Guidance for
caregivers
Being a caregiver for a loved one with schizophrenia can be both rewarding and challenging, but schizophrenia can be managed with your help.
Some responsibilities
The role of a caregiver for someone living with schizophrenia isn’t only to intervene on bad days, it’s about being there for your loved one every day. Some ways to be a great supporter can include:
- Being a collaborative member of your loved one’s Treatment Team. Join them at appointments, ask questions, and step in as your loved one’s advocate as needed to help communicate what they’re feeling. It’s also important to ask questions and help handle insurance and financial paperwork
- Educating yourself about schizophrenia and its symptoms
- Helping with day-to-day tasks
- Keeping a journal of important accomplishments, symptoms, setbacks, medications, and dosages as a way of staying alert for , and as a record of your loved one’s recovery process
Get started on recording the schizophrenia recovery process by downloading our Journaling Worksheet
Communication tips
It can be challenging to know how to talk to someone who is experiencing things you can’t also see or hear, but there are a few things you can do to communicate with your loved one more effectively.
- Speak calmly, clearly, and simply. For example, try to discuss 1 issue at a time
- Practice active listening: Lean in and pay close attention to what they are saying and repeat it back to them to confirm that you have understood
- Be sensitive to how your loved one is feeling. It’s possible to acknowledge the seeming reality of your loved one’s beliefs without supporting their delusions
- If they are withdrawing socially, try to engage your loved one with light and positive conversation
- If your loved one is saying or doing something that you don’t understand, try to ask questions to get to what the motive for their behavior is. That way, you can use that motivation to encourage a different behavior
- If your loved one is refusing to take their medication, try to focus your conversation on how medication is a key tool to help achieve their goals
For specific recommendations on how to speak to your loved one when they are experiencing an episode, see our Episode Recovery Guide
Talking with your loved one’s Treatment Team
Healthcare professionals are required by law to protect their patients’ privacy, so they cannot discuss information with a caregiver or anyone else without appropriate permission or legal authority. In order for you to help support your loved one’s treatment plans, your loved one may need to sign a patient authorization form that gives their healthcare professional permission to share information with you.
Often, releasing confidential information is your loved one’s or their legal decision maker’s choice. It’s important to respect your loved one’s privacy, but it’s worth having a conversation with them so they can better understand how signing a patient authorization form would be valuable at the start of treatment. Remind your loved one that you want them to make a clear, informed decision today. That way, you can be of assistance to their Treatment Team if there’s an emergency.
See our Treatment Change Discussion Guide as a starting place to find specific questions to ask your loved one’s Treatment Team.
Helping your loved one delay time to episodes
An episode is when schizophrenia symptoms re-emerge or get worse. Although they can’t be avoided entirely, there are things you can do to take control of delaying time to experiencing episodes:
- Help your loved one manage their stress levels
- Make sure your loved one is staying on track with their medication and understands the importance of medication in their overall treatment journey
- Try to build a sense of routine by involving your loved one in fun, day-to-day activities like meal preparation
Episode
warning signs
Even when your loved one is seemingly doing well, be sure to keep an eye out for early warning signs of an episode. Your loved one might not be able to notice warning signs in their own behavior or thoughts, so it’s important to know what to look for.
For specific information about the warning signs of an episode and how you can help, download our Episode Action Plan.
Understanding
side effects
Like any other medication, LAIs may cause side effects in some people. It’s important to factor potential side effects into your loved one’s decision to start on any medication. It can be helpful to talk through the potential side effects and the benefits of a potential medication together.
Helping on a
recovery journey
The management of any chronic condition is an ongoing process, and schizophrenia is no different. Schizophrenia recovery isn’t a single outcome—there are ups and downs along the way—but it’s important to be hopeful.
In addition to controlling symptoms with the help of medication and working with your loved one’s Treatment Team, recovery also involves helping your loved one move towards their treatment goals, like getting a job or furthering their education. Have a discussion with your loved one about their goals, and how you can work towards those goals together.
You can download our Treatment Plan Workbook to help take notes during the conversation.
Practicing self-care
It can be easy to put other people’s needs before your own, but your first responsibility is to take care of yourself. When you’re feeling your best, you’re more able to help those who depend on you. Here are a few reminders:
Set realistic expectations and goals, and accept that sometimes you cannot fix things for your loved one. Try to focus on what is going right for your loved one, not what is challenging.
It’s important to have a balanced life, so spend time with family and friends, try to get enough sleep, eat well, and keep stress levels down by exercising or finding other ways to relax.
There are people around you who can help you care for your loved one. Speak up if you think other friends or family members can help, and accept help when it’s offered for small tasks like errands. There are also nonprofit resources that can be of assistance.
Maye* is actively involved in her son Jason’s recovery journey and his transition to a long-acting injection (LAI).
*Maye is a volunteer with the SHARE Network, a volunteer program dedicated to helping adults living with schizophrenia share their personal health stories.