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Mental Blocks, Part 10: Parents of Mentally Ill Adults Face Desperate Struggle
01/07/2014   Reported By: Patty B. Wight

When you think about a safety net for people with serious mental illness, psychiatric hospitals and crisis services probably come to mind. But there is something else that's often overlooked: a parent's home. Some adult children with mental illness return home to parents who may not have the skills to support them, and no legal rights to know the details or provide input for their child's treatment. As part of our series, Mental Blocks, Patty Wight has the stories of three families who have each struggled to find care for their adult children, sometimes with tragic consequences.

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Kids are bound to rebel. That's what Beth and Jim - who don't want to use their last name - thought when their son started college five years ago. He experimented with drugs and started to behave differently. He was glassy-eyed and anxious.

They hoped it was a phase. And then his grades slipped. Beth and Jim decided he should return home to Maine, but things got worse. One night they got a call from police that their car - which their son was using - was found abandoned on the side of a road, engine running, at 4:00 in the morning.

"He turned up about 12 hours later," Jim says, "and had been just wandering in the woods of New Gloucester, actually, sort of, I don't know..."

"Well, he basically had had a psychotic break," Beth says.

Their son was hearing voices and having hallucinations. Beth and Jim convinced him to go to rehab and get counseling. For the past few years, they say, he's gone through cycles: He'll stabilize for a few months, and then relapse.

Things came to a head last summer when he led police on a car chase through three towns and was committed to a psychiatric hospital as a result. Beth says she thought her son would finally get the treatment he needed. But she was shocked when the hospital released him early.

"We don't even know what happened," she says. "Because he's 24, nobody has to say anything to us. And if he decides that he doesn't want the doctors to talk to us, then we have nothing - we have no recourse. But yet we're the ones expected to take care of him. Because when they release him, they come to us and say, 'Well, are you going to pick him up? Are you going to do this, are you going to do that?' And that's where the system fails."

Beth and Jim are not alone in their struggle to find mental health care for their adult child. Other parents have adopted gut-wrenching strategies that may seem counter-intuitive to access treatment. Cheryl Ramsay is the mother of adult twin boys who developed mental illness starting at age 13. When they're in crisis and on the cusp of accessing treatment, Ramsay says she's learned to answer a seemingly simple question in a way she never would have expected. The question is: Can your child come back home to live with you?

"It feels like an impossible question to answer, because you want to say, 'Yes, of course they can come back home." But you know that your child - your loved one - needs helps, so you're having to say 'no,' and - it's just so contradictory."

Closing her door is the way to open the system's door to get her sons the treatment they need. Ramsay says she also learned to get an Advanced Health Care Directive for one of her sons while he was an adolescent. That allows her to have a say in his treatment when he is in acute crisis.

But she says the first barrier she faced in getting her sons support was shedding her own stigma about mental illness. "My husband's a police officer, and so I think we kept it guarded - you know, the stigma around it, and, you know, those things don't happen to people in the world of working with those people."

There are limited resources for families dealing with mental illness. Ramsay says it was after one son's ninth hospitalization that she heard about the National Alliance on Mental Illness in Maine. She and her husband took one of the family courses, which she says finally helped them understand what was happening to their boys.

Donna Betts 1Many of the teachers are parents like Donna Betts (right) who have gone through similar situations. Her son developed depression when he was 23. "On a day-to-day basis, you live with your stomach tied in knots," she says.

Her son was living at home at the time, and Betts urged him to seek help. But he refused. She ultimately called a crisis number to ask if anyone could come to their home and provide guidance. She says she was told to just call crisis again when she needed support.

"And I remember getting off the phone and I just started crying," she says. Josh Graduation"And I was thinking to myself, 'What do we have to do, just sit here and watch Josh (left) die?' And that's what happened. He died from suicide four-and-a-half years ago."

It was two years after his death that Betts learned about NAMI. She's also started a Web site called "Family Hope," which helps families navigate mental health resources in Maine.

Betts says she gets lots of calls from worried parents facing similar situations. Of the 100 calls she received last year, she says about 90 percent were from families with adult male children between ages 20 and 30.

Which brings us back to Beth and Jim. They say they appreciate the support they get from Family Hope and NAMI Maine, but Beth says it doesn't eliminate the frustration of getting their son help. He has a court date coming up for the car chase. Her hope is that will lead to treatment. In the meantime, she says there ought to be a balance between patient rights and needs.

"This is invisible. They don't see that he's not working correctly, that he's not functioning correctly," Beth says. "They don't see it, so they let him decide. And that's not fair. It's not fair to him, because he's not having the best and the safest life that he can have. And to me, that's more of a right than him saying, 'I don't want help.'"

Beth says she hears success stories of people recovering from mental illness. She'd like her son to be one of them.

Photos:  Courtesy Donna Betts


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