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A caregiver often become the nucleus for support for a person living with schizophrenia. You not only give your loved one vital feedback, but you encourage, motivate, and act as the touchstone to reality, offering them a glimpse of a calmer, more stable world. However, one of the most important things a caregiver must recognize about their role is that they can’t do it alone.
When a person is undergoing a psychotic episode or is in the midst of recovering from one, they will need regular supervision and monitoring by the appropriate healthcare professionals who are experienced in treating the disease. Schizophrenia should be treated as a three-way relationship between the one living with the condition, the caregiver, and the medical professionals, all of whom have the same goal, and that is to reduce the symptoms, lessen their chances for a relapse, and to help them get back into a regular routine.
Some of the specific ways in which a caregiver can help with the management of the illness is by being and remaining informed about the disease and its treatment. It can be very difficult to be supportive and understanding when you don't have enough information about the disorder. You can start by requesting to meet with the key people who are assisting your loved one along with your list of questions. You will have to secure your loved one's permission unless you have guardianship or healthcare proxy. Write down any information that they give you, and if you don't understand what is being said, ask for it to be explained. It may be a good idea to record the conversation to help you remember everything being said, but be sure to ask if this would be appropriate.
Become actively involved in the treatment of your loved one by working with his or her mental health professionals in making decisions about treatment and goals to work towards; let your loved one know that you’re interested and available to discuss how treatment is going; and help your loved one to access resources and services like government benefits, which will help them maintain some sense of independence.
Another good resource to turn to is the mental health help lines. They can direct you to organizations or support groups in your area that may provide you with essential information. Once you’ve learned as much as you can about the disease, you can begin to help your loved one in many ways, including: helping them to keep track of appointments; helping to get to and from appointments; helping to keep track of medication and making sure your loved one is taking the medication as directed by the doctor.
One of the most difficult tasks you will have is making sure that the recommended medication regimen is being followed. It’s easy to stick to treatment when someone is experiencing times of crisis or stress, especially when he or she is receiving a lot of professional oversight. Yet when the crisis is over and life returns to a regular routine, your loved one may sometimes lose the motivation that’s needed to stick to their treatment.
Sometimes they may believe that taking an antipsychotic medication for a short period of time has “fixed” the problem, and, on very rare occasions this is may be true, but this is usually not the case. If your loved one is talking about possibly reducing or stopping their medication, encourage them to speak to their doctor who will then assess their need for continued medication. Remember that the treatment of schizophrenia is an ongoing process that doesn't just end once a psychotic episode has abated. Staying on medications even after a psychotic episode will actually help to prevent another episode. Carefully monitor your loved one for any possible side effects to the medication, and promptly report them to their doctor. You are a part of the healthcare team and should always contact the mental health professionals if you have any questions regarding the treatment, or are experiencing any difficulties while giving care.
It is extremely important that you, the caregiver, take care of yourself since caring for a loved one with schizophrenia can be very exhausting. You can begin by creating a support team for yourself. Be sure to visit with people who you can really open up to, and who can help lift your mood in return.
Be sure to plan for respite time. Go to the movies with friends, or have a certain night when you meet friends at a restaurant and enjoy a good, relaxing meal. You can also help manage your stress level with regular exercise, as well as making sure to minimize your intake of alcohol or other drugs since they tend to decrease the ability to deal with the stress. You’ll run the risk of burnout if you don’t continue to live your own life, so you need to make an effort to follow through with your own activities and hobbies.
Most of all, realize that there is only so much that you can do. You can’t talk someone out of mental illness, nor can you cure the condition by yourself, so try hard to not becoming the “rescuer.” Lastly, just be yourself, and do not take anything personally, especially during a loved one’s episodes. Remember that you are not alone as a caregiver, and that you do have different ways in which to reach out and receive the support and guidance that will help you through even the most stressful of situations.
Information, support, and advocacy organizations:
National Alliance for the Mentally Ill (NAMI)
HelpLine 800-950-6264
National Mental Health Consumers' Self-Help Clearinghouse
800-553-4539 or 267-507-3810
1-800-273-TALK (8255) 24-hour crisis center
text MHA to 741741 Crisis Text Line.