By: Carolann

Introduction: Taking care of a loved one who struggles with substance use disorder (SUD) can be very hard and emotionally draining. It takes a lot of strength, patience, and the ability to handle a difficult healthcare system. Besides dealing with the behavioral issues caused by SUD, caregivers also have to manage their own feelings of rage, resentment, frustration, and emotional exhaustion, especially since society often doesn’t understand what they’re going through.

Our Story: In 2021, the continued isolation from COVID-19 lockdowns affected Acheron deeply. His social drinking turned into drinking alone every day. By 2022, Acheron was very depressed. Even as Canada started to open up again, Acheron stayed isolated. He was once a vibrant keynote speaker, world-renowned instructor, and consultant who enjoyed cooking, walking, biking, traveling with me, and being a loving parent to his teenage daughter. But in 2 years of pods and distance, he became a recluse, spending his days on the couch drinking and watching Netflix. He all but stopped showering, and his lively personality disappeared, leaving him disconnected from his family and life. His relationships, including ours, suffered because of missed plans and important milestones, skipped because he was drunk or hung over.

In April 2022, Acheron traveled to speak at a conference on my birthday and then disappeared for three days. He missed the plans we had made to celebrate. I was worried sick because we usually talked every night when we were apart. This disappearance was a first, and I was both furious and terrified. While some part of me thought he was just drinking in his room, another thought he might need help. I didn’t know whether to call the police. This “disrespectful” behavior continued and got worse. Everyone advised me to leave him and move on, and I felt alone and judged for staying. The situation was exhausting and affected my work and emotional well-being. Most of all, I was afraid of losing the love of my life.

Bad Advice: When Acheron joined an outpatient program in the summer of 2022, I sought advice from friends, family support groups, and a therapist. They all told me to focus on myself, set boundaries, and “stop enabling” Acheron. While it’s important to take care of oneself, distancing myself from Acheron’s problems only made him feel more ashamed and isolated and made me worry even more. I felt ineffective and stuck, and he felt abandoned.

Looking back, I regret leaving Acheron. He felt deep shame for his actions and was extremely lonely. I kept telling him we could return to our happy life if he tried harder, but it felt out of reach. Though he made some progress, it never lasted. Looking back, I realize that the problem wasn’t that he wouldn’t change but that he couldn’t. I thought he was pretending to change to keep me around while still drinking, and he preferred I believe that than admit he couldn’t overcome his struggles.

Leaving Acheron was supported by others, but deep down, I felt he needed me more than ever. If he had been suffering from a physical illness like cancer or a stroke, leaving him would have seemed unthinkable. But society views leaving someone with mental illness and SUD as acceptable. Even though I wasn’t responsible for his addiction, the advice I got to detach from him oversimplified our situation. Family systems are interconnected, and there might be ways to support a loved one struggling with substance use and mental illness, but these are not well understood, since we have few studies.

Advocacy Ignored: The most frustrating part of Acheron’s journey after his death was reviewing his medical records. Our concerns were often not documented, leaving us without essential records of his condition. This lack of documentation meant we had to rely on our memories alone.

I regret not checking his medical records after each visit to ensure my concerns were recorded. During our last ER visit, I mentioned many cognitive symptoms, but none were documented. Even though I provided notes, they weren’t added to his chart. When I pushed for Acheron to be admitted based on his bloodwork, showing failing liver and bone marrow function, the hospital dismissed his condition because it was related to alcohol use. I felt frantic, as it seemed no one else shared my concern, and I didn’t know where to turn for help. I asked them to document their refusal to admit him, but they ignored my request, and my concerns were not recorded. I believe that if I had insisted on documenting their refusal and reasoning, they might have admitted him and possibly saved his life.

Privacy Concerns and Caregiver Involvement: One major challenge caregivers face is the impact of privacy laws on their ability to be involved in their loved one’s care. While patient privacy is crucial, it can also limit the caregiver’s access to important information about their loved one’s treatment and progress.

Expecting someone with significant mental health issues to navigate a complex health system and then labeling them as “not ready to change” when they can’t do it is counterproductive. The challenge for me was recognizing that he was not able to advocate for himself was what I was dealing with now. The problem for his medical team was that they relied on me, and when I reported non-compliance, they labeled him as “not ready.” They saw his lack of progress as a sign he wasn’t willing to get better. If I had been better equipped, I might have been able to change this perception. Meanwhile, if our loved one can’t navigate the health system, we as caregivers must do it for them, and we have limited rights beyond what our loved one explicitly provides.

In the US, caregivers can provide input on their loved one, with the understanding that medical providers will share that information with the patient. In Ontario, this process is less clear. Once our loved one withdraws permission, medical providers may not accept information from caregivers, even if it could help the patient’s treatment.

Advocacy for Systemic Change: To improve the situation for caregivers and their loved ones, systemic change is essential.

• Better Tools and Studies: We need more research on effective caregiving strategies for people with substance use disorders. Studies should explore how caregivers can offer meaningful support.
• Revised Privacy Laws: Privacy laws should protect patient confidentiality while allowing caregivers to participate meaningfully in their loved one’s care.
• On-Demand Care: Accessing timely care remains a challenge in Canada. Even when a loved one agrees to treatment, navigating the healthcare system can involve long waits and other barriers.

Conclusion: Caregivers play a vital role in supporting loved ones with substance use disorders, but they face systemic barriers that make it hard to make a difference. By advocating for policy changes, supporting caregivers in your community, or donating to advocacy organizations, you can help create systemic change. Together, we can challenge misconceptions and improve outcomes for both caregivers and their loved ones.