By: Carolann

Reflections on My Journey:

In this journey, if we don’t get the outcome we desperately want, it’s natural to have regrets. By regrets, I mean the things I wish I had done differently or known earlier. I did my best with the knowledge I had, and I try to extend the same grace to Acheron’s medical team when it’s deserved.

If I could share one thing from my experience, it’s this. Always ask yourself, “If the worst should happen, would I be able to live with myself?” whenever you must make a decision. I can live with myself because I did my best with the energy I had and advice I received.

I wish I had listened less to others, including experts.

Every regret I have stems from this one. Many experts don’t fully understand the limits of their training, so they speak with too much certainty. In my work, we talk about what we know and don’t know, our assumptions, and what new information would change our hypotheses and conclusions. Then, we qualify our certainty using percentages. When describing mental illness and SUD, experts often overlook the quality and limitations of studies, relying on limited data and limited subjective experience. I wish I had asked, “Based on what evidence?” with every expert claim.

I wish I had sought support sooner.

Disclosure was very tricky in that I felt I needed to protect my partner’s privacy around his mental illness, and he didn’t want me to share it. This meant I couldn’t get the resources needed to help him as he became more isolated. I was left to handle his decline alone, which drained me and made it harder for me to help.

I wish I had not made this journey as much about me and conversely, it needed to be more about me.

I didn’t take enough care of my own needs and didn’t have the love and support that I needed. I made decisions that were too tied up in my self-respect. I was often mistreated by my partner when he was drinking. Sometimes, I felt mortified by his behavior. I chose to disengage from him because the people closest to me were judging me as an incompetent fool for staying.

I wish I had recognized when support wasn’t really support.

The “support” I received often felt more like judgement, suggesting I was being taken advantage of or was stupid/incompetent/deficient for sticking around and that the only respectable action was to leave. One of my weird pastimes is that I love advice columns in the newspaper. Carolyn Hax is my favorite, followed by the Ethicist in the NY Times. These were not helpful. The advice for people in relationships with long term substance use issues is to “run.” That message really is everywhere.

My therapist asked nearly every visit what I was getting out of my relationship with my partner. My response was it’s the ability to live with myself if something bad happens, and she didn’t think that was a good enough answer. She was wrong. If I can impart anything to service providers who are supporting caregivers, it’s that you don’t know better. There is so little research.

What Support Looks Like:

Ironically, the best model of support for the family caregiver came from my late partner. He would tell me, “You are smart, capable, and competent. You love me like no other person. Your dedication to my wellbeing and our family is so amazing. You are a force of nature. You’re my favorite person.” I loved that he said these things (and more) with real conviction. I knew he meant every word. Find positive, helpful, specific attributes and deliver those in a meaningful way.

Examples of supportive words:

• “I admire your strength.”
• “I respect how you handle this situation. How can I help?”
• “I trust you to know what’s best for you.”
• “I’ll support whatever decisions you make. How can I help?”
• “What research can I do to assist you?”
• “Who can I connect you with that might help?”

I wish I had known how little is understood about mental illness, the drugs used to treat it, and substance use disorders.

I also wish I had known the limitations for 12-Step programs and most inpatient treatments. I wish I had done more research before my partner passed away.

I wish I had known it is nearly impossible to get substance use disorder treated alongside mental health disorders in Ontario. If I had known, I would have pushed harder for mental health treatment since it was the root of the substance use disorder. Most mental health providers won’t treat until the SUD is managed, and we went along with it.

I wish I had insisted that the provider use the form I created to measure progress.

I learned this years ago from a questionnaire my psychiatrist had me fill out every week. It is great for subjective things, because when someone rates themselves a 7 on a scale of 1-10, their concept of what a “7” is doesn’t change from week to week. It doesn’t matter for this application whether my definition of “7” is the same as your definition of “7.” It provides a reference point for trends and guides the conversation, moving beyond vague terms like “fine” or “great” to “What would it take to make this 7 an 8?”

One of the most frustrating things about attending Acheron’s appointments was that often the provider would ask the wrong question. One of the features of Acheron’s autism was that he would answer the question asked, not the question the provider thought they were asking. For example, his provider would ask, “Have you been drinking?” thinking he was asking about the period since the last visit. Meanwhile, Acheron would answer that question as though the provider meant that day or in the last few hours. The question “How many drinks have you had since the last appointment?” on a questionnaire would have provided tracking data and would ensure that the correct question was being asked consistently.

I wish I had stayed 100% of the time with my partner.

I can’t leave this topic without also acknowledging what went well and what I am most proud of. Despite literally everyone’s advice against it (except his doctor), I brought my partner back to the US and created a kind of rehab program for him. He cooperated while with me, and he did what was required while he was with me. I’m proud of myself for continuing to problem solve, my flexibility, and recognizing that the SSRIs (in this limited case) were causing more problems than they solved.