Parents frustrated by futile search for mental health care for daughter
Darkness was creeping over the rainy April evening when Dawn and Tim Woody got the call that their 24-year-old daughter had overdosed and been taken to a Wake County emergency department.
Frantic, the couple headed toward Raleigh from their home in the far reaches of Apex. On the way, Tim called WakeBrook to see whether the mental health facility had a bed for their child, whose bipolar disease manifests itself in substance abuse, cutting and an eating disorder. WakeBrook was full.
At the hospital, the Woodys found their incapacitated daughter on a bed in the emergency department with no privacy curtains pulled. A doctor explained that, though her vital signs were abnormal, their daughter was having a mental health event, not a medical one, and he would send the mental health counselor on duty.
The counselor arrived with three stapled packets. “Holly Hill is behind us, WakeBrook is across the street and then there’s Butner,” Dawn remembers the counselor saying.
Are there any beds?
We don’t know.
Is this all you are going to do?
We don’t offer detox here.
You’re going to give her these sheets of paper and let her walk out into the rainy night? What if her parents weren’t here?
We don’t offer detox here.
How would she get to Butner?
We don’t provide transportation or detox here.
As the Woodys’ disbelief and agitation mounted, a call came from WakeBrook to Tim’s cellphone. A bed had opened up, but they would have to come immediately. It’s first-come-first-served, and in North Carolina innumerable people in distress are always waiting. They grabbed their daughter and ran.
This, ladies and gentlemen, is your mental health system at work.
“If my daughter had been having a seizure or had been in a diabetic coma, or having a heart attack, her treatment and aftercare would have been vastly different,” Dawn says, getting to the crux of it.
How long will we tolerate treating people with brain sicknesses as if they don’t deserve the same level of concern, intervention, therapy and rehabilitation as those with heart sicknesses?
Because the Woodys are a middle class family with insurance and their daughter is not on Medicaid, because the insurance company will pay only for short stints in mental health facilities, because North Carolina has so very few therapeutic communities that help people leaving those facilities transition back to life, their beloved daughter has voluntarily been in and out of 22 facilities in nearly five years.
‘Eat a sandwich, don’t do drugs’
It was Christmas break of her sophomore year at UNC-Asheville when her concerned parents confronted her about her emaciated condition. She admitted that she had been self-medicating her extreme anxiety with pain pills and agreed to enter a mental health facility.
“She stayed 10 days,” says Dawn, the volunteer coordinator at UNC Hospital in Chapel Hill. “They sent her back home with us. Told her to call the insurance company and they’ll help you find aftercare. She was not diagnosed, not given any mental health screening. They told her to eat a sandwich, don’t do drugs, find a therapist, make better choices.”
The Woodys found a therapist, and their daughter stayed home from college to work with her. That summer, though, the therapist contacted the Woodys and said their daughter was dangerously unwell. If the therapist found her a place to go, would they send her? Today?
Within hours, they had her on a plane to Salt Lake City. Across the country are thousands of facilities and programs that can be accessed with a phone call, as long as you have insurance or $30,000 a month to spare, the Woodys say.
“All of them are 30-day stints,” Dawn says. “Once you’re there 30 days, there’s nothing more to offer. They don’t care. They’ve got your money, they know what Blue Cross is going to pay, they know what they can get and they get it.”
100 The estimated number of people with mental illness who stayed on beds, chairs and gurneys scattered around WakeMed the first week of May as they waited for an opening in a psychiatric facility
92.8 The average number of hours that the 3,827 people looking for emergency admission into Broughton, Central Regional and Cherry state hospitals from July 2015 through March had to wait
27The estimated number of patients regularly waiting two weeks at UNC Hospital to get into a state hospital bed
Some facilities treated their daughter’s eating disorder and wouldn’t touch her substance-abuse issues. Substance-abuse facilities kicked her out when she forced herself to throw up. Two years of this in-and-out odyssey passed before anyone at any facility even conducted a mental health screening and diagnosed their daughter with bipolar disorder, the Woodys say.
Finally getting medication for the underlying problem instead of just treatment for the symptoms helped, but an unbelievably stressful stretch of life got in the way: Dawn’s mother was diagnosed with brain cancer. Tim’s mother died. Then Dawn’s mother died. Dawn’s father was diagnosed with cancer and died. Then Dawn’s sister was diagnosed with cancer.
“That escalated her anxiety, and because of her desire to keep that from us, she self-medicated,” Dawn says. “She didn’t want to burden us with all that was going on. She had an inability to articulate to us,‘I’m not OK.’”
Their daughter later told them that it was her distress over Dawn’s sister having cancer surgery after the loss of the women’s parents that led her to huff a canned dusting product. In a familiar cycle, the overwhelming shame and guilt of her lapse sent her spiraling into a binge that ended in the heroin overdose in April.
Again, she volunteered to go to a facility, this time in Wilmington. Again, it would be for 30 days. Again, different doctors would say different things and want to give her different medicine. When forced to go from crisis to crisis, there is no continuity of care.
At the magistrate’s office
In Wilmington, the Woodys’ daughter became distraught after her medication was changed abruptly. Because she was there voluntarily, she was able to simply walk away.
Because their daughter was over age 18, the Woodys couldn’t file a missing-person report. They were advised to file involuntary commitment papers at the magistrate’s office so that police would take her back to the mental health facility if they found her.
Commitment papers can’t be filed electronically. And they last for only 24 hours.
Four days their daughter was missing. Four times, either Tim or Dawn drove to Wilmington. Four times they filled out the same form because the magistrate’s office throws the paperwork away each day.
“We’re telling the magistrate behind the glass, speaking very loudly, our daughter’s story,” Dawn says. “Two 19-year-olds are behind you waiting to get married and can hear what you’re saying. There’s no dignity to it all. Tim is telling him all about our sick daughter, and the kids behind us are laughing and taking selfies.”
For the other families traveling similar straits, for the kids who might not have parents equipped to advocate, for their daughter who makes them proud with her determination to be well and productive, the Woodys offer their story. They want it to be a weapon in a war against social stigma, public apathy and government inaction.
“If we can’t figure out how to raise awareness and change this, our journey has been useless,” Tim says. “I have to believe there’s a silver lining in this somewhere. I cannot feel like this is all for nothing.”
Over the past month, their daughter has been in treatment at a wilderness camp in Western North Carolina, getting the best care she has ever received.
On Monday, her time will be up. Again.
Wheeler: 919-829-4825,email@example.com, @burgetta_nando
Stand By Me NC
Tim and Dawn Woody, Donna Kay Smith and others wanting to change North Carolina’s mental health system have formed a nonprofit advocacy group called Stand By Me NC. Smith was propelled to action after her adult son was committed to four mental health facilities in seven months. “When you encounter a person in crisis, a family in crisis, and your response is to do the bare minimum to stabilize them and move them on, you create a pattern of ongoing crisis,” Smith says. “The problem hasn’t been solved. The person is not involved in any kind of rehabilitative treatment. They deteriorate and the whole process repeats. Who the hell does that to someone – anyone – much less someone who is ill?” The group’s mission is to alter social perceptions of mental illness by using the power of grassroots organization and community engagement as agents for change. For more information, email firstname.lastname@example.org.