Education about schizophrenia caregiving
“It’s often difficult for caregivers to understand what a schizophrenia diagnosis is and overcome their own preconceptions,” says Crawford, a Boston-based psychiatrist. “So it’s important to start by educating yourself about the condition and what (care) support is.”
You might start by visiting your public or medical school library. Or visit the websites of mental health and caregiving advocacy organizations. Here’s what you can try:
- The Schizophrenia & Psychosis Action Alliance provides resources about schizophrenia and psychosis in printed, video, and presentation formats. There is also a Schizophrenia Caregiver Toolkit.
- NAMI has many videos and other resources about schizophrenia, a YouTube ‘NAMI Family-to-Family Program’ to help caregivers, a helpline and online discussion groups.
- The Family Caregiver Alliance has a page with resources about general caregiving.
But don’t let learning begin and end with what you read, Crawford urges. If your loved one agrees, go with them to their doctor’s visit. You can learn more about their treatment plans and build a connection with your mental health provider.
And before making assumptions, ask the person you are helping about their symptoms, experiences, feelings and ambitions.
“Don’t challenge your loved one about the reality of their symptoms. Ask them how they are experiencing schizophrenia and get to the emotional component,” says Crawford. “For caregivers, learning from loved ones can be more helpful than from books.”
Get help from family and friends
Many primary schizophrenia caregivers feel guilty that they cannot handle the task alone. But if you can overcome the mental obstacles to seeking help, you may find a valuable ally and support system.
Here are some ways other friends and family can help:
- “Respite care” – Gives you time to recharge your batteries through any activity that helps, such as going to the gym, going to the movies, or taking a walk in the woods.
- Errands such as grocery shopping
- When taking a loved one to the hospital or picking up a child from school
- pay household expenses
- Conduct online research about organizations that provide financial help to families of people with schizophrenia.
“I recommend that caregivers make a list of all the tasks they find difficult to complete in a week and then ask family and friends if they would be willing to take on those tasks,” says Crawford.
That said, remember that it is sometimes difficult for friends and family to remain consistent during the worst of schizophrenia.
Deborah Fabos of Tehachapi, California, has been caring for her son since his diagnosis in 2000, when he was 17 years old. She says her other relatives have been of some help. But she found the backup she needed to manage both her son’s life and her own life difficult.
“It’s invaluable for family and friends to be able to sit with their loved ones and hold their hands,” says Fabos. “But unless they’re in a situation where there’s anonymity (where someone denies they’re sick), it’s really hard to have real empathy. They don’t understand the spectrum.”
Even if family and friends struggle with “negative thoughts about schizophrenia,” caregivers should seek their support, Crawford says. “They will be able to get to where they need 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 of the Schizophrenia and Psychopathy Action Alliance (S&PAA) in her home county. She also started a caregiver support group called Families For Care, which 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 from the right support group. There will be people in the group who are close enough to you if they haven’t been through the same situation as you.”
In Fabos’ groups, caregivers not only get a sounding board, but they often get help from nearby members with everyday tasks, she says.
In addition to searching the internet and social media, you can find support groups near you in the following ways:
- Registered through S&PAA
- Use the NAMI Connection Support Group Search Engine
- A message from Mental Health America’s Inspire Schizophrenia Council.
Crawford says that even if you enjoy a great support network of family and friends, it’s a good idea to join a schizophrenia or mental illness caregiver support group.
“When you hit a bump in the road with a loved one, a support group can say, ‘I know it’s hard right now, but just hang in there.’ It worked for me, and I firmly believe it will work for you, too,” she says.
“And if you go to a support group and it’s not right for you, it’s okay to find another group. “It’s not a one-size-fits-all approach.”
