Helping a Family Member with Schizophrenia

Helping a person with schizophrenia

Schizophrenia can be a bewildering and destructive force, not only to those who suffer from it, but also to their friends and relatives. The families of people with schizophrenia often struggle with a wide range of difficult emotions, including fear, guilt, anger, frustration, and helplessness. Worried about the stigma of mental illness or confused and embarrassed by strange behaviors they don’t understand, family members may also try to hide their loved one’s illness from others.

Unfortunately, isolation and denial only compound the problems schizophrenia causes in the home. According to the National Alliance on Mental Illness, the families who deal most successfully with schizophrenia are those that come to accept the illness and its difficulties, are realistic in what they expect of the ill person and themselves, and maintain a sense of humor. Keeping a positive outlook is much easier when you have others you can turn to for support. Like your loved one with schizophrenia, you too need help, encouragement, and understanding.

Top Tips for Helping a Family Member with Schizophrenia
Educate yourself	Learning about schizophrenia and its treatment will allow you to make informed decisions about how best to manage the illness, work toward recovery, and handle setbacks.
Seek help right away	Early intervention makes a difference in the course of schizophrenia, so don’t wait to get professional help. You family member will need assistance finding a good doctor and other effective treatments.
Reduce stress	Stress can cause schizophrenia symptoms to flare up, so it’s important to create a structured and supportive environment for your family member. Avoid putting pressure on your loved one or criticizing perceived shortcomings.
Set realistic expectations	It’s important to be realistic about the challenges and limitations of schizophrenia. Help your loved one set and achieve manageable goals, and be patient with the pace of recovery.
Encourage independence	Rather than doing everything for your family member, encourage self-care and self-confidence. Help your loved one develop or relearn skills that will allow for greater independence of functioning.

Supporting a family member’s treatment

The best way to assist the recovery of a family member with schizophrenia is to get them into treatment and help them stick with it. Often, the first challenge of treatment is convincing the ill relative to see a doctor. To people experiencing delusions, hallucinations, and paranoia, there is no need for medical intervention because the voices and conspiracy theories are real.

If a family member with schizophrenia is reluctant to see a doctor, the following strategies might help:

• Provide options – Your loved one may be more willing to see a doctor if he or she can control the situation somewhat. If your relative appears suspicious of you, suggest another person to accompany him or her to the appointment. You can also give your family member a choice of doctors.
• Focus on a particular symptom – A person with schizophrenia may resist seeing a doctor out of fear of being judged or labeled “crazy.” You can make the doctor less threatening by suggesting a visit in order to deal with a specific symptom such as insomnia or a lack of energy.

 Medication monitoring

Once your family member is in treatment, careful monitoring can ensure that he or she is staying on track and getting the most out of medication. Medication monitoring involves:

• Dealing with side effects. Many people stop taking their schizophrenia medication because of side effects, so pay attention to your loved one’s drug complaints. Bring any distressing side effects to the attention of the doctor. The doctor may be able to reduce adverse effects by reducing the dose, switching to another antipsychotic, or adding another medication that targets the troublesome side effect.
• Encouraging your loved one to take medication regularly. Even with side effects under control, some people with schizophrenia refuse medication or take it irregularly. This may be due to a lack of insight into their illness and the importance of medication, or they may simply have trouble remembering their daily dose. Medication calendars, weekly pillboxes, and timers can help people who are forgetful. Two typical antipsychotics, Haldol and Prolixin, are also available in a long-acting injectable form. These “depot formulations” are given as shots every 2 to 4 weeks, eliminating the need for a daily pill.
• Avoiding drug interactions. Antipsychotic medications can cause unpleasant and dangerous side effects when combined with other substances, including certain prescription drugs, over-the-counter medications, vitamins, and herbs. Help your family member avoid any problems by giving the doctor a complete list of the drugs and supplements he or she is taking. Mixing alcohol or illegal drugs with schizophrenia medication is also harmful, so talk to the doctor if your relative has a substance abuse problem.
• Tracking medication response. You can help the doctor track treatment progress by documenting changes in your family member’s behavior, mood, and other symptoms in response to medication. A journal or diary is a good way to record medication history, side effects, and everyday details that might otherwise be forgotten.

Preventing schizophrenia relapse

Stopping medication is the most frequent cause of relapse in schizophrenia, so it’s extremely important that your family member continues to take all medication as directed. Many people whose schizophrenia is stabilized or in remission still require medication to maintain their treatment gains and keep symptoms at bay.

Unfortunately, even if a person is taking medication as prescribed, relapse into an acute psychotic episode of schizophrenia can occur. But if you learn to recognize the early warning signs of relapse and take immediate steps to deal with them, you may be able to prevent a full-blown crisis. The warning signs of relapse are often similar to the symptoms and behaviors that led up to the person’s first psychotic episode.

Common warning signs of schizophrenia relapse:

Insomnia Social withdrawal Deterioration of personal hygiene Increasing paranoia

Hostility Confusing or nonsensical speech Strange disappearances Hallucinations

Dealing with crisis situations

Despite your best efforts to prevent relapse, there may be times when your family member’s condition deteriorates rapidly and drastically. During a schizophrenia crisis, you must get help for your family member as soon as possible. Hospitalization may be required to keep your loved one safe.

Emergency planning

It’s important for the family members of people with schizophrenia to prepare for such crisis situations. Having an emergency plan ready for an acute psychotic episode will help you handle the crisis safely and quickly. A good emergency plan for a family member with schizophrenia includes:

• A list of emergency contact information for your loved one’s doctor, therapists, and the police.
• The address and phone number of the hospital you will go to in case of emergency for psychiatric admission.
• Friends or relatives who will take care of other children or dependents while you deal with the crisis.

It’s also wise to go over the emergency plan with your family member. The crisis situation may be less frightening and upsetting to your loved one If he or she knows what to expect during an emergency.

Obtaining medical coverage for schizophrenia

In most instances when an individual is unable to work due to mental illness, government funds are available to assist the person in receiving basic needs such as housing, food, clothing, medical expenses, etc. Most private insurance policies do not fully cover these expenses. Depending on your family member’s situation, he or she may qualify for social security assistance.

There are two types of social security assistance available:

• Social Security Disability (SSD) is granted for people who have worked and contributed to the social security system. After one year this is referred to as Medicare funding.
• Supplemental Security Income (SSI) is granted based on financial need for low-income persons. An individual is eligible for SSI if he or she does not have a work history and is therefore ineligible for SSD, or if the individual’s SSD funding isn’t sufficient for complete care. SSI is considered Medicaid funding.

Medical aid and coverage for schizophrenia is a very complex issue. Your family member’s doctor, social worker, or case manager may be able to offer advice and help you find coverage. You can also contact your local Social Security or social services office directly.

Housing options for people with schizophrenia

Treatment for schizophrenia cannot succeed if your family member doesn’t have a stable, supportive place to live. But finding the right living situation for a person with schizophrenia can be challenging. When considering housing options, think about the individual needs of the person with schizophrenia:

• Can your family member care for him or herself?
• How much support does he or she need with daily activities?
• Does your family member have a drug or alcohol problem?
• How much treatment supervision does he or she require?

Living with family

For many families, the most difficult choice involves whether or not the relative with schizophrenia should live at home. Living with family can be a good option for people with schizophrenia if their family members understand the illness well, have a strong support system of their own, and are willing and able to provide whatever assistance is needed. At-home arrangements are less likely to be successful if the person with schizophrenia uses drugs or alcohol, resists taking medication, or is aggressive or uncooperative.

Choosing the Right Housing Option for a Person with Schizophrenia
Adapted from: Schizophrenia: A Handbook For Families, Health Canada
Living with family works best if:
The person with schizophrenia functions at a fairly high level, has friendships, and is involved in activities outside the home. The interaction among family members is relaxed. The person with schizophrenia intends to take advantage of available support services. The living situation does not negatively impact the lives of any young children in the home.
Living with family is not advised if:
The main support person is single, ill, or elderly. The person with schizophrenia is so ill that there is little or no chance to lead a normal family life. The situation causes stress in the marriage or leaves children in the home feeling frightened and resentful. Most family events and concerns revolve around the person with schizophrenia. Support services are not used or are unavailable.

Try not to feel guilty if you are unequipped to house a family member with schizophrenia. If you can’t look after your own needs or those of others in the family while caring for your ill relative, he or she will be better off somewhere else.

Residential options outside the family home

If an at-home living arrangement isn’t the right fit, make contact with local mental health facilities, social service agencies, support groups, and public housing authorities. These organizations can help you explore the residential facilities in your community and put your family member’s name on the appropriate waiting lists.

Options in your area may include:

• Residential treatment facilities or 24-hour care homes – A more structured living environment for those who require greater assistance with medications and daily living tasks or for those going through an acute psychotic episode.
• Transitional group home — An intensive program that helps individuals transition back into society and avoid relapse after a crisis or hospitalization. Includes skills training and rehabilitation services.
• Foster or boarding homes – A group living situation for people with schizophrenia who are able to function relatively well on their own. Foster and boarding homes offer a certain degree of independence, while providing meals and other basic necessities.
• Supervised apartments – An option for those whose condition is less severe or well-managed with medication. Residents live alone or share an apartment, with staff members available on-site to provide assistance and support.

Taking care of yourself

In order to successfully deal with schizophrenia in a family member, you need to take care of your own needs and find healthy ways of coping with the challenges you and your loved one face.

• Join a support group. One of the best ways to cope with schizophrenia is by joining a family support group. Meeting others who know first-hand what you’re going through can help reduce feelings of isolation and fear. Support groups provide an invaluable venue for the relatives of people with schizophrenia to share experiences, advice, and information.
• Make time for yourself. Schedule time into your day for things you enjoy, whether it be spending time in nature, visiting with friends, or reading a good book. Taking breaks from caregiving will help you stay positive and avoid burnout.
• Look after your health. Neglecting your health only adds to the stress in your life. Maintain your physical well-being by getting enough sleep, exercising regularly, eating a balanced diet, and staying on top of any medical conditions.

Finally, you must learn to recognize your own limits. Be realistic about the level of support and care you can provide. You can’t do it all, and you won’t be much help to a loved one if you’re run down and emotionally exhausted. In order to cope with schizophrenia in a family member, it’s important to understand that although you can make a positive difference, you aren’t to blame for the illness or responsible for your loved one’s recovery.

Do your best to help your family member feel better and enjoy life, pay the same attention to your own needs, and remain hopeful. New research continues to enhance our understanding of schizophrenia and open new doors for treatment and recovery.

Related links for helping a person with schizophrenia

Helping a family member with schizophrenia

Schizophrenia: A Handbook For Families – Comprehensive guide to dealing with schizophrenia in a loved one. Covers issues of confidentiality, hospitalization, housing, relapse, and rehabilitation. (Health Canada)

How You Can Help: A Toolkit for Families – Learn how you can assist the recovery of a family member with schizophrenia. Includes advice on finding community support, dealing with difficult behaviors, and reducing stress. (British Columbia Schizophrenia Society)

Basic Facts about Schizophrenia (PDF) – In-depth booklet about schizophrenia and its treatment. Learn how the illness affects families and what you can do to help a friend or relative. (British Columbia Schizophrenia Society)

Coping tips for families

Schizophrenia: How Should One Behave? – Tips on how to communicate and interact with a person suffering from schizophrenia. (World Fellowship for Schizophrenia and Allied Disorders)

Dealing with Unusual Thoughts and Behaviors (PDF) – Fact sheet from the U.K.-based National Schizophrenia Fellowship on coping with the symptoms and behaviors of schizophrenia in a loved one. (Rethink)

Finding schizophrenia services and support

Find Your State and Local NAMI – Locate the nearest branch of the National Alliance on Mental Illness, an organization that offers support, education, and referrals for people coping with mental illness. You can also call the toll free HelpLine at 1-800-950-NAMI (6264).

State and Local Programs for Families, Young Families, and Providers – Directory of education, training, and support programs for the caregivers of people with mental illness. (National Alliance on Mental Illness)

Schizophrenia Support Groups and Related Resources – Provides links to patient and family support groups located in different countries around the world. (Schizophrenia.com)

Medical coverage for schizophrenia

Social Security Benefits – Describes the process of applying for social security benefits and what can be done if benefits are turned down initially. (National Alliance on Mental Illness)

Medicaid Facts: What You Need to Know (PDF) – Learn how to obtain Medicaid for someone who is mentally ill. Includes information about community-based services and prescription drug coverage. (National Alliance on Mental Illness)

Choosing the Right Plan – Worksheet helps people with mental illness find the right Medicare prescription drug plan. (Bazelon Center for Mental Health Law)

Mental Health Part D: Consumers and their Families – Covers eligibility, enrollment, and the costs of Medicare Part D, a prescription drug benefit that helps people get and pay for their medications. (Mental Health Part D)

Mental Health Insurance Parity – Describes mental health insurance parity and how to find out if your state or employer offers it. (MentalHealthWellness.com)

Housing options for people with schizophrenia

Housing Options for People with Mental Illness – Question and answer series on housing options for people with mental illness and who to contact for more information. (SAMHSA’s National Mental Health Information Center)

Finding a Good Residential Option for Someone with Severe Mental Illness – Provides suggestions for choosing the right living arrangement for a family member with schizophrenia. (Schizophrenia.com)

Federal Programs to Assist Transition-Age Youth with Serious Mental Health Conditions (PDF) – A collection of fact sheets on U.S. government programs available to help young people with mental illness. (Bazelon Center for Mental Health Law)

Melinda Smith, M.A. contributed to this article. Last modified on 1/03/08.