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Originally published April 28, 2008 at 12:00 AM | Page modified April 28, 2008 at 6:37 AM

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Part 2 of 2

Aging father agonizes over fate of his son

The image, decades old, still lingers in Ron Johnson's mind: his teenage son, Ronny, beaming in the back of the family speedboat, the cool...

Seattle Times staff reporter

A lifetime of care

People with developmental disabilities are beginning to outlive loved ones who have tended to them. That presents difficult choices for families, friends and society — and the prospect of a wrenching change for James Jensen.

Part 1 | A past enveloped in love, a future of uncertainty

The image, decades old, still lingers in Ron Johnson's mind: his teenage son, Ronny, beaming in the back of the family speedboat, the cool, damp wind rushing by as they zoomed around Lake Chelan. Those were active times, family times.

Now it's just the two of them, and life has slowed. There's the old-fashioned barber shop where they both get haircuts, and the cookies and ice cream they eat together in the car. Father and son, Ron and Ronny, where one goes, so goes the other.

It's the way life has been, and the way life has to be.

Now 41, Ronny was diagnosed with autism as a child. He's needed constant monitoring his entire life. If left alone, he might dash out into the street. And he'll eat anything he can get his hands on — paper, banana peels and worse — because of a disorder called pica.

He doesn't really speak, except in grunts and squeals. He can't dress or shave or close a car door without help. He wears diapers.

"He's very handsome," Ron, 65, is quick to say. "He's got a fantastic personality. There isn't a mean bone in his body."

But you can see the strain. It's in the lines on Ron's face and the resignation in his voice. It's in the sparse suburban home where he's lived for 30-plus years and in his empty social calendar.

Ronny, meanwhile, is healthy as an athlete, still slim and boyish, with hands that are baby-soft, having never been put to work. It's likely Ronny will live into old age.

Ron's own health, however, is in decline — which has forced him to face his own mortality. And the heaviest burden of all.

"I have a choice of either devoting the rest of my life to taking care of him," Ron said, "or trying to find a place for him now."

As Ron well knows, it's really no choice at all.

Milestones missed

Pace, pace, pace and rest. It's a routine Ronny's had for years.

At their Lake Forest Park home, he marches a loop: down the long hall, through the kitchen and back to his bedroom, on and off all day long. Every so often, he sits in his armchair, near the preschool toys that he mostly ignores. He rubs his head and squints as if he's perplexed about a puzzle he never can solve. When he wants something, he stamps his foot; when he's happy, he smiles or flaps his arms. Mostly, he appears detached.

Until Ronny was about 3, he seemed to develop typically. But there were signs: He learned about 50 words but never strung them together like other kids. In preschool, he walked the playground perimeter, always alone. Soon, he was losing his language, missing his milestones.

The Ronny his parents knew was being erased. Doctors diagnosed him with autism, a disorder that today is said to affect as many as 1 in 150 children. Back then, in the 1960s and 1970s, it was less well-known.

Ron and his wife, Carole, a teacher, did their best, juggling Ronny's care with the activities of two younger sons, Scott and David.

But growing up there was tension. At restaurants, people stared. Scott and David felt embarrassed to have friends over, what with Ronny's diapers and his grunting. The boys often found themselves looking after their older brother.

"We used to have what were almost like prison breaks," Scott, 38, a lawyer in Philadelphia, said. That's what he called it when, every so often, Ronny would slip outside, and the family would start a frantic search. Once, Scott said, their mom found him in a storm drain, up to his waist in water.

David, who's 36 and works locally in construction, struggles with the memories so much that he doesn't want kids of his own. What if one of them was profoundly disabled, too?

Ron tries to remember the good times, like all the years they went to Lake Chelan for family vacations. All three boys swam — even Ronny, who loved to dog paddle.

But eventually, Scott and David took off for college, leaving mother, father and Ronny alone.

After Ronny finished special-education classes in 1987, he qualified for part-time care through the state Division of Developmental Disabilities. The government pays so that parents can keep their disabled children at home, rather than sending them to a costly state institution. About 25,000 families in Washington get part-time care; about 11,000 families are on waiting lists for that service and others. There's just not enough money to help everyone who needs it.

In 1994, Carole died of cancer, leaving Ronny's future in Ron's hands alone.

Facing a dilemma

Ron retired from his banking job in 2003. By then, he was slowing down; 40 years of smoking had done its damage. He didn't have the energy to keep Ronny active. He'd take his son out for ice cream or haircuts, but most of the time, Ronny wasn't doing much of anything at all.

Ron was simply tired: tired of the constant care, tired of feeling hopeless, tired of thinking no end was in sight. He yearned to live like a typical retired person, playing golf, going out to dinner or the movies.

As his son paced around the house, Ron made rounds inside his own mind: Take care of Ronny forever? Or take care of himself? His mind became a sort of echo chamber, his thoughts bouncing from side to side and becoming as much of a drain as the actual caregiving.

For every possible answer, there was a catch.

"Many times, I thought, screw it, I'm going to take care of him the rest of my life," he explained.

Then again, he reasoned, maybe there would be more for Ronny to do if he lived somewhere else.

But what if he were abused there? Ron knew it sometimes happened — he even collected newspaper clippings about it.

Scott and David weren't an option.

"It's not fair for me to ask them," Ron said, "and I'm not going to."

Several times, Ron asked the state for help finding out-of-home placement. His son had a caseworker, but according to Ron, he couldn't do much more than provide a list of care homes to call. Ron checked out a few, but none would work.

They were in a bureaucratic trap. Ronny was enrolled in a government program that qualified him for care in an adult family home. But his needs were so extensive that most of those homes weren't qualified to care for him.

Eventually, Ron just gave up.

It seemed selfish, anyway, to think about himself when Ronny needed him so much. What kind of father gives up his vulnerable son when he's still got time left? A failure of a father, that's what kind. The thought haunted him.

Ron tried to convince himself he should be grateful rather than desperate. Ronny had a great caregiver, a woman named Michelle Campbell, who came by on weekdays. They'd been able to keep her for years because Ron supplemented her $9 hourly state wage out of his own pocket.

But if he wanted Michelle to work more hours, or at night, he paid nearly $20 an hour himself.

Last year, for example, he went to Las Vegas for a few days, and Michelle's bill was higher than the hotel's. More often he passed up invitations, and, naturally, the invitations slowed.

Sometimes, he'd lie awake at night, consumed with anxiety. It got so bad that he'd call his sons at 2, 3 in the morning, overwhelmed with worry. Ron's sister said if he didn't get counseling, she would have him hospitalized.

Scott and David said the solution was clear: Put Ronny in a good group home. And do it soon; otherwise the decision wouldn't be Ron's to make.

"I told him if he didn't do it now, we'd do it when he died," David said. He wanted the best for Ronny but wasn't going to take over his long-term care.

"Maybe it's cold, but I didn't want to be 40 years old taking care of my 45-year-old mentally retarded brother," he said.

Try as he might, Ron couldn't do it. There was something more at stake here.

As much as Ronny depended on his father, Ron depended on his son. Ronny got loving care; Ron got company. A schedule to keep. A mission to fulfill.

Pushed by a crisis

A few days before Christmas last year, Michelle called paramedics to the house.

It was Ron. He was breathless, in agony. He needed bypass surgery.

Scott and David rushed to help and wound up tag-teaming it from hospital to home, Dad to Ronny. It was exhausting.

The morning Ron was wheeled into open-heart surgery, the brothers knew something had to change. From the waiting room, they began calling groups that serve people with disabilities.

In recent years, the advocacy groups have heard the same stories, over and over: Aging parents are struggling to care for their adult children. Washington officials have only just begun to take action. The state Developmental Disabilities Council has formed a committee. And Washington's Long Term Care Task Force, which was mainly aimed at elder-care issues, has also factored in people with developmental disabilities. What the groups haven't found are solutions.

"It's a very uncertain future given the numbers of people," said Nancy Meltzer, who works with aging families for The Arc of King County.

A walking encyclopedia of government benefits, Meltzer became the Johnsons' guide. It turns out Ronny qualified for a better government program, one that would pay for the high-level care he needed. It's called the Core Waiver.

The only problem was that budgetary constraints have limited the Core Waiver to about 4,000 participants in Washington. About 260 people who have qualified for it are on a waiting list. Some wait for years.

A way out

It turns out Ron's poor health was good for something. People who are in crisis get first dibs on the Core Waiver. And the Johnsons certainly faced a crisis.

Ronny was finally qualified for homes that could meet his needs.

"Dad said it felt to him they had this special treasure they never told him about before, and they let him in on the secret only when he couldn't take it any longer," Scott said.

On a January afternoon, Ron, Ronny and David visited one of the homes, about a half-mile from the Johnsons' house. Experts say this type of home, called supported living, is the best care available, short of an institution.

Ron wasn't sure.

"Ronny's real used to some pretty tender loving care," he said.

But he was willing to consider it.

Meanwhile, between the medications and the rigors of recuperation, Ron could barely take care of himself, much less Ronny.

"He got progressively more worn out," Scott explained. "He felt he was going to die if he had to take care of Ronny any longer."

Something had to give.

Free, and lonely

Days after he checked out the home, Ron piled Ronny's things into the car. He had made a decision. He still thinks it was rash, but Scott and David are relieved.

"Where's Ronny?" he asks the caregiver, a woman from Sierra Leone, as he stops by for a visit. He's in the bedroom, lying on the floor. Ron crouches and puts his arm around Ronny's shoulders.

"What'd you have for lunch?" he asks his son gently. "Did you have a good lunch?

He tussles Ronny's hair. "We have to get you a good haircut," he says. Ronny squints.

Father and son sit together on Ronny's bed. His two housemates are in the living room, with the television tuned to Oprah. One man smacks himself in the head over and over. The other keeps up a steady stream of conversation and plays with a musical toy.

An hour later, as Ron hugs Ronny goodbye, his son squirms from his grasp.

Leaving, Ron thinks about how different it is from home. Commotion instead of quiet. Shift workers instead of Michelle. Caregivers in latex gloves instead of ... instead of him. "It's the hardest damn thing you ever thought of," he says later.

Ron dabs at his eyes and tries to be positive.

"Doing it now takes the burden off Scott and David," Ron says. "They won't have to worry about it, and that's a big thing. That's a really big thing.

"Everybody's going to die. And a lot of these disabled kids are going to outlive their parents. If you can resolve that before you die, you're doing a service."

Back home, Ron's six-bedroom house feels empty. He has all the free time in the world and what he feels is lonely. Worried. Confused.

"I don't know how Ronny's going to do," he says, his voice cracking.

He pauses, shaking his head. His eyes are misty and red.

"I don't know how it's going to work for me, either."

Maureen O'Hagan: 206-464-2562 or mohagan@seattletimes.com

Copyright © 2008 The Seattle Times Company

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