Finding Treatment for Addiction Was Harder Than We Thought
By Jacqueline M. Duda
Special to The Washington Post
Tuesday, October 7, 2008; HE01
We're a hardy family, used to weathering all manner of surprises as we've seen four kids through various stages of toddlerhood, childhood and adolescence. So when our fun-loving 22-year-old, Nicole, shocked us by admitting a heroin addiction and asked for our help in overcoming it, my husband and I froze only an instant. Then we leapt into action, firmly believing that with the aid of 21st-century medical treatment, we could help her reclaim her life.
Surely, we thought, college-educated suburbanites like us could locate professional help: drug counselors, doctors, therapists specializing in addiction. Surely detoxification centers would treat desperate addicts and work out a payment plan. Surely we could check her into some kind of residential treatment program with a minimum of delay.
We were wrong.
The next several months of trying to get her affordable treatment were like entering some unknown circle of hell. Then the world as we knew it came crashing down when two policemen showed up -- two years ago yesterday -- to tell us that Nicole had been found dead of an accidental overdose.
We're still adjusting to life in a reconfigured family that bumps along like a wagon missing a wheel. Meanwhile, we continue to probe the gaps in the addiction treatment system to share what we learn in hopes of helping others avoid tragedy.
The Nightmare Begins
The phone rang at 4 a.m. on the day before Thanksgiving 2005. Nicole, living in Savage, always came home for holidays, but that's not why she was calling that night. She was experiencing raging withdrawal symptoms -- vomiting and muscle tremors -- and fear and physical pain forced her to reveal her addiction.
Our first response was to leave our suburban enclave outside Frederick and take Nicole to the nearest emergency room, assuming staff there would admit her directly into some kind of treatment. How naive. Instead, an ER doctor gave her a clonidine patch and said it would take the edge off her cravings. Then he released her.
He handed us a single sheet of paper listing dozens of drug treatment facilities in Baltimore. A sentence at the top advised us to call the clinics every day, be polite and not burn any bridges. That puzzled me, at first. Weeks later, with no progress toward finding help for Nicole, I understood the admonition better.
During this initial foray into the drug-treatment world, we trolled the Internet night and day. We Googled "heroin addiction" and thumbed through phone books. It wasn't that there was no information; the information overwhelmed us, without providing answers. We called one place after another. But when private clinics learned that Nicole had no insurance and had been determined ineligible for Medicaid, most simply said "sorry" and hung up; and at $15,000 to $25,000 for a 28-day residential stay, they were out of middle-class reach.
The public, government-funded centers were stuffed to the gills, often with patients from prison-related programs. As one counselor told us, an addict can get in faster if he commits a crime than if he just asks for help. "There is a false sense in the public that treatment is one phone call away," says Mike Gimbel, former director of substance abuse education and prevention at Baltimore's Sheppard Pratt Health System, now president of his own consulting firm. "It's a crisis, because people believe they can get help, and it's not there."
We learned about a whole range of treatment measures: detoxification; individual, group and family therapy; residential treatment; 12-step programs. And of course, medication. Like many (perhaps most) families of addicts, we were completely bewildered. I realize now that drug addiction and the problems in treatment have been old news for decades. But when it happened to us, it was news to us. We had little way of evaluating what we learned or figuring out what we didn't know.
Treatment options exist if families know how to navigate the system, says Mady Chalk, director of the Center for Policy Analysis and Research at the Treatment Research Institute in Philadelphia. "Families need to know the right questions to ask," she says, "and someone needs to help them figure it out." We talked to agencies, crisis hotlines and counseling centers, but we often got conflicting information, confusing us even more.Relapsing
As days and then weeks passed, Nicole seesawed between wanting to resume a normal life and craving heroin. Having moved back with us temporarily, she talked about living drug-free, getting another job and returning to college in Frederick County. She smiled; She said she missed my cooking. Her friend Meagan came over, and we ate ice cream and joked about the old days in middle school. In those moments I recognized the laughing, affectionate daughter I'd taken to dance classes for 15 years.
But other days the grim hand of addiction reached out and grabbed Nicole, and she would hitch a ride with someone and head for Baltimore. She would tell us she had a court date (she'd been charged with speeding, drug possession, driving with a suspended license), or she was just going to the movies. When we called to check on her, we couldn't always locate her. Our hunts for her frequently lasted all night.
This is a normal pattern for most addicts; those who have successfully gotten clean say it took them several attempts over months or years. "They've been using and they keep using, because it gives them something, and they don't want to give that up," says Yngvild Olsen, a Harford County internist certified in addiction medicine and the medical director and acting deputy health officer for the county Health Department. "Yet they hate the life."
Three weeks after that pre-Thanksgiving confession, we got Nicole a spot at the local health department's drug treatment program. She began attending sessions two to three times a week, paying a fee ($20 a session) based on her meager income from a job at a restaurant. Most of the treatment was group therapy; there were also family sessions, which included us. We could see that the clinic was swollen with desperate clients, and the overworked staff members were clearly doing the best they could.
But Nicole's seesawing continued. She would disappear and call from an unknown location, saying she was fine. We wanted to believe her, despite the wobble in her voice, but we couldn't. When we asked the police to help find her, they said that because she was older than 18 she wasn't considered a runaway, but they would keep watch for her if she had a warrant from a missed court date. Many were sympathetic, but we mainly hunted on our own.
All this was made more difficult by the shame and fear surrounding addiction. I couldn't help but wonder if everyone I told would look at me as though I were an addict myself, or simply devoid of any moral character, and not as a frightened mother. Experts describe addiction as a chronic, relapsing disease, "like someone with diabetes that ends up with out-of-control blood sugar that may have been self-inflicted from not following his diet," in the words of Wilson Compton, director of the division of Epidemiology, Services and Prevention Research at the National Institute on Drug Abuse.
But when your kid falls off the wagon, don't expect the same attitude the diabetic gets. People tend to see addiction as an immoral choice, a character flaw. And even though treatment has been shown to reduce drug use by 40 to 60 percent, many people view it as a revolving door for addicts who thumb their noses at sober living. The media spotlight on celebrities who drop in and out of rehab doesn't help.
Since the public hasn't bought the disease model, Gimbel says, politicians aren't willing to invest more public dollars in treatment. "Politically speaking, it's more expedient to combat the drug problem by hiring more police and building more prisons," he says. "The public thinks we can arrest our way out of this problem."Hoping for Detox
Over the next few months, Nicole continued the cycle of trying to quit and relapsing. When the pains of withdrawal became severe, she visited our local hospital emergency room. Each time, we hoped that she'd be whisked into detox, a three-day hospital stay during which doctors can prescribe medications, such as methadone, to ease withdrawal symptoms and replacement therapy for the addictive substance.
The problem is, most hospitals and local treatment programs don't offer detox. And few hospital ERs have addiction experts. "Detox is viewed separately from the treatment system," Chalk explains, and Nicole never got that kind of medical help.
Even if she had, we now know that we would have faced another race after the three-day program to find follow-up clinical treatment without interrupting her care. Timing is crucial: Every once in a while, such as after a successful detox, addicts reach a point where they actually want help, Gimbel says: "It's a little window, hours, maybe days if you're lucky." But Chalk says that only about 25 percent of addicts who undergo detox make it into treatment within 30 days.
Nicole wanted to stay close to home, so I didn't look hard in Baltimore. Months after she died, I found that a few hospitals there offer detox, though they're overburdened and she might not have been able to get in. Still, I agonize every day over my belated discovery and wonder why the emergency room didn't have a resource book or some automatic way of telling people like us where the detox units were.
In May 2006, after months on a waiting list for a bed, Nicole got into the Joseph S. Massie Unit of the Allegany County Health Department in Cumberland, Md. She stayed 30 days. My husband and I visited every Sunday and Wednesday while friends watched our younger children. I split myself into two people: one, the mom baking cookies for the elementary school reading party; the other, a worried parent driving more than 100 miles each way to visit her eldest at a treatment clinic.
It was the only time during these months that we relaxed a little bit and felt she was safe. By the third week of treatment, I said to my husband, "I'm starting to see the sparkle back in her eyes."
Nicole was released from Massie on a Friday. The following Monday, she called us from the road: Instead of staying at the halfway house where she was assigned after Massie, she had gone to live in Ocean City. She said, "You know I love the ocean, Mom." She said she had a job. Our hearts sank.Losing the Fight
Over time, Nicole told us that she had been doing heroin for about two years, starting at Baltimore dance clubs and parties. It was part of the fun, she said; she didn't think she'd get hooked. Again, she was not unusual. Rather than getting caught up in the whys, Gimbel says, he wants people to understand that the most pressing need is to find treatment. "Saying 'All they need is some willpower,' like we used to with tobacco, doesn't work," he says. The drugs tell them what to do 24 hours a day, and conniving, manipulative behavior replaces their old personality. When the drug urges were great, Nicole could always figure out a way to get them.
And that is what happened.
On Oct. 6, 2006, I was at my youngest child's elementary school helping the teacher. The holiday season was approaching again, and we expected Nicole to come home as usual. After school, the younger girls and I picked up their brother, Joe, from cross-country practice. Then we got the "visit." Two Frederick County police officers showed up as I was preparing dinner. I left it burning on the stove after they told us the words no parent ever wants to hear.
Nicole had been dead two days when she was found, after an all-day party at the beach. She had alcohol, cocaine and methadone in her system; the combination of depressants proved lethal. She'd been out of Massie less than four months.
Families who know our experience come out of hiding to seek advice. I see the same exhaustion and worry on their faces. I wince when I overhear a crime drama on television refer to addicts as "crack hos" or "junkies." I'm a parent advocate member of the National Council on Alcoholism and Drug Dependence, Maryland Chapter. Each time I speak at a drug treatment conference or interact with an addict in recovery, I can't help but see Nicole and think: We can do better.
Jacqueline M. Duda is a Washington area freelance writer. Comments: firstname.lastname@example.org.