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Parents Devoted
to a Disabled Child Confront Old Age
Failing strength may force the communal care they've dreaded
for so long.
by Clare
Ansberry, Wall Street Journal, January 7, 2004
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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.
Limited Options
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 counseling 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.
Ramaeckers Family
Mia Ramaeckers, 70, and her husband Martin, 72, sit in the
family's home with daughter Mary Lou, 37, who can't walk, talk,
east solid foods or swallow.
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."
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.
On Their Own
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.
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