Aging parents are haunted by what lies ahead


Father and son's devotion and daily ritual ease loss

March 23, 1997|By Diana K. Sugg | Diana K. Sugg,SUN STAFF

At 4 a.m., freezing rain is pecking at the bedroom window. Bill Specht tries to make himself sleep. But the images won't stop coming: his children growing up, his wife, Tilly, at his side, the houses they lived in, the places they went.

He sees his son, Dennis Specht, who has Down syndrome, the boy he and his wife were told to put in an institution, the child they vowed to care for as long as they could.

But his wife died last year, Bill Specht is 83 and blind, and Denny, who was expected to live only to age 12, is sleeping in the next room. He is 43 and balding, with arthritis in his joints and wrinkles under his eyes -- one of hundreds of thousands of disabled people nationwide who have outlived every expectation and are aging alongside their elderly parents.

These families dwell in a place invisible to almost everyone else, at the juncture of several forces. People with developmental disabilities are living decades longer. The baby boom generation, including a population bulge of disabled people, is approaching 50. Many states are closing institutions, at the same time that money for group homes is limited.

Now, most of these adult children are on waiting lists for services they are unlikely to get until their parents are dead or dying. The mothers and fathers are haunted by what lies ahead.

In the dark, Bill Specht waits as the minutes creep toward 6: 01 a.m., when the alarm will go off. He thinks about how he isn't caring for his son as well as he might, how he burns the food or mixes up the 13 medicines they take between them.

"It's a time a'comin' when he won't even have me at all. I'll pass away. I'm getting to the end, I know it," says Specht, who fought in the Battle of the Bulge in World War II. "I just don't have another life to live over to keep him. The end is the end."

This generation of older Americans cared for its disabled children when few services were available. They saw them survive, even thrive, but find themselves still mothering and fathering 40, 50 years later. They are weary.

Many are so old and ill that they have trouble taking care of themselves. Their hips have been replaced, their arteries bypassed.

They are often isolated. Their other children have grown up and moved away. Spouses have divorced them or died. Friends have drifted away. Social life has become a television movie or a trip to the doctor's office.

Some must physically restrain adult sons who break windows and splinter doors.

They worry about where their children will live and who will watch over them. They wonder if anyone will be able to understand the grunts and garbled language that they know so well. Even

though some have terminal conditions, they secretly pray their children will die first to spare them an uncertain future.

Burdened with offspring who will never live on their own, the parents feel they don't even have permission to die. Their children are forever.

But they press on. Specht still makes his son's bag lunches for the workshop he attends weekdays, and tucks the bedspread (( under his chin at night.

The Maryland Developmental Disabilities Administration now has a separate fund to relieve elderly caregivers. The state is starting with the oldest, but has reached only a handful since the process began last fall. Among the first: a 90-year-old mother and 94-year-old father, whose son moved to a group home.

But the circumstances are daunting.

Maryland ranked 41st in a study last year that weighed states' wealth and spending for disability services. Almost every year, the state runs out of emergency funds, landing several disabled people in homeless shelters. By December, it had used the $2.5 million that was supposed to last through June.

The state's waiting list has 672 families whose caregivers are 80 or older, including Bill Specht. Some families have waited 20 years.

In a twist, those who kept their disabled children home now find themselves waiting for group homes behind those who institutionalized their children early on.

"This is a secret," says Marty Krauss, an associate professor in the Heller School at Brandeis University who has tracked more than 460 families for almost a decade. "It's a problem of untold dimensions. It affects not only the parents, but siblings, neighbors, cousins. Most people know someone with a lifelong disability."

Some attribute the hidden nature of the problem to the stoicism of the parents' generation. Like the Spechts, these are the people who pitched in to pioneer services and establish advocacy groups in the 1950s and '60s.

"It doesn't do no good to complain," says Bill Specht, who lives in Taneytown in Carroll County, and painted his cane white when he lost his vision. "When you get up in the morning, it's still the same situation."

Daily routine

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