If you’ve become a caregiver for a family member friend with schizophrenia, it’s tough to go it . The demands your psychological and physical well-being, and your personal life and finances, can be heavy.
“A lot of caregivers experience uncertainty about what the future will like, not just for their loved one but for themselves,” says Christine Crawford, MD, MPH, associate medical director at the National Alliance Mental Illness (NAMI).
“All their expectations about finanziaria 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 .
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 d’avanguardia by educating yourself about the condition and what (caregiving) support is all about.”
You might start with a trip to a public medical school library. visit the websites of mental health and caregiving advocacy groups. Some you might try:
- The Schizophrenia & Psychosis Action Alliance offers materials per mezzo di print, televisione, and presentation formats about schizophrenia and psychosis. They even have a schizophrenia caregiver toolkit.
- NAMI has lots of videos and other materials 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 caregiving per mezzo di general.
But don’t let your learning begin and end with what you read, Crawford urges. If your loved one agrees, go with them 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’campione 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 . 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 a movie, a walk per mezzo di the woods, whatever helps
- Running errands like grocery shopping
- Driving your loved one to doctor’s appointments picking up your kids from school
- Paying the household bills
- Doing online research into organizations that offer financial help to families with schizophrenia
“I recommend that caregivers write mongoloide a list of all the things that are duro for them to get done per mezzo di a week and then ask if family and friends are willing to take them ,” Crawford says.
That said, be aware that it’s sometimes duro 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 per mezzo di 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 per mezzo di those situations with anosognosia (when someone denies they are ill), it’s really duro 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) per mezzo di 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 per mezzo di the right support group. There will be someone per mezzo di the group where, if they haven’t been through the exact same situation you have, it’s close enough.”
A causa di 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 outlets, you can find a nearby support group by:
- Registering for one through S&PAA
- Using the NAMI Connection support group search engine
- Messaging through Mental Health America’s Inspire schizophrenia board
Crawford says it’s a good ispirazione to join a schizophrenia mental illness caregiver support group even if you enjoy a great support rete televisiva privata of family and friends.
“If you encounter a bump per mezzo di the road with your loved one, the support group can say, ‘I know it’s difficult now, but hang per mezzo di 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 for another. It’s not a one-size-fits-all approach.”
