By: Carolann

Introduction:

In our journey to understand the complexities of caregiving for those with mental illness, we will explore the personal impact of stigma. As caregivers, we often find ourselves balancing love, duty, and societal judgment. This post examines the challenges caregivers face, drawing from personal experiences and the broader landscape of mental healthcare.

Recap:

Before diving into this topic, let’s briefly recap Acheron’s story. He was more than a statistic; he was a beloved teacher, mentor, and leader who struggled with Alcohol Use Disorder, Autism, ADHD, depression, and anxiety. Acheron’s decline from a world-renowned educator to someone isolated at home, lost in Netflix, and ultimately denied adequate care, reveals the flaws in Canada’s mental health support systems.

The Personal Toll of Stigma:

As Acheron’s caregiver, I often faced stigma and misguided advice. The stigma of being partnered with someone who seemingly “refused to do their part” because they weren’t getting better often overshadowed my own achievements and capabilities. This stigma not only affected how society saw me but also how I saw myself. Not only did friends and family doubt my competence, but Acheron’s doctors did as well, especially in emergency rooms, where they often openly discounted my observations and judgment. It was isolating, leaving me to navigate the maze of caregiving with little support and dwindling hope.

Support for caregivers is usually focused on how we can best support the person with the substance use disorder. It includes advice on emotional detachment, nourishing ourselves with positive experiences, and when to leave if things don’t improve (which happens 25-50% of the time). It’s all about what changes we can make, such as being positive and non-confrontational. The carrot for us caregivers is that if we change, our loved one will eventually see the light and get better. But what evidence supports this and at what cost to our own wellbeing?

As Acheron’s mental illness and alcohol use worsened, he disappeared for the entirety of my birthday weekend and missed other important plans, even disappearing when my parents visited. He was drunk and unwashed at his daughter’s high school graduation. There are too many humiliations to list, and I was judged for putting up with this treatment. Friends and family urged me to leave him.

A social worker recommended the book “Should I Stay or Should I Go” to help me decide. The problem with this book is that it is based on one psychologist’s opinion about men who abuse their partners, not on a scientific study. It conflates mental illness and substance abuse with psychological and physical abuse. The book suggests using a plan and progress against that plan to decide whether to stay in a relationship. But it doesn’t help distinguish between people who have no interest in changing and those who are too depressed to do so (which we now believe was Acheron’s issue).

I made decisions to detach myself because everything I heard—from programs, friends, family, advice columns, internet searches, and this book—suggested that if Acheron wasn’t changing, he didn’t want to get better. In retrospect, I realize that trying to use our great life together as motivation for him to improve not only didn’t work but made things worse. I regret not questioning the so-called experts. It felt as though the “expert” who recommended this book wanted me to leave my partner, thinking it would be best for me.

Ineffective Strategies and Their Impact:

Well-intentioned advice for caregivers often falls short. Ideas like waiting for someone to hit ‘rock bottom’ or detaching emotionally lack evidence and can make caregivers feel even more helpless and isolated when we choose not to abandon our loved one. Traditional treatment approaches, including residential programs, often fail those with complex mental health issues like Acheron. And who wants to share a room with a stranger, especially if they are neurodivergent? Caregivers are left isolated, unsupported, and unsure of what to do.

Advocacy for Systemic Change:

Caregivers are on the front lines of battling mental illness but are often given inadequate tools and resources. Advocacy is crucial. In Canada, 70% of mental health caregiving falls to family and friends, highlighting the lack of systemic support. We must advocate for better resources and evidence-based strategies that meet the needs of both those with mental illness and their caregivers.

Conclusion:

The personal toll of stigma in caregiving is profound and far-reaching. It’s a burden carried not only by those with mental illness but also by those who support them. As we continue exploring this topic, let’s remember that behind every statistic is a human story—a story of resilience, love, and the commitment to navigate the challenging waters of mental illness.