Serious mental illness places enormous pressure on families, and nearly two thirds of caregivers report moderate to high emotional stress according to a joint report from the National Alliance on Mental Illness and the National Alliance for Caregiving. These conditions, including serious illnesses like schizophrenia, bipolar disorder, and severe major depression, can significantly affect daily functioning and intensify the demands on families.
Dr. Tracy Hicks, a caregiver and clinician with a doctoral nursing background, says families need clearer guidance on how to navigate boundaries and burnout.
Inside the Care Partner Role
Care partners supporting someone with a serious mental health condition often carry responsibilities that extend beyond daily tasks. Dr. Hicks uses the term “care partner” because she believes the word “partner” is empowering and reflects the reciprocal, person-centered relationship at the heart of caregiving.
She says one of the biggest hidden burdens is the constant vigilance required to keep a loved one safe and supported. A recent Caregiver Action Network survey of care partners of people living with schizophrenia found that most are involved in nearly every part of treatment. Their role often includes:
- Keeping medication on track, with 92 percent providing reminders
- Managing medical care, with 90 percent attending appointments
- Providing emotional stability, with 89 percent offering day-to-day support
- Helping guide treatment decisions, with 88 percent discussing options with providers
Many are also monitoring shifts in mood or behavior, anticipating a possible crisis, and trying to maintain their own relationships, responsibilities, and health.
Navigating Resentment and Guilt
Care partners often feel resentment toward the situation and guilt for having those feelings, especially when symptoms are long-term or unpredictable. Dr. Hicks says the first step is giving yourself grace.
“Care partners should give themselves grace; supporting a loved one with a serious, chronic illness is challenging. Part of giving yourself grace is practicing the self-awareness that is central to emotional intelligence. I have three A s. First, acknowledge what you’re feeling. Then analyze it to see where those feelings are coming from. And then determine the action plan that will help propel you forward.”
She also reminds care partners that boundaries are allowed. “Keep hope alive but understand what is in their control and what is not. Supporting someone doesn’t mean carrying everything alone.” Exhaustion is common, which is why she says caring for yourself “should not be thought of as selfish, but instead as a central part of caring for the entire family unit.”
Early Signs of Burnout
Caregiving can be relentless, and burnout often appears before caregivers recognize it. Dr. Hicks says one of the earliest indicators is when everything becomes reactive.
“I think one of the first signs that a care partner might be approaching burnout is that everything starts to become a reaction. Care partners may stop proactively asking, ‘What do you need from me?’ or ‘Tell me more about that?’ and instead respond immediately to the behavior or focus only on getting through the next task or issue.”
Another sign is neglecting their own needs. “If care partners are no longer checking in with themselves, asking for support or recognizing their own needs, that’s an early indicator they may be getting weary in their role.”
Boundaries Are Necessary
Symptoms can change quickly and setting boundaries can feel impossible. Dr. Hicks says they are still necessary.
“I remind care partners that it is okay to have boundaries, even if the symptoms their loved one might be experiencing are changing from day to day. As a care partner myself, there have been times when I’ve needed to set a boundary for myself.”
She keeps boundary setting focused on her own needs. “Instead of saying ‘You did this and this and this,’ I instead say, ‘I love you. I’m here for you; however, I have a boundary. I can help you with this, but I can’t do that.'”
Before assuming what a loved one needs, she asks directly. “What do you need from me?” Sometimes the answer is simply, “I need you to listen right now.” Clear communication keeps boundaries from becoming blame, and she says the way a care partner communicates a boundary can make a meaningful difference.
When a Loved One Resists Care
People living with serious mental illness may struggle with medication adherence and recognizing when they need help. Dr. Hicks encourages care partners to approach resistance with curiosity.
“There are many reasons why someone living with a serious mental illness may resist care, have trouble taking their medication as prescribed, or following through on their treatment plan. Instead of assuming why they might be struggling, try to create a safe space for an honest conversation. Try asking questions such as, ‘Can you tell me more about that?’ or ‘What are your thoughts on that?’ And then really listen to their answers.”
When people feel included in decisions about their care, they’re more likely to follow their treatment plan.
She also encourages families to explore all treatment options, including long-acting injectables (LAIs), which can reduce the daily burden of remembering medication. In the same CAN survey, fifty-four percent of care partners whose loved ones had taken a long-acting injectable said the greatest benefit was only having to think about medication every few weeks or months. Thirty-nine percent said it gave them confidence that their loved one had taken their medication. Thirty percent said they no longer worried each day about whether their loved one took their medication.
“What’s important when talking with people about an LAI is that it’s not presented as a consequence or punishment for having trouble taking medication as prescribed. Instead, it should be presented as an opportunity because LAIs are an option that can help reduce the burden of taking a pill every day or having to worry about missing a dose. When people are included in the decision and understand why an LAI may be a good fit for them, they’re much more receptive to considering it as an option.”
Sustaining Caregivers Well-Being
For care partners who have been supporting someone with serious mental illness for years, maintaining identity and mental health requires connection and support.
“I encourage care partners to stay connected to their purpose and to always ask for support when needed. That may mean reaching out to organizations like National Alliance on Mental Illness or Substance Abuse and Mental Health Services Administration, finding peer support or connecting with local mental health resources.”
Caregiving can feel isolating, but she says it rarely works alone. “For care partners, it can often feel like they are on their own, but what I’ve found with my loved ones who live with schizophrenia is that it takes a team. And all of us, care partners and loved ones, are part of that team.”
She believes hope is a powerful intervention. “When families celebrate milestones, encourage independence and remember that serious mental illnesses are something their loved one is living with, not who they are, it helps both the individual and the family continue moving forward.”
Resources:
Caring for the Caregiver: What the Data Tells Us About Mental Health and Family Caregiving | NAMI
Caregivers’ Perspectives on Schizophrenia Treatment
National Alliance on Mental Illness (NAMI)
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