A Mother’s Story : For Ruth Pauff, Caring for Her Critically Ill Son Is a Labor of Love
“Happy birthday to you,
“Happy birthday to you,
“Happy birthday, dear Stan,
“Happy birthday to you.”
Every year she sings these words to her son, and every year they take on more meaning for her. Ruth Pauff doesn’t know how many more birthdays her son has left. So last week she was determined to make his 29th celebration the happiest ever.
For starters, she baked his favorite all-grain breakfast muffins. Then she and her husband buckled on their son’s leg braces, hoisted him from his bed, strapped him into his wheelchair and pushed him to the kitchen table. From there, he could watch his mother open the presents she had painstakingly picked out for him and register his approval with an ear-to-ear smile.
There were three VCR tapes she knew her son would like--"The Right Stuff,” “Indiana Jones and the Temple of Doom,” and a compilation of the Three Stooges. There was a scrapbook for the baseball paraphernalia he faithfully saves. And, just for fun, there were bags of peanuts-in-the-shell, which she bought with the hope that her son would eat them and feel like he was seeing a baseball game at Dodger Stadium instead of alone in his bedroom watching TV.
All His Favorites
Then she cooked his favorite dinner: Swedish meatballs, mashed potatoes and a lemon meringue pie, which she loaded with birthday candles. He was able to blow them all out.
All in all, it was a good day for Stan Pauff. And, because of that, it was an even better day for his mother. “A day for what I call ‘the warm fuzzies,’ ” she says about the feeling.
Unfortunately, such good days are rare.
The 55-year-old Glendale housewife is at the stage in life when most women say goodby to their children and hello to that phenomenon known as the empty-nest syndrome, when they stop worrying about their children’s daily needs and reawaken to their own.
In this way, one by one, her circle of friends has retired from motherhood. Everyone but her. “I didn’t plan on having as big a mother job as I’ve had,” she admits.
For Ruth Pauff is one of the countless mothers nationwide who in modest homes and unassuming neighborhoods make their mark in the world by quietly and unquestioningly devoting themselves to the care of a dependent family member.
They are not celebrities or career women or charity doyennes. They haven’t formed lobby organizations or support groups. They rarely, if ever, bask in the spotlight of public attention. They are women whose self-sacrificing love often escapes the notice of all but their family and friends, even on the one day that is theirs--Mother’s Day.
Women like Ruth Pauff, the mother of two. She saw her youngest child, Cathy, a speech pathologist, marry and move away to Stockton. But Stan is still at home because of an array of medical ailments, including cerebral palsy, brain seizures and Friedreich’s ataxia, an extraordinarily rare and incurable degenerative disorder that steadily robs him of muscle coordination. And she is his full-time attendant.
“From the very beginning, she has learned to live with the daily strain of knowing her son is going to get progressively worse, and not knowing how long this will last and to what extent,” says social worker Lupe Alle-Corliss, the Pauffs’ long-time therapist. “But no matter what struggles they’ve had as a family--and they’ve had so many--she has always been determined to try to make the best of things. That’s why my title for her is ‘supermom.’ ”
If ever anyone was born to the role, it has to be this former elementary school teacher with her gentle manner and strong will who has given up her career, her privacy and her independence to keep her only son at home. Her last real vacation with her husband was three years ago. They share an evening out only three times a month.
She’s Home All the Time
“Any man who has a job can go away from the house and just put the situation out of his mind,” says John Pauff, a 56-year-old auto parts salesman. “But the hard thing on Ruthie is that she’s home all the time. You wonder how she can keep on going. But she does.”
Most of all, she has traded away her own future so that her son might have one, as bright and hopeful as she can make it, however short. “But don’t call me a saint because I’m not,” she insists. “ Absolutely not. This is just so ordinary.
“This is what any mother would do.”
It is lunchtime. Stan Pauff, helped by his part-time home attendant Isabell Jacobo, is eating his meal while his mother looks on. “His lunch today,” she says, “is a turkey-and-cheese sandwich on whole-wheat bread, a glass of milk and, for dessert, vanilla yogurt.”
Stan interrupts her and says something unintelligible.
“ Lemon yogurt, excuse me,” his mother says with a laugh.
Can he manage the sandwich? He nods his head proudly, clutching one half with an awkward, vice-like grip.
“Sometimes the filling squeezes out,” his mother notes. Stan smiles.
Later, out of his earshot, she explains. “When you asked about the sandwich, I knew he would tell you he could eat that. And he does pretty well. But not always. Not anymore.”
Losing His Speech
She looks down. “Lately, his speaking has very much been affected. Now he sounds like he’s got oatmeal in his mouth. There are times when he says a whole paragraph and I realize I haven’t understood one word.”
What he does not talk about with her is the frustration he feels about his deteriorating condition. His mother simply knows it’s there. “All of those things--feeding himself, communicating--remind him that these are changes. These are losses,” she explains.
Ruth Pauff found them hard to accept as well. “She’s always kidding about wanting to turn in her mother’s badge,” her husband says. “But, on another level, she means it.
“Because then Stan would be out in the world or whatever and he wouldn’t have to deal with all these disappointments.”
“Being a mother. It was really important to me to do that,” she says. “My focus always was to have a family and to stay home and to take care of them.”
She thinks about what she has just said. She laughs, and adds, “I didn’t expect that it would run to like 30 years.”
The former Ruth Turnquist was one of three children raised in Carmichael, Calif., and then Los Angeles by her father, a high school shop teacher who “always had a twinkle in his eye” before he died last year, and her mother, a homemaker and “very traditional woman” who lives in Glendale.
She became Ruth Pauff when she was graduated from Occidental College in 1954 with a degree in education and a wedding ring. “That’s what you did in the ‘50s,” she says. “You got an education and then you got married.” She met her husband, a Glendale native just out of the Navy, on a blind date: “It wasn’t love at first sight for me.”
But it was for him. “I think I knew almost instantly that she was the one,” he says.
Newlyweds Off to Work
They were engaged three months later and married on Aug. 21, 1954. He went to work in his family’s auto parts business. She found employment as a teacher.
They built their house in 1956 on a bluff overlooking the San Gabriel Mountains (“We could not afford this house today,” she notes) and bought their furniture. “And now we were going to have our baby.”
First, she miscarried. When she became pregnant again soon after, “it was very normal,” she says. “But, then, during the delivery, Stan’s cord was very short, which could have cut off his oxygen. At the time, we didn’t think anything of that. Also his head was temporarily squished because of the position he’d been in.”
She remembers her obstetrician saying, ‘Don’t worry about that. There are no problems.’ ”
“Well,” she says, “it just didn’t work out that way for us.”
Her 7-pound boy was “a good-sized baby. A gorgeous baby. With a very easy-going personality. But then he just moved slowly through all of his physical development.”
Her pediatrician told her, “All babies don’t sit up at 4 months. Don’t worry about that.” But she did. “I just kept feeling that this isn’t right. That we’ve got to find out. So I changed pediatricians.”
Her son was 18 months old, and she was pregnant with her second child, when she heard the diagnosis--cerebral palsy, a disorder of the central nervous system. “I thought I was going to die,” Pauff recalls. “It is still so vivid in my memory. I remember the day. I even remember the dress I had on.”
She came home and immediately called her husband, who was at work. “All I could say was, ‘I need you to come home now.’ And so he came home and we cried a lot.”
She is weeping now, unable to fend off the tears running down her cheeks. “It is still painful remembering,” she explains, embarrassed.
Composing herself, she continues her story. “Then we started with the doctor routine.”
She wanted to have her children close together so that she could get “the baby part"--when they were most dependent--over with as quickly as possibly. “I didn’t like that schedule of somebody always needing me,” she says candidly. “And, then, of course, I felt differently because I was doing a lot of stuff for Stan.”
As he grew older, complications set in. When he started having seizures, the drug Dylantin was used to control them. When learning disabilities were confirmed, he was sent to a special school in North Hollywood. It was his mother who shuttled him back and forth.
Then, suddenly, around age 9, “he could not do the things he had been doing,” his mother says. One day, she noticed he was having trouble walking. “He’d just bump into me. At first, I thought, ‘Well, you’re just not paying attention.’ ”
She took him for tests. At 13, he was diagnosed as having Friedreich’s ataxia. “I think I probably knew that whatever it turned out to be, it wasn’t going to be any good. And so the day the doctor finally put a label on it, it was not a wonderful day.”
Little is known about the hereditary disorder. There is not even a test to conclusively determine when someone is afflicted. “But we chose not to chase around the world to see if this diagnosis was correct,” she recalls. “We chose to accept this.”
Nor could anyone tell the family what to expect. “We were told that, for some, the onset is like a freight train, and they’re gone very quickly. For others, it’s deteriorate and plateau, deteriorate and plateau, which has been more like Stan,” she says.
Her house is comfortable, warm, inviting. The hallways are completely given over to portraits of great-grandparents, grandparents, relatives and, of course, her children. They are almost like shrines celebrating an unusually close family.
Conducting a tour of her son’s room, she proudly points to his treasures and trophies. “First is this big fish,” she says about a mounted rainbow trout on the wall. “The envy of all fisherman, which Stan caught when we were camping in Oregon.”
She shows off a poster of her son’s VIP visit to Dodger Stadium. “A friend arranged for Stan to meet Tommy Lasorda and a number of players and get all these autographs. And look at him,” she says, turning to face the man in the wheelchair at her side. “He’s still grinning about it seven years later.”
It is his smile--the kind that overtakes a person’s face and lights up a room--which most people remember about him. “People have always taken to Stan. There’s just some charm or twinkle there,” his father says.
Ruth Pauff agrees. “I think people realize that even though his world is difficult, he is managing not to become a grumpy person. And we’ve worked a lot on that.”
Knowing that her son’s condition was going to get worse, she decided when he was young that the family needed to start “building memories. Because there would be a time when that was all there was going to be.”
She found a horse ranch outside Bakersfield where handicapped children were taught to ride. So, every Sunday, the whole family took lessons. “Stan couldn’t hike or climb by himself,” she says. “But on a horse he could go up into the mountains.”
While he could still walk--"unstable but at least upright"--there were family outings to surrounding states. Even after he was graduated from high school in 1978, and went from a walker to a wheelchair, the excursions continued.
Just before surgery to fuse his spine, he went riding again. “We knew,” his mother says, “that this would be the last time he would be able to do that.”
It was the most difficult decision she had ever had to make: whether to let her son undergo the risky operation. Stan Pauff was experiencing a great deal of pain because his spine was collapsing. Eventually, the strain on his heart and lungs would threaten his life, doctors said. The surgery--which involved inserting two metal rods in his spine--might prolong it. But of the three young people with Friedreich’s ataxia who had been operated on, only one had survived.
“The choices were all bad,” the mother recalls. “I’ve learned they continue to be all bad. Of the bad ones, you decide which one you’re going to choose. I finally took the position that it would be better for him not to survive the operation than not to have it.”
When he turned 18, Stan Pauff’s first act as an adult was to sign the surgery consent forms.
Afterward, he lay in a body cast for three months. It was his mother’s idea to rent a 30-foot motor home and go camping in Canada. “My thinking was at least he could see something going by as we were driving. And I remember Cathy pushing his wheelchair around the campgrounds.”
The mother falls silent, remembering.
“Still, those were things that the four of us tried to do together. So that, when we looked back, all of the things weren’t just tough and ugly.”
She is sitting outside on the patio now, rocking in the shade with the family dog in her lap and looking out at the small pool that was built for her son in 1976. “Stan used it a lot when he could get in and out. It was the one place where he wasn’t fighting gravity.
“Now he would have to have one of those big slings.”
She stares at the clear blue water, and her face registers pain. The pool has become a grim reminder of the lowest point in her son’s life--the day he decided to commit suicide.
After graduating from high school, he went to work in his father’s warehouse helping to fill orders. Then a financial reversal forced it to close. Her son fell into a deep depression. “You see, he felt a real part of the world when he was working. And when that wasn’t available to him anymore, he became very suicidal.”
He told his parents later he planned to roll his wheelchair into the pool.
Once again, his mother came to his rescue. “A light went off and I knew we had to do something about this. I was feeling very frantic.” To help the family through the crisis, she sought help at a state regional center for the disabled. She also arranged for her son to get counseling at a community health center.
It was the start of a new experience for her: relying on other people for help. “Using public funds and public facilities was something I had to learn how to do. We were people who were used to taking care of ourselves. But to do this privately would have been just impossible practically and financially.”
She also sought counseling for herself. “I learned tons of stuff. I learned that when Stan would get angry and frustrated, I was there trying to fix it because I wanted to make it right for all of us. By doing that, I was escalating the whole thing and my blood pressure was going up. So I have learned to step back from that.”
She pauses, looking sheepish. “I don’t always succeed.”
Many would feel that life dealt her a rotten hand.
“I’d rather have had different ones,” she concedes. “But you look around and nobody gets through life without lumps.”
She recalls one friend whose son has cancer. Another whose mother has emphysema. And a third whose parent has Alzheimer’s disease. “You just go down the list, and nobody gets through life easy. So I can’t really say, ‘Poor me.’ ”
When she does get depressed--"and she’s had some rough ups and downs recently,” her husband notes--she reaches for the gift her brother sent her recently: a small drawstring bag filled with shiny gold stars of varying sizes. There was also a note, saying, “These are to be used at your own discretion,”
The day it arrived, she looked for the biggest star she could find.
One reason, among others, is that she is embroiled in a benefits battle with In-Home Supportive Services, a county-administered, state-funded program, which turned down her request this year for more help meeting her son’s almost round-the-clock needs.
In his case, the program partially funds five hours of care Monday through Friday, leaving the bulk of the workload to his parents, including a half-dozen back-breaking trips to the toilet.
His mother is no longer strong enough to lift her 6-foot, 150-pound son, and his father has badly strained himself doing the job. She finds some irony in the fact that funding for her son would be almost double if she placed him in a nursing home.
“We always know that one day his care may become so difficult that we can’t have him here,” she explains. “What I’m aiming for now is a weekend live-in person that would give us some flexibility.”
An appeals hearing is scheduled for Thursday.
Meanwhile, her son’s energy is fading. He hardly has the strength to go out of the house more than once a week. As a result, his mother’s universe is shrinking along with his. “It’s getting obvious to all of us,” says her good friend Maureen Abbott. “I don’t even know if she realizes how small her world is now.”
She tries to “reward” herself with a dressmaking class and an art history lecture once a week, and maybe an occasional lunch with the gals. But even these trips can prove painful. She was having lunch with her sister, she says, when two young men about her son’s age entered the coffee shop.
“They were just nice, clean-cut kids, and they sat down and they were ordering their hamburgers, and I thought, ‘Stan will never get to do this.’
“And that, that , is what the hurt is all about.”
Stan Pauff will not be able to read this article about his mother. His eyes are no longer able to follow the printed word. So Ruth Pauff will sit by his bedside and, just as she reads the newspaper accounts of Dodger games won and lost, she will read her story to him.
Only, today, she will leave out the parts that may be too painful for him to hear.
Because that is how a mother loves.