If you become a caregiver for a family member or friend with schizophrenia, it can be difficult to do it alone. The demands on your mental and physical health, as well as your personal life and finances, can be high.
“Many caregivers feel uncertain about what the future will look like, not just for their loved ones but for themselves,” said Christine Crawford, MD, MPH, associate medical director for the National Alliance on Mental Illness (NAMI).
“After a diagnosis of schizophrenia, all their expectations about work and relationships change. It’s a period of adjustment.”
But during this time of adjustment, there are a wealth of information and support resources available to you. You just have to be willing to ask and know where to look.
Education about schizophrenia care
“Caregivers often have a hard time understanding the diagnosis of schizophrenia well and overcoming their own preconceptions,” says Crawford, a psychiatrist in Boston. “So it’s important to first understand what your condition is and what (care) support means.”
You can start by visiting a public or medical school library. Or visit the websites of mental health and care advocacy groups. Some you might try:
- The Schizophrenia and Psychosis Action Alliance provides information about schizophrenia and psychosis in print, video and briefing formats. They even have a Schizophrenia Caregiver Kit.
- NAMI has a wealth of videos and other materials about schizophrenia, as well as an eight-session YouTube “NAMI Family-to-Family Program” to assist caregivers, a helpline and an online discussion group.
- The Family Caregiver Alliance has a page with general caregiving resources.
But don’t let your learning begin and end with what you read, Crawford urges. If your loved one agrees, go to the doctor’s appointment with them. You can learn more about their treatment plans and connect with their mental health providers.
Before making assumptions, she says, ask about the symptoms, experiences, emotions and aspirations of the person you’re helping.
“Don’t question loved ones about the authenticity of their symptoms. Ask them how they experienced schizophrenia and understand the emotional component,” says Crawford. “It’s more helpful for caregivers to learn from loved ones than from books.”
Seek help from family and friends
Many primary schizophrenia caregivers feel guilty about not being able to handle the job alone. But if you can overcome any psychological barriers to seeking help, you may find valuable allies and support systems.
Other friends and family can help in several ways:
- “Respite care” – gives you time to recharge by going to the gym or watching a movie, taking a walk in the woods, or anything else that helps
- Running errands, such as grocery shopping
- Driving your loved one to the doctor or picking up your kids from school
- Pay household bills
- Conduct online research on organizations that provide financial assistance to families with schizophrenia
“I recommend that caregivers write down a list of all the things they have a hard time doing during the week and then ask family and friends if they would be okay with those things,” says Crawford.
That said, be aware that it can sometimes be difficult for friends and family to stay on the same page during the worst stages of schizophrenia.
Deborah Fabos of Tehachapi, Calif., has been her son’s caregiver since he was diagnosed in 2000 when he was 17. But she found the support she needed to manage her son’s life and her own life elusive.
“Family and friends are priceless if they can sit with your loved one and hold their hand,” Fabers said. “But unless they’ve experienced agnosia (when someone denies they’re sick), it’s hard to have true empathy. They don’t understand the spectrum.
Caregivers should seek help from family and friends even if they are struggling with “their own negative associations with schizophrenia,” Crawford said. “A year from now, they might be able to get to where you need them to be.”
Find a caregiver support group
Over time, Fabos became a volunteer and speaker for causes related to schizophrenia. She recently helped found a chapter of the Schizophrenia and Psychosis Action Alliance (S&PAA) in her home state. She also started a caregiver support group called Families For Care, which now has more than 800 members worldwide.
“Joining a support group was the most important lesson I learned,” she said. “You can get the resources you need in the right support group. There will be people on your team who, even if they haven’t been through the exact same situation as you, are close enough.
In Fabers’ group, she said, paramedics not only have a sounding board but also often receive help from nearby members to complete daily tasks.
In addition to searching the web and social media, you can find support groups near you by:
- Register a copy through S&PAA
- Use NAMI Connection to support group search engines
- Sending a message through Mental Health America’s Inspire Schizophrenia Council
Even if you have a strong support network of family and friends, it’s a good idea to join a support group for caregivers of schizophrenia or mental illness, says Crawford.
“If you hit a bump in the road with your loved one, a support group can say, ‘I know it’s hard right now, but hang in there. It worked for me, and I have no doubt it will work for you,'” she says.
“If the support group you go to isn’t a good fit, it’s OK to find another one. It’s not a one-size-fits-all approach.
