Parents of disabled children struggle with letting go

As their children age, they are forced to ask a question they'd rather not: Who will care for them when I'm gone?

By John Barry, Times Staff Writer
Published October 7, 2007


Advocare Trust
provides guardianship and advocacy for developmentally disabled people throughout their lifetimes. Call (727) 791-3972.

UPARC, the Upper Pinellas Association for Retarded Citizens, offers therapy, training, jobs and residential care. Call (727) 799-3330 or go online to www.uparc.com.

About this story: Times staff writer John Barry spent much of the past year reporting this story, getting to know Sue Schramek, the Culhane family and the clients of Advocare Trust. He spent time with Chris Culhane at home and at UPARC. He was with Sue Schramek the morning she made funeral arrangements for John Werner's mother. And he followed John Werner through his mother's funeral in May until he moved into a new group home in September.

- - - 

A hospital call awakened Sue Schramek at 2:15 a.m. Eighty-year-old Hildy Werner had passed away.

Sue got up, padded through the dark house, made coffee. She couldn't stop thinking about John, Hildy's baby. He was 42 years old, had Down syndrome, was as innocent as a toddler. All John's life, his mother had brushed his teeth. They'd slept side by side in twin beds.

Now John belonged to Sue.

At 9, Sue drove to her office and called Hildy's cousin. "I can make the funeral arrangements," Sue told her.

"I'm a preacher's daughter. I do a lot of things."

The next hour, she found a minister to officiate, ordered cookies for the funeral. Then she called the cousin again to ask about John. He had been with his mother when she fell from a stroke. He had watched her disappear into intensive care.

"There's just one more thing to do," Sue told the cousin. "John doesn't know yet."

Sue looked down, listening, gripping the phone. There was a pause.

"He's very emotional right now."

Another pause. Sue's mouth tightened.

"All right, we will go talk to him."

It was left to Sue to tell John his mother was dead. Isn't this what families are for? The preacher's daughter hung up the phone. She covered her face. She put her hands down, jerked her head in anger, looked straight ahead, unblinking. Her eyes were wet. It had just registered. Now she was family.

With two children of her own, Sue Schramek has a c'est la vie bearing about her, a look of friendly, green-eyed equanimity framed in blond. Her dad was a Methodist minister. Her occupation isn't much different. As advocate and guardian for dozens of aging disabled adults and their elderly parents, she knows the 23rd Psalm by heart.

Sue is executive director of Advocare Trust, invented in 1988 by parents of developmentally disabled children. Their idea was to create a safety net for when they died or got too old to care for their kids. They created Advocare to protect their children's rights, inheritances and complicated medical needs. The trust would even make sure teeth were brushed and nails were trimmed. It was unique to Florida. It's now worth more than $3-million.

The founders were mostly parents in the Clearwater area whose children attended UPARC, a training and therapy center for the disabled. The stories Sue heard never changed. Children aged, got fat, lost hair, got Alzheimer's, but they never grew up. They watched Sesame Street forever.

Parents counted on Sue to step up one day when a cataclysmic thing split them from their middle-aged babies. Mental retardation - the stray chromosome, the wayward neuron, the darkened bulb in the string - is always heart-breaking, but it's not the hardest thing for a parent to accept. The hardest is letting go.

- - -

As parents held on, some asked for very little help. They held Sue in reserve. All one father wanted was for her to call him in the morning when his wife was out of town, to make sure he hadn't died in his sleep, leaving their retarded son alone in the house.

Sue rang up Bill Culhane at 7, as he put socks and underwear on his son, Chris.

Bill was 71.

Chris was 35.

"Good morning, Bill."

"Hey, I'm up. I didn't die."

Bill had served two terms as Advocare president. When Bill and his wife Linda died or got too old, Chris would move into a group home, and Sue would manage his money, make sure his supply of The Price Is Right videos never ran out. His sisters would always be his family, but Sue would manage the daily decisions about his life.

Bill said, "I told Linda that if we weren't here, I'd want Sue to be Chris' mother." He didn't use the word guardian.

"That's how I feel."

But, like a third of the 68 enrolled families, the Culhanes couldn't let go. They joked that Sue would become Chris' guardian "one day before Mom and Dad died."

As Chris grew into his 30s, they kept him home, in a bedroom decorated in primary colors with safety rails on the bed. They listened to his breathing on a baby monitor. They fretted over grand mal seizures that had racked their son since babyhood. Their conversations about weaning him from their care always ended with "one more year."

Chris was by every definition a Culhane. His family tucked him in a canoe on a 120-mile Green River trek in Utah. He had a seizure in the canoe and kept going. They hauled him across cobblestoned Morocco, hoisted him aloft in hot-air balloons, sent him shooting down mountain slopes in a sled.

After Bill's mother died in Oregon, father and son drove cross country. Bill obsessively wrote lists of emergency numbers, fearing he would die and leave Chris stranded. He kept one note in the car, one in his suitcase, one taped to the TV in the motel. "I almost tattooed one on my chest."

Bill had retired from flying anti-submarine planes for the Navy in 1983. Linda, his wife, continued on as a nurse at Edward White Hospital in St. Petersburg. Their daughters, Jennifer and Sarah, had grown up and moved away.

Bill didn't play golf. He didn't read books or play tennis.

He lived with the terror of what would happen to Chris away from home. Who would listen to the baby monitor at the group home? Who would bring Chris his cookie and his puzzle? But it was more than that. If Chris moved out, what would happen to Bill?

When Chris finished his UPARC day, off they went in Bill's antique orange Beetle convertible. They hit the library, where Chris had his own card, or the post office, where mailmen gave Chris envelopes to put in the slot. They got haircuts at the Keane Plaza barbershop, where Chris squirmed, frowned in the mirror and yelled, "Erase!"

They meandered through Publix, one lean and gray, the other heavier and shuffling, a pair of jacks, with similar rough good looks. They made sure not to miss the macaroni and cheese aisle - just to look, not to buy. It made them fat. The two connoisseurs savored the shrill yellow packages like paintings in a museum, each recalling glorious macaroni and cheese dishes of suppers past.

Chris made Bill's retirement fulfilling and fun.

Except for those brain seizures that never stopped.

- - -

Early this year, John Werner's mother, Hildy, suffered a minor stroke at their Palm Harbor condo. John went to a group home for two weeks while cousin Gisela Duggans rushed from Ohio to help Hildy.

Gisela nagged Hildy to do something about John. Hildy was too frail to take care of a 42-year-old baby.

"Give yourself a few good years," Gisela scolded. "Enjoy life."

"If I gave John up," Hildy said angrily, "I'd sit in this condo by myself."

Her husband had walked out in John's infancy. She struggled for years as a bookkeeper in Chicago. A German, blue-eyed blond, she was strikingly beautiful, but she never remarried.

Mother and son took Bible classes on Tuesday nights, had dinner at Tiffany's on Saturday nights. They took world cruises and brought home ceramic plates from every exotic port: Brazil, Britain, Mexico, Egypt, Panama, New Zealand, Thailand. They dressed for dances in the ships' ballrooms - John in his blue blazer, Hildy in her little black dress. He carried a pocket comb wherever they went.

John and Hildy watched M*A*S*H at night on the TV at the foot of their twin beds. Radar remained the child soldier who slept with a teddy bear. Hawkeye and Hot Lips forever bickered.

"You've lived with your child for 40 years," Gisela argued. "Everyone has to grow up."

Hildy made a small concession. She'd go see Sue at Advocare, and make sure John's paperwork was all right.

- - -

The Advocare job wasn't exactly what Sue had bargained for. It wasn't just about legal rights and medical care. It was about human needs and desires, and all the frailties that such needs expose.

One client wanted "fluffy pillows" now. Others demanded Zephyrhills bottled water instead of tap water, or showed up at work four hours early. One longed to be a biker and have a biker mama. One locked Sue out so she couldn't see her leg ulcers threatening gangrene. One had wax in his ears. One had prostate cancer. One was found at home alone with the corpse of his father. Others got arrested, got married, bought cars, called the fire department for no reason. One got Alzheimer's. Another lingered on life support until it was left to Sue to decide life or death. Later she spread her ashes.

Sue gave herself a title: "resident nag." She hired two women to help her: Rosa Rivera, full time (she has a sister with Down syndrome), and Liz Mejia, part time.

Week to week, Sue kept a running list of crises. A typical week:

1. Hernia surgery. ("Something sticking out like an orange.")

2. Delusions/paranoia.

3. Wants to go to Vegas.

4. Wants a passport, has no birth certificate.

5. Refuses to eat.

6. Baker-Acted over weekend.

7. Won't do his laundry.

8. Had mild stroke.

9. Mother on feeding tube.

10. Angry over Checkers cup collection getting tossed out.

- - -

The important thing was to have a plan. The Culhanes had started on theirs when Chris was a child. When they got old, they would move him to a group home while they were still alive to supervise. They would search for the magic combination of medications to control his seizures. His future without them depended on controlling the seizures.

But the grand mals only got worse. From last Thanksgiving on, Chris suffered multiple attacks. If he had one or two seizures, Bill and Linda changed his diaper and comforted him. If he had more, they gave him Valium. After Thanksgiving, he had seizures every four days and went through a lot of Valium.

He began having six to eight seizures at a time, then 10 to a dozen. The Culhanes made regular trips to the emergency room. In early March, his neurologist put him in Bayfront Medical Center to try to find out what was wrong.

The nurses made a fuss over him, and Bill and Linda brought his favorite snacks and the puzzles he'd been trying to solve since he was 5 years old. They joked he'd come home fat. They took turns staying by Chris' bedside.

Bill had the Thursday night shift. At 4 a.m., Chris had a heart attack right beside his dad. His heart stopped. After long minutes of CPR, doctors restored his pulse, but he didn't regain consciousness. Bill looked for any sign from his son. He saw his little finger move.

The plan was crumbling before Bill's eyes. He was supposed to be the one dying. Chris was supposed to be the one who would have to go on. There was no Plan B.

Chris lay comatose Friday. His parents and sisters kept vigil, along with Chris' teacher and Sue. On Saturday morning, March17, his pulse weakened. The beats faded, then vanished.

- - -

A few weeks later, Hildy dined with John at Tiffany's, their favorite Clearwater restaurant. As she paid the bill, she felt terribly ill. "Please call 911," she asked the waiter. Then she collapsed from a stroke. John rode with her by ambulance to Mease Dunedin Hospital.

Hours later, Patricia Bell, a trainer at UPARC, showed up at Mease with a murderous midnight toothache. As she walked into the ER, Patricia saw a man with Down syndrome seated next to a stricken woman lying on a gurney. The woman was elderly, unconscious. The man was combing his hair, tears streaming down his face.

Patricia looked again. That's John Werner from UPARC. The comb was the giveaway. John always combed his hair when he was nervous.

He saw Patricia and cried, "No die! No die!"

She put her arm around him. "Your mom is sleeping."

Patricia asked a nurse if Hildy could hear her. The nurse thought she might. Patricia had two disabled kids of her own. She leaned over the gurney and whispered, "I'm going to make sure John's okay."

John was placed in a UPARC assisted living facility. He never went home.

Sue tried to talk to him about heaven and angels. He shook his head and shouted, "No die! No die!" Every time he saw Sue coming, he cried.

His mother passed away in the middle of the night on May3, and the hospital woke up Sue.

John didn't shout or argue when she told him. He sat beside her, and both wept.

- - -

Dozens of elderly parents and their graying, disabled children came to Chris' service at St. Catherine of Sienna Catholic Church. It was on his 35th birthday. His teacher, Maki Yoshikawa, brought everyone from his UPARC class. Chris' barbers crowded into pews. A chorus of UPARC men from Chris' Skycrest Baptist Church Sunday school sang Jesus Loves Me. The priest eulogized, "Chris never lied or hurt anybody."

A disabled man stood up, waved to the crowd, and took a bow. The grieving Culhanes, seated with Sue, smiled at him from the front row. That was old Chris Orsi from UPARC, waving and bowing. Bill couldn't help but laugh.

Chris Orsi thought the funeral was for him.

- - -

Sue and her assistant Rosa drove John to Sylvan Abbey Memorial Park in Clearwater to inter his mother's ashes. Sue brought white roses and her Bible.

On the way, they waited beside an ambulance at a light. John remembered the ambulance ride with his mother. He mumbled in a low voice to Sue. She helped him retell the story. "Yes," she said gently, "they put a blanket on her. They put straps on her. They took her to the hospital."

He began to cry. "I miss my mom." Beside his mother's crypt at Sylvan Abbey, they said the Lord's Prayer. John touched the roses.

"Why?" he asked.

Sue said, "I've never had someone ask why."

- - -

Bill and Linda Culhane hated the idea of anyone construing their 35 years with Chris as a sacrifice or a hardship. People always thought that. "I want them to see how normal it was," Linda said, "and how fun it was."

They sat in their kitchen, beside a cardboard display of snapshots they'd made for the funeral. It showed Chris in canoes and ski sleds. They remembered the customs agent in Spain who wanted to search their van on an airport tarmac on New Year's Eve. He'd flung open the door. "Take everything out of the van!" Then he'd found Chris, slumped in his seat, and decided it wasn't worth the trouble. He slammed the door. "Go! Go!"

They had so many stories like that - the time in Ireland, at the Blarney Castle in Cork, where they had paid hundreds of dollars for a medieval feast. They sat before giant platters of meat. Beside every plate was a large knife.

Just a knife. No fork.

"Not right!" Chris said.

"Don't worry about it," Bill told him. "It's like barbecue. Eat with your fingers."

Chris shook his head.

"Not right!"

After his funeral, a stone was ordered for Chris at the National Cemetery in Bushnell. It needed an inscription. Linda remembered a verse from Rubber Duckie, which she had sung with her son for 35 years.

They carved a variation of the verse on Chris' stone:

You made life lots of fun.

In his years of seizures and hospitalizations, Chris had only cried twice - after scraping his knees. What the minister said was true - he had never lied or hurt anybody. But Bill always wondered if he ever really had the capacity to love.

Chris' teacher Maki never doubted it. After the funeral, tears streaming down her face, she recalled helping Chris practice the words "I love you."

Maki asked: "What do you say to your sister, Sarah?"

"Uv you."

"What do you say to Mommy?"

"Uv you."

"And to Daddy?"

"Uv you."

Maki tried a trick question:

"What do you say to me?"

He told his teacher, "I need help."

- - -

Sue took John Werner home.

He had not returned to his mother's Palm Harbor condo since the night of her stroke. Sue wanted him to go home again, before he moved into a group home in Palm Harbor.

She unlocked the door for him. He seemed unsure where he was. He moved toward a painting of his mother when she was young and beautiful. He took it down from the wall and put it by the door. He collected photographs of their world cruises. He collected a lamp, a TV and a guitar.

John entered the bedroom and began to cry. He stood at the foot of his mother's bed and once more asked, "Why?"

He propped a portrait of his grandmother on the pillow. He asked to be alone.

Sue left the room. From the hallway, his soft voice was faintly audible.

John came out. He switched off the light.

John Barry can be reached at (727) 892-2258 or jbarry@sptimes.com.