How to stay in the loop
Here are some ways you can get information about treatment:
Organize your paperwork. Ask your loved one to fill out a release of information form provided by their health care provider so that the provider can talk to you about their health care. A person with schizophrenia can also fill out a form appointing you as their health care agent. The agent can make health care decisions for them if they become incapacitated, such as during a psychotic episode. Your loved one’s doctor can help you convince them to fill out this form. Even if you don’t sign the form, there are still ways to participate in treatment, says Chen.
Go to the meeting place with your loved one. They may want you to be there when they talk to their doctor or mental health care provider. Or they may want you to sit outside the waiting room. Either way, it’s good to be there, says Dawn Velligan, PhD, a psychologist who specializes in schizophrenia at UT Health San Antonio.
“When patients come in alone for care, they often just tell the doctor that they’re feeling fine, and the treatment plan doesn’t change,” she says.
But if you are there, you can tell your healthcare provider:
- How your loved one reacts to medications
- How they function in everyday life
- Whether you are concerned about their safety
It’s helpful to come with a list of questions or topics to discuss with your provider, Velligan says. These might include:
- Physical or mental symptoms experienced by a person with schizophrenia
- Reaction to current medications, including side effects
- Have you felt better or worse since your last visit?
- Other observations you made
Loved ones should talk as much as possible, says Velligan, but be sure to address any questions or concerns they may have.
Maintain communication between appointments. If your loved one complains of side effects, refuses to take medication, or has worsening symptoms, talk to your doctor. Call the office, or send an email or text through the online patient portal. You can do this even if your loved one has not agreed to participate in treatment.
“Even if a provider isn’t legally allowed to talk to you, you can still give them information,” says Sarah Fogel, a licensed clinical social worker in Fairfield, Connecticut.
If you have permission to call a health care provider and they don’t answer your phone, be persistent, Chen says.
“This happened to me a lot when I was caring for my brother, even though the medical staff knew I was his sibling and a psychiatrist,” he says. “It’s really important that they listen to you, especially if your loved one is undercompensated and not exercising their best judgment right now.”
When your loved one goes to the hospital
If you have a loved one with schizophrenia, they will likely be hospitalized at some point, either voluntarily or involuntarily. If that happens, try to be there when they are admitted to the emergency room to provide them with information about treatment, says Fogel.
If you find out after you are admitted and are not authorized to talk to the staff about your care, Fogel recommends leaving a letter with the hospital’s care team. The letter should include your concerns, any medical information you can provide, and a list of current medications. This can help the provider evaluate your loved one and develop a treatment plan.
If you are legally allowed to participate in their care, give the staff their full medical history. If their symptoms have improved or worsened since they were admitted, let the doctor know.
“Families often want to talk about what the patient was like at home before they were admitted, which isn’t always helpful,” says Dr. Hossam Girgis, an assistant professor of psychiatry at Ohio State University Wexner Medical Center. “We want to know what they were like before, to gauge how they look now and whether the treatment we’re giving them is working.”
Be aware that psychotic symptoms may return after your loved one is discharged from the hospital, especially if they stop taking their medications or skip taking them.
“Some families think that if someone is diagnosed with schizophrenia, they can just take a short-term medication and get better,” Guirgis said. “That’s not true. It’s a lifelong condition that affects patients and caregivers.”
