The Long Road

A mother’s perspective on mental illness, community and recovery  

Lisa*

Reprinted from "Families and Crisis" issue of Visions Journal, 2017, 12 (4), p. 17

People say that nothing changes you like becoming a parent. I was so excited to become a mom; when each child came along, they just fit right in like they had always been part of the family.

When we have children, we have the highest hopes for them to grow up healthy, able to find their passion and live a full life. We all have these hopes, and it is devastating for the entire family when they don’t play out they way we would like them to. But sometimes our children get sidelined for the short term, or perhaps even for a longer term, by a serious mental illness. 

My eldest son was always a bright, happy child with plenty of friends. He participated fully in any and all adventures. But when he was about 16 years old, his dad and I started to notice subtle changes. He became quieter, participating less and less in the outside world.

Our son’s first psychotic break and suicide attempt occurred in the spring of 2014, when he was 18 years old. He had moved away from home and was not sleeping or eating well, smoking pot and drinking alcohol. After he tried to take his life, he returned home psychotic. We called emergency services. He spent the next two months in the hospital. After several weeks of antipsychotic medication, he was given a diagnosis and certified under the Mental Health Act. 

We were completely devastated by the diagnosis of schizophrenia; when our son was finally discharged from hospital, we were told that we had to prepare for a long road ahead. We were referred to the British Columbia Schizophrenia Society (BCSS) and told to sign up for the Families First program. We were also given a list of support services. 

The next two years were very challenging. Our son experienced several psychotic episodes and was admitted to the hospital several times. After 10 difficult months at home, he was moved to mental health housing. Shortly after he turned 20, two days before Christmas 2015, our son made his second serious attempt to end his life. Another hospitalization followed, and yet another medication change. 

Mental illness strikes out of the blue, no matter your level of parenting skills, income, education or how much you love your children. Yet among the general population, there is remarkably little understanding about the nature of mental illness and the toll it takes on individuals and family members. There is a tendency on the part of relatives and friends—even strangers—to directly or indirectly blame family members for the situation.

Our son’s illness has had a huge impact on the entire family. We have lost touch with friends and acquaintances who just don’t “get it.” Some are afraid, some say, “Maybe it’s time to walk away,” and others say, “That’s so surprising because you are such good parents.” Over time, the family became increasingly isolated. I was exhausted, having to provide 24-hour care for our son. About 10 months after our son’s first suicide attempt, soon after he moved to mental health housing, I was diagnosed with caregiver burnout. 

I was told by my therapist that my son’s risk of suicide was so high that I had to have a life in place—just in case. I began an exercise routine and started walking seven kilometres every day. I focused on healthy eating patterns, and I started night school courses to give my mind something else to focus on. Educating myself about mental illness and the effects of stress also helped to ease my anxieties about the family. As my family saw me regaining my “normal,” they began to feel better too. Eventually my energy returned, and I had the emotional strength to refocus on all my children. I even began working part-time. 

But as difficult as these years were for me, I cannot even begin to imagine how terrifying the past few years have been for my son. I can only liken it to having someone tie my hands behind my back and confuse the thoughts in my head. 

In early 2016, it felt like a late Christmas gift when our son was accepted into UBC Hospital’s BC Psychosis Program. He began the program in February of 2016. I was finally able to believe he was safe, getting the sort of long-term, intense and unrelenting treatment that he needs. This involved medication therapy, but it also included learning how to make healthy life choices. While our son’s illness is not his choice, it is exacerbated by poor behaviour choices, which for him include choices about food, alcohol and drugs, exercise and sleep routines. 

Psychotic illnesses are devastating for those experiencing them and for those who must watch their loved ones go through such an experience. My son’s illness has changed me more than any other event in my life. It has been a long process to deal with my anger, frustration and disappointment in a system that is so hard to navigate. And for a long time, I felt guilty, as if my son’s illness were my fault. Even my son has had to tell me, “Mom, it’s not your fault.” After a while, I began to accept the truth of this statement. 

Education has been the key to easing my anxiety about my son’s illness and to my understanding what he is going through. In the past few years, I have educated myself a great deal about mental illness and the mental health system in BC. I have read everything I can find and I have participated in as many educational programs as I can. It is an ongoing process.

Throughout, BCSS has been very helpful. The organization holds an annual conference on a variety of mental health subjects, and the BCSS family support group provides the opportunity to meet other families. There is no replacement for meeting people who have lived through the same experience: it is gratifying to interact with others who “get it.” 

It has been a painful process for everyone involved—not only for our son and his parents, but for his siblings, our extended family and our friends. 

When our son participated in his first group therapy session early in 2016, we began to hope that he might eventually reach a place of peace. When that happens, the rest of our family will finally have peace as well. After all, he is expected to make a full recovery—it just may take him a while to get there.

At the end of 2016, 12 months after he entered the UBC Hospital program, our son began transitioning home. It has been a long road. We are so thankful that the attentive care from his health care providers (with a trial of clozapine) has resulted in a positive outcome for our family. Our son is adjusting nicely to home and his family. He has started to reconnect with old friends. Things are definitely looking up.

I hope in time our son will accept his illness and get back to having happy, healthy adventures. We could not have come this far without significant help from the local Early Psychosis Intervention Program, the local chapter of BCSS, a host of caring health care providers and our family and friends. Recovering from a mental illness really does take a community.

 
About the author

Lisa is the mother of four children, one of whom has a serious mental illness. Her son took part in the BC Psychosis Program at UBC Hospital and then spent time in a tertiary care facility. He currently resides with his family on Vancouver Island

*pseudonym

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