Mom’s struggles show challenges of guardianship
Jason Evans was eating his way toward an early death, and his weight ballooned to more than 500 pounds. Sarah Evans, his mom and guardian, was dealing with a divorce and job loss, on top of the daily trial of trying to keep her autistic son from raiding the kitchen. Like many other family guardians, she simply got overwhelmed. She admits she failed him, but she’s working to stay a part of his life. •
When caseworkers arrived at Susan Evans’ roach-infested apartment, they found her 500-pound son sprawled on the kitchen floor in front of the open refrigerator reaching for food. • Jason Evans had gained more than 100 pounds in seven months, and the Franklin County developmental-disabilities-staff was worried that he was eating his way to an early grave.
“That’s the day I realized how bad I had allowed things to get for Jason,” said Susan, weeping as she recalled the memory. “I failed my son.”
Jason, 31, has mental disabilities and autism. He had always eaten everything he could find while also battling his weight, but Susan gave up helping him with that fight. After serving as her son’s guardian for nearly seven years, she stopped monitoring his diet.
Susan was one of many family guardians who are overwhelmed with the responsibility of caring for a loved one. It’s even more challenging for guardians of people with developmental disabilities, who often require 24-hour care.
About 70 percent of Franklin County’s guardians care for someone with a mental illness or disability, a Dispatch analysis of probate court records found.
When developmentally disabled children turn 18, many need a legal guardian, and Jason’s retired grandmother served as his decision-maker until her death in 2005.
His mother took over, but she fired a home health-care worker in 2010, tried to deal with Jason’s needs alone and ignored directions from his caseworkers.
A Franklin County Probate Court magistrate removed her as guardian in March 2012.
Jason now has Groveport lawyer Erin Sanford as a guardian. And along with a team of county developmental-disabilities-board workers and a live-in home heath-care worker in his Columbus apartment, they have saved him from a path of self-destruction.
But his fate and his relationship with his mom, now reduced to supervised visits, have always been controlled by his weight.
“The pressure of caring for someone 24 hours every day can be too much pressure for anyone,” Sanford said. “Susan made mistakes, but I still want her to be Mom.”
280 pounds
They stood almost in darkness behind the curtain as the principal of Eastmoor Academy, a Columbus high school, read the names of the graduates in the Class of 2000. Jason was dressed in a blue cap and gown, just like the other students, and his mother stood beside him in her best blue dress.
Jason peeked around the curtain and saw a crowd in the auditorium, and his grip on Susan’s hand grew tighter. Susan calmed her son, as she had done many times since the day his autism was diagnosed at age 2.
“Robert Jason Anthony Evans,” the principal called out.
Jason took three steps onto the stage and turned back. The principal called his name again, and Jason took only one step. As he always has done, Jason faced the anxiety with a stare and by parroting his mom.
Then, the 18-year-old took off his cap and placed it on his mom’s head. Susan walked onto the stage to accept her son’s diploma. Jason was among about 10 students with disabilities who earned a “completion” degree at the graduation.
“Baby, congratulations,” said Susan, handing her son the piece of paper bound by a red ribbon. “You graduated.”
Jason’s stare blossomed into a smile, and he bear-hugged a mother who was dripping tears on her son’s blue gown.
“We had some good days,” Susan said. “It wasn’t all hard or bad for us.”
463 pounds
Jason often waited until his mother fell sleep before sneaking into the kitchen and attacking whatever he could find in the refrigerator or cupboards.
He ate until his body wouldn’t accept more leftovers, TV dinners or cookies. And he gained up to 14 pounds in a week.
For years, Susan, Jason’s stepfather or a home health-care worker would padlock the fridge or lock up the pantry at night. Susan also tried to control Jason’s weight by purchasing healthy food and forcing him to follow an exercise schedule.
But by June 2011, after her divorce and the loss of her job, Susan had stopped caring about Jason’s daily regimen.
She felt disrespected by Jason’s home health-care worker, so she fired him. She believed he was sexist and wouldn’t communicate with her directly about Jason’s care except to criticize her for being a bad mother.
It all resulted in Jason’s gaining 127 pounds in about a year.
Nurses and caseworkers were writing letters of concern about Jason and accused Susan of neglect. One of those letters went to the court, but no one investigated to determine whether she was still fit to be his guardian.
About six months later, the Franklin County disabilities board opened its own investigation, which led social workers to find Jason on the kitchen floor — and Susan’s violent boyfriend hiding in a closet.
Susan now admits that the boyfriend beat her, but she doesn’t believe he abused Jason.
When the boyfriend’s name was mentioned, Jason simply uttered, “Snake.”
513 pounds
Susan stood up in a probate courtroom and pleaded with the magistrate for a second chance to remain her son’s legal guardian
“I got in over my head; I made some bad choices,” she said. “I love my son.”
The magistrate, investigator and caseworker were sympathetic but unmoved. They told Susan that if she got her life together, she might someday be her son’s caretaker again, but that didn’t console her.
The magistrate said she had no choice. Jason’s weight was at an all-time high, and the boyfriend with a criminal record was still in Susan’s life. She removed Susan as guardian.
When Susan arrived home, she found an eviction notice. She had lost her job and her house, and then caseworkers arrived to collect Jason’s clothing and possessions.
“March 6, 2012, was the worst day of my life,” she said. “I lost my whole life that day.”
265 pounds
Jason hit the floor and did five pushups. Then he jogged in place. And then came a couple of vertical jumps with his hands
“The pressure of caring for someone 24 hours every day can be too much pressure for anyone. Susan made mistakes, but I still want her to be Mom.” — Guardian Erin Sanford
in the air as he sang along with Pharrell Williams and his song Happy.
For the people who help care for Jason at ARC Industries South, a county-run workshop for adults with developmental disabilities, the scene from this spring would have seemed impossible two years ago.
“Jason could barely walk from the bus into our building,” said Kurt Smith, the facility director. “It was a struggle to do anything for him. His progress has been amazing.”
Jason now lives in an apartment with a roommate and a home health-care worker who is always there to assist both of them. His guardian and his developmental-disabilities team have created a diet plan, strict controls on his access to food and an exercise program that has helped him shed almost half of his body weight.
“Good, good, good,” Jason repeats when asked how his life is going.
His mother’s life has improved, too. The abusive boyfriend is gone. She works at a church day-care center. And she has regular, supervised visits with her son.
She is thrilled with her son’s transformation but remains haunted by her own failings. She likes Sanford’s influence on her son but hopes to become his guardian again.
On a recent visit, Susan sat with Jason under a tree and, as she has done a thousand times before, wondered what was going through her son’s mind. Back in the apartment, he began typing on his new tablet: “I got an idea, I got an idea.”
Susan didn’t understand until he then typed, “Susan Evans visit me — that’s my great idea.”
Jason wiped his mom’s tears away before it was time to say goodbye.
“Not a day goes by I don’t regret the things that happened,” she said. “Being a guardian is hard sometimes. I lost that role, but at least I didn’t lose my son’s love.”