Information for caregivers

What is a caregiver?

Caregivers are those people who act as support for someone with a disabling illness, be it a spouse, parent, sibling, friend, work colleague or relative. Being a caregiver is important because you not only provide love, care and support in the most difficult moments of a loved one's life, you also give feedback, act as a reality check, motivate and encourage and, ultimately, offer a window to a world of hope and normality.

How do I care for a person with schizophrenia?

Caregivers have a vital role to play in assisting their friend or loved one who has been diagnosed as suffering from schizophrenia. Scientific research has clearly demonstrated that the involvement of a caregiver in treatment promotes the best outcomes in schizophrenia.

The caregiver does not function alone. The active phase of schizophrenia, or the process of recovering from it, requires that the sufferer receives skilled professional supervision and management from an appropriately trained mental health specialist. The treatment of schizophrenia involves a three-way relationship, therefore, between the individual, the mental health professional and the caregiver. The individual with schizophrenia, along with you, as a caregiver, share the same goals - to reduce the pain and severity of symptoms, to reduce the risk of relapse and to promote the return of the sufferer to a normal life-pattern.

As a caregiver there are a number of things that you can do to help your loved one.

• Becoming well informed about schizophrenia and its treatment
• To help you remain supportive and to understand what the sufferer is going through, it is important that you become as informed about schizophrenia and its treatment as possible. The list below will help you learn more about schizophrenia and its treatment.
• Read the Schizophrenia and Psychosis brochures on the InfraPsych website.
• Talk to mental health professionals. Request a meeting with the key people who are assisting your friend or relative. Take a list of questions with you. Write down the information they give you, and if you don't understand what is being said, say so.
• Telephone mental health help lines listed in the telephone directory. These services can help and also direct you to organizations that can provide further information including discussion or support groups in your area.
• Learn to recognize the early warning signs of schizophrenia or schizophrenic relapse

People experiencing the active phase of schizophrenia, with symptoms at their most severe and obvious, are usually unaware that anything is wrong. In this situation, caregivers have an important role to be able to recognize the individual's early warning signs - those signs that indicate schizophrenia is relapsing and to seek appropriate assistance.

Some early warning signs that indicate the possibility of such relapse include:

• anxiety, depression or irritability;
• suspicion, hostility or fearfulness;
• difficulty sleeping or unusual waking hours;
• appetite changes;
• loss of energy, motivation and interest;
• concentration and/or memory problems;
• preoccupation with certain ideas (such as religion);
• social withdrawal - not wanting to spend time with friends and family members;
• mentioning odd or strange ideas;
• smiling for no apparent reason;
• difficulty meeting responsibilities such as work or study; and
• deteriorating self-care.

Not one of these signs by itself necessarily means that schizophrenia is developing again. Some of these changes can result from passing physical illness; fatigue; or stresses at work, study or in relationships. Several of these signs developing together, however, and persisting over a week or two, or becoming more pronounced over time, should sound the alarm and lead you to request urgent advice from an appropriate mental health professional or general practitioner. The earlier the person receives specialist assistance, the better.

Treatment will usually involve daily regular tasks such as taking medication, attending medical appointments, attending therapy sessions or attending day programs, etc. In any given week the time spent with mental health professionals will be quite small compared to the amount of time that individuals will spend with their caregivers. Because of this, caregivers are in the best position to provide the day-to-day encouragement and support needed to stick with treatment. Caregivers can help the person they are caring for in many ways including:

• Encouraging your loved one to stick with the treatment program
• Keeping track of appointments and getting the person to the appointments;
• Ensuring that medications are available and that medications are taken as instructed;
• Being actively involved in treatment by working with the individual and the mental health professional/s in making decisions about treatment and setting goals to work towards;
• Being interested and available to discuss how treatment is going; and
• Assisting with the access to resources and services such as government benefits.

Usually people are very good at seeking and sticking with treatment during crises and times of stress especially when they are receiving intensive assistance. However, as crises resolve and life returns to a more regular routine, people can sometimes lose the motivation needed to stick with treatment. Be aware of this and remember that treatment of schizophrenia is an ongoing process that doesn't usually end when the obvious symptoms have subsided. Sticking to treatment after a schizophrenic episode is the key to preventing another episode. If there are difficulties or questions about the treatment your loved one is receiving, talk to the mental health professionals who are providing care. The key to a good relationship between the individual, the caregivers and the mental health professionals is open communication.

Taking medication

Medication is fundamental to the treatment of schizophrenia. However, people with schizophrenia may stop taking the medication or not take the medication as the doctor has advised.  A person may stop or reduce drugs because of unpleasant side effects or because they believe that their illness has resolved itself. The individual and the caregiver needs to carefully note side effects and promptly report these to the doctor who prescribed the medication. Only then can these problems be dealt with.  This is vital to ensuring the long-term effectiveness of treatment programs.

As mentioned above, sometimes individuals stop or reduce medication when they cease to have troubling symptoms. Unfortunately, this is one of the main reasons why people relapse. Some may think that a brief period on antipsychotic medication has 'fixed' the schizophrenia. This is rarely true. Medications for schizophrenia work similarly to insulin for a diabetic. People with diabetes who take their insulin consistently and as prescribed, minimize potential problems. Diabetics who reduce or stop their insulin are at risk severe problems and long-term complications. The same is true of schizophrenia. If your loved one is talking about reducing or stopping medication, he/she needs to be encouraged to speak to the doctor as a matter of some urgency.

Handling symptoms

When the person you are caring for is experiencing obvious schizophrenic symptoms or is recovering from these, it can be difficult to know what to say or what to do. This can be a very stressful and confusing time and there is no 'right' thing to say and no 'right' way to behave. However, there are some things that you can do that might be helpful.

• Try to understand what the individual is experiencing. Remember that when a person experiences hallucinations or delusions they seem real to him/her.
• Your loved one is not behaving and talking as he/she normally would and may be saying very hurtful things. Try not to take these personally.
• Don't get involved in debates about trying to convince someone that his/her delusions or hallucinations are not real. This may make your loved one feel that he/she can't talk to you about what is happening. Avoid discussing psychotic beliefs and, instead, try to find topics neutral topics that are less likely to upset the person.
• It is not usually a good idea to 'buy into' or go along with a person's delusion or hallucination. Try listening and sympathizing with the person's experiences - e.g. you might say that although you find it difficult to understand what he/she is experiencing, you do realize that he/she must be very scared (or angry, etc.).
• Try to minimize stress and over-stimulation in the person's environment.
• People experiencing (or recovering from) the active phase of schizophrenia can seem child-like. They often need help with decisions that they would usually make by themselves. Show that you are concerned and that you care for the person. Try to avoid confrontations, criticisms, blaming and 'put-downs'.

How might I feel about my loved one's schizophrenia?

Everybody is different. There is no 'right' way to feel or react if your loved one is experiencing, or has experienced, schizophrenia. This is a very difficult time for everyone involved and caregivers often feel a range of emotions which include:

• grief/sadness;
• confusion;
• denial;
• anger;
• fear of stigmatization;
• failure;
• shame;
• relief (that there is an explanation for what has been happening);
• shock; and
• guilt.

All of these feelings are common and understandable responses to a very perplexing situation. Caregivers must remember that adjusting to the diagnosis and treatment of schizophrenia in someone close takes time. With appropriate treatment for your loved one and, with support for yourself, the painful feelings will ease.

Why am I feeling guilty?

It is common for caregivers to feel guilty, either when their loved one is first diagnosed with schizophrenia or when improvement isn't occurring as quickly as was hoped for. You may agonize over past mistakes and events and wonder what should or shouldn't have been done. Parents are particularly prone to these feelings. A caregiver, however, is not responsible for improvement or recovery in an illness like schizophrenia. The reality is that although environmental factors can certainly have an impact, the causes of this disorder are genetic and biological.

Guilt can be a powerful corrosive agent that can sap energy and motivation, ultimately destroying the relationship between you and the one you are supporting. If you are feeling guilty, make sure you talk it through with a trusted friend or doctor.

What are the possible warning signs of depression and suicide?

People with schizophrenia are at risk of depression and/or suicidal feelings. Any threats or gestures of self-harm must be regarded very seriously. Always seek assistance if you are concerned that your loved one might harm themselves. Don't be afraid to talk to them about how he/she is feeling. This includes asking him/her if they feel safe, or asking if your loved one has been thinking about hurting himself/herself. Talking about suicide does not make it happen. Clarifying the matter with a sufferer is the first step to taking preventive action.

Keeping secrets

Issues of confidentiality often arise when dealing with someone with a mental illness. You may be placed in an ethical dilemma when the sufferer shares 'secret' information about suicide or harming others. This process can put enormous emotional strain on you because you have to decide between maintaining confidentiality and looking after your loved one's best interests.

Any information which suggests that the person is at risk of harming himself/herself or somebody else must be passed on to a doctor, community nurse or other health professional. In this situation, it is important to get the person to see a health professional as soon as possible.

Although your friend/relative may become angry or feel betrayed, you have a clear duty of care that overrides any suicide pacts or plans. Simply be careful not to enter into any promises you cannot or should not keep. Be supportive and compassionate but firm about where 'confidentiality' starts and ends.

Important things to remember

• Mental illnesses are genuine disorders. A person with a mental illness is not 'pretending' or 'weak' or 'selfish'. It is important to realize that he/she is struggling with a condition that has a number of possible causes.
• Realize that you can only do so much. You cannot talk a person out of a mental illness and you cannot cure his/her condition by yourself. Although you have a very important role to play, the healing process will need to involve other people, including health professionals.
• Be careful of being the 'rescuer'. In the short term, this can seem like a solution, but in the long run, no single person can rescue another individual. Trying to take on that degree of responsibility can result in burnout and 'compassion fatigue'.
• Recovery is a gradual process. Even with the right medication and professional support, recovery from a mental illness can be a slow and gradual process. It takes time and patience.
• Suicidal talk is serious. If a person is suicidal, you must not be the only one to take on the burden of this knowledge. Anyone with suicidal ideas or plans must see a professional. This may be a GP, mental health professional or the emergency department at your local hospital.

You could say:

• "I would like to help you."
• "I cannot imagine what you are going through, but I am ready to listen."
• "I care about you and I would suggest you talk things over with your doctor."
• "I would like to be a caregiver for you, however, you need to tell me how I could best fulfill this role."
• "I cannot keep your suicide plan to myself. I would like to arrange for us to go and see a doctor together."

Do not say:

• "You need to pull your self together and snap out of it."
• "Let me tell you about my problems, which I am sure will make you feel better."
• "Taking medication is a sign of weakness in your personality."

These comments are unsupportive, unhelpful and may even be dangerous.

How do I look after myself?

Supporting a person with a mental illness can be tiring work. In order to provide the best support, it is essential that you look after yourself.

• Create a support team for yourself. Visit with people you can talk with and whoever can lift your mood.
• Take time for yourself, e.g. meet a friend or watch a movie.
• Exercise regularly because this will help you manage stress.
• If you are feeling stressed and low, minimize your use of alcohol or other drugs. For example, alcohol decreases people's ability to cope with stress.
• Follow through on your own activities and plans. The role of caregiver is important, however, you must look after your own life or risk burnout and ending up being unable to help either yourself or anyone else.