One of the most important things to do when you’re caring for someone with schizophrenia is to have frequent contact with their care team, says Frank Chen, MD, chief medical officer at Houston Behavioral Healthcare Hospital.
This can be difficult, especially if your loved one is resistant to treatment and/or does not want you to be involved.
“People may be very skeptical that a loved one actually has this diagnosis, and also confused about how to communicate with the medical team,” Chen said, citing personal experience as an example. His younger brother was diagnosed with schizophrenia when he was 26.
How to stay up to date
Here are some ways to make sure you understand their care.
Get your paperwork in order. Ask your loved one to fill out the release of information form provided by their medical provider. This allows the provider to talk to you about their medical care. People with schizophrenia can also fill out a form naming you as their health care agent. If they become incapacitated (such as during a psychotic episode), a surrogate can make health care decisions for them. Your loved one’s doctor may be able to help convince them to complete the paperwork. If they don’t sign the form, there are still ways to stay involved in their care, Chen said.
Accompany your loved one to their appointment. They may want you to be there when they talk to their doctor or mental health provider. Or they may want you to sit outside in the waiting room. Dr. Dawn Velligan, a psychologist at the University of Texas Health San Antonio who specializes in schizophrenia, says it’s a good idea to be present no matter what.
“Typically, if patients go to the doctor on their own, they will just tell the doctor that they are doing great and there won’t be any changes to their treatment plan,” she said.
But if you are there, you can let your healthcare provider know:
- How your loved one responded to the medication
- How they function in daily life
- Are you concerned about their safety?
Willigan said it can be helpful to provide a list of questions or topics to talk to providers about. These may include:
- People with schizophrenia have any physical or mental symptoms
- their response to current medications, including side effects
- whether they feel better or worse since their last appointment
- Any other observations you made
Willigan says your loved one should talk as much as possible. But if you have questions or concerns, make sure they are addressed.
Maintain communication between appointments. Tell their doctor if your loved one complains of side effects, refuses to take medication, or if symptoms worsen. Call the office, or send an email or text message through the online patient portal. You can do this even if your loved one has not consented to your involvement in their care.
“Even if the provider is legally unable to talk to you, you can still provide them with information,” says Sarah Fogel, a licensed clinical social worker in Fairfield, Connecticut.
If you have permission to speak with a provider but they don’t call you back, persist, Chen said.
“This happened to me frequently while in my brother’s care, even though the medical providers knew I was his sibling and I was a psychiatrist myself,” he said. “It’s important that they hear from you, especially if your loved one is decompensating and is now unable to exercise their best judgment.”
If your loved one goes to the hospital
If your loved one has schizophrenia, they will likely be hospitalized at some point, either voluntarily or involuntarily. If that happens, try to be present when they are taken to the emergency room to provide the hospital with information about their care, Fogel said.
If you find out after they’re admitted and don’t have access to talk to staff about their care, Fogel recommends writing a letter to the hospital’s care team. It should include your concerns and any medical information you can provide, including a list of current medications. This can help healthcare providers evaluate your loved one and develop a treatment plan.
If you are legally able to participate in their care, provide the staff with a complete medical history. Tell the doctor if their symptoms improve or worsen since hospitalization.
“Often, families just want to talk about what the patient was like at home before they were hospitalized, and that’s not always helpful,” said Hossam Guirgis, MD, associate professor of psychiatry at The Ohio State University Wexner Medical Center. “We want to know what they are doing now. How the situation compares with before to measure whether the treatment we provide is effective.”
Know that psychotic episodes can return even after your loved one is discharged from the hospital, especially if they stop taking their medications or miss doses.
“Some family members believe that patients diagnosed with schizophrenia only need to take medication for a short period of time and then recover,” Gilgis said. “This is not the case. This condition will affect patients and their caregivers throughout their lives.
