4 Ways to Find the Support You Need While Caring for a Person With Schizophrenia

Caring for a friend or loved one with schizophrenia can often feel all-consuming. You may find yourself sacrificing work, school, or downtime during moments of crisis. Remaining hours, meanwhile, are often given to daily obligations like clinic visits, pharmacy runs, and supporting your person’s symptoms.

It can also be a lonely experience. The more time you find yourself caring for a person with schizophrenia, the less time you may have to spend with other people — and the less bandwidth you may have to reach out for help.

This guide to caregiving support has been designed by caregivers for caregivers. You can access these simple strategies and resources right now to help you build your caregiving network. Here are four top tips.

1. Find Your People

“For caregivers of persons living with schizophrenia, it can also be hard when the person is not able to relate and connect with the caregiver or if they react inappropriately in social situations,” says JoEllen Schimmels, PhD, DNP, the interim psychiatric mental health nurse practitioner specialty director and a clinical professor at Emory University Nell Hodgson Woodruff School of Nursing in Atlanta. “That dynamic can be even more isolating for the caregiver. If they are in situations where the person is made fun of, it can be painful or embarrassing and contribute to more self-isolation, loneliness, depression, or anxiety.”

While these barriers to connection are real, there are people out there who get it — people who have been there before. And even if there are countless other things on your to-do list, it can change your life (and theirs) for the better to find one another.

You can find other caregivers through:

• Caregiving support groups, such as those offered by the Family Caregiver Alliance, the Schizophrenia & Psychosis Action Alliance, or your local office for the National Alliance on Mental Illness
• Online communities like The Mighty, which includes open forums, inspiring stories, and resources
• Social media groups, such as Facebook’s Caregiver Support Community, Working Daughter, or Caregivers Connect

Just know that it’s okay if you don’t have the energy for social interaction right now. It can still help to hear the stories of other caregivers. The Schizophrenia & Psychosis Action Alliance posts interactive stories from real people in the schizophrenia community where you may find comfort and practical advice.

2. Learn More to Worry Less

For many, a significant source of stress in caring for a person with schizophrenia is self-doubt: “Am I doing enough? Am I doing too much? Are my words or actions causing more harm than good?”

The good news is, you don’t have to guess. There are reliable, clinically tested listening and communication tactics that caregivers can borrow. Even if you can’t fix every problem facing the person with schizophrenia, you can support them in safe and appropriate ways.

Here are some strategies to start.

• Download the Caregiver Toolkit from the Schizophrenia & Psychosis Action Alliance to learn helpful phrases, plus communication dos and don’ts.
• Practice motivational interviewing for caregivers, as explained in this webinar from the Family Caregiver Alliance. This powerful communication skill set can help you encourage behavior change (like quitting smoking or sticking to mental health meds) with less conflict, while honing your listening skills.
• Find a Mental Health First Aid course near you using this national search tool from the National Council for Mental Wellbeing.

Finally, many caregivers are never taught how to navigate or de-escalate high-stress symptoms like agitation, delusions, or hallucinations. Learn the basics of de-escalation with this 10-minute video from Ozarks Healthcare. Also be sure to develop a crisis action plan with the person’s psychologist or social worker, including what to do, whom to call, and what to say when a person is in crisis. The National Alliance on Mental Illness has a guide with some helpful sample documents.

3. Find Respite Care That Works for You

“I've met many caregivers who had to go through a number of respite professionals to find one they could depend on should the person with schizophrenia become confused or paranoid while the caregiver is away,” says Schimmels. “Sometimes the patient or client does get confused with a respite professional, and it can make symptoms potentially worse. There is a great deal of guilt, blame, shame, grief, and angst about ‘what if something happens?’ when the caregiver isn't there.”

While it can be challenging to find the right kind of support, there are expert strategies that can help. Schimmels recommends that you:

• Seek out respite care that is specialized for schizophrenia, as opposed to any adult day care or respite care center. (Many facilities specialize in dementia care, for example, which calls for different care strategies.)
• Request an observation day before deciding on a facility. Shadow the staff for a shift to get a feel for their culture and the interactions between patients and staff.
• Ask about the facility’s schizophrenia protocols: How do they respond when a person is agitated or having a hallucination? What tactics do they use to help people feel calm and safe? Do they ever use physical restraints?
• Know the staff-to-patient ratio: Do they have adequate people power to give the person you are caring for the attention they deserve?
• Ask other caregivers and residents for honest feedback about their experiences.

Finally, compare the activities and therapies that facilities offer. Some facilities offer art therapy, outdoor activities, movie nights, exercise classes, and more. The right respite care could turn out to be a mini staycation for the person you're caring for.

4. Consider Therapy for Yourself

Therapy offers a place to voice the challenging and potentially confusing emotions that can come with caregiving. Feelings like anger, resentment, guilt, and shame are common and valid, but not always easy to share with family and friends.

A good therapist won’t judge or offer solutions before you're ready. If you are seeking solutions, or you do want help setting boundaries, they can work with you to set realistic goals and to build the skills you need to make those goals a reality.

Finally, if you have insurance, explore your insurer’s directory of clinicians to find affordable, in-network options near you. Other organizations that can help you find a therapist include the Substance Abuse and Mental Health Services Administration and the National Alliance on Mental Illness. PsychologyToday also has a provider search tool on its website.

• Seeking help when you’re a caregiver for someone with schizophrenia isn’t an indulgence or a sign that you’ve failed; it’s essential to your own well-being and that of your loved one.
• Caregiver communities, whether in person or online, are valuable sources of both support and practical information.
• Find a facility that offers respite care specifically for people with schizophrenia so you can have backup or a break when necessary.
• Consider working with a therapist to help you manage your own feelings and learn coping strategies and communication skills.