Parents see their own health spiral as their children’s mental illnesses worsen

If you or someone you know may be experiencing a mental health crisis, contact the 988 Suicide & Crisis Lifeline by dialing “988” or the Crisis Text Line by texting “HOME” to 741741.

After her teenage daughter attempted suicide and began roaming emergency rooms and mental health programs for the past three years, Sarah Delarosa noticed her own health had also declined.

She suffered mini-strokes and stomach bleeding, said the mother of four from Corpus Christi, Texas. To make matters worse, her daughter’s failing behavioral and mental health caused Delarosa to miss hours of her home care work, losing the income needed to support her family.

“Access to help, when it’s needed, is not available,” Delarosa said of the desperation she felt as she sought support for Amanda, 16, who received a diagnosis of bipolar disorder, oppositional defiant disorder, and attention deficit/hyperactivity disorder. . Amanda has occasionally burst out in anger or smashed light bulbs and used the broken glass to cut herself.

Delarosa often feels overwhelmed, and she has noticed her youngest son taking action. “Now we have a whole family that needs help,” she said.

A nationwide shortage of mental health care providers and the search for affordable care has exacerbated pressure on parents, often the primary caregivers who maintain their children’s health and well-being. Their daily struggle has led to its own health crisis, say psychologists, researchers and family advocates.

As parents navigate gaps in the mental health care system, stress can begin to impact physical and mental health that disrupts their ability to continue providing care, said Christine Crawford, associate medical director at the National Alliance on Mental Illness, an advocacy group that helps families find care. Parents devote their energy to helping their children, often at the expense of their own health, Crawford said.

“When you worry about whether or not your child will survive the day, you are constantly on edge,” she said. “Your fight or flight is constantly on.”

And the number of parents in crisis is greater than it seems.

Recent reports from the Centers for Disease Control and Prevention, the Surgeon General’s Office, and medical providers all show an alarming number of children in the United States are experiencing serious mental health issues. About 40% of American parents with children under 18 say they are extremely or very worried that their children might experience anxiety or depression at some point, according to a January study from the Pew Research Center.

Evidence-Based Therapies to Treat a Child’s Problems Mental Health should include parents, say the researchers and pediatric mental health specialists. But the focus on adult carers and their anxiety and stress is too often insufficient. For example, parent-child interaction therapy helps parents manage their young child’s behavior to prevent more serious problems in the child later. Although this may help the child, it does not directly support the health of the parents.

“I have so many parents sitting across from me on the couch crying,” said Danielle Martinez, a behavioral health specialist at Driscoll Children’s Hospital in Corpus Christi. The hospital is creating peer support groups, which will launch in the fall, for family members whose children are in the care of the facility.

“They felt so alone, felt like bad parents, felt like giving up,” Martinez said, “and then felt guilty for wanting to give up.”

When parents’ mental and physical health deteriorates, it complicates their ability to prevent the child’s condition from worsening, said Mary Ann McCabe, board member of the American Psychological Association, clinical professor Fellow in Pediatrics at the George Washington. University School of Medicine and psychologist in independent clinical practice. Parents are a child’s most important resource and should be a concern, she said.

Delarosa said many residential treatment centers cited a shortage of providers in refusing to admit her daughter. Amanda, who is covered by Medicaid, would be on weeks-long waiting lists as she “went out of control”, ran away from home and disappeared for days, her mother said.

In April, Amanda was admitted to a residential treatment facility nearly 200 miles away in San Marcos, Texas. With Amanda out, Delarosa said, she had a “chance to breathe,” but the reprieve would be temporary. She wants to see a therapist but hasn’t had time to care for Amanda and her youngest child, a son. Before Amanda left for treatment, her 7-year-old brother started swearing, throwing and breaking things around the house and saying things like he wished he weren’t alive, although his behaviors calmed down during her sister’s absence.

Other parents also said they felt pressure on their mental and physical health.

“Children are in crisis. But families are also in crisis,” said Robin Gurwitch, professor of psychiatry and behavioral sciences at Duke University. “They struggle to figure out the best way to help their kids in a system that doesn’t come with a textbook.”

Brandon Masters, a college principal in San Antonio, developed a rash on the back of his arms and neck last year that his doctor said was stress-related.

Brandon Masters
Brandon Masters at his home in San Antonio. Masters spent about $22,000 last year caring for his teenage son Braylon, who has bipolar disorder. When Masters developed a rash on the back of his arms and neck last year, his doctor told him it was stress-related.

Lisa Krantz for KFF Health News

Although insured by his job, Masters estimates he paid about $22,000 last year for the care of his teenage son Braylon, who spent 60 days in residential treatment centers in Texas and California. following a diagnosis of bipolar disorder. Braylon spent an additional month in juvenile detention later in 2022 after biting his father and brandishing a knife. So far this year Braylon, now 17, has attempted suicide twice, but Masters has been unable to find a residential treatment center he can afford that will admit Braylon. .

“There’s this huge wave of anxiety that washes over me that makes it hard to be around him,” Masters said.

Anne Grady’s 20-year-old son has autism, severe mood disorders, developmental delays and other conditions. For nearly 17 years, he has been on a waiting list in Texas for full-time care.

Grady, who lives in a suburb of Austin, Texas, developed a tumor in her salivary glands and temporary facial paralysis, which added to the stress she faced caring for her son.

“It’s mentally draining for families,” Grady said. Lack of care “punishes children and punishes families”, she said.

Medicaid is the state-federal program that pays medical and other health-related bills for low-income and disabled people. Yet while many state Medicaid programs pay for family therapy and parenting programs, they don’t treat the parent as an individual patient affected by their child’s health as part of a child’s plan, a said Elisabeth Burak, senior researcher at Georgetown University’s Center for Children and Families. . Parents who live in one of the 10 states that haven’t expanded Medicaid, including Texas, face an additional challenge getting care for their own mental health.

Yet states are beginning to recognize that caregivers need more support. Many states allow Medicaid to cover the services of peer specialists or certified family navigators, who have experience raising a child with mental illness and additional training to guide other families. In July, California provided funds to support parents through a children’s mental health initiative.

“The most important thing we should be giving families is a sense of hope that things will get better,” Gurwitch said. Instead, the lack of quality mental health care services for young people exacerbates their risk of illness. Without proper help, these conditions follow a child — and their parents — for years, she said.

As Amanda returns home from the residential treatment program this month, Delarosa worries she is not equipped to handle her daughter’s bouts of depression.

“It’s the same thing over and over, nonstop,” Delarosa said. “I drove myself crazy.”

When Grady’s son turned 18, she acquired continued guardianship so she could continue to arrange his care outside of their home. “I love him more than anything, but I can’t protect him,” she said.

Masters, whose skin issues have worsened, is just trying to get Braylon through to his senior year of high school, which begins this month. He also renews his search for a residential treatment center, as Braylon’s negative behaviors have escalated.

“When they’re born, you have all these dreams for your kids,” Masters said. Instead, the medical professionals who cared for Braylon told Masters he needed to be ready to care for his son even after he graduated from high school. “No parent wants to hear that,” he said.

KFF Health News is a national newsroom that produces in-depth journalism on health issues and is one of the major operating programs of KFF — the independent source for health policy research, polling and journalism.

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