By: A sibling/caregiver/nurse
My parents are retired. They worked their whole lives to provide for their children, including drives to Disney Worldat March break in a Ford caravan, summertime camps, and all of the day to day demands of looking after three children… so when they announced that they would be taking a much-deserved holiday, my brother Steve and I knew that we would need to step up our care for our brother Terry.
Terry has substance use disorder. The onset of his addiction started in his 30s. Before that, he was an accomplished professional, married with children and thriving. The warning signs were there in his youth, excessive drinking at times, anxiety, coping centred around after work drinks. Now, he lives with my parents. Every day he is reminded of his unrelenting illness, one that comes with an accumulation of moral injury, unfulfilled wishes and regrets. When things get chaotic, he talks about his addiction, he tells us that he wouldn’t wish it on anyone, that if he could just turn things around, his life would be better... he would be better, a better father, a better son, a better brother. But, he also reminds us that he can’t continue to live like this. And our worry for him is endless.
My parents left on a Monday morning. That evening my brother Steve brought Terry some dinner. He spent the night and they reminisced. Steve called me the next morning to say how well the night went, “Terry was great, clear”. “Clear” is a euphonism that Steve and I use to indicate our evaluation of Terry’s state. A single word that has enormous meaning and a skill that has taken us years to refine. It’s typically based on a series of assessments related to the quality of his speech, response time, any slurring, affect, abnormal thoughts, indications of hallucinations, grandiose thinking or paranoia (all of which have occurred before) and all related to substance use.
When he told me Terry was “clear“, it sparked some hope for the next couple of weeks. Both Steve and I have young children and busy lives, we weren’t sure how we would manage without our parents there to support and orchestrate Terry’s care. Even though my parents are retired, their lives are much harder than ever before. My mother has become incredibly skilled at knowing if Terry has taken alcohol, benzos, meth, opioids, cocaine, GHB… mostly just by observing him. The past six years, my parents have housed, fed, detoxed and supported Terry. Their care work is ceaseless and thankless. They have tried everything for Terry: 12-step programs, in-patient care, outpatient care, individual therapy, family counselling, CBT, EMDR, private neuro-psychological assessments, vocational support — all with very minimal effect.
A part of them wonders if they are working harder at some form of recovery than he is, but ultimately, they resolve to it doesn’t matter… what are they supposed to do? The few times that Terry has been temporarily estranged from my parents, they were gutted, with sleepless nights, chronic anticipatory grief, and devastation for their son. It was no better in their minds. “At least I know where he is”, my mother would say. She couldn’t bear the thought of him dying alone — because that is on the table.
While Steve went home to care for his kids, it was my turn. I made a roast beef for dinner, something I knew Terry likes, and called him at lunchtime. He sounded clear. My husband, Allen, said he would pick up Terry when he was done work. Terry no longer has a driver’s license. The plan was to have Terry eat, stay a while and bring him back to my parents overnight. Before each visit with Terry, I remove any alcohol from my home, and hide the medication for our dog. Allen texted me, “on my way, all good?”. I called Terry to make sure things were ok. I prolonged the conversation a bit with some rant about the cost of groceries just to make sure I had a good read on his behaviour. “All clear” I responded to Allen.
But it wasn’t all clear. In the time that I spoke to Terry until Allen pulled in the driveway, he finished a 26 oz bottle of vodka. At first, he was okay, but by the time Allen started to drive down a busy road things became very dangerous. Terry was no longer a safe passenger in the car. He tried to veer the car into oncoming traffic nearly killing them both. When Allen was finally able to pull over, Terry jumped out and ran into the busy street. Allen called me. “I’m so sorry, I don’t know what to do, he ran away”. I called Terry who was already full of remorse and shame. He said “I can’t do this anymore, I’m just going to end it, I’m going to hang myself at mom and dads’“.
I believed Terry. I thought of all of our late-night phone calls, him sobbing, him worrying, him wishing for something different. I needed to do something. I called 911. Running through my mind were the countless news stories of escalation, and things going terribly wrong when police intervene with someone during a chaotic substance use episode. I begged them, “please, he has a mental illness, he has a substance disorder, he’s not well, it’s not his fault. He has no history of violence, please don’t hurt him”. The dispatcher offered some sympathy but mostly wanted to know if he had access to weapons. I frantically called my neighbour and dear friend to watch my children as I raced to the scene.
I got there after the police. When I arrived, I was confronted by a neighbour living next door to my parents,seeking an apology for my brother’s behaviour. By this time, Terry was very impaired; alcohol, suboxone and whatever else he may have taken that day are a terriblecombination. He was erratic, agitated, screaming profanities and taken by ambulance in restraints to the emergency department in significant distress. The neighbour was a victim of one his careless slurs. It didn’t occur to her that maybe she was being a voyeur in one of the most painful moments of his life, that she brought her young daughter to the public spectacle for the salaciousness of it all… it also didn’t occur to her that maybe the family were also deserving of feeling hurt for the situation … it’s not like we haven’t been victims of those same profanities before.
I tried to reason with her, “please have empathy, he is sick”. I can’t remember the exact words, but the basic tone of her reply was something along the lines of drug addicts aren’t sick. So, what then? They are just damaged peopleto be forgotten? They are just assholes? They choose this? I couldn’t reconcile that thought, because I know so intimately how much this is not a choice for Terry. I see him try and fail at recovery. Not that recovery is even an expectation anymore. The neighbour eventually came around, and a few weeks later she even reconciled with Terry.
The police offered similar grace to the situation as the neighbour. They were interested in what he had taken, and why he was being left alone at my parents’ house. “Why would your parents do that?”, one of the officersboldly asked. “What are they supposed to do?”, I responded. This rhetorical dialogue went nowhere. I told the officers about his mental health history; it passed over them like a breeze. They asked my husband and I what our plans with Terry were for the evening. “Were you planning to have Terry around your young children?” they asked. I acknowledged that he was supposed to come for dinner until things escalated. “Was Terry to sleep over?”. “No” I replied. “Good thing, or we’d have to call Children’s Aid Society“.
I knew that the system was punishing to family members of persons with SUD. I’ve stopped counting the number of times that my mother was dismissed at Terry’s bedside, or the passive-aggressive tone she received from doctors, nurses and therapists who slyly believe she is the root cause for all this damage and destruction. I recall the counsellors in family programs at his 2nd rehab stint, asking me if my behaviour could be “enabling“ Terry — as though Ihaven’t thought of this before. As though every family member of persons with SUD don’t ask themselves thisquestion — like we are stupid people.
Of course we wonder if we are enabling. All of the time.But what choices do we have? Enabling is a systemic issue, not a family one. Provide us with good resources to help our beloved family members and maybe focus less on whether or not we are enablers. All of these things crossed my mind as I spoke with the police officer. But ultimately, I was deflated, worried about Terry and feeling less than reassured about my decision to call 911. I told the police I would go to the emergency department to check on Terry.
By this time, I started to receive texts from my panic-stricken mother. She had watched the events happen on her RING app. Terry being taken away in restraints, his yelling, the neighbours… all of it. “What’s going on?” “Is everything alright?” “Is Terry OK?” the texts read
As I walked into the hospital, I heard “code white” and immediately knew it was Terry. Code white is an institutional term used by most hospitals to indicate that there is a perceived threat of violence, it alerts security and all staff of the situation. I saw a security guard pick up the pace, and I followed him through the emergency department. Sure enough, there was Terry, restrained in a stretcher, wearing a ‘calming net’ over his face as he gnashed his teeth very aggressively. “Get a knife” he said to me. “Cut me out of here” he said again. “I can’t, Terry, please try to stay calm, I know this hard”. “Get my fucking kids and run” he said.
Was this his lizard brain trying to convey his deeply seeded worry for the situation and fear? How could he not be scared? I would be. The ER doctor came over and introduced herself. She was fully gowned but had kind eyes through the mask and face shield. “Listen, he has substance use disorder”, I said just before she interrupted me. I tried to use the system vernacular because I am a nurse. I tried to reason with her on a professional basis. It didn’t matter. “I see that, I looked at his file, he’s no stranger to the emergency room, is he?”. “No, he’s had 6 visits in the last year. He has had several injuries. He was hospitalized in the ICU and was on life-support a year agoafter a severe benzo withdrawal. This has been very challenging for him. We cannot find a program or long-term solution that works. I’m really hoping that I can talk to psychiatry”, I tried to reply as fast as I could, knowing that she wouldn’t be able to speak to me for long.
“He won’t be seen by psych for hours”, she replied. “I’ll hold him overnight but he’s taking up a bed. Try to get some rest. I can see your family does this a lot”. The response was a mix of insult, kindness and lack of mental health awareness all in one. I asked “Please don’t discharge him without calling me, please. I would really like to be there for the psych consult. When should I come back?”. “I’ll call you when I know more”, she said. She never called. I said goodbye to Terry and went home.
I called the ED an hour later. When I spoke with the nurse, I felt compelled to explain to her that this is not who he really is, that he isn’t the person saying these horrible things. She offered some reassurance and promised to call if he was discharged. She never called. In fact, no one called. He was discharged on a November morning at 5am, with no phone, no jacket, no shoes, no money. He walked 6 km back to my parents’ house in socks, only to discover that he had no key. So he kicked in the side door. And the neighbour who had demanded an apology called the police.
The only reason I knew he had been discharged is because the police called. They asked if my brother was allowed to enter my parents’ home. They explained what happened and told me that they would be sending a police car out to monitor the home for the next little while. I went back to my parents’ house to find Terry laying on the couch. His shame was oozing from his pores more than the alcohol he consumed. He couldn’t believe what he had done
When I play with my young children and we find a dandelion or stray penny to wish upon, my first wish is always the same – for Terry to get better. Because I know that if Terry gets better, it will restore some peace in our family. Where a family celebration is about the event being commemorated and not a tragic reminder of who Terry could have been.
Terry getting better doesn’t even mean substance free. I resent the perception that family members don’t understand harm reduction. If anyone knows harm reduction, we do. Our everyday life is making decisions to minimize the harm and destruction caused by addiction. When my mother gives Terry a beer to prevent the DTs, the perception is that she’s co-dependent, enabling, and problematic. When harm reduction workers give one, they are heroes.
My second wish is that families would receive the recognition and support they deserve. If Terry was recovering from an accident or had another disease, he would receive the treatment he deserves instead of judgment. He would not be living in a state of chaos and my parents would not have to choose between their son and their own peace. Instead, they live in a chronic state of chaos along with Terry. I know one thing; whatever the fix for Terry, it won’t happen without the inclusion of our family.