Living In The Twilight Zone

Today's Learning Moment 02-27-23 – Living In The Twilight Zone

Written by and for people with Lived Experience - Port Alberni Community Action Team - Families Helping Families

Right off the bat, I have to warn you that some of what you’re about to read may trigger some people. If you have experienced living with someone you love who has concurrent disorders, be aware this story might trigger you.

It’s a Living Hell! I’m not sure there is any way to truly describe what it’s like to live with someone you love who has concurrent disorders (substance use and mental health illnesses). Living hell may come close, however, it still doesn’t do justice to the reality. Nightmare, terrifying, horrifying, scary, and being buried alive are all phrases that provide a bit of the picture. Think of living in all of Stephan King’s scariest books and never being able to get out. Maybe you’d be close, however, it’s still not descriptive enough. There’s no other way to say this – if you haven’t been there you just can’t ever imagine what it’s like.
Other families living their own version of our story will be nodding their heads up and down at this point. They instantly get it! For other readers, I rely on your human empathy and imagination. Think of the most disturbing, never-ending Twilight Zone, multiplied by a thousand.

It started when he turned fifteen. It might have been even earlier, but that’s when we started to notice some odd behaviours. At first, we put it off to school stress and other teenage changes. Everything seemed fine most of the time, but it was just the calm before a storm that would rival a category-five hurricane. Here’s the thing – the storm never stops! Fifteen years later and if anything it’s worse now than it ever has been.

Early on, it was apparent that he was struggling with mental health challenges and it quickly began to take over his life. Then came substance use and “addiction”.

He behaved erratically and unpredictably. Certainly, his mental illness was a huge factor, however, adding substance disorder to the mix compounded his behaviour challenges beyond endurance. He is the classic poster person of someone who chooses self-medication to numb childhood trauma and his developing mental health illnesses. He often loses track of time and forgets to do basic things like elementary hygiene, cleaning his room or chores around the house. His addiction also caused him to become isolated from us, his friends and he often found himself in dangerous situations. For our family, living with him was an emotional rollercoaster. Every waking moment was wondering if Dr Jekly or Mr Hyde would appear. We constantly worry about his well-being. We also worry about our own well-being.

But his substance use is only part of the problem. After years of mental health referrals, he was finally diagnosed with several mental health disorders including depression, anxiety and schizophrenia. The combination of his substance disorder and mental health challenges led to unpredictable behaviour and delusions that made it impossible for us to have a normal family life together.

His delusions ranged from believing that people are conspiring against him to believing that “they” could control the weather or his thoughts. You’ve probably heard the phrase, (Delusions of Grander). That’s a real thing! These delusions cause him to act out in strange ways and made it difficult for us to even have a conversation without it spiralling out of control. To try and manage these delusions, we took him to therapy regularly and tried to talk him through his feelings when he was feeling overwhelmed.

Let's take a real look at what it’s like to deal with ongoing delusions, hallucinations and other psychoses as they play out across a typical day. Imagine the person you love telling you that they understand the very fabric of the universe. They spend hours describing their theories, but none of it is couched in reality. When you suggest that some of their ideas might not be factual, they become angry, belligerent and downright aggressive. One thing we’ve learned is to never confront delusions – You don’t have to agree, but don’t ever try to challenge delusions with facts or logic. These thoughts are real to people with mental illness. In some cases, they are the very foundational beliefs of their existence.

So having someone who believes they are Albert Einstein or that they are the smartest person on the planet might not be the breaking point for most of us. Frankly, on some days, we even saw the humour in some of his nonsensical rants. However, even a casual observer will appreciate the constant day-in and day-out irrational one-way sermons wear on a person. It gets to a point that when they come in the room, you want to scream and pull your hair knowing that you have to sit quietly, don’t say a word and listen to their delusions again – for hours on end! It goes on, day after day, week after week, year after year, with no respite. It’s not just listening to their perspective. They actively want you to believe and enter into their delusions with them. If you don’t seem to be accepting of their beliefs, they get frustrated, argumentative and angry.

It gets worse. It’s one thing to believe you’re the smartest person on the planet. It’s a whole other thing to believe that you’re a criminal mastermind. His delusions have created a world where he believes he is the drug lord of Toronto and a major player in all things criminal. Considering we live thousands of miles from eastern Canada, his stories lack serious plausibility.

Absolutely no one wants to believe their loved one is capable of harming other people or for that matter, any criminal behaviour. Sadly in his case, his delusions help him normalize ideas that the rest of us find abhorrent. It’s not possible to agree with some of these anti-social ideas, so you do your best to say things like, “hurting people is not ok” and “crime will result in you being arrested again” – all this does is degenerate into confrontation. However, some ideas need to be called out, no matter the consequences. You hope that some of what you say sinks in, but, the very next day, you’ll get to hear all over again about his worldwide criminal empire and all his other delusions. For family, it’s like living the movie Ground Hog Day.

Along with his delusions, he also struggles with depression and anxiety. Combined with his schizophrenia, it causes him to have extreme mood swings and acts out in ways that are dangerous or harmful. Did I mention paranoia? Oh yes, he has lots of that as well. Who am I kidding – he is aggressive, manipulative, abusive physically, mentally and violent. It is difficult for our family to watch him suffer from these issues and we feel helpless at times because we can’t get him the help he needs. So far for us and his journey, mental health treatment (medications) only ease the symptoms. It’s looking like his condition will be life-long.

You’re probably thinking, “Why didn’t the professionals or system step in” to help him manage his disorders? We tried, we tried so hard! Ever since he came back to live with us, (he was living on the streets for five years) we have accessed every opportunity to connect him with support. None of it has been effective. Sure, there have been small steps, but progress has been agonizingly slow.

Frankly, the system is so flawed that any idea that a patient or family will receive real support is just a tease. Especially when the patient hasn’t accepted that they have a mental illness.

In his case, because he’s had numerous run-ins with the law, he’s often been on probation and court-mandated mental health treatment (BC Forensics). Mandated treatment has been the only somewhat effective approach for him. He hates it, especially the mandated medications. However, it’s the only part of the system that semi-works for someone who doesn’t accept their illness diagnoses.

Here’s an example of how the gaps between the system silos create havoc. Recently the court-appointed forensics psychiatrist revoked his extended leave from his mandated hospital care order under the mental health act. (extended leave allows a mental health patient to live in the community as long as they meet certain criteria) The psychiatrist became concerned due to feedback from us, his family, and ordered him back into the hospital for assessment. That process means that the police arrived at our door. They took him into custody and delivered him to our local hospital. We don’t have facilities for long-term assessment in our local hospital, so he was transferred to a regional facility fifty miles away. The very next morning, I received a phone call from him telling me he had been released and asking how he was supposed to get home. Of course, I went and picked him up.

It’s bad enough that a health facility would release a mental health patient onto the streets fifty miles from home. However, the real question that people should be asking is why would a psychiatrist in the Regional Health Authority ignore a referral for assessment from their forensic psychiatrist peer. Especially given the huge file our family member has in the system.

At best, mental health treatment in BC is like a bandaid stuck on patients that have major amputations. The Mickey Mouse pictures on the bandaid look cute, but they don't stop the haemorrhaging.

Treatment is only one small roadblock for families with loved ones with concurrent disorders. There are other much larger problems. For example, housing. You’re probably asking at this point why does he still live with us? Shouldn’t he be in a facility or at least in assisted housing? Yes, he should! We’ve had him on the BC Housing registry for going on eight years. We’ve been told numerous times that he shouldn’t be living with us because he is dangerous to us. Duh!! – like we don’t know that! However, it’s either he lives homeless on the streets or with us. Why would a society be so dysfunctional that the only choice a family has is to throw their loved one out onto the streets or live with us knowing that we’re in physical danger every single day? Why does it take years to get housing for assisted someone so sick?

There are lots of reasons for the problems we face. Elimination of long-term facilities, The Privacy Act, and our BC Mental Health Act, especially around long-term mandatory treatment. Funding of housing and programs for concurrent disorders, ect, etc.

Acknowledging all these issues doesn’t help families. Our government just continues to plod along doing the same old, same old, while families and people with mental health challenges suffer and die. – sorry, I got on my soapbox there for a minute or two. Let's get back to our story.

Living with a “crazy” (That’s a horrible word) The word “crazy” seems so stigmatizing, however, we just don’t have any other word in the English language that gets close to describing living with a person with concurrent disorders. The word has nuances that cover the entire spectrum of “mental illness” like no other word or phrase. It conjures up all of the dark, outlandish and scary behaviours that we associate with (brain health) going back to the dark ages when we thought people with mental disorders were possessed. That’s the thing about psychosis. There’s no logic behind their thoughts and you can’t persuade them with logic or fact.

I wish I could paint a rosier picture. Overall, we feel the system has failed us and our loved one suffering from concurrent disorders. Even though overall, our health system around mental illness is so flawed, there have been individuals that have been shining stars. We have no idea how they continue to strive to care so much in such a fracture system, Look for these people, They will help you and your family. Sometimes the smallest act or gesture will help you navigate one more day.

If you are beginning your path with someone you love that has concurrent disorders, you should get ready for the bumpiest ride ever. You’ll learn patience. You’ll have to gain a level of compassion to rival Mother Thersa. There will be days when you question everything including why us? What did we do to deserve this? Hopelessness, sorrow and grief all mixed in the loss of the person you once knew that had so much potential. Coming to terms with who they have become is one of the monumental tasks family face.

If you’re already on this journey, by now you probably know more heartache than you ever imagined it was possible to endure. All we can offer is our love from us to you. Know that you are not alone. Look for support groups like Moms Stop The Harm, - Holding Hope. Support groups like these can be life savers for families.

Be gentle with yourself. Every family is different. What works in one, will not work in another. Be gentle with your spouse. It’s a rarity for spouses to agree on how to interact with their loved ones with current disorders. Often relationships are destroyed over the ongoing destructive nature and behaviour of mental illness and substance disorders.

How much you do or how connected you can be, does not define your success or failure as a family or an individual. There is no place in any of this for self-guilt. As families, we all are doing the best we can.

Author: Leon Mishcadel  – Leon is a pseudonym. Leon is a person with lived experience and has a loved one with concurrent disorders.

Note: We may use words or phrases in our articles that are not first person, or the latest best-in-practice language. Sometimes we will use older, non-informed jargon. to clarify and inform people who are learning the new non-stigmatizing language. (linking old language usage to new terms) You can tell when you run into these old or non-inclusive words or phrases. They will be in quotation marks - eg old word “addiction” – When we introduce new inclusive language, words or phrases, they will be in Parenthesis - eg (people with substance disorders).

Families Helping Families is an initiative of the Port Alberni Community Action Team. We regularly send out "Learning Moment" articles to help folks understand substance illness. Knowledge is vital in understanding the disorder of our family members. You may copy, distribute or share our articles as long as you retain the attribution. Add yourself to our distribution list by dropping us a note at - albernihelp@gmail.com