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9 Things We Wish We'd Known: A Letter From Families Who Have Lost a Loved One to Addiction

March 23, 2019

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Dear Neighbor,

Every day in America 192 people die from drug overdose — that’s like a plane crashing each day, day after day.

We write this letter as families who have lost our sons, daughters, sisters, brothers, mothers, and fathers. We are from different communities, cultures, and religions but we have linked together, arm in arm in our shared heartbreak, to help other families impacted by the disease of addiction and to protect other families from this tragedy.

This letter to you is about the things we wish we had known — the things we’ve learned since we suffered our losses and wish we had done differently.

If you love someone who is struggling with addiction, if you have a family member, a coworker or a friend in trouble because of alcohol or drug use, this is for you. We hope that this knowledge, painfully earned, can help you and your family.

1. Don’t ignore the signs. 

“At first we didn’t see the signs, but gradually we began to notice his moodiness, not feeling well, saying he was doing one thing but finding out later he was doing something else. I wish I had known more of what to look for and what to do,” explains Katie, who lost her brother Zachary when he was just 24.

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"We now know that we should've been more proactive in the very beginning. Back in 8th grade, my son's teacher expressed concern. And another parent told me that Pat was using drugs," says Barbara, who lost her son to an accidental fentanyl overdose when he was 46.

It’s easy to mistake early symptoms of the disease for normal development among adolescents or stress among adults. If your loved one starts behaving differently for no apparent reason — such as acting withdrawn, frequently tired or depressed, or hostile — it could be a sign that he or she is struggling with a substance use disorder.

“It isn’t always easy to tell if a person has an addiction, but any changes in habits and suspicions should be taken seriously by family members,” explains Dr. Robert DuPont, an addiction psychiatrist and first director of the     National Institute on Drug Abuse.                                                              

“If your loved one is using prescription medications for a longer time or more than prescribed, that’s a warning sign. If the person is using alcohol or other drugs regularly or when feeling depressed, anxious or bored, that’s also a warning.”

Familiarize yourself with the signs of substance use disorder and intervene immediately to stop the drug use if a loved one is exhibiting symptoms. Like many other health conditions, addiction worsens over time.

2. Don’t wait for rock bottom.

“People are told the disease has to ‘run its course’ and to practice ‘tough love’ until they hit rock bottom. Now with fentanyl rock bottom was an overdose, a fatal overdose. I wish we had found better advice but there is just so much misinformation out there about this disease. Bottom is death today,” shares Justin from Indiana, who lost her son Aaron at age 20 to a heroin overdose.

30202019_9_Things_AaronDecades of research has proven that the earlier treatment starts, the better the chances for long-term recovery. Treatment works just as well for patients who are compelled to start by outside forces as it does for those who are self-motivated.

But how do you start that conversation with your loved one about treatment?

According to Dr. Mark Gold, a renowned addiction psychiatrist and professor at Washington University in St. Louis, “Start with affection, such as ‘You’re one of the most important people in my life,’ which helps reassure the person.                

Then cite specific behaviors that you are concerned about, whether episodes of impaired driving, arrests, missed work or other changes. Then suggest or even insist that they undergo an assessment, which helps determine the severity of their substance use disorder and assists in the creation of a treatment and recovery plan.”

3. Recovery takes time.

03212019_Alicia_9_ThingsKarla, mother of Alicia, age 28, shares: “I wish I would've known that recovery is not about 3 months, 6 months, a year in rehab. It’s a lifetime. When they release someone from rehab, it’s not the end. It’s the very beginning. That’s what happened with Alicia, they released her and she had no plan and three days later she died.”

Dr. Robert DuPont explains,  “We’ve learned that the best outcomes for substance use disorders come from systems of care management that include quality treatment, close monitoring and engagement in community-based recovery support for up to five years – not 28 days. Physician Health Programs manage the care of doctors struggling with addiction which typically includes monitoring and random testing for a broad array of drugs and alcohol for five years. We need to see a transformation in our healthcare system to develop a continuum of addiction care to include prevention of substance use disorders, their early identification, and effective treatment and long-term monitoring to prevent and intervene when relapses occur, just the way other chronic diseases are managed.”

A provider should work with your loved one to develop an individualized treatment plan, taking into account the severity of their disease, any co-occurring disorders, and a variety of other factors that help determine the best course of treatment. Patients with a moderate or severe substance use disorder will likely need a comprehensive three-to-five-year treatment plan; while those with a mild substance use disorder may require a lower level of care.

4. Find quality treatment.

03202019_9_Things_Zachary"Finding quality treatment takes teamwork. I would recommend anyone who is going through this right now to find the resources in their towns. Connect with people and organizations that help families provide support to their loved ones and also support each other. Resources are much easier to find these days because people are finally talking about the disease. Organizations such as the Addiction Policy Forum have the tools you need readily available to you. This would have been so helpful when we were going through it with my brother," says Katie, who lost her brother Zachary.               

Finding a treatment provider can be daunting. There are many factors to consider when choosing a provider and treatment plan that are right for your loved one. 

Dr. Gold explains, “It’s critical to know which physicians in the community are trained in Addiction Medicine or Addiction Psychiatry to find quality addiction treatment. Some important things to look for in a program include whether the program is licensed and accredited. Do they use a validated assessment tool to determine what level of care their patients need? Do they have a full-time Psychiatrist or how many hours a week do they have Psychiatrists, Addiction Medicine and other experts on site? Do they have experience providing therapy and medications for patients with opioid or alcohol use disorder? How do they develop a patient’s treatment plan? Is it personalized? How long does it last? Do they do follow up, after treatment assessments, for 1 or 3 or 5 years? Addiction is a chronic disease and requires long term planning and care.”

5. Use all the tools in the toolbox.

There are several evidence-based approaches for treating addiction, including behavioral therapies (counseling), mutual aid support groups (12-Step), cognitive behavioral therapy (CBT), and medications. The specific treatment plan should vary depending on the patient’s individual needs, the types of substances they use, and the severity of their illness.

“I’d thought medication-assisted treatment (MAT) was ludicrous, just trading one addiction for another, but I was wrong,” adds Katie. “Since losing my brother, I often wonder if MAT would’ve helped Zachary succeed. When someone has cancer, we don’t choose between chemo and radiation -- we layer treatments.”

"Like many chronic illnesses, substance use disorders require a patient-specific, multimodal approach to long-term management for optimizing success,” explains Dr. Brian Fuehrlein, Assistant Professor of Psychiatry and Director of Psychiatric Emergency Room at Yale University School of Medicine.  “Patients and families often believe that a brief stay in a treatment program ‘cures’ an addiction.  They then feel hopeless, helpless when a relapse occurs.  Ongoing management with a combination of medication assisted treatment (MAT) and psychosocial approaches is critical for long- term sobriety. Fortunately, there are several evidence-based MAT options currently available.  There are also evidence-based psychosocial and therapy options available. An ongoing combination of these approaches will generally yield the most success. Much like the best approach for long-term management of Diabetes involves a combination of diet, exercise, regular doctor visits, medications, etc., the best approach for long-term management of substance use disorders involves a combination of modalities on an ongoing basis and individualized for the patient."

6. Non-fatal overdoses are a key warning sign.

03202019_9_Things_Emmett“I wish I had cautioned Amanda about the danger of overdosing after a year of not using in prison,” shares Ardith, who runs a prison ministry for women with substance use disorders in Alaska. “You get sober in prison, you get out, your craving is there, your tolerance isn’t, the dealers are different, the drugs are different. She was 32 and I taught her to crochet. I want to make sure this doesn’t happen again.”

People who have had a non-fatal overdose are at heightened risk of fatal overdose. With the necessary support, a nonfatal overdose can become an opportunity for intervention for our most vulnerable patients and their families. But too often we don’t use this opportunity.

“After Emmett’s fatal overdose, we found out that he had been seen at the hospital and revived with Narcan at least seven times over the previous year - that is seven missed opportunities to intervene and save our son’s life,” says Aimee D’Arpino, mother of 20-year old Emmett. “I can only imagine how life would look today if we had been given the opportunity to intervene and address Emmett’s heroin use disorder during those crucial moments.” 

“Complicating matters, all overdoses are not accidental. While giving Narcan and saving a life is like giving CPR, those who have had an overdose reversed are not initially grateful. They may wake up in active withdrawal which is painful, often causing irritation and anger and can be one of the most difficult times to engage someone in treatment,” explains Dr. Gold. “But families and clinicians should persist, start MATs as soon as possible and continue follow up to encourage engagement in treatment.”

7. Pay attention to early substance use. 

03202019_9_Things_Michael“Experimenting with marijuana at 16 was followed by experimenting with prescription pills and finally heroin. His face, my voice are words that echo in my head from the moment we lost him,” shares Lou from New Mexico, who lost her 19-year old son Michael after a two-and-a-half-year struggle.

So many families aren’t educated about the adolescent brain and how it is more vulnerable to alcohol and drugs than the adult brain. The earlier someone starts using substances, the greater their chances of developing an addiction later in life. Earlier initiation of use is also linked with a greater severity of illness.

“Use often begins with alcohol, nicotine or marijuana — the most commonly used substances among teens. It also means that the drinking age of 21 is not arbitrary, but closer to the age of brain maturity. Protecting the brain during this critical period of development is an important part of prevention,” explains Dr. Robert DuPont. “At what age adolescents begin drinking and smoking matters.” 

“Parents need to know that their children do listen to them. They should start talking to their children about drug use when they are young and continue reinforcing the importance of not using any substances, including nicotine, marijuana, or alcohol. Young people respond to the science of brain development; give them the facts to protect themselves and make the healthy choice of no use,” explains Dr. Caroline DuPont, an experienced addiction psychiatrist.

8. Understand the link between suicide and addiction.

03202019_9_Things_ScottWe not only lose loved ones to accidental overdoses, but also to suicides, especially among those with opioid use disorder.

Jim lost his son, Scott, just two days before his 21st birthday. “His relapse led to his suicide. He left us a letter that read ‘I just can't stand being in my own mind, it's torture and it hurts and I've tried for years to get help but nothing works,’” Jim shares. “He felt isolated and became withdrawn, and so much of that is because of the stigma and shame around this disease. Addiction is a mental health issue, not a moral failing or a character flaw."

Dr. Fuehrlein explains, "It is very clear that those suffering with mental illness have higher rates of substance use disorders and those with substance use disorders have higher rates of mental illness.  

It is imperative that anyone with a substance use disorder is properly screened for mental illness.  Mental illness and substance use create a cycle of exacerbating each other with worsening symptoms that often lead to hopelessness and despair.  Those with substance use disorders are at an elevated risk of completed suicide.  When present, mental illness must be properly managed in conjunction with the management of the substance use disorder.  We must do all that we can to break down the stigma associated with both mental illness and substance use disorders and encourage patients, families, and providers to have open conversations with each other.  We must be aggressive in screening for and treating all mental health problems when treating addiction."

9. Find support.

03212019_Courtney_9_Things“It feels like you’re drowning when you’re worried about your kid and desperately trying to find help. And the stigma around this disease can mean backlash and judgment from some of the people closest to you, but help does exist. Reach out. There are so many people right next door who are dealing with addiction too and so much support we can give each other,” shared Doug Griffin from New Hampshire, who lost his daughter Courtney at age 20 to a heroin overdose.

There are support networks, family groups, and other ways to find help and lean on others in crisis. Call the Addiction Policy Forum helpline at (833) 301-HELP to speak to a social worker or be connected to family support.

Finding help, friends, and experts is key to navigating this difficult chronic health issue. With more than 20 million people struggling with substance use disorder in the United States, you are not alone.

Sincerely,

Doug Griffin, NH, Aimee D’Arpino, MA, Jim Freund, VA, Jessica Hulsey Nickel, MD, Jennifer Stepp, KY, Karla Jaques, MO, Katie Len, NJ, Justin Phillips, IN, Barbara Pacitti, NY, Diana Hollister, CO, Julie Taylor, SC, Lou Duran, NM, Ardith Mumma, AK, Athena Naranjo, CA, Erica Bartling, WV, Kelly Maurer, AZ 

About the #192aDay Campaign 

This letter is part of the Addiction Policy Forum’s #192aDay awareness campaign to honor those lost to drug overdose and other complications of substance use. The Centers for Disease Control (CDC)’s 2017 data revealed that more than 70,000 people died from drug overdoses -- 192 a day -- making it the leading cause of injury-related death in the United States, more than deaths from gun violence or car accidents. The campaign features 192 letters from the family members who have lost a loved one to addiction.

“It’s time we recognize addiction for the disease that it is and move beyond the stigma that enshrouds substance use disorders,” writes Jessica Hulsey Nickel, founder of the Addiction Policy Forum. “192aDay helps shine a bright light on the beautiful lives lost to addiction and gives voice to the families that have been affected.”

Visit www.192aDay.org to share a loved one’s story or read more letters submitted by families across the country.

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Addiction Policy Forum

Addiction Policy Forum is a nationwide nonprofit organization dedicated to eliminating addiction as a major health problem. Our national headquarters is located in Washington, DC with resources and services in every state.