Getting Prepared as a New Caregiver

Schizophrenia is a complex mental health condition that often requires a team of supporters. Learning that a loved one has schizophrenia can be overwhelming. If you find yourself in the role of a caregiver, it can be life-changing.

What is a caregiver?

A caregiver is different from a healthcare provider. A healthcare provider is responsible for treatment planning and has extensive training in medicine. On the other hand, a caregiver is someone who is usually not trained in healthcare or mental health. They are often a close family member or friend of someone navigating a serious health issue. You may also hear the term natural support; this term is interchangeable.^1,2

What kinds of things do caregivers help with?

The kind of support a caregiver provides depends on the person they are caring for. For example, if you are the caregiver for someone with diabetes, you might go grocery shopping for fresh foods and coordinate healthy meals. A caregiver for someone else with diabetes might pick up their prescriptions or organize their medical bills. Even for the same condition, types of caregiver support can vary.¹

Tasks that caregivers for people with schizophrenia might perform include:^1-3

• Attend doctor’s appointments and other specialist visits
• Participate in family therapy
• Organize and monitor prescription drugs to ensure they are taken as prescribed
• Help with transportation
• Communicate with members of the healthcare team between appointments or when new needs arise
• Give financial support or reach out to other financial resources
• Encourage healthy lifestyle choices like eating well or exercising
• Track symptom changes and seek professional help when needed
• Help with everyday tasks like cooking, doing laundry, or getting dressed
• Assist with health insurance or the disability benefits claims processes

Enlisting support

It is important to remember that all of these tasks do not have to fall to the same person. In some cases, your loved one may be able to function well on their own and only need you for certain things. In other cases, you may need to take on more responsibilities and find other people to help, too. If you are unable to provide everything your loved one needs, you may need a co-caregiver.^4-6

If no other loved ones are available, members of the healthcare team can help. For example, a case manager can connect you with financial resources to help pay medical bills. Occupational therapists can help re-teach your loved one how to do daily activities like getting dressed or cleaning.^3-6

In some cases, the needs of your loved one may be too great to manage at home. Ask their doctor whether it is safe for them to live on their own. If it is not, you may need to seek a higher level of care.^3-6

Gaining knowledge

One of the best first steps when becoming a caregiver for someone with schizophrenia is to learn more about the condition. Understanding their treatments and how they are taken is key. You can ask your loved one’s doctor for a list of all the drugs they take and when.⁴

It also can be helpful to research the symptoms you should expect and how to address them at home. You may want to understand how schizophrenia progresses over time. Then, you can bring the information you collect to your loved one’s doctor to discuss it together.^3,4

You do not have to be an expert in schizophrenia or mental health to care for a loved one. But having a basic understanding of the condition can make talking to members of their healthcare team easier.

Assembling a healthcare team

Communicating with a loved one’s healthcare team is a common responsibility of caregivers. But it can be hard to know who should be on the team. If your loved one was recently diagnosed with schizophrenia, they probably have a psychiatrist. This is a doctor that specializes in mental health conditions. The psychiatrist is the one who will prescribe drugs and monitor response over time.^3,7

Psychiatrists are often the leaders of a healthcare team that includes several experts. These other experts may include:^3-5,7

• Psychologists, therapists, or other trained mental health counselors
• Case managers
• Social workers
• Occupational therapists (OTs) or physical therapists (PTs)
• Pharmacists
• Dietitians or nutritionists

The exact members of your loved one’s team depends on their needs. For example, they may not need an OT when they are first diagnosed. But if their schizophrenia gets worse over time and they begin to have trouble performing certain tasks, an OT may be helpful.

Your loved one’s psychiatrist will make recommendations for who should be on your team. Many psychiatry clinics have these experts on staff.

Preparing for crisis

Planning ahead can be hard when you are a caregiver for someone with schizophrenia. Their symptoms may be mild and well controlled. In this case, your loved one may function on their own with minimal support from you. But symptoms can come up suddenly or become hard to manage. Creating plans and routines for each day is great, but these plans need to be flexible.⁸

One type of necessary plan is a crisis plan. A crisis for someone with schizophrenia can take many forms. It may be a severe and sudden episode of psychosis. Psychosis involves hallucinations, delusions, or other signs of losing touch with reality. Or it may be an episode in which your loved one wants to hurt themselves or others.⁹

If it is unsafe for your loved one to stay at home or for you to care for them, they may be in crisis. A crisis episode may require hospitalization.⁹

You, your loved one, and your loved one’s healthcare team can create a plan together for what to do in a crisis situation. This will be a road map for how you will seek help immediately.

Taking care of yourself

When caring for someone else, it is possible to burn yourself out. Putting someone else’s needs above your own, especially when those needs are complex or unpredictable, can take a toll. Caregiving can affect your social, mental, emotional, and physical well-being.^4-6,8

Setting goals for self-care is important for caregivers. Make a plan for how you will keep yourself healthy and supported. Set aside time for social events, hobbies, or down time. Seek other resources, like counseling or caregiver support groups, if you need to.^4-6,8