The Wall Street Journal
(Copyright (c) 2004, Dow Jones & Company, Inc.)
http://online.wsj.com/public/us
Wednesday, January 7, 2004
The Tender Trap:Parents Devoted To a Disabled Child Confront Old
Age
---
Failing Strength May Force The Communal Care They Dreaded for So
Long
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Helping Tim Through His Day
By Clare Ansberry
PITTSBURGH -- Donald Tullis, 84 years old, wakes each morning in the
room he
shares with his youngest son, their beds only feet apart. He
ties his son's
tennis shoes, helps him with his pants and suspenders, and shaves him.
He makes
cereal the way Tim, 49 and autistic, likes, with water rather than
milk, and
packs a hamburger, apple and cherry pie in a brown paper bag. At 8:30
a.m., a
van arrives at the curb and honks, ready to take Tim to a training
center for
developmentally disabled adults, where he learns how to fold his clothes
and
write words on a chalkboard.
For a few hours it is quiet in their small apartment, save for news
updates
from the radio or TV, or traffic noises outside. While his son is away,
Mr.
Tullis rinses the dishes and makes their beds. When Tim returns shortly
before
3 p.m., Mr. Tullis pops some popcorn for his son and gives him the
day's junk
mail to sort through, maintaining the routines so critical to those
with
autism. They share a quiet dinner in a tiny kitchen, Mr. Tullis reminding
his
son to use his spoon for mashed potatoes and fork for meat. Both father
and son
are big men, though Tim is far larger than his father, having outgrown
the 44-
inch-waist pants that Mr. Tullis now wears.
If Lawrence Welk is on, the two watch it together, Tim smiling and
rocking in
his favorite rocking chair, so worn that it's held together with a
wire hanger
and nails. On other nights, they listen to records of Scottish and
Irish
singers, or read. Mr. Tullis prefers mysteries, his son magazines,
flipping
through them for both the pictures and the occasional familiar word.
Mr. Tullis's wife, "the Missus" he calls her, a tiny lady named Gert,
died a
few years ago. Since then, Mr. Tullis has assumed total care of his
son. Tim
adores his father, his few sentences often about Daddy. Likewise his
father, a
soft-spoken man, beams when he talks of the progress his son, once
declared a
"mental defective," has made. A few years ago, Tim received an award
and plaque
for his spirit and determination from the Ross Center, where he goes
each day.
His father, then 81, attended his son's first award ceremony.
His biggest concern is what will happen to Tim when he dies. Although
Mr.
Tullis doesn't suffer from any major medical problems, he must deal
with the
normal course of aging. He shuffles when he walks, wears a hearing
aid and has
arthritis, which swells his hands and causes pain in his back. "Eighty-four
is
getting up there," says Mr. Tullis. "The hard part is that it's going
to be
harder on him than me."
After a lifetime of caring for their developmentally disabled children,
a
generation of parents are reaching the same painful crossroads, realizing
that
they can't do this much longer. During the 1950s and 1960s, these pioneering
mothers and fathers were among the first to shun institutional care,
insisting
on a place for their children in society rather than on its fringes.
They were
a major force behind laws requiring schools to allow disabled children
into
mainstream classrooms or to set up special programs for them.
In raising their children at home, these parents had little support
from
outside organizations, leaving them largely on their own to be parent,
nurse
and teacher for children with then-baffling conditions. They saved
the
government hundreds of millions of dollars in expensive care. They
also set the
standard that subsequent generations of parents have embraced. Today,
about 76%
of the 4.3 million people with developmental disabilities live at home,
a
quarter of them cared for by a family member who is at least 60 years
old. Most
of the rest live in supervised settings or on their own.
That dedication enriched lives and created a symbiosis between parent
and child
that strengthened over time, but that time likewise makes untenable.
Now in
their 60s, 70s and 80s, some with weak hearts or limbs and others coming
off
bypass surgeries or chemotherapy, these aging parents are realizing
that
carrying a disabled adult child down steps is dangerous. Tending to
breathing
tubes throughout the night is exhausting. These parents' lifelong concern
with
their child's mortality is coupled with a growing awareness of their
own.
Yet for the most part, these 670,000 older parents -- those 60 years
plus --
continue because they are afraid not to. Relinquishing care of a fragile
child
prone to violent seizures or terror of the unfamiliar is difficult
even as it
becomes physically harder to provide. And in spite of the progress
of the past
40 years, there are still limited options for the disabled once they
pass
through mandated education programs, which generally stop when they
reach the
age of 21.
Nationwide, 80,000 families are on waiting lists for government-funded
residential services such as in-home help; some have been waiting for
a decade.
The figure doesn't include untold others -- by some estimates 40% of
caregivers -- who haven't asked for service because they don't know
it's
available. In some cases, bad past experiences keep families from reaching
out
for help. Years ago, Tim spent three months in a state mental-health
institution because he was eating uncontrollably; he came home with
unexplained
sores and bruises. He apparently had been bullied by others there who
ordered
the then-26-year-old man to tie their shoes.
The tandem needs of an aging parent caring for an aging disabled child
are
beginning to draw attention. The Administration on Aging of the U.S.
Department
of Health and Human Services and The Arc, a nonprofit organization
for the
developmentally disabled based in Silver Spring, Md., are in the early
stages
of developing a program to give help and counselling for older caregivers.
In
the meantime, these parents continue dressing, bathing and feeding
their
children, concerned more about their offspring's welfare than their
own needs.
"There are a lot of quiet heroes and heroines out there," says Diane
Len, of
Family Links, a nonprofit agency based in Pittsburgh that coordinates
government-funded services for the Tullises and others like them.
Their paths cross over coffee in the cafeteria of the Ross Center,
which works
with their adult children, about 40 in all, who are severely developmentally
disabled. Martha Misson, a widow and 79-year-old stepmother, had triple
bypass
surgery in 2000 and cares for her 44-year-old stepdaughter, who has
seizures so
severe she must wear a motorcycle helmet at all times. Frank and Susie
Simons,
both in their 60s, must spoon-feed soft foods to their 36-year-old
son. The
O'Sheas, Robert and Catherine, who are in their late 60s, installed
a lift
above their quadriplegic son's bed because Mr. O'Shea has a weak heart
and can
no longer lift him. Frank Hricak's wife, Alice, 78, dresses and bathes
their
49-year-old daughter, who suffers from an undiagnosed mental disability.
Mia
Ramaeckers waits until her 72-year-old husband, Martin, comes home
at 9 p.m.
from a part-time job cleaning offices to take their 37-year-old daughter,
her
body curved like an S, up to bed. "It is easier with both of us lifting
her
up," says Mr. Ramaeckers. "She's not getting bigger. We're just getting
older."
In many ways, these lives reflect the great successes of technology
and
medicine. Both parent and child are living longer than previous generations.
A
child with mental retardation today has a life expectancy of 66 years,
compared
with 19 years in the 1930s. In the past, a child who could not swallow
or was
prone to seizures would have been raised in an institution. With portable
breathing machines and drugs to help reduce seizures, they can live
at home.
Such is the case of Mary Lou Ramaeckers. Tiny Mary Lou, whose toothy
grin fills
half of her delicate face, spends much her time at home lying on a
mat in the
family room of their two-story brick home, where she watches "Wheel
of
Fortune," a blanket tucked around her, a pillow under her head. Windmills
from
the Ramaeckerses' native Holland line the walls.
Doctors have never been able to identify her disability. When she was
about
three years old, she began walking ducklike on her toes. Doctors operated,
pulling her muscles down to help her walk flat-footed, and thought
she might
have cerebral palsy. They later ruled that out. When she began shaking
uncontrollably, they said she had a rare neurological syndrome. They
later
concluded she had an undetermined metabolic disorder. When her spine
began to
curve from scoliosis, they said it made no sense to operate. "They
thought it
wasn't necessary because she wouldn't live long," says Mrs. Ramaeckers.
"She
was going to be a teenager and that was it."
Mary Lou's body grew twisted from the untreated scoliosis, and her
muscles
deteriorated. She weighs about 75 pounds, though it's hard to tell
how tall she
is because her body won't straighten out. She can't walk, talk, sit
up on her
own, swallow or eat solid food. A dozen years ago, doctors suggested
a nursing
home. Her parents said no.
"Look at her," says Mrs. Ramaeckers, nodding to Mary Lou. "A girl who
can't
talk, who can't push a button for help. What are they going to do with
her? She
would just lie there. You put her in the best nursing home you want,
even if
you have the money, and she is not going to be taken care of like she
is at
home."
It's not just physical care they provide. Mrs. Ramaeckers dresses Mary
Lou in
color-coordinated outfits, often in her daughter's favorite purple,
and styles
her hair when they go out to dinner and to the movies. Wanting her
daughter to
be well-mannered, Mrs. Ramaeckers tells her to smile to convey thanks,
sensing
her wide grin warms and disarms those who might be uncomfortable seeing
her.
"Give them a smile," she coaxes. "It's what you can do."
Her parents alone can sense almost imperceptible messages from their
daughter.
Mary Lou glances in a certain direction to tell her parents when she
is hungry,
has to use the bathroom, or wants the TV station changed. When Mary
Lou has a
painful muscle spasm, her mother says her eyes go blank. "I tell the
doctors,
'Her eyes go, she leaves me,' " she says. "They don't know what I mean."
(MORE)
They detect the slight gurgling sound amid conversation and laughter,
and take
turns suctioning saliva from the tube that acts as Mary Lou's trachea
so she
won't choke. The sound wakes them up several times each night.
"It's just like having a new baby. You hear them," explains Mrs. Ramaeckers
--
only she is 70 years old, not a new mother. "You do slow down, but
you manage,"
she says.
Mr. Ramaeckers dotes on Mary Lou, slipping her a dollar bill when she
goes on a
field trip with others at the Ross Center to the Dollar Store, and
teasing her
gently to make her laugh. "You gain another ounce and I'm through with
you,"
says the slight Mr. Ramaeckers in a mock threat, as he carries his
daughter up
16 steps to her bedroom. It is her favorite room in the house, with
paintings
of hot-air balloons and peacocks on the wall and blue Smurfs resting
on her
bed. She seems to like it better when her father carries her, giving
him a
smile and making a noise when her mother does. Mrs. Ramaeckers says
she hugs
Mary Lou tightly because she is afraid of dropping her.
"We are lucky," says Mr. Ramaeckers. But he worries about the future.
"We've
got another 10 years. Then what? Who will take care of her?"
They haven't asked their other four children to do so. "They probably
would,
but it's not fair," says Mrs. Ramaeckers. "They have their own family,
their
own life. You don't want to put the burden on them."
Few would criticize this generation of parents for choosing a selfless
yet
ultimately unsustainable path. Many might say that the intangible benefit
of
being at home and surrounded by comforting smells and sounds, family
and
friends, is itself good medicine. Still, those who work in the field
of
developmental disability gently encourage parents to make plans for
their child
for when they are gone, if only to ease the transition for both. Too
often,
they note, an older parent dies and a middle-aged child with the functioning
level of a 3-year-old is left overwhelmed dealing with the loss of
both parent
and home.
"With this population, you have to do some planning. There's too much
trauma in
a new setting," says Prof. Tamar Heller, who heads the Disability and
Human
Development Department of the University of Illinois at Chicago.
Especially for a person like Tim Tullis.
It's difficult, all these years later, to pinpoint just when the Tullises
first
realized something was wrong with Tim, the youngest of their four children,
who
was born in 1954. Mr. Tullis says he was a beautiful baby with deep
dimples.
Tim walked and seemed fine until he was about 3, when his parents noticed
he
wouldn't talk. They sent him to school but he was dismissed after two
months.
At age 7, Tim was declared uneducable and mentally retarded.
Mr. Tullis, who grew up on a cattle ranch in Nevada, and Mrs. Tullis,
from a
small town in West Virginia, were left largely on their own to deal
with the
bewildering condition of autism. Even today the disorder, marked by
hypersensitivity, obsessive behavior and an inability to relate to
others,
isn't fully understood.
Schools weren't required then to accommodate children with developmental
disabilities. Still, Mrs. Tullis remained hopeful, having Tim tested
every year
to see if he could attend school. Each year, he was refused, and his
mother
brought him back home to their yellow clapboard home on Blossom Way,
and gave
him books and pencils and paper. When Tim was in his early 20s, his
mother got
so frustrated and angry that she went to court and persuaded the judge
that Tim
needed a treatment program. The judge ruled that the county had to
admit him
into one.
By then, it seemed as if it was too late. Tim had never been in group
settings
before. He was kicked out of the program for being disruptive. "At
present
there is no place for Tim except to remain in the care of his parents,"
one
psychiatrist concluded. "Community resources available to Tim are virtually
non-existent."
Tim's parents did what they could on their own to fill his life. They
gave him
books and magazines. Mr. Tullis says he never made a lot of money,
maybe $6 an
hour at his peak, driving equipment for a construction company. But
every
summer, they took a long car trip with Tim, eventually seeing nearly
all 50
states, staying in roadside motels until their money ran out and taking
pictures until the camera got lost. They visited Yellowstone's hot
springs,
Hell's Half Acre in Wyoming and Mount St. Helens months after it erupted.
Several years ago, Mrs. Tullis was diagnosed with Alzheimer's and began
acting
strangely, wearing socks in the bathtub and forgetting how to sign
her name.
She didn't recognize Tim and wondered who this big person was. Taking
care of
both his wife and son was difficult, but Mr. Tullis managed until one
afternoon, when his wife fell off the back porch and broke her leg.
From the hospital, doctors transferred her directly into a nearby nursing
home.
Mr. Tullis would get Tim ready for school, spend the day with Mrs.
Tullis, then
return in time to greet Tim from school and make his popcorn. His father
never
took Tim to visit his mother at either the hospital or nursing home,
for fear
he wouldn't leave. She died about five years ago. For a long time after,
at
unexpected moments, Tim would blurt out, "Mommy in the hospital." When
he and
his father got ready for weekend drives, Tim would say, "Wait for Mommy."
Their apartment misses touches she might have lent. Plastic supermarket
bags
dangle from lamps. Two umbrellas lean against each other in a bookless
bookshelf where 80 years' worth of photographs are stuffed in envelopes.
Mr.
Tullis washes his laundry in the bathtub because there is no washing-machine
hookup in his apartment. This past Christmas, the artificial tree stayed
in the
cellar.
Mr. Tullis takes Tim on outings in the family's Dodge Caravan. On weekends,
they pick a direction and head out to the rolling Pennsylvania countryside
for
the day. Tim sits in the back seat, his hands folded across his expansive
stomach. Little is said. If Tim sees a barn, he says, "Mail pouch,
big barn,"
remembering the chewing-tobacco advertisements that are often painted
on barns.
They stop at Arby's or Wendy's and eat lunch in the van on TV trays
to avoid
the crowds. On Christmas day, the other Tullis children visit their
apartment,
but one family at a time so as not to overwhelm Tim.
His youngest daughter, Linda Biegenwald, says her father has never
asked his
children to take care of Tim when he's gone, and it's not a comfortable
subject
for any of them to broach. "You don't like to speak about parents dying,"
says
Mrs. Biegenwald, who is 50 and has two daughters living at home, both
of whom
suffer from mental disorders. "I don't know if I could do it." She
hopes, along
with her siblings, that Tim will be able to live in a supervised residential
program. "No matter where he is, we'll be as active as possible in
making sure
Timmy is taken care of."
For now, it's up to his father. "His dad takes very special care of
Tim," says
Sister Jeanne, Tim's counselor at the Ross Center.
The Ross Center tries to help where it can, but it's under budget pressures
because of federal and state cutbacks in funding. Staff members do
more than is
required. Sister Jeanne patches holes in Tim's pants, knowing an aberration
in
the form of a small rip can unnerve someone with autism. She found
a new
apartment for the Tullises when the old one had mold growing on the
walls.
Sister Jeanne, who is also a member of the School Sisters of Notre
Dame order,
works patiently with Tim, trying to get him comfortable to new people
and
experiences. She made six trips with him to an office building to have
his
photo identification picture taken before he would get out of the car,
go
inside and have the picture snapped. Weeks in advance of each new outing,
she
compiles construction-paper booklets to review with him. There's "Let's
Go to
the Bookmobile" and "Tim's Physician" and "Tim Buys a Plant."
The efforts have paid off. When Tim first started coming to the Ross
Center, he
hid in the closet and could tolerate only 15 minutes of being at the
center
before he had to be taken home. Now he stays for the full five hours.
He
demonstrates a fascination with words and likes to type groups of nouns
thematically with no space: FRITOLAYBRACHS. SPIROAGNEW. Once described
as
aggressive, he gets up in the classroom to offer his seat to someone
who
doesn't have one. In stores, he keeps his hands behind his back so
as not to
disturb anything. This past Christmas at a staff member's house, he
watched a
train set, hummed softly to himself and ate stir-fried chicken for
the first
time.
In a recent breakthrough, Tim allowed Sister Jeanne to comb his hair,
something
only his father had done before.
The big challenge now is to prepare Tim to spend a night away from
home -- the
first step to readying him for life without his father. Mr. Tullis
is
supportive of these preparations. "I never thought about it before.
He was just
here and that was that," he says. "Now we have to make provisions for
him to go
on his own . . . Pretty soon, you know, I won't be around for him to
come home
to."
On a recent afternoon, Marianne Badaczewski, who provides care for
disabled
adults to give their caregivers a rest, welcomed Tim into her home.
Well-
coached by Sister Jeanne, she had popcorn waiting on the table for
him. One of
her six children sat with Tim and drew pictures with him. He ate his
dinner
quietly with the family, but was ready to get home when the sun set.
Sometimes
in his visits he is anxious and says, "Go see Daddy," she says, but
seems to be
getting more comfortable every time.
In a few weeks, Sister Jeanne will put together a small suitcase with
washcloths and a toothbrush. That way, Tim can wash his face and brush
his
teeth after dinner at Mrs. Badaczewski's house, all things that he
has done
only at home with his father's help. And for when Tim is ready, an
unused day
bed in her son's room is made up and waiting for him.