Author: Canadian Mental Health Association, BC Division
We naturally want to help a loved one who isn’t feeling well. How we can or should help may seem fairly obvious when a loved one experiences a physical health problem, but many people say they’re not sure how to best help when a loved one experiences a mental illness like schizophrenia. Here are some tips:
You don’t have to be an expert in schizophrenia, but learning more can help you understand what’s going on. There are a lot of myths about schizophrenia, so it’s a good idea to find some trustworthy resources. Our Schizophrenia info sheet is a great place to start. You can also find a lot of information from the BC Schizophrenia Society.
Sometimes talking about problems or concerns can really help. It’s important to understand that talking about something difficult like experiences of schizophrenia can be very hard for your loved one—and the symptoms of schizophrenia can also make conversations difficult. If a loved one opens up to you, listen actively—that is, without distractions like your phone or the TV. Really pay attention to what they have to say. Give them time to finish their thoughts, even if it takes a bit longer than usual. Listen with empathy and without judgement. Even if you don’t understand the problem or you see the problem in a different way, your main concern is the distress or difficult feelings your loved one is experiencing. You can find in-depth tips on listening and communicating well in Module Three of the Family Toolkit. Some people are not ready to talk about everything at once, or at all. That’s okay! Respect your loved one’s boundaries and let them tell you when they’re ready to talk.
Use empathy, not arguments.
Symptoms of schizophrenia like hallucinations (sensations that aren’t real, like hearing voices) or delusions (beliefs that can’t be true, like believing that you are being followed by a spy) can take some time to stop even when people are receiving treatment and following their treatment plan. As a group, these very distressing symptoms are called psychosis. Many people have a hard time responding to a loved one’s hallucinations or delusions. It’s best to avoid arguing about these experiences. Remember that delusion are symptoms of schizophrenia—they are not thoughts that you can talk someone out of. Telling someone that their experiences aren’t real or aren’t true doesn’t help when the experiences feel very real to that person! A better approach is to empathize with the feelings that hallucinations or delusions bring up—without confirming or denying the hallucination or delusion. For example, if a loved one is frustrated or upset when they hear voices, it isn’t helpful to say something like, “You’re okay! It isn’t real. I don’t hear anything.” Instead, you might say, “I can only image how upsetting that voice must be. I can see the voice makes you feel scared.” Know that with good treatment and support, symptoms like hallucinations and delusions become much easier for people to manage and lose importance.
Ask how you can help. When people experience a serious mental illness like schizophrenia, they may want to plan how they can take action if they start to feel unwell again, especially if they have dependent children. These plans, such as advanced directives or Ulysses Agreements, are made when a person feels well and are meant to communicate their wishes to loved ones and their care team. Ask your loved one if they have a plan in place so you know what they need if they need help. If you’d like to learn more about planning for care, see the BC Schizophrenia Society.
If a loved one is experiencing an episode of psychosis or is recovering for an episode of psychosis, they might need extra help. For example, people who are actively experiencing hallucinations or delusions might need a lot of personal space and feel uncomfortable being around a lot of people or even making eye contact. When people are recovering from an episode of psychosis, they may need a quiet space and a lot of rest. Sometimes people can get back into their usual routines fairly quickly, while other times it may take a lot of time (and effort) to get back into routines. Keep in mind that too much help can be a bit counterproductive. It may well be faster and easier for you to take care of your loved one’s tasks or chores yourself, but rebuilding activity and confidence are a big part of recovery. Encourage and support your loved one as they take on daily responsibilities, and let them tell you when they need extra help.
Don’t take it personally
Schizophrenia can be a difficult illness—for everyone. During episodes of psychosis, your loved one may experience frightening sensations that you can’t understand. They may act in ways that you don’t understand. Other symptoms of schizophrenia can make it hard for people to express emotions or feelings, communicate clearly, or seem interested in others. It’s important to know that these are symptoms of an illness. They are no one’s fault, but they can still be hard to cope with. Consider reaching out to a family and friends support group for your own support. The BC Schizophrenia Society has a directory of groups around BC at www.bcss.org/monthly-meetings-calendar/.
Take care of yourself, too
As a family member, it’s important to take care of yourself. Try to maintain your regular schedule and activities, such as your exercise routine and hobbies. Ask another family member or good friend to provide help with caregiving, especially in the early days of your loved one’s illness. If you need help balancing time for self-care with caregiving duties, check out the BC Schizophrenia Society’s Family Respite Program.
Maintain your social network
Try to maintain your friendships or the network of people that you have in your life. These will later become important supports as your loved one recovers. Educate them and update them on your loved one’s recovery. People are sometimes afraid to ask questions about schizophrenia and this will put them at ease.
Encourage your loved one to keep up with their treatment and recovery plan
This is very important! You are not responsible for your loved one’s treatment (unless your loved one is your child under 19), but you can support them. Schizophrenia can make it difficult for people to make and go to appointments and follow their treatment plan. With your loved one’s permission, you may choose to help by reminding them of appointments, taking them to appointments, or whatever helps in your situation. If your loved one isn’t happy with their treatment or would like to try a new approach, you can encourage them to talk with their care team, like their doctor or mental health team—it can be dangerous to stop or change a treatment without a doctor’s support.
Treatment can be a difficult area for loved ones. It’s hard to see someone you love in pain. You might be scared of the things your loved one is experiencing. You want to help. But in order for any treatment to work, your loved one needs to be active in their care. Forcing or threatening treatment generally doesn’t work (or if it does, in the case of an emergency, only for a short time) and can often hurt everyone involved. In most cases, anyone 19 years of age and older and not at risk of harm is free to make their own choices. And their choices may include refusing treatment or choosing a treatment that you disagree with. It helps everyone if you can be respectful and keep honest communication open between you.