How to Build a Support Network for Schizophrenia Care

If you’ve become a caregiver for a family member or friend with schizophrenia, it’s tough to go it alone. The demands on your psychological and physical well-being, and on your personal life and finances, can be heavy.

“A lot of caregivers experience uncertainty about what the future will look like, not just for their loved one but for themselves,” says Christine Crawford, MD, MPH, associate medical director at the National Alliance on Mental Illness (NAMI).

“All their expectations about holding a job and relationship kind of get shifted after the schizophrenia diagnosis. It’s a period of adjustment.”

But you can tap rich resources of information and support during this period of adjustment. You just need to be willing to ask and know where to look.

Education About Schizophrenia Caregiving

“It’s often difficult for caregivers to have a good appreciation of what the schizophrenia diagnosis is all about, to get past their own preconceived notions,” says Crawford, a Boston-based psychiatrist. “So it’s important to start off by educating yourself about the condition and what (caregiving) support is all about.”

You might start with a trip to a public or medical school library. Or visit the websites of mental health and caregiving advocacy groups. Some you might try:

The Schizophrenia & Psychosis Action Alliance offers materials in print, video, and presentation formats about schizophrenia and psychosis. They even have a schizophrenia caregiver toolkit.NAMI has lots of videos and other materials on schizophrenia, an eight-session YouTube “NAMI Family-to-Family Program” that helps caregivers, a helpline, and online discussion groups. The Family Caregiver Alliance has a page with resources on caregiving in general.

But don’t let your learning begin and end with what you read, Crawford urges. If your loved one agrees, go with them on some doctor visits. You can learn more about their treatment plan and develop a bond with their mental health provider.

And before you make assumptions, ask the person you’re helping about their symptoms, experiences, emotions, and ambitions, she says.

“Don’t challenge the loved one about the realities of their symptoms. Ask how they are experiencing schizophrenia and get to the emotional component,” Crawford says. “It can be more helpful for the caregiver to learn from the loved one than from a book.”

Getting Help From Family and Friends

Many primary schizophrenia caregivers feel guilty that they can’t handle the job alone. But if you can get past any mental blocks about seeking help, you may find valuable allies and a support system.

A few of the ways other friends and family members can help:

“Respite care” — giving you time to recharge your batteries by going to the gym or a movie, a walk in the woods, or whatever helpsRunning errands like grocery shoppingDriving your loved one to doctor’s appointments or picking up your kids from schoolPaying the household billsDoing online research into organizations that offer financial help to families with schizophrenia

“I recommend that caregivers write down a list of all the things that are hard for them to get done in a week and then ask if family and friends are willing to take them on,” Crawford says.

That said, be aware that it’s sometimes hard for friends and family members to be consistent through the worst of schizophrenia.

Deborah Fabos of Tehachapi, CA, has been her son’s caregiver since his diagnosis in 2000, when he was 17. She says other relatives were helpful to a point. But she found the back-up she needed to manage both her son’s life and her own was elusive.

“Family and friends are priceless if they can sit with your loved one and hold their hand,” Fabos says. “But unless they have been there in those situations with anosognosia (when someone denies they are ill), it’s really hard to have true empathy. They don’t understand the spectrum.”

Even if family and friends struggle with “their own negative associations about schizophrenia,” caregivers should seek their help, Crawford says. “They may be able to get to where you need them to be a year from now.”

Find a Caregiver Support Group

Over time, Fabos became a volunteer and speaker for schizophrenia-related causes. She recently helped start a chapter for the Schizophrenia & Psychosis Action Alliance (S&PAA) in her home county. She also launched a caregiver support group called Families For Care that now boasts more than 800 members worldwide.

“Joining a support group is the biggest lesson I’ve learned,” she says. “You can get the resources you need in the right support group. There will be someone in the group where, if they haven’t been through the exact same situation you have, it’s close enough.”

In Fabos’s group, she says, caregivers not only get a sounding board, but often get help from nearby members with daily tasks.

Along with searching the internet and social media outlets, you can find a nearby support group by:

Registering for one through S&PAAUsing the NAMI Connection support group search engineMessaging through Mental Health America’s Inspire schizophrenia board

Crawford says it’s a good idea to join a schizophrenia or mental illness caregiver support group even if you enjoy a great support network of family and friends.

“If you encounter a bump in the road with your loved one, the support group can say, ‘I know it’s difficult now, but hang in there. It worked for me, and I strongly believe it can work for you,’” she says.

 “And if you go to a support group and it’s not a good fit, it’s OK to need to look for another. It’s not a one-size-fits-all approach.”