What is a caregiver?

Caregivers are those people who act as support for someone with a mental 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 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 a psychotic disorder?

Caregivers have an important, if not vital, role to play in assisting their loved one who is experiencing, or has experienced, a psychosis. However, caregivers need to recognize that they cannot do this alone. When a person is experiencing a psychosis, or is recovering from a psychotic episode, they require supervision and regular monitoring by a person experienced in treating the condition (e.g. a psychiatrist, or skilled general practitioner), as well as additional treatment from other mental health professionals, such as psychologists. This means that the treatment of psychosis involves a three-way relationship between the caregiver, the individual and mental health professionals, and each has their part to play in the recovery process. Remember that caregivers, the individual and mental health professionals all have the same goal: to reduce the person's symptoms, reduce the chance of relapse, and promote the return to a regular routine. As a caregiver, there are a number of things that you can do to help your loved one..

Being informed about a psychotic disorder and its treatment.

One of the best ways that you can help your loved one is to become informed about psychotic disorder and its treatment. It is very difficult to be supportive and understand what your loved one is going through if you don't have sufficient information about the disorder. The following information will help you learn more about psychotic disorders and their treatment.

Reading the Psychotic Disorder brochures on the InfraPsych website. The brochures entitled 'Psychotic disorders', 'Treatment of psychotic disorders' and 'Information for caregivers - psychotic disorders (this brochure)' will be particularly helpful.

Talking to mental health professionals. Request a meeting with the key people who are assisting your loved one, and take a list of questions with you. Feel free to write down the information that they give you, and if don't understand what is being said, say so. You may want to ask the mental health professionals to explain certain terms, or you might ask them to rephrase information so it's easier to understand.

Telephoning mental health help lines (see the front of the telephone directory). These services can direct you to organizations that can provide you with information. They can also give you the details of any discussion or support groups in your area that might be helpful for you to attend.

What are the early warning signs of a psychosis?

Often when people are experiencing a psychosis, they are unaware that anything is wrong. Caregivers, especially in this situation, have an important role in recognizing the individual's personal 'early warning signs' that indicate that a psychosis is developing, and seeking assistance on their loved one's behalf. Some of the early warning signs that could indicate that a psychosis is developing include:

• anxiety, depression or irritability;
• suspicion, hostility or fearfulness;
• difficulty sleeping, or unusual waking hours;
• appetite changes;
• lack of energy, motivation and interest, or hyperactivity, or alternating between the two;
• concentration or memory problems;
• preoccupation with certain ideas (such as religion);
• social withdrawal - not wanting to spend time with friends and family members;
• thinking problems such as racing thoughts or slowed down thoughts;
• difficulty meeting responsibilities such as work or study;
• deterioration in self-care;
• appearing perplexed; and
• personality becomes different in some way.

None of these signs by themselves mean than a psychotic episode is developing. Some of these signs may be related to: a physical illness; to stresses and strains at work; to study; or to problems in important relationships. However, if a loved one shows several of these signs that don't go away fairly quickly, or that become more pronounced over time, then it would be wise to encourage him/her to seek specialist assistance, or for you to seek specialist assistance on his/her behalf. If changes in the person's behaviour are signs of a developing psychosis, then the earlier the person receives specialist assistance, the better.

Encourage your loved one to stick with
his/her treatment program

Treatment will involve daily, or at least regular, tasks such as taking medications, attending medical appointments, attending therapy or attending day programs. In any given week, the time spent with mental health professionals will be quite small compared to the amount of time that individuals spend with their caregivers. Because of this, caregivers are usually 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:

• helping the person to keep track of appointments;
• helping the person to get to appointments;
• helping to ensure that the person doesn't run out of medication;
• helping to ensure that the person is taking the medication as the doctor has indicated;
• being actively involved in treatment by working with the individual and mental health professionals to make decisions about treatment and setting goals to work towards;
• letting the person know that you are interested, and available to discuss how treatment is going; and
• helping the person to access 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 the treatment of a psychosis is an ongoing process that doesn't usually end when a psychotic episode has subsided. Sticking to treatment after a psychotic episode is the key to helping to prevent another episode. If there are any 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.

Encourage your loved one to take the medication

Medication is one of the fundamental treatments for a psychosis. However, it is common for people who have experienced a psychosis to stop taking their medication, or not to take the medication as the doctor has indicated. Sometimes people stop or reduce their medication because they experience unpleasant side effects. The individual and their caregivers need to carefully monitor side effects, and if any arise, these need to be promptly reported to the doctor who prescribed the medication. Once the doctor is aware of any side effects, he or she may change the type or amount of medication.

Sometimes individuals stop or reduce their medication because they are no longer experiencing troubling symptoms. Unfortunately, this is one of the main reasons why people start to re-experience psychotic symptoms. Sometimes people might believe that a brief period of taking antipsychotic medication has 'fixed' the psychosis. Occasionally this is true, but most often, the medications for psychosis work like insulin does for a diabetic. If people with diabetes take their insulin consistently, and as prescribed, then they minimize potential problems, however, if people with diabetes reduce or stop their insulin, they risk problems and complications. It is the same with psychosis. If your loved one is talking about reducing or stopping their medication, then encourage them to speak to their doctor. The doctor will assess the individual's need for medication and discuss this with him/her.

Handling symptoms of a psychosis

When a loved one is experiencing a psychosis, or has experienced a psychosis, it can be difficult to know what to say. This is often 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.

• Be yourself.
• Try to understand what the individual is experiencing. When a person experiences hallucinations or delusions they will seem very real to him/her.
• Your loved one is not behaving and talking as he/she normally would, and he/she might say hurtful things. Try not to take these personally.
• Don't get involved in a long debate to try to convince the person that their delusions or hallucinations aren't real. This won't help the person, and may just make them feel like they can't talk to you about what they are going through. For example, avoid discussing psychotic beliefs and instead try to find topics that are neutral and unlikely to upset the person.
• It is not usually a good idea to 'buy into' or go along with a person's delusion or hallucination. You might just listen and sympathize with what the person is experiencing. For example, you might say that although you find it difficult to understand what they are experiencing, you realize that they must be very scared (or angry, etc.).
• Try to minimize stress and stimulation in the person's environment.
• Sometimes a person experiencing or recovering from a psychosis can seem child-like. He/she may need your help with decisions.
• Show your concern and care for the person. Try to avoid confrontations, criticism, blaming and 'put-downs'.

How should I feel about my loved one's psychotic disorder?

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

• 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 understandable responses to a difficult situation. Caregivers need to remember that adjusting to the diagnosis and treatment of a psychotic disorder 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 especially common for caregivers to feel guilty, either when their loved one is diagnosed with psychosis, or when the person they are supporting is not improving, or isn't improving as quickly as the caregivers might have hoped. Often, the caregiver agonizes over past mistakes and events, wondering what should, or shouldn't, have been done. Parents are particularly prone to these feelings and might think that "if only we had been better parents" their son or daughter would not have developed this mental illness. A caregiver, however, is not responsible for improvement or recovery. The reality is that although environmental factors can certainly have an impact, there are significant genetic and biological factors that make people prone to developing particular mental illnesses. Just as Type 2 diabetes can run in families, so can mental illnesses.

Guilt can be a powerful corrosive agent that can sap your energy and motivation, ultimately destroying the relationship between you and the one you are supporting. It is important to be honest with yourself regarding the issue of guilt. If you are feeling guilty, make sure you talk it through with a trusted friend or doctor. There is little to feel guilty about, because most of the causes of psychotic illness are outside a caregiver's control. You can, however, offer important and much-needed support to the person, and help them on the road to recovery.

What are the warning signs of depression and suicide?

People who are experiencing, or have experienced, a psychotic episode are at risk of feeling depressed or even suicidal. Take any threats or gestures of self-harm very seriously, and always seek assistance if you are concerned that your loved one might harm themselves. Don't be afraid to talk to your loved one about how he/she is feeling. This might include asking them if they feel safe, or asking if they have been thinking about hurting themselves. Talking about suicide does not make it happen. In fact, asking people if they have been having thoughts about hurting themselves often makes it possible to take action to prevent this happening.

Do I keep secrets?

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

Though each case is different, as a rule of thumb, any information which suggests that the person is at risk of harming themselves or somebody else must be passed on to a doctor, community nurse or other health professional. In this situation, it is best to get the person to see a health professional as soon as possible.

Although he or she may be angry or feel betrayed, there is 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' ends.

Important things to remember

1. Mental illnesses are genuine disorders.

A person with a mental illness is not 'pretending' or 'weak' or 'selfish'. It is important to realize that they are struggling with a condition that has a number of possible causes.

2. Realize that you can only do so much.

You cannot talk a person out of a mental illness and you cannot cure their condition by yourself. Although you have a very important role to play, the healing process will need to involve other people, including health professionals.

3. 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 this responsibility can result in burnout and 'compassion fatigue'.

4. Remember, 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.

5. Suicidal talk is serious.

If a person is suicidal, you must not be the only one to carry the burden of this knowledge. Anyone with suicidal ideas or plans must see a professional. This may be a family doctor, 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 think it might be a good idea to talk things over with your local 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 extremely unsupportive and unhelpful, and may be dangerous.

How can I help the children if their parent has psychotic disorder?

If you are caring for someone who is a parent, it is important to consider how the children may be affected. Try and minimize disruption to the children's daily routine. This may mean planning meals they are used to, making sure they have their shower or bath every day, and encouraging them to go to bed at the regular time each night. You may also need to arrange other practical issues such as childcare and transport to and from school.

It is natural for children to feel confused and anxious when their parent is ill and someone else is caring for them. It helps to respond to any distressed behavior in a calm and understanding manner. You may need to explain to them why their parent's behavior has changed and why they seem sick, answering any questions factually and appropriate to their level of understanding.

If the child is older, they may need to be reassured that they are not to blame for their parent's illness. It may also help to encourage them to take part in the care of the parent, showing them what to do to assist.

How can 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 to, debrief with, and who can help to lift your mood.
• Take time for yourself, e.g. meet a friend or watch a movie.
• Exercise regularly because this is 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 you will risk burnout and may end up being unable to help yourself or others.