Caregiving for Schizophrenia

Caregiver with person with schizophrenia

 Getty / kate_sept2004

Caregiving for schizophrenia is often provided by family members or other close persons and plays an important role in ensuring that people with this mental illness are able to live life to the fullest.

However, it's natural for caregivers of persons with schizophrenia to experience feelings of frustration, stress, and helplessness when placed in this role.

As a caregiver, you have to serve as both a support system for your family member and a liaison for their medical care. In other words, you are juggling many different responsibilities with a steep learning curve and it's simply not easy.

Not only do you need to quickly learn about and understand the illness and the broad range of behaviors that it can involve, but you also need to determine how best to provide care without overstepping or creating undue stress.

It's a delicate balancing act that is not easy, to say the least. However, when done right it provides the best chance for the person with schizophrenia to thrive.

What Is Schizophrenia?

If you are a caregiver for someone with schizophrenia, you likely are already familiar with the signs and symptoms of this mental illness as shown below.

A diagnosis of schizophrenia requires that two or more of the following criteria be met for at least a one-month period, of which at least one of them must be the first three symptoms on the list:

In addition, there must be impairment in work, interpersonal relations, or self-care for a significant period of time.

As well, signs of the illness must have lasted for at least six months and include at least one month of symptoms that match the ones listed above.

In order to be diagnosed with schizophrenia, it is also necessary to rule out other illnesses as the cause of symptoms such as schizoaffective disorder, bipolar disorder, depressive disorder with psychotic features, use of substances, another medical condition, or autism spectrum or communication disorder.

Effects of Schizophrenia

Beyond the diagnostic criteria, a person with schizophrenia will show a number of signs of the illness that affect their daily life. These include the following:

  • reacting inappropriately to situations (e.g., laughing at sad news)
  • sleep patterns that are disturbed
  • anger, anxiety, depression, or phobias
  • feeling disconnected from oneself
  • feeling like things around them aren't real
  • problems with language, memory, and executive function
  • an inability to see that one's symptoms are caused by illness
  • failure to properly interpret social situations
  • becoming hostile or aggressive toward others

Need for Knowledge

As a caregiver, the more you know about schizophrenia, the better equipped you will be to help your family member. Do your part by learning about the symptoms, treatments, prognosis, and other details so that you are better prepared to be effective in this role.

Basic Daily Needs

A person with schizophrenia needs help with basic daily life tasks, and as the caregiver, it is part of your role to help with the organization of these tasks. If you are not naturally an organized person or are already struggling with your own daily life, you may want to consider whether the caregiver role is right for you.

You may need to help with things such as scheduling appointments, transportation to appointments, creating routines and a predictable environment, and setting realistic goals.

Treatment

A person with schizophrenia will likely be taking a prescription medication and perhaps receiving therapy. As a caregiver, you also have tasks related to these areas.

Medication

Some of the tasks you might find yourself involved with include:

  • picking up medication
  • monitoring use of medication
  • watching for side effects and bringing these to the attention of the doctor or psychiatrist so that medications can be switched or other medications added to counter the side effects
  • encouraging the person with schizophrenia to take their medication regularly
  • using a medication calendar to keep track of use
  • encouraging use of a pillbox or timer
  • inquiring about long-lasting monthly or weekly doses from the doctor
  • staying on top of potential drug interactions
  • keeping a list of medications and supplements that are being taken
  • ensuring that alcohol and drugs are not mixed with medication
  • keeping a medication log so you can see what is working

Therapy

A person with schizophrenia may also attend therapy to manage symptoms. Examples might include cognitive-behavioral therapy, group therapy, life skills training, or social skills training. Your role as the caregiver could be to assist in getting the person to therapy, ensure that therapy is continued, or help with homework assignments.

Social Support

One of the critical pieces of the puzzle when caregiving for a person with schizophrenia is to ensure that both you and the other person have adequate social support.

Social Support for the Person with Schizophrenia

Below are some of the social supports that you as the caregiver may want to ensure are in place for the person with schizophrenia. It's important to realize that you can't do this all by yourself and that you will need to have backup help to do things like driving the person to appointments, taking them to the movies or visiting, or bringing dinner once a month.

  • respite care (ask the doctor or caseworker for referrals)
  • friends/family who have offered to help
  • hire a coordinator (e.g., pay someone $100 a month to spend 5 hours building a support system for your loved one)
  • other sources of support (e.g., shelter workers, roommates, case managers, clergy)

Social Support for the Caregiver

Don't forget about supporting yourself! It can be physically and emotionally exhausting looking after a person with schizophrenia. The more support that you have for yourself, the better you will be able to provide excellent care. Below are some ideas:

  • join a support group with other people who are also caregivers
  • contact the National Alliance on Mental Illness for ongoing programs to support caregivers of those with mental illness
  • contact Schizophrenics anonymous for resources for friends/family
  • talk to friends, family, clergy, or a therapist if you are feeling burnt out

Self-Care

Practicing good self-care is important both for the person with schizophrenia and the caregiver. This doesn't mean just taking bubble baths; it means doing basic things to ensure that your well-being is a priority. Below are some examples:

  • getting at least 30 minutes of exercise each day
  • eating a healthy, balanced diet
  • not abusing alcohol or drugs
  • using relaxation techniques
  • spending time with friends
  • getting enough sleep
  • engaging in enjoyable activities
  • using mindfulness or breathing techniques
  • maintain a sense of humor

Remember that the illness will take an emotional toll on both of you in terms of feeling frustrated, angry, fearful, guilty, or helpless.

Always be sure to meet your own needs first and be accepting of the negative feelings that you have so that you find ways to cope instead of ignoring the problem.

Crisis Plan

Do you have a plan of what you will do in a crisis situation? The first thing to know is the signs of relapse, such as trouble sleeping, social withdrawal, lack of personal hygiene, paranoia, hostility, hallucinations, etc.

As a caregiver for a person with schizophrenia, it's important to know what to do in a crisis. Below are some key things you should have in place:

  • all contact information (doctor, therapist, hospital, family and friends to provide childcare if needed)
  • a plan on how to deal with acute psychosis (remain calm, avoid eye contact, minimize distractions, ask visitors to leave, express disagreement with delusions and gently redirect conversations to safe topics)
  • a convincing plan to get them help (suggest seeing the doctor for a specific symptom such as insomnia if they are resistant, let them choose which professional to see so that they feel more in control)

Remember that as a caregiver, your job is to advocate for your family member even when they might be turning against you. You need to help the doctor understand the situation and stay connected to the treatment plan. Without your help, your loved one may not be able to manage basic tasks like eating, dressing, and finding shelter in a crisis. Remember that the sooner you can get them help, the better off they will be.

Above all else, be sure to discuss the emergency care plan with the person when they are not in crisis. This will help reduce the feeling of being threatened when you actually find yourself in the situation.

Finally, keep a diary of symptoms so that you can quickly tell when things have changed and relapse may have begun.

Coping Skills/Self Help

The more that a person with schizophrenia can do for themselves, the better off they will be in terms of their own self-esteem and having hope for the future.

For this reason, as a caregiver, you should be encouraging the use of coping skills and self-help strategies for areas of life that are affected by the illness. For example, you could help your family member to set realistic goals that encourage taking action and striving for success in life, while at the same time alleviating some stress for this individual.

In this way, you are helping to empower the person with schizophrenia by helping them to do all that they are capable of doing.

Dealing with Stigma

As a family caregiver, you might also worry about stigma that you may face due to the behavior of the person with schizophrenia. You might even feel tempted to hide their illness; however, this will only reinforce the stigma. Instead, try to be accepting of their illness while also working toward them living the best life possible.

Living Arrangements

A person with schizophrenia needs a stable place to live. Deciding where that will be depends on how well they can care for themselves and how much supervision they need.

Living with the caregiver is often the best option unless the person has serious issues that require a stricter environment, such as substance abuse, medication refusal, or failure to cooperate. If there are other people in your home, it's also important to consider the impact on them, particularly young children.

Other options include a residential treatment facility or 24-hour care facility, a group home, a foster/boarding home, or a supervised apartment.

A Word From Verywell

If you are a caregiver for a person with schizophrenia, it is important to strike a balance between providing the best care that you can and not burning yourself out. If you find that you are struggling to provide help, reach out to the care team and ask for referrals for support.

While it may be tempting to try and do it all yourself, the role you have taken on involves a great deal of strain, and you will eventually need support. At the very least, try to join a group that can offer you support and with whom you can discuss problems and find solutions.

Finally, be aware that your role as caregiver is crucially important for the person with schizophrenia. In a very literal sense, you may be the only one keeping that person from unemployment, homelessness, and other negative consequences of the illness.

You should be proud of the work you are doing and recognize how critically important it is. Never underestimate the difference you are making for that person and how much their life has been impacted through your help.

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