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.
Cranial surgery: At UW Hospital a CT scan showed an acute subdural hematoma, a hemorrhage probably the result of an earlier fall. The doctors said it takes longer to notice the effects of this kind of injury in dementia patients because of the condition of the brain tissue.
As Dad lay in bed, hooked up to an IV and oxygen, the neurologists weighed in. Without surgery, he would likely lapse into a coma from the pressure on his brain. With surgery, Dad had some chance of regaining function. But his underlying dementia increased the risk.
We were gambling by saying yes to the surgery, but felt we had to try. This was the first of many times we were asked to consider Dad's "quality of life." We met the palliative care team, the folks who help navigate health-care choices based on a patient's comfort rather than on medical indicators. They asked us to consider if we wanted him alive at any cost.
What would he have wanted? Mom had straightened out the legal affairs, but we had no instructions from him about medical decisions. We were thrust into what turned out to be a nine-month-long conversation about what kind of life -- and eventually death -- we wanted for him.
Post-surgery: After the surgery, Dad's head was bandaged -- again. He looked gray and much older. A mitt, like a soft boxing glove, had been strapped onto his dominant hand. He used it to swat at the certified nurse assistants who were required to be at his side 24 hours a day. With the blood removed from his brain, the hoped-for improvement didn't materialize.
Dad's already shrunken vocabulary was reduced even further to "Bo bo bo bo," "Jesus Christ!" "Ow," "Mom!" and "fuckity fucky." They moved his bed closer to the ground and put rubber mats around it. They added ankle restraints to stop him from kicking. We kept a vigil at his bedside and learned to feed him while he commenced what we called "angry eating," biting down hard on the plastic spoons. Nurses brought him stuffed animals, which he hurled to the wall. We could hear his shouts as soon as we stepped off the elevators.
For more than a month at UW Hospital, we sat through countless meetings about what was next for Dad. Helpful social workers nodded sympathetically and placed calls to nursing homes, which would say they couldn't handle a patient with "behaviors."
On a personal level, we knew Dad was getting love and excellent care. But we sensed growing frustration among the administrators. The hospital social worker's efforts to find a place for Dad involved coordinating with a Green County agency that managed his Medicaid money. Our hopes for a nursing home were dashed repeatedly. After the surgery, he had become a patient who needed one-on-one care -- and sometimes more -- not something even expensive nursing homes offered. Meanwhile, he bit and pinched the staff and us. He recklessly pushed carts through the hallways of UW Hospital, stopping to try to drink hand sanitizer.
On May 19, I said, "I love you, Dad." And he replied: "I love you, too." He was still there.
An abrupt move: Even though we saw improvement, UW Hospital said it couldn't care for Dad anymore. His medical needs were under control, but he needed focused attention for his behavior, sometimes termed "agitation." I had taken to sharing copies of an article in The New Yorker, "The Sense of an Ending: A New Direction in Dementia Care," by Rebecca Mead. The piece profiles the Beatitudes Campus, a retirement community in Phoenix, which shuns the medical model of dementia care in favor of offering a "comfortable decline." They focus on managing pain, which is often a significant problem for patients who can't communicate about what's hurting them.
I wanted a Beatitudes for my Dad, but his reality was far from it. At UW Hospital, they used restraints and antipsychotic drugs. I still remember the first time a doctor mentioned Mendota. My dad? But we had run out of options. He couldn't come home, and all the nursing homes we contacted wanted his "behaviors managed" before they would take him on. This much we understood.
But I still don't see why he needed to be transported in handcuffs and chains to Mendota. The hospital declared he was a danger to himself or others, and the only flexibility the officer offered was a ride-along for Mom. She recalls Dad as so medicated that he barely registered the indignity. I hope that's true. As we watched our lives unravel, I nurtured a hurt feeling, vaguely aimed at "the system," that had put us in this position.
Next stop, Darlington: At Mendota I saw some things I can't unsee: the institutional green paint, a food-splattered dining room, a woman pulling down her pants and squatting in the common room.
But Dad was no saint. One day he was ramming wheelchairs and saying, "Fuck you"; the next he was smiling amiably and hugging staff and patients. The staff rotated every hour, keeping Dad and the dozen or so geriatric patients safe and clean -- and they never used restraints. The attending psychiatrist tinkered with meds to manage Dad's agitation and hallucinations. Some days he slept and slept.
Dad had three commitment hearings, each one worse than the last. At the first, the court-appointed lawyer seemed to know little about Dad, the case, or dementia. Dad sat silently during the hearing, which was held in a dreary room at Mendota. After another, in Monroe, a judge ordered Dad transferred immediately out of Mendota to a group home in Darlington.
Jennie and I rushed to Mendota as staffers pushed Dad's gurney into an ambulance. "Jesus Christ. Why? Why?" Dad shouted. It was raining. We followed the ambulance an hour and half away, to a ramshackle group home in Darlington, and when I saw the destination, I gained a newfound appreciation for Mendota.
"Does he have some kind of dementia?" asked the director, a nervous man who had cleared a bed in a cluttered office and steered Dad into a corner by a TV. Mom, carrying a paper bag full of medications, tried to explain how to care for him. The two staff members looked like deer in the headlights.
Less than 24 hours later, Dad was taken to a local hospital. Mom called UW Hospital, hoping they'd take him back, but they refused. He was out of their jurisdiction. Meanwhile, an emergency court hearing determined that he belonged...at Mendota. His condition significantly worsened from the stress of relocation, Dad returned to the only home he had.
Old friends: Back at Mendota, we settled into a routine that lasted the summer. Mom visited almost every day, bringing Dad homemade goodies, and Jennie and I made it there a couple of times a week. We saw families of deer and sandhill cranes, improbably framed against buildings surrounded by razor wire. Singing to Dad became the only way Jennie and I felt we could connect with him. Some days he would surprise us by remembering words to a Frank Sinatra tune.
But two or three people at a time were needed to change his diapers and bathe him, which meant nursing homes were still saying "no thanks."
The staff at Mendota became like old friends -- really patient old friends. When Dad was calm, they were allowed to leave us alone in a locked visiting room. One of his caregivers at Mendota, who has an autistic son, had a special affinity for Dad. Especially tuned in to the nonverbal, she would share detailed reports of his meals, his activities and his moods, looking for clues to his underlying state. "All behavior is communication," she said.
One visit, Jennie and I offered him a bagel and cream cheese, and he threw it. Jennie asked if he wanted to sing, and his only reply was, "Fuck you."
Punctuating these excruciating visits were days like the July afternoon when I sat with Dad in Mendota's fenced-in courtyard. We watched as birds flew in and out of the gazebo. A vegetable garden ripened nearby. I handed him strawberries from the farm and told him it had rained.
Dad looked thoughtful. "Do you think there will be a rainbow?" he asked.
Group home: In October, Dad was deemed fit to move to a group home, a renovated ranch house in Monona where a staff of mostly African immigrants cared for him and two other dementia patients. A few times he got on his feet and, with an aide at his side, stepped haltingly down the street, crunching autumn leaves. Technically he was a free man, but most visits were awful. One patient watched Fox News at full volume. Dad moaned, yelled and slumped further into his chair, and he lost weight.
In November, Dad was readmitted to UW Hospital for severe dehydration and a fever. We talked to the palliative care doctors, who explained that Dad was at the end of his life. They asked us to discuss as a family what kind of measures we wanted the staff to take to prolong his life. We chose antibiotics to fight an infection but refused a spinal tap, and they put a Do Not Resuscitate band on his ankle. We agreed that if he couldn't eat on his own, we wouldn't allow a feeding tube. And they asked us to consider hospice.
Dementia on the rise: My dad's dementia, cerebral amyloid angiopathy, was not exactly the same as Alzheimer's disease. But the effect on his brain was similar. According to the Alzheimer's Association, Alzheimer's is the sixth leading cause of death in the United States, afflicting more than 5 million Americans today. And because the population is aging, the numbers are exploding, expected to reach 7.1 million by 2025.
My family's experience with dementia suggests our facilities and legal system are not keeping pace with the needs. In the coming years, there will be more people like my dad, who can no longer be at home and who need a place to comfortably decline, not be treated like criminals.
But this story is not just about the way the system failed us. It's about a man losing his power. By acting out, my dad seemed to be telling us how much he detested not being able to care for himself. He couldn't say what hurt, or why he was sad or mad.
Words were his life, and he was angry that his mind had failed.
Peace at hospice: In early December Dad moved for the last time, to Agrace HospiceCare in Fitchburg. It was his eighth move since April. When he arrived from UW Hospital, he was bellowing "No" and "Why?" over and over.
But at Agrace, Dad finally achieved the peace we so desperately sought on his behalf. The staff introduced him to the comfort of morphine, and for the first time since our ordeal began, he seemed to recognize us and enjoy our company. The doctor said she thought he had probably been dealing with significant pain. His brow unfurrowed.
Daily, my mom offered "news of the day," an accounting of family and friends, updates on the Green Bay Packers and juicy tidbits from the headlines. She understood that Dad might comprehend only a fraction of her words.
His siblings all took Amtrak from the East Coast to say their goodbyes. My brother Mark came from Germany, and Will from Chicago. Dad ate ice cream with his kids and grandkids gathered around him, humming along and waving his hand while we sniffled and sang Christmas carols.
After two weeks at hospice, the social worker called us in to say that Dad seemed to be improving. Medicare would cover his inpatient stay only if he were receiving care he couldn't get anywhere else or were "actively dying." The hospice residence, in another wing, was full (and expensive). As we began to contemplate a ninth move, Dad stopped eating. He must have decided to let go.
Locked inside the frustrated, dying man he had become was the man he had been: gentle, compassionate and talkative. In the end, all we could really do was love him.
Final moments: This is the last image I have of my dad alive: a snowy night in Fitchburg, singing "Oh Come All Ye Faithful" and "Silent Night" with my mom, Jennie, Will and the hospice nurses; Dad's breathing becoming increasingly shallow as his life ebbed.
He died in the early morning with Mom in the room on Dec. 23. She said it was "beautiful."
