was sent home from adult daycare. He wandered off the farm and had to be brought home by neighbors. He cried and moaned, but he couldn’t tell us what was wrong.
My sister Jennie and I met with Mom, and we agreed to look at nursing homes. We all breathed a sad sigh of relief. It was time to accept that Dad needed more than Mom could provide at home.
We thought we had some months, at least, to visit nursing homes and make an informed choice about the best place for Dad. But while Mom was at a caregivers’ support-group meeting, Jennie and I exchanged worried looks. Dad was lurching, staring into space and retreating even further into himself. We shared a meal at Luigi’s, where Dad’s slow, fumbling gait drew the attention of the other patrons. By the time we lifted him into the back seat of the car, we sensed that something new had happened in his brain.