Schizophrenia Caregiver Guide: Knowing When It’s Time to Stop

If you’re a caregiver for someone who has schizophrenia , you’re probably shouldering a heavy burden. You may feel as though the disease has taken a toll on your emotional health, personal life, and family life. Plus, you may think you’re unequipped for the role. One survey found that caregivers to people with schizophrenia tend to lack education about the disease, and they report needing help managing their loved one’s symptoms — particularly, delusions and aggression.e60dc2a1-f33c-4a05-9b50-8e3e8e597629f4bbb0be-304b-4a19-b091-ee1ef5107f31 But your role as a caregiver is crucial . It’s nearly impossible for people with schizophrenia to manage the condition alone, even if they’re taking their medications and symptoms are under control. “In an ideal world, there would be social workers who would [work alongside] the doctors ,” says Consuelo Walss-Bass, PhD , a psychiatrist at the University of Texas Health Science Center in Houston and a schizophrenia caregiver herself. A social worker can provide you with resources about assistance and housing options. Unfortunately, you’re usually left to go it alone. The burden tends to fall on one person, such as a parent, spouse, or sibling. This can be exhausting. You may even question your ability to keep caring for your loved one over time. Keep reading to learn how to deal with caregiver burnout , plus how to know if it’s time to end your role as a caregiver.
The Initial Challenges of Being a Schizophrenia Caregiver Initial Challenges The most difficult time in your caregiving journey may be the earliest days — soon after a diagnosis, for example — when your loved one isn’t being treated yet. “Going through this process can be very hard,” says Dr. Walss-Bass, “but you need to get a patient stable — where they take their initial medications and the hospitals monitor them for a few weeks — and then they’re okay.” During this time, being a caregiver may feel impossible, but it should get easier. Once your loved one begins taking medication, they should see a big improvement in symptoms, says Walss-Bass. “You just need to find the right combination of which one works and what the dose is,” she says. If your loved one isn’t improving and becomes a danger to themselves or someone else, call or text the Suicide & Crisis Lifeline at 988 or call the police, who may be able to convince them to go to a hospital voluntarily or transport them to the hospital for an involuntary evaluation.e60dc2a1-f33c-4a05-9b50-8e3e8e597629ef345b77-9d23-4411-91d7-81e09503eef2
When Schizophrenia Caregiving Becomes Too Much When Caregiving Becomes Too Much Caring for a loved one with schizophrenia can be as time consuming as a second job. On average, schizophrenia caregivers spend 31 hours per week taking care of their loved one. This includes taking them to medical appointments, coordinating their care, doing household chores, managing their finances, supervising their medication , running errands, and shopping.e60dc2a1-f33c-4a05-9b50-8e3e8e5976297e29b62c-bcd5-40fc-871c-15db222f9d38 Given all these additional demands, it’s possible to experience caregiver burnout — a state of physical, emotional, and mental exhaustion from managing the health of another person . The symptoms of caregiver burnout can mimic those of depression and include:e60dc2a1-f33c-4a05-9b50-8e3e8e597629a4e3a625-117c-47c1-a2d3-7f84b114fcec Emotional and physical exhaustion Feeling helpless or hopeless Loss of appetite or changes in weight Loss of interest in activities Inability to concentrate If you’re struggling to care for your loved one who has schizophrenia , here are a few strategies that may help: Talk to your loved one about switching to a long-acting injectable medication. If your loved one doesn’t take their medication regularly, they may benefit from an injectable medication, which stays in the system for weeks or months. In fact, research shows that caregivers of people who take long-acting injectable medications experience less emotional stress than caregivers of people on other treatments.e60dc2a1-f33c-4a05-9b50-8e3e8e5976297e29b62c-bcd5-40fc-871c-15db222f9d38 Recruit an assistant or two. If possible, delegate a few responsibilities to a spouse, relative, or friend, such as taking your loved one to a doctor’s appointment or shopping for groceries. Remember that you don’t have to do everything on your own. Reach out to a social worker. Social workers are trained professionals who can encourage people with schizophrenia to stick to their treatment plan , socialize with others in their community, and participate in therapy sessions.e60dc2a1-f33c-4a05-9b50-8e3e8e597629332915c7-2e4d-4253-90f3-0f0c5ed79337 Join a support group. Talking to other caregivers can help you feel understood and supported. The National Alliance on Mental Illness (NAMI) offers both local and virtual Family Support Group programs for adults who have a loved one with a mental health condition. Find a group near you . Take care of yourself. No one can pour from an empty cup, so be sure to prioritize your own well-being by eating a healthy diet, exercising regularly, getting seven to nine hours of sleep each night, and practicing relaxation techniques, such as deep breathing.e60dc2a1-f33c-4a05-9b50-8e3e8e597629237759cd-f5a3-4c9d-8087-e522a5c81959
Accepting That You Can No Longer Care for a Loved One With Schizophrenia Accepting That You Can No Longer Care for a Loved One e60dc2a1-f33c-4a05-9b50-8e3e8e597629e7f5164a-8138-4ba0-bcf5-16b12c01cee6 Sometimes, the burden of being a caregiver becomes too much, even after you try making adjustments. If you think you’re no longer able to take care of both yourself and your loved one, you may need to stop being a caregiver, says Max Schiff, MD, PhD , a psychiatrist at Duke Health in Durham, North Carolina. Maybe you feel that you can’t physically, emotionally, or financially take care of your loved one any longer. Or maybe symptoms have become severe enough that your loved one needs another type of care, such as an assisted living facility. “Safety is a big concern,” says Dr. Schiff. “The decision is a hard one for every family.” Here’s what you can do if you decide to end your role as a caregiver. Let go of the guilt. You may feel guilty about your decision, but know that you did the best you could. Ideally, “There will be other family members that can take over for a little while , while you take a breather,” says Walss-Bass. “And that’s perfectly fine, because [caregiving] is very hard, and it can cause depression and anxiety.” The next caregiving situation your loved one enters may be even better for them and allow them to thrive in a way they aren’t currently, she adds. Seek alternative solutions. You may need to research alternative caregiving strategies, whether that’s asking another family member to take over or considering an adult living facility. If you’re not sure where to start, Walss-Bass recommends reaching out to a NAMI representative, who can provide you with more resources. Communicate the plan with your loved one. This may be difficult, but it will benefit everyone if you have a transition plan in place, so your loved one knows what they can expect next. “It’s important to communicate to them that this isn’t the family abandoning them or not loving them,” says Schiff. “It’s just that [the family] can’t provide the necessary support to make sure that person succeeds.” Sort out your feelings. When caregiving ends, you may feel a wide range of emotions — everything from grief to guilt or even relief. All of this can be very confusing, so take the time you need to process your feelings. It may help to seek guidance from a trained counselor . In the end, the decision to end your caregiving role may be best for everyone. “It can be a very fraught decision, but I’ve seen families and patients who say, ‘This was actually a good decision,’” says Schiff. “It allowed the family to be more of a family.”
The Takeaway Most people with schizophrenia need a caregiver, which can be a demanding and stressful role to fill. You don’t have to go it alone: Recruit some help for your caregiving team, including other relatives or social workers. If you can no longer care for a loved one — emotionally, physically, or financially — create a transition plan for the next form of care they’ll receive.



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