Friday, April 12, 2013

A Football Widow's Traumatic Journey


The New York Times


April 8, 2013

ANNAPOLIS, Md. — The end of Ralph Wenzel as his wife knew him began in January 2007. They were descending a flight of stairs at San Francisco International Airport, on their way to the baggage claim, after a two-week trip to Hawaii.
Symptoms of his dementia had been troubling during their vacation. Wenzel acted as if he had awoken in a strange place, surrounded by strangers. He did not recognize his wife, Eleanor Perfetto, or her parents. He braced himself and shook his big fists when they approached. He tried to run away. It had not been much of a vacation, she thought.
Wenzel started down the stairs, and Perfetto walked next to him, holding his hand. Six steps from the bottom, he stumbled. He fell hard and landed in a heap on the floor, blood spewing from a gash on his forehead.
He stayed at a hospital in California for 10 days. Doctors would not let him board a plane because he was too volatile. They increased his medication, and he drifted further out of touch.
Perfetto decided that her husband, who was 63 and had played seven seasons in the N.F.L. as a guard, needed to live in an assisted-living facility. She began to wonder: what is the rest of my life going to be like?
She did not have an answer. But she would sell their house in the countryside, she decided.
At first she had found it to be an odd, little house. It was gray, with big windows, beautiful trees and a deck, set on 20 acres on Kent Island, near Annapolis. Most of the backyard was grassy marshland. A creek snaked through it and spilled into a pond. Their closest neighbor lived on the other side of the pond, about a half-mile away. Across the marsh, they could see the Eastern Bay.
She would remember this as the last place her husband was healthy. Back then, he tended a vegetable garden in the yard. He would wake up at the same time each day and putter around in his garden. Life in their odd, little house was pleasant. But Perfetto had noticed something was off. Wenzel kept losing his wallet and his checkbook. He seemed easily confused.
She kept this to herself until one day in 1999, when they were discussing what to do about a patch of strawberries.
He had first planted the strawberries outside the garden, only for them to be ravaged by rabbits and deer, so he moved them inside the fence. Now, months later, the strawberries had regrown wildly and needed to be moved again.
He suggested they be moved outside the fence: he pointed to where they had been planted before, clearly not remembering that he had once planted them there. She was alarmed. She scheduled a doctor’s appointment.
The doctor asked, when did he first notice something was wrong?
It was in 1994, he said. He was coaching high school football at Sidwell Friends School in Washington. One day while instructing his players, they told him he had taught them the same thing the day before.
“Well, then, tell me what I taught you,” Wenzel said, and the players repeated verbatim what he was about to say.
Perfetto had never heard that story. Then the rest came pouring out: the confusion, he noticed it, too. It depressed him. It felt as if there were a door shut in his brain that he could not open. Wenzel was 56, and the doctor diagnosed “mild cognitive impairment,” which typically progresses into dementia.
Knowing what was to come made him more depressed, Perfetto sensed. At home, she made sure he kept a routine — managing that vegetable garden — so he felt as if nothing had changed. But it would.
She eventually hired several cleaning women, who were in fact caregivers, to take turns watching Wenzel while she was at work. They made sure he ate his lunch and took his pills. At first it was for a few hours. Then he needed to be watched all day. He still weighed about 225 pounds and he was eating well, but his mind was slowly escaping him.
At night, lying in bed, while Perfetto read, Wenzel hallucinated. Many nights he turned to her, so mad, shouting about children playing in the guest bedroom: “I don’t know what they’re doing in there!” She took him, showed him the empty guest room and said, “Look, there’s no one there.”
His face would go blank, his eyes would droop, disappointed and sad, and he would say, “Well, they left.”
He was paranoid. Often he told the caregivers that Perfetto put him to bed early some nights to throw wild parties without him. The notion made her chuckle. When she wasn’t working as a senior director at Pfizer, she was watching him.
About once a month, she indulged herself and drove to Annapolis, to meet her friends in a book club. They drank wine, gossiped and shared recipes and vacation spots. She and her husband loved to travel. They had been to the Caribbean, Italy and France. But how much longer could that last?
He could no longer communicate in complete sentences, only in words or phrases or mumbled jargon that his wife had to strain to decipher.
Life went on like this until he fell.
Moving Apart
Four months after Wenzel fell at the airport in 2007, Perfetto attended a local fund-raiser with her book club friends. They introduced her to John McCloud. They told her she and McCloud had a lot in common. His wife had died about six weeks earlier from brain cancer. She had fought it longer than expected, but the end had been horrible. He was coping.
Perfetto and McCloud hit it off. They started seeing each other every now and then.
She tried to visit her husband every day. He had been moved to a facility in Annapolis, and Perfetto had moved in with a book club friend who lived nearby. Wenzel could walk, gingerly, on his own, but his mumblings were mostly indecipherable.
On weekends, she took him out for drives, put on his favorite oldies CDs, and for a few minutes he would bob his head, then fall fast asleep. Some days, they went on walks at a nearby park or got ice cream. They often went for seafood, and he would eat a basket of fried fish, oysters and shrimp.
She stayed until the staff showered him, then tucked him into bed and put on an old movie, maybe a musical like “My Fair Lady,” and the music put him to sleep.
Wenzel stayed at that facility for about nine months. Then Perfetto moved him, because she was not happy with the care, to another local facility where he would stay for about three and a half years.
McCloud did not go with her to visit. But sometimes he helped get Wenzel to the doctor’s office. They were growing closer, Perfetto and McCloud. He understood loss. They moved into a new house together in Annapolis, in a neighborhood near her book club friends, in November 2008.
Deterioration and Death
Wenzel fell hard again in December 2010, breaking his collarbone. He went back to the hospital. When he left, it was decided that he needed to be restrained. Perfetto moved him again, to a third, smaller facility called La Casa.
There, when he tried to get up, a buzzer would go off. He flailed. He pushed his back against the chair, he kicked, waved, sometimes all at once. He broke several chairs. The attendants were wet and soapy after his showers.
Perfetto still tried to visit every day. She often found him slouching in a chair, his head drooping onto his chest, his brow furrowed as if he were mad, his mouth drooling. Perfetto had to lift his head to feed him.
On Saturdays she brought doughnuts — apple cinnamon, his favorite. He would eat two or three, but they had to be mashed first.
At the communal table, she chatted with the other residents. She learned about their grandchildren and former lives.
No matter how much Wenzel ate, he lost weight. He dropped to 140 pounds. Crumpled in his chair, the formerly burly football player looked like a skeleton with skin, Perfetto thought. Some days he would be rolled outside, his chair set in the sun. He was not well enough to walk anymore. He was unresponsive. He seemed gone.
In January 2012, five years after the fall at the airport, Wenzel came down with the flu. He was put in hospice care. Perfetto began making arrangements for his death.
One afternoon in June, while she was in London for a business conference, Wenzel did not wake up from a nap. There were no signs of trauma, no signs of pain. He was 69.
A small service was held a week later. Wenzel was cremated, but his brain was harvested and sent to Dr. Ann McKee, a neuropathologist who is the director of the brain bank at Boston University’s Center for the Study of Traumatic Encephalopathy. She examines brains for signs of chronic traumatic encephalopathy, commonly known as C.T.E., believed to be caused by repeated blows to the head. It can be diagnosed only posthumously.
That summer, after his death, Perfetto found herself occasionally sitting in traffic and still thinking of when she would visit Wenzel next. It had become routine.
In September, Perfetto had a funeral for Wenzel in the countryside on Kent Island, at their former neighbor’s house across the pond. It was a beautiful, sunny day. About 100 family members and friends attended.
They poured his ashes into the creek. In the distance she could see her old house. It looked as it had, except for a swimming pool where the vegetable garden used to be.
A 1-Year-Old’s Brain
At the time of his death, Wenzel’s brain was scarred and unsightly, its hills were not plump, its valleys were deep and thin, but most noticeably, the entire brain had shrunk to half its size. It could fit in the palm of a hand. It weighed 910 grams, about the size of a 1-year-old’s brain.
Six months later, McKee had assessed the damage, the result of 69 years of life, 7 seasons as an offensive lineman in the N.F.L. and several concussions. She called Perfetto to deliver the news.
McKee had examined at least 90 cases of C.T.E. She described Wenzel’s as one of the worst she had seen. She said it was “as bad as guys who played 16 seasons and lived into their 80s.”
McKee determined that Wenzel also had Alzheimer’s disease, which meant it was as if his brain had been lighted on fire at both ends. The findings did not seem to surprise Perfetto. In recent years, she has been one of the most outspoken voices in the debate over head injuries in football, and their possible long-term effect on players’ cognitive abilities.
On Tuesday, in United States District Court in Philadelphia, oral arguments will be held in the case between the N.F.L. and thousands of retirees who accused the league of hiding information about the dangers of head trauma. The players are seeking damages for their injuries. Perfetto, 54, will address reporters after the arguments are heard.
She might be asked: what was it like, those last five and a half years?

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