As I awaken to the sound of footsteps pounding up the stairs, I wonder what kind of a day lies ahead. Will it be a quiet, pleasant day of shared meals and chores? Or will it be a day of rants and screams, eyes bulging out of sockets and veins popping out of necks?
My husband and I live with our adult daughter who has schizophrenia. It can be a hard-to-treat disease, and she has been unlucky enough to be “treatment resistant”. That means that medications have little or no effect on her symptoms.
The day begins quietly enough. We have a quick conversation about what she would like to do today. She often makes plans, but finds it hard to follow through. She spends a lot of time in her room chatting on Facebook. Many of these “friends” are people from other countries. She has never met any of them. I pray that they are not trying to take advantage of her.
When we talk, she uses a sing-song voice. She does not make eye contact. She saves that for when she is screaming at me.
Today is a weekend day and she has little to do. During the week, she works part time at a social enterprise that employs people with disabilities, of which I am the managing director. I am amazed that she can pull herself out of a full-on psychotic frenzy and show up at work. She is a good worker, although after a year and a half on the job, she needs to check in often and ask how to do simple tasks, or inquire where things are kept.
I wish that people could see her when she was a child and a teenager. She was so full of life. Most things came easy to her. She was an honours student and engaged in so many school activities. She was an amazing artist, had many friends and a wonderful sense of humour. I remember how she was when she went away to college. That girl has never returned to us.
Some days I think about what her life would have been like if she had not developed schizophrenia. What would her life’s work be? Would she have found a career in film? Would she be married or in a relationship? Would she have children? Would she be living in a big city? I cannot allow myself to think about this very often because I start to cry.
I hear her voice drifting up from downstairs. She is having her daily conversation with…? “I don’t know why we’re here. What’s the big secret? Why won’t anyone tell me why we’re here?” This one-sided conversation plays on an endless loop. Many times I have tried to reason with her, to answer her questions, to provide some comfort. My words fall on deaf ears. Recently, I yelled at her, “Why can’t you hear me?”, and she just yelled back, “You don’t hear ME!” And on it goes. Sometimes she goes to her room and screams and screams. I try not to reason with her anymore. It just upsets her and me. Why can’t she understand?
Evenings are the worst. She’s pretty calm during the day, but some evenings all hell breaks loose. Then the screaming begins. She believes that she has been raped in the past by one, then it was two, now three different men. She wants to know why they aren’t under arrest. Why there is no judgment for them. Did this really happen to her? She yells that she doesn’t want to have children and that she knows where babies come from. It does not make much sense. Is she just very sad that she will never be a mother?
We visit a psychiatrist now. It took a forced committal to the local mental health facility to be able to see a psychiatrist. She is part of a team now that looks after her medications and provides some social outlets. We are trying a new medication but it is not going well. She seems to be getting worse. Up until now, she had not had regular access to a psychiatrist for five or six years. It’s a relief to finally have this team in place. But when we visit the team, she clams up and doesn’t tell them all the things that upset her. She is a model patient. She says she is not crazy, but sees that it’s smart to suppress her behaviour in the company of others.
Her medical team, my husband and I are trying to get her to try the “gold-standard” medication, but she is refusing because there are a number of blood tests involved. She gets the last say. I have trouble with this whole concept. How can a person who has such difficulty with rational thinking be allowed to decide on their medication? Her thinking is “crazy,” so she needs the medication, but because her thinking is “crazy,” she is making a “crazy” decision. And legally, she has very right to do so. Legally. Where’s the morality in this? Where’s the help for the person who is sick? How do I help my child?
We had a very bad evening recently. I was scared of her. That hasn’t happened for many years. She was as angry as I have ever seen her. I thought that she was going to hit me. What would I do if that happened? Would I have to call the police? We’ve been down the police road before. They came and took her to the hospital last June when she was completely delusional. My husband and I had to go to a justice of the peace to start that process. It’s quite horrible to have to explain in a court of law why you would like to have your daughter committed against her will. But we did it. And because of that, she is part of the psychiatric team that is trying to help her now. She is still angry with us about this, but it was worth it.
What is the future for my daughter? My husband and I are getting older, and we won’t always be here to help her along. My greatest fear is that she will become homeless and have to live on the streets. Today, the high is -18 degrees Celsius. How do homeless people survive this? We have put together a bit of a plan for her, but it’s not nearly enough.
I used to attribute (a nice word for blame) this illness to my husband’s side of the family. Then I did some genealogy research and found two relatives of mine who also had schizophrenia. The joke’s on me. She got a double whammy.
At church, I say a “help us” prayer for my daughter and our family, and a thank-you prayer for the church community that helps in so many ways. Many in our church family reach out to her. They take her out for lunch. They volunteer at and support the social enterprise that employs her. They comment on her Facebook posts. They teach her how to cook and garden. They listen to her and encourage her. They pray for her. I should tell them how much this means to her, and to me. Without my church family, I could not do this.
I am a fixer. If there is a problem, I see it as my mission to fix it. But this illness has broken my daughter, and I cannot fix it. No matter how many drugs we try, no matter how much medical help we receive, no matter how hard we all pray, she is suffering. I cannot fix this. We must all find a way to live with schizophrenia.
Tonight all is quiet. We each retreat to our own electronic devices and watch Netflix.
The author's name has been withheld for privacy.
For more of The United Church Observer's award-winning content, subscribe to the magazine today.
Get The Observer’s latest stories on justice, faith and ethics by signing up for our e-newsletter. It only takes a few seconds to join and we’ll deliver award-winning content to your in-box.