One of the most important things to do when caring for someone with schizophrenia is to check in frequently with their care team, says Frank Chen, MD, medical director at Houston Behavioral Healthcare Hospital.

That can be difficult, especially if your loved one is resistant to treatment and/or doesn’t want you to participate.

“There can be a lot of disbelief that a loved one actually has this diagnosis and a lot of confusion about how to communicate with the healthcare team,” says Chen, who speaks from personal experience. Her brother was diagnosed with schizophrenia at age 26.

How to stay informed

Here are some ways to make sure you are informed about your care.

Get your paperwork in order. Ask your loved one to complete a release of information form provided by their medical provider. This allows that provider to talk to you about your health care. The person with schizophrenia can also fill out a form naming you as his or her health care proxy. A proxy can make health care decisions for them if they become incapacitated, such as during a psychotic episode. Your loved one’s doctor can help persuade him or her to complete this paperwork. If they don’t sign the forms, there are still ways to stay involved in their care, Chen says.

Accompany your loved one to appointments. They may want you to be present when they talk to your doctor or mental health care provider. Or they may want you to sit outside in the waiting room. Either way, it’s a good idea to be present, says Dawn Velligan, PhD, a psychologist specializing in schizophrenia at UT Health San Antonio.

“Often, if a patient is alone at a doctor’s appointment, they will simply tell the doctor that they are fine and no changes will be made to their treatment plan,” he says.

But if it is there, you can tell your medical provider:

• How your loved one is responding to medications
• How they work in daily life
• If you are concerned about your safety

It’s helpful to have a list of questions or topics to talk to the provider about, Velligan says. These could include:

• Any physical or mental symptoms that the person with schizophrenia has had.
• Your response to current medications, including side effects.
• If you have felt better or worse since your last appointment
• Any other observations you have made.

If your loved one goes to the hospital

If you have a loved one with schizophrenia, they may end up in the hospital at some point, either voluntarily or through involuntary commitment. If that happens, try to be there when they enter the emergency room to give the hospital information about their care, Fogel says.

If you only find out after you’re admitted and you don’t have permission to talk to staff about your care, Fogel recommends giving a letter to your care team at the hospital. He should include his concerns and any medical information he can provide, including a list of current medications. This can help medical providers evaluate your loved one and make a treatment plan.

If you can legally participate in your care, provide the staff with your complete medical history. If your symptoms have improved (or worsened) since you were hospitalized, let your doctors know.

“Often, families only want to talk about how patients were doing at home before hospitalization, which is not always helpful,” says Hossam Guirgis, MD, associate professor of psychiatry at Wexner University Medical Center. Ohio State. “We want to know what they look like now compared to how they were before, to evaluate whether the treatment we are providing is working.”

Know that even once your loved one is discharged from the hospital, psychotic episodes can occur again, especially if they stop taking their medications or skip doses.

“Some family members assume that a patient diagnosed with schizophrenia will only need to take medication for a short period of time and then recover,” Guirgis says. “That is not the case. It is a condition that will affect the patient and their caregivers for life.”