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

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

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

How to Stay in the Loop

Here are some ways to ensure you’re informed about their care.

Get your paperwork in order. Ask your loved one to fill out an information release form provided by their medical provider. This allows that provider to speak with you about their medical care. The person with schizophrenia can also fill out a form appointing you as their health care proxy. A proxy can make health care decisions for them if they become incapacitated — like during a psychotic episode. Your loved one’s doctor may be able to help persuade them to complete this paperwork. If they won’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 there when they talk with their 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 who specializes in schizophrenia at UT Health San Antonio.

“Oftentimes, if a patient is alone at a medical appointment, they’ll just tell the doctor that they are doing fine, and there won’t be any changes made to their treatment plan,” she says.

But if you’re there, you can let the medical provider know:

  • How your loved one is responding to medications
  • How they’re functioning in daily life
  • Whether you have concerns about their safety

It helps to come with a list of questions or topics to speak to the provider about, Velligan says. These might include:

  • Any physical or mental symptoms the person with schizophrenia has had
  • Their response to current medications, including side effects
  • Whether they’ve felt better or worse since their last appointment
  • Any other observations you’ve made

Your loved one should do as much of the talking as possible, Velligan says. But if you have questions or concerns, make sure those get addressed.

Maintain communication between appointments. If your loved one complains of side effects, refuses to take medicines, or their symptoms get worse, tell their doctor. Call the office, or send an email or text through an online patient portal. You can do this even if your loved one hasn’t given consent for you to participate in their care.

“Even if the provider legally cannot speak to you, you can still provide information to them,” says Sarah Fogel, a licensed clinical social worker in Fairfield, CT.

If you have permission to talk to the provider, but they’re not returning calls, be persistent, Chen says.

“This used to happen to me with my brother’s care, even though the providers knew I was his sibling and also a psychiatrist myself,” he says. “It’s very important that they hear from you, especially if your loved one is decompensating and not displaying the best judgment right now.”

If Your Loved One Goes to a Hospital

If you have a loved one with schizophrenia, they may end up in the hospital at some point, either  voluntarily or from an involuntary commitment. If that happens, try to be there when they’re admitted to the ER to give the hospital information about their care, Fogel says.

If you only find out after they’re admitted and don’t have permission to speak with the staff about their care, Fogel recommends that you drop off a letter for their care team at the hospital. It should include your concerns and any medical information you can provide, including a list of current drugs. This can help medical providers assess your loved one and come up with a treatment plan.

If you’re legally able to participate in their care, give staff their full medical history. If their symptoms have gotten better — or worse — since they’ve been hospitalized, let the doctors know.

“Oftentimes, families just want to talk about how patients were doing at home before hospitalization, which isn’t always helpful,” says Hossam Guirgis, MD, associate professor of psychiatry at The Ohio State University Wexner Medical Center. “We want to know how they seem now compared to how they were before, to gauge whether the treatment we are providing is working.”

Know that even once your loved one is released from the hospital, psychotic episodes may happen again, especially if they stop taking their medicines or skip doses.

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

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