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Destined To Be Caregivers
100 PERCENT CARE
Minutes after welcoming the Cap Radio documentary team into her home for one of the first times, Judy Lee gets to the hard work of being a mom. Her son, Justin, has wet his diaper. So, as any mom would, she efficiently strips off the soiled diaper and replaces it with a fresh one, along with a new outfit for Justin. The event would be routine and unremarkable, except for one glaring fact… Justin is almost sixteen. And what would have been a relatively easy task for the parent of a small child has left Judy winded and red-faced.
It’s just another day of taking care of her son, who was born with cerebral palsy. Justin is missing parts of his brain. He can’t talk, he can’t walk, and he’ll always require 100 percent care. Judy’s days largely consist of making sure Justin gets that care. Today it’s physical therapy. Shortly after he’s cleaned up, Justin’s therapist, Rika Matsuda, comes bounding into the house. Her energy instantly overtakes the room and her high, melodic voice fills the air as she begins a running conversation with Justin and Judy.
Rika is a little woman, and Judy isn’t much bigger. But, working together, the two of them position Justin on the floor and work on stretching his muscles. After a few minutes Rika and Judy lift Justin back on to the couch and wrap him in a collection of slings secured to a hydraulic lift that runs on overhead tracks. The lift carries him to another room where they transfer him into a wheeled device they call a stander. It allows Justin to gradually be cranked into a standing position and rolled around. Once he’s properly situated they take turns pushing him back and forth and spinning him across the room as music drifts from a CD player. By the end of the hour the room is warm and Judy and Rika are breathing hard.
“As he gets bigger, the physical challenges get harder,” Judy says. She doesn’t have time to go to the gym. Taking care of Justin, who’s nearly 100 pounds, is her workout. “My dad used to say, if you start out lifting a baby elephant and you lift them every single day, then pretty soon you can lift a full-grown elephant.”
Judy and her husband James have been lifting Justin everyday for nearly 16 years.
READY FOR THE CHALLENGE
James and Judy met when they were both working for the State of California. They fell in love and married. They liked to take short road trips together and explore the area around them. For their honeymoon the couple drove up to Canada, stopping to explore Oregon and Washington along the way. It was the kind of trip James could envision taking with their kids one day.
Five years into their marriage Judy got pregnant with their much-longed for baby. The couple was told everything was developing as it should. The baby’s head might be a bit small, but it wasn’t anything to worry about. And Judy didn’t worry. She and her four siblings had been small and they were fine. So it was a shock when Justin was born and there were serious medical problems.
“They did an ultrasound of his head right away,” Judy says, “I remember the doctor was crying as he was explaining to us that (Justin) was missing certain parts of his brain.”
The diagnosis of cerebral palsy was devastating for James and Judy. In addition, they were told Justin has a seizure disorder. They weren’t sure what his diagnosis meant for Justin. Would he be able to walk? Communicate with them? Go to school? Yet with the fear and uncertainty, the love they felt for their son came before everything else. Judy says her life had been relatively easy up to that point and she felt oddly prepared to take on the task of caring for Justin.
“When we were planning our family, for some reason I just thought… the thought that came into my head is I’m ready for this,” she says. “I’m ready for this challenge. I’m ready for this work.”
James felt much the same way. He says he’s always enjoyed helping people. And he recalled a man at a support group once asking him if he hated God because of Justin’s disability.
“I said, ‘No, I’m actually thankful that He chose us to take care of Justin.’”
Faith plays a major role in the Lee’s life. Judy was raised Catholic, and James converted after they were married. Judy wears a pendant with a portrait of the Blessed Virgin Mary around her neck and every Sunday the family attends Mass at Sacred Heart Catholic Church in Sacramento.
“I think our faith has been a big help in just getting through the whole acceptance and kind of getting over that initial grief and just looking at the blessings instead,” Judy says. “Justin has been going to church ever since he was born and he loves it.”
LIVING WITH UNCERTAINTY
Still, a strong faith doesn’t mean the Lees don’t face challenges. The most immediate concern is the physical toll of caring for Justin. As Justin gets taller and heavier, it’s not as easy for his parents to move him. And, at 50 and 51 years old, they worry they may hurt their backs lifting him.
“When he was little, we could just take him everywhere and let him experience a lot of different things in life,” Judy says. Now moving Justin requires a large wheelchair, a special van and an elaborate lift system in the Lee’s home. With James at work much of the week, it’s not easy for Judy to take Justin out alone.
“It’s already isolating when you have a child with special needs, and so what you’re able to do is already small,” Judy says. “So, as he gets bigger and that narrows even further, then, yeah, it’s a big adjustment. In a way you kind of grieve that loss of not being able to do even the things that you could previously do with him.”
Sleep deprivation is also something the Lees have learned to live with. Because Justin is silent during his seizures, he sleeps in bed with his parents so they will know when he needs help. Eight hours of uninterrupted sleep is rare.
“You know that two-hour window when you first fall asleep? It’s the worst time to get up,” James says. “I fall asleep sitting upright okay.”
Aside from the day-to-day concerns, James worries about what will happen when he and Judy get too old to care for Justin.
“I’m sure there’s going to come a time when we’re going to need to be cared for ourselves, so there’s going to be three of us in here all needing some sort of care,” he says. “I don’t know what’s going to happen then. I really don’t know.”
There’s a lot they don’t know. They don’t know how much Justin understands. They don’t know how long he’ll live. They don’t know why he’s had an increasing number of seizures, which Judy says, steal Justin away for awhile and slow his development.
“That’s one of the hardest things I think of taking care of a child with severe needs,” Judy says. “You don’t know what’s going on and they can’t tell you.”
The Lees may also be facing some financial uncertainty. Because of the severity of Justin’s disability he qualifies for California’s In- Home Supportive Services program. IHSS pays Judy about $10 an hour to provide in-home care for Justin. Judy says the program allows them to keep Justin at home and saves the state the cost of caring for him in an institution.
"They have found a way to allocate a little bit of money to the parents to help them offset the costs they were incurring,” she says. “Overall it’s a win-win situation for both the family and the state.”
But proposed budget cuts to the program might reduce the number of hours for which Judy will be compensated. She’s currently paid for 283 hours a month. Under proposed changes to IHSS rules, she would be paid for about half that. The Lees say a cutback in hours would be a huge financial blow. But the fate of the program likely won’t be known until July, when the new state budget is approved.
So the Lees try to control what they can. Every week brings a parade of professionals to the house. Physical therapists, occupational therapists, speech therapists, music therapists, teachers. All there to help Justin reach his full potential.
“While physically we know he has so many restrictions, my hope is that cognitively he’s able to express what he knows, express his needs and his wants,” Judy says. “Especially as we get older and other people will be naturally having to care for him.”
James says he doesn’t get frustrated Justin can’t do the same things a typical teenager can do. But he does wish he knew what his son was thinking.
“I wish I could read his mind,” James says. “We know there’s a lot more going on than he’s able to express physically.”
James has a full-time job with the state. He says his managers have allowed some flexibility in his schedule and that’s been invaluable in taking care of Justin. It’s one of the reasons he’s chosen to stay in his current job, rather than trying to move higher. He works four nine-hour days and one four-hour day. And he has a co-worker who covers for him if there’s an emergency.
“The money isn’t everything in that respect,” James says. “It’s nice having a place where you don’t feel stressed-out, like ‘No, you need to go to this meeting and you can’t go home even though something’s happening at home.’”
Still, James says he looks forward to retiring so he can spend more time with Judy and Justin. He’d love for them to be able to travel together, like he and Judy used to do when they first got married. In the meantime, he has several hobbies that help relieve stress. James plays the piano, dabbles in video editing and does D-I-Y projects around the house.
Judy has fewer hobbies, preferring to unwind by socializing with her friends, though much of that takes place over the Internet. Still, she says she’s not jealous James gets out of the house more than she does.
“I think James needs to get out every day and I’m actually happiest when I’m with Justin,” she says. “I’m okay with being home a lot because I get a lot of joy being with Justin.”
James and Judy haven’t had regular relief for the 24/7 care giving since the woman who used to stay with Justin on occasional weekends moved away. And the deaths of Judy’s mother in 2006 and her father in 2013 have left two big holes in the Lee’s support system.
“They provided a high amount of emotional, physical, moral support that’s not there anymore,” Judy says.
Still, Judy says, through all the stressful times, the couple hasn’t doubted they can create a good life for their family.
“I think it’s not so much that we can’t do this, as that we can’t do it alone,” Judy says. “Most of the time, it’s James and I figuring things out. And most of the time we can resolve what comes along because we know Justin so well and we can read him so well.”
Both say having Justin has brought them closer together.
“We’re as strong, from the beginning, as we are now,” James said. “It hasn’t weakened (our marriage). Maybe it strengthened it.”
“We’ve become a good team,” Judy said. “We kind of naturally fell into different roles, kind of just what our strengths were.”
They say it would catastrophic for their family if something was to happen to either of them.
“I don’t know how I would survive without James being there as a husband and father to Justin to deal with everything that we have to deal with every day,” Judy said.
But that’s a thought that is far from their minds on the day of Justin’s 16th birthday party. The Lees have rented out a roller-skating rink and invited family and friends, including many other children with disabilities. Judy laughs as she pushes Justin’s chair around the neon-colored rink and wonders if her legs will be sore the next day. James is in full video-producing mode as he runs around attaching Go-PRO Cameras to the wheelchairs of various kids.
It’s a fun, joyous day filled with presents and music and fun. And yet his parents can’t help but reflect on what might have been. If Justin were a typical kid he might be getting a new car this year. Instead he got new wheelchair.
“I think every phase of his growing up there’s something that triggers you going through this grief cycle all over again,” Judy said.
“Like when he was a baby and then all the kids started going to kindergarten and that wasn’t our path. And of course it’s always sad because he’s not going to get married and we’re not going to have grandchildren.”
Yet both Judy and James insist they wouldn’t change their situation. They would make the seizures stop if they could. They would relieve any physical pain Justin is feeling. But they wouldn’t trade him for a typical child.
“We perfectly accept him,” James said. “Even if we could change it, I guess that could change him.”
“I think Justin and other kids who have disabilities, I think they’re also giving us an opportunity to show what we’re made of,” Judy said. “What are our priorities? Do we have compassion? You know, it’s not all about me. It shouldn’t be so much about ourselves but what can we do for other people.”
Photos by: Andrew Nixon / Capital Public Radio
Video by: James Lee