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
Caregiving can be isolating for many reasons. In some families and cultures, the dynamics of caregiving — or the mental illness itself — can be wrapped in shame and stigma. The people you once turned to for help in challenging times might not understand your challenges anymore. They might not be willing to help. Not to mention, as a caregiver, you simply might not have the time to nurture outside relationships.
“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.
Finding a community of people who depend on each other for caregiving support can help you safeguard your mental and physical health. It can help you be a more effective caregiver by easing your stress and sustaining your energy to provide care. Other benefits of social connection include reduced risk of caregiver burnout and lower risk of long-term conditions like high blood pressure and heart disease, to name some.
You can find other caregivers through:
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?”
To see a person you care for suffering is difficult enough. To carry uncertainty about your own actions — or to even question if you’ve harmed or failed them in some way — can be devastating. This feeling is common, and even the most experienced caregivers go through it.
Why? Communication is a key element of schizophrenia care, which means even small, everyday interactions can become a source of stress if you’re unsure of how to act or what to say. Feelings of guilt can be especially profound if the person you care for is in crisis and you don’t know how to be there for them when they need you most.
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.
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
“One of the biggest hurdles for caregivers of people living with schizophrenia is that it isn’t easy to find respite care,” says Dr. Schimmels. Respite care refers to opportunities for caregivers to take a break from their responsibilities. It can be for a few hours while they run errands, a long weekend, or a stretch of time when they need to be away. Respite care can take place in the person’s home or a facility.
“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
Caregivers under pressure often hear the advice to set boundaries with their time and to speak up for their needs. While this advice comes from a kind place, it isn’t always actionable when someone you care about depends on you and their needs are serious, pressing, or urgent. Sometimes you don’t want someone to state oh-so-obvious solutions or give unsolicited advice. Sometimes you just want someone to listen.
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.
That’s why it’s so important — not only for people with schizophrenia, but also their caregivers — to have a trusted therapist if they want one.
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.
Worried about cost? There are a growing number of virtual therapy platforms that can be more affordable than traditional counseling and may fit more easily into your schedule. Some therapists may be willing to work with you on a sliding scale, meaning you pay what you’re able to afford. They don’t always advertise this, so it’s helpful to ask.
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.
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