Best Practices for Family Caregivers of People with Schizophrenia

TAC / 08 November 2021

By Kathy Day

For the past eleven years, my close family member has had a very misunderstood illness: schizophrenia. In the early days of my family member’s illness, I chose to educate myself and then others about what schizophrenia really is. I searched the internet for information, read every book I could find on the topic, and connected with other family caregivers on social media and in local support groups.

Before his diagnosis, I was as ignorant about schizophrenia as most people who have never had a loved one who is seriously and persistently mentally ill. I threw around terms like “crazy” and “psycho” without realizing how hurtful that can be to people suffering with this devastating brain illness. As the saying goes, “You can’t know what you don’t know.” That is never truer than when a brain illness hits.

As someone who has been a caregiver for a close family member with schizophrenia for over a decade, I’ve learned a lot about this illness and the system of care. I’ve learned how to work with my loved one and not against him. I’ve learned how to take care of myself so that I can better care for him. We didn’t ask for this role and our loved ones didn’t ask to be ill. We find that in many cases, we will be filling the role of caregiver, pharmacy tech, therapist and behavioralist. None of this is fair, but the sooner we learn this, the better our relationship will be with our loved one.

Here are some strategies that have been helpful to me in my journey with my family member:

1. Learn about anosognosia

We may see people on the street, talking to someone we can’t see. To them, it is reality. People in psychosis may strongly believe there is nothing wrong with them and that they don’t need help. It’s important to understand some of the reasons people don’t seek help. Here are some reasons:

They may be unaware that they are ill. This is a symptom called anosognosia. More than 50% of people who have a schizophrenia diagnosis lack insight into their illness. You cannot convince them they are have an illness, anymore that I could convince you that the sky is green. They simply can’t understand.
Treatment is hard to get, even if you have insight. There are long waits to see a psychiatrist. There are hoops to jump through with insurance providers. Some people get so discouraged by this that they stop seeking treatment.
Another reason people don’t seek help is that they may have had bad experiences in the past. They can’t trust the “system” of care due to these real and perceived negative experiences.

2. How to comfort someone in crisis

Psychosis can be scary to witness. If this is new to you, there are some things to keep in mind:

Keep the environment calm in a crisis. Turn on some mellow music and keep the environment quiet.
Don’t argue with the person in crisis. You don’t have to agree, either. Empathize with what they are feeling, but don’t agree with what they are saying. For instance, if they are exhibiting paranoia, don’t agree that the government is after them. Instead, say something like, “It must be scary to feel that way, but I’m here to help you feel safe.”
If the person is a danger to themselves or others, call a local crisis team or 911. Most states require the dangerousness to be imminent and observable. Danger may include self-harm, like cutting. It may include threats of violence against another with the means to harm them. If they are suicidal, it’s time to call a crisis team or 911. When you call, clearly explain that your loved one is experiencing a psychiatric crisis and tell the dispatcher whether you feel safe or not. Ask them to send a crisis-trained officer or team.

3. Make a safety plan

Ahead of a crisis, make sure to have a family safety plan. This plan should include the following:

A clearly defined plan that is communicated to all residents in your home. This plan can include a code word that alerts family members that it’s time to enact the plan. A code word won’t alert the loved one in crisis, but it will help you communicate the need for safety quickly and easily.
A rendezvous point. Depending on your situation, this may be that all family members run out to the car in the driveway. If you have younger children, a trusted neighbor’s home could be the rendezvous point.
Designate a family member to be the one to call for a crisis team or 911. That person needs to be determined ahead of time so that others know someone will be taking the lead.
Discuss a plan for what to do after the crisis team arrives. Have plans based on two scenarios: 1) Your loved one has been taken to the hospital, or 2) your loved one didn’t meet criteria and the crisis team was unable to take them away from the home. You may decide that you’ll stay away from the home for a period of time, or one or two people stay behind to be sure the loved one is safe.

4. Involve your loved one in their own care, when possible

They need to feel respected and valued and in control, at times.
We can be tempted to take care of everything for them, especially while acutely ill.
If there is something they can do, let them do it.
Don’t criticize if it’s not perfect. Thank them for trying.
Help them to gain some control over their life.

5. Stay positive

No matter how hard caring for them is on us, we can step away from the situation. Our loved one is always in the throes of this illness and can’t step away. Deep down, your loved one is still the same person. They have a disease that has changed some of their thoughts and behaviors.
Focus on the good things they do, no matter how small. Show gratitude for these small things.

6. Practice self-care

Take care of your own health. Caring for someone with schizophrenia can be exhausting. There is so much burnout and frustration, both with our loved one and with the system of care. So how do we take care of ourselves?

Set aside some time each day to do something just for yourself. You could go for a walk. Read a few chapters in a book. Have a conversation with a friend.
Eat right. Get enough sleep each night. Exercise. Socialize.
Do not neglect your own health concerns. Too many of us are so busy taking care of our loved ones that we think our own health can wait. It can’t. If we can’t take care of them, who will?

7. Find support

Connect with a support group. There are many groups available to families. Some are in person, some are on Zoom, and many are on social media. Connecting with people who “get it” is the best feeling at a time when we may be struggling.

Remember, your loved one didn’t ask for this illness. They didn’t choose the situation. They can’t just walk away from their pain. Remember that deep inside, they’re still the person you love. Try to let your love show through when using the tools in this guide.

Kathy Day is the senior family liaison at Treatment Advocacy Center and a family caregiver. She also serves as her family member’s conservator.