Mind & Spirit
What it's like to love someone with severe mental illness
IMAGE: Genevieve Pizzale
Mind & Spirit
What it's like to love someone with severe mental illness
When Jane Daly’s brother was diagnosed with paranoid schizophrenia she became an important part of his support team, despite often feeling powerless to help.
*Trigger warning: Depression and suicide
When anyone we love is sick, offering help to ease his or her suffering is a natural reaction. It starts as early as the first bowl of chicken soup someone makes us when we have a cold, or the ginger ale they bring us when we have the stomach flu. With more serious or chronic illness, family and friends often have to help with everything from driving their loved ones to appointments to helping those who may no longer have full mobility.
But when you want to help a loved one who suffers from mental illness, it can look a little different. Due to the stigma still attached to the term “mentally ill,” many sufferers struggle to ask for help. But if they are able to lean on their family and friends, help often takes the form of checking in regularly and taking the time to listen with kindness and without judgement. In the case of some mental illness, helping may mean reminding your loved one to take their medication and driving them to doctor appointments. It may involve more serious things like late night calls from the police or the emergency room. Mental illness doesn’t only impact the afflicted. Friends and family of those who suffer from mental illness often play a part in their loved one’s illness as well.
My brother suffered from paranoid schizophrenia, undiagnosed until his thirties, and his suffering was immense and ultimately fatal. And we felt that immense suffering too—on his behalf, and in our own way.
Michael self-medicated early on in his life. Schizophrenia symptoms usually start to show themselves in one’s late teens and early twenties—by then my brother was drinking and doing drugs heavily. Over the years, my family was certain he was addicted to drugs and that he didn’t want to get clean, and unfortunately missed the signs that there was something else going on.
My brother hadn’t lived at home since he was a teenager. He was always asking to borrow money and rotating through jobs. My parents always tried to help and to get him settled in new apartments and new jobs. But without a diagnosis, it often seemed like he was a drug addict who refused to get help. It became harder and harder for my parents to care for him, especially when he moved to rooming houses and developed an explosive temper when speaking to them.
Like my parents, I did what I could to support him. One day, when he came to ask me for money, he told me about voices he was hearing and these terrifying visions of people trying to kill him. I immediately told my parents that I thought he was having delusions and they weren’t drug related. I thought he was sick. We got him to the doctor.
He was in his early thirties by then—and his family had missed every single sign until he was so sick, the doctors suspected that he may have been in a psychotic state on and off for over ten years. Michael was diagnosed with paranoid schizophrenia. He hated that. He was sure he was “just bipolar.”
It’s interesting that no matter how you’re doing, everything is relative. To my brother, being bipolar was preferable to being a person who sees and hears things. But, he had his diagnosis and prescriptions for medication—meds that had serious side effects and that he did not want to take. Although his diagnosis was helpful in that we finally knew he had a mental health issue his prognosis wasn’t great because he’d been in a psychotic state for so long. The key to successful treatment of paranoid schizophrenia is that the patient needs to know the difference between being well and being sick. Since he’d been sick for so long, it was all he knew, and he did not want or accept much help or care at all.
His psychiatrist told me Michael had been in a psychotic state for so long that although medication (as long as he took it) would stop the visual and audio hallucinations, they would not erase the memory of them. Those terrifying visions and voices would always be in his mind. No matter what anyone said, they were real to him. Resources are available for sufferers and their families, but again, they are more helpful to someone who gets an early diagnosis.
The next several years were a roller coaster of Michael going on and off his meds. He would be calm and relatively stable, but dopey. Then, he would feel better and stop the medication. Several times he was arrested and committed to the hospital. As an adult in Canada, he could only be committed for seven days, and as an adult in Canada who had not been convicted of a crime, he couldn’t be forced to take his medications.
At this point, my parents were getting older. My father moved out of the country, and my mother, whose own health was deteriorating, lived an hour away from my brother. We had a family friend who was there for Michael when I couldn’t be—by this time, I had two young daughters and could only do so much. Still, I was on the next of kin call list for Michael. I kept begging him to take his medication, for years. He kept not taking them. I’d get the calls, either from him, the hospital or the police, and I’d spend nights worrying about whether or not he was okay. His behaviour was so erratic that when my husband, our two daughters and I moved to our new home, I didn’t give him our address. He had lost his driver’s license, so I would go meet him when he needed me. He was still my brother, and I know he wanted to see my daughters, but I also know he was ashamed of his condition, even while he was deep in the throes of its pain. We weren’t afraid of him, but his delusions were getting worse. I would meet him for lunch but eventually stopped bringing my daughters. This was so painful because I know he loved them. But, over time, Michael grew more afraid and hid more. This was the nature of his disease—he would just disappear.
I had been in touch with the mobile mental health crisis team in our city. They were visiting Michael but concerned he wasn’t taking his medication. I was too. I called Michael on his cell phone and had a long talk about how afraid he was. I was trying not to cry and kept telling him that what he was seeing and hearing wasn’t real—that he was safe. He told me I had no idea what I was talking about. And it was true. I didn’t.
You know when you see someone yelling on the street to no one? Talking to themselves or to an empty space? That was my brother. He wasn’t dangerous, and he didn’t deserve to be feared—he was afraid and needed help. No one chooses mental illness. They aren’t crazy, loony or mad. They are sick and suffering. They are in pain.
About a decade after Michael’s diagnosis, an unmarked police car pulled into the driveway. I felt numb as I saw the plainclothes officers walk towards my front door.
Michael had died by suicide. I had to call my mother and father to tell them their son was dead. I called my cousin and asked her if she could go to my mother’s house and be with her when I called to tell her the news. I called my father in Mexico, while he was in the middle of hosting a dinner party. My parents were silent. Devastated. But I could tell they weren’t surprised by the news.
I was, and remain, frustrated that we don’t have a cure for paranoid schizophrenia. That we don’t have better therapy and treatments for those who suffer from mental illness. That we let our fear take hold when we know damn well that anyone who struggles is more of a risk to themselves than anyone else. I have since noticed that when we speak about mental illness, we speak about it like house sitting. We put the burden of care on family and friends and tell them they must check in! Call them! Look for signs! But it’s ridiculous to expect friends and family members to do the job of a physician. I made all the calls. I called the doctors. I did everything I could do. But how does any of that help someone with a serious illness? We need to find better treatments until there is a cure. We need to treat mental illness as a disease that can be fatal because so often it is.
What is it like to love someone with mental illness? It’s frustrating because we are, for the most part, powerless to help them. We watch them suffer the pain of their illness, often while refusing our help. But it’s harder for the one suffering from the disease—whether it’s depression, bipolar disorder or paranoid schizophrenia. We can't blame them and we can't get angry at them—this isn't their fault. They didn't ask for this.
I was often at a loss for how to support my brother, but now I’m at a loss for how to go on now that he’s gone. It’s for this reason that I will never stop talking about mental illness, and I will never stop sharing his story.
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