“Caring for someone with a mental illness”
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For the person experiencing it, being diagnosed with a mental illness is a frightening and confusing period.
It can also be a difficult period for that person’s family, relatives and friends.
A Carer is someone who helps his/her relative/friend with a mental illness on their journey to recovery.
This information sheet aims to outline some of the issues affecting a carer, and discusses how they can better help their loved one.
It also gives suggestions on where to go for further help and assistance.
HOW DOES MENTAL ILLNESS AFFECT A PERSON?
Learning how mental illness is affecting their relative, and understanding what they are going through, is perhaps one of the most important aspects of a carer’s role.
Very often, the behaviour of someone with a mental illness is misunderstood. One such misconception is that ‘people with a mental illness are lazy and weak, and if they tried hard enough they could ‘snap’ out of it’.
Fear about the onset of the next episode, confusion about the illogical, at times irrational nature of their inner world may be some of the feelings experienced by someone with a mental illness.
They may also experience anger and bitterness due to the manner in which the mental illness is affecting every aspect of their life. They may be hypersensitive to criticism and feel as if others, including their carer and mental health professional, do not understand them or what they are going through.
They may feel rejection from friends and relatives and consequently isolate themselves. They may experience an overwhelming sense of despair, loss of interest, lack of energy or motivation.
Angry outbursts may be demonstrated by somebody with a mental illness. This can be due to delusions or hallucinations, inner frustration and conflict, or an inability to manage anger.
It is important for the carer to understand that they can seek assistance in terms of respite or other residential care.You may also like to advise your relative’s case manager or doctor of the difficulties you are experiencing.
HOW TO HELP YOUR RELATIVE
Realistic expectations – It is normal to feel the loss of what your loved one was able to do before the onset of mental illness. He or she may also be experiencing similar feelings of loss and sadness. Many carers envisage that ‘recovery’ for their relative is being able to function as they were before the onset of the illness.
This can be true for some, however, for others having this attitude or expectation may mean that they fail to see the small signs of progress that their relative is making. Such an expectation may carry over to the person with the mental illness who may also feel that they are not progressing.
Expectations of employment, or schooling may simply be inappropriate at certain periods, while a possibility at other times. Some realistic signs of progress could simply be when your relative starts eating with the family, or having daily showers.
Positive outlook – One of the most important ways a carer can help is by instilling hope of a more positive future for their loved one. Often the person experiencing the mental illness may not be able to foresee ‘better days’.
Helping them have a more positive outlook in life can also show him/her your support and may further assist those who feel that they are ‘burdening’ the family as a result of mental illness.
Communication – Conversation and communication can at times become challenging when carers feel that their relative is not ‘hearing’ what they have said.
At times this could be because s/he is preoccupied with other thoughts or because the relationship between the carer and relative has deteriorated to the extent where communication has become difficult. Some hints for improved communication are:
• Face the other person and maintain eye contact
• Present one thought at a time.
• Don’t rush. Speak in a calm manner.
• Listen to the other person’s thoughts and feelings
• Acknowledge the other person’s feelings
• Repeat in different words to convey your meaning
• Time out – if you are not able to get your message across to your care recipient at one time, come back to the issue when both you and him/her are more receptive and patient. Don’t go on arguing, no matter how logical you feel your argument is.
Problem solving – it is often tempting to make decisions for your care recipient rather than to encourage them to come to a decision for themselves.
Encouraging them to use problem-solving techniques will help empower them and give them some sense of control over their life. Eg Relative: “I am not sure whether to attend the support group today”. Instead of saying, “Its good for you, you should go”, you could say “What did you think of the session last time? ... and / or “ How did you feel after the last meeting”.
In this example, helping your loved one see the benefit of attending a support group is better achieved by them thinking through it themselves rather than you ‘telling’ them.
Learn to reduce stress – Encourage your relative to practice stress reduction strategies. Excessive stress may make someone with a mental illness more vulnerable to relapse.
Good stress reduction strategies may even help reduce some symptoms of mental illness eg. anxiety, depression, lack of motivation etc. Some simple ways to reduce stress are:
Walking
Relaxation, meditation
Adequate rest, sleep
Talking with a friend
Listening to music
Be empathic and sensitive - A person who is experiencing an acute episode of a mental illness may feel very unwell, just as we do when we are experiencing an episode of physical illness.
Avoid making comparisons to friends, colleagues’ and relatives’ success at work, school or relationships. Such comparisons may belittle your care recipient, where s/he may feel far behind others in terms of success, achievements etc.
Also remember that those who haven’t experienced a mental illness cannot fully understand what it is like for those that have.
Encourage compliance in taking medication – There could be times when your care relative refuses to take medication.
This may be due to the side effects they are experiencing or because they feel that the medication is not positively benefiting them. Simply saying to them to take their medication because “its good for you”, often will not convince him/her.
In fact they may feel that you do not understand their feelings. Keep in mind that he or she has reasons they believe why they should stop taking their medication. Some things you can do to encourage compliance with medication are:
• When your relative is looking and feeling better, suggest that the medication may have played a role in them feeling better.
• If he/she is refusing to take their medication because of side effects, ask them to write down all the things they are experiencing and encourage them to make an appointment with their doctor to discuss the side effects. Also encourage them to ask the doctor what sort of things will help alleviate the side effects.
• If your relative feels that the medication is not helping him/her, then encourage them to ask their doctor how long it takes before the medication takes effect. Also bring up the issue of regular intake of medication. Help him/her understand that regular intake of medication is important, as it is for any other medical condition eg. Uncle Fred taking daily medication for diabetes.
• Bring up the topic of medication when your relative is more receptive, and more open to discussion – even the time of the day may make a difference eg. Some people with a mental illness may be more anxious or experience more symptoms at night, so daytime may be a better option for discussing medication.
(If your relative suggests that they do not need to take medication because there is ‘nothing wrong with them’, discuss this with his/her doctor, and options such as community treatment orders and community counselling orders).
Learn: A more informed carer is better resourced to help their loved one.
• Find out information about the particular mental illness your relative is experiencing; about treatment options and the types of services available in your area.
• Carer workshops may be offered in your area health service. Such workshops may assist you understand the issues involved in caring for someone with a mental illness.
• Attend support groups and meet other people in similar circumstances to you, find out what helps them cope and care better
NEEDS OF OTHER FAMILY MEMBERS
Caring for someone with a mental illness can affect the dynamics of a family. Often, the caring role drains the majority of the caregiver’s time, energy and patience.
Grief may be involved, as in the loss of the loved one’s former personality, achievements and contributions; as well as the loss in family lifestyle. This grief can lead to unconscious hostility and anger.
Other family members may also start contributing towards caring, and neglect their own needs:
Children – Children often do not fully comprehend what their relative is undergoing. They can often gauge the stress that the family is experiencing, but not actually ask what the matter is. They may withdraw, or pretend that the change in family dynamics does not exist.
Alternatively, they may start contributing greatly towards the household. They may show signs of ‘growing up too quickly’. Other children may demonstrate anger and irritability, and choose to spend more time away from the home and the family.
Relationships – Personal relationships of wife/husband/partner are also greatly affected by mental illness. This is especially true if the carer’s partner is the person with the mental illness. The needs of the relationship change.
The carer may also experience loneliness in terms of the lack of attention from his/her spouse and the dramatic increase in responsibilities.
Caring for a child with mental health problems can also create friction in the carer’s relationship with his/her partner. There are issues of lack of attention to the needs of the partner. At times there can be issues of blame between partners in terms of responsibility for their child’s mental illness.
Attending to the needs of other family members:
• Allocate time that you will spend with another family member and seek assistance or respite, if needed, to attend to your relative with mental illness.
• Organise family outings where everyone can participate eg picnics, bushwalking, family cricket matches.
• Encourage family members to see other positive qualities in your relative, not just his/her mental illness.
• If children are involved, pay attention to whether they are keeping in touch with their friends and continue to do things that other kids their age are doing eg. Bike riding, going to movies etc.
• In your personal relationship as a wife/husband/partner, try to do some of the enjoyable things that you had done before your caring role began e.g. going out to dinner, going for walks with your partner.
LOOKING AFTER YOU
Most carers, once they adopt their caring role, fail to address their own needs.
This may be by giving up paid work, stopping socialising with friends, neglecting their own health, and even simple things like not allowing themselves time to read a book or go for a walk.
Carers sometimes persist with their caring role to the point of exhaustion, frustration and breakdown. Sometimes, they unconsciously start doing too much for their relative, to the point where he/she fails to take on board their own responsibilities.
Along with the caring role, often there are issues of guilt and blame.
Sometimes carers feel directly responsible for their loved one’s mental illness and ill health, or they feel that their relative is suffering because of shortcomings in their caring.
They may think that taking ‘more’ or ‘better’ care of their loved one will help them recover from their mental illness.
As can be imagined, some carers take on a huge responsibility. This often leads to their own mental and physical ill health. Neglecting one’s own needs and health can lead to a tired, exhausted, frustrated and emotionally drained carer.
Being in such a position can adversely affect the decision making process of a carer and, in turn, their caring capacity. It may even adversely affect the relationship between the carer and their relative.
A carer who cares for him/herself is able to better care for their loved one.
How to care for you
• Devote at least 15 minutes a day to yourself, and do what you enjoy doing eg. going for walks, talking to friend, reading a book, sitting down with a cup of tea, watching your favourite TV show etc.
• Plan for longer breaks. Use respite services if available
• Attend support groups for carers/relatives
• Avoid extra pressures or unnecessary tasks – some tasks can be done at another time
• Try to get out of the house at least once a day.
• Eat regular healthy meals.
• Exercise regularly.
WHAT SORT OF QUESTIONS SHOULD I BE ASKING?
Caring for someone with a mental illness is a new experience for most people. Often it is a role they never expected or imagined they would need to take.
It is often an area that is new to them, and they are unsure of the types of things they need to know and the types of questions they need to be asking.
Mental Health Professional/ Team – The Psychiatrist, Psychologist, Case-manager or GP can provide information to you in terms of what your relative is experiencing. Sometimes because of confidentiality, mental health professionals will not be able to discuss some of the issues affecting your relative. However, you can still let him/her know of your concerns.
In your capacity as a carer, you may have information and insight that could assist the health professional better care for your relative.
Some useful questions to ask mental health professionals:
• What are the side effects of the medication?
• What other treatment options are available?
• How do I find out more about my care recipients mental illness?
• What do I do if there is a crisis?
• Are there support groups that will help my relative, or help me?
• What can I do if my relative refuses to take medication?
• Is there any place that can help my relative with accommodation?
• Is there anything or any place that can assist with the social needs of my relative?
• Is my relative able to work at the moment? If so, who can help him/her look for a job?
• What are the rights of my relative when s/he is in hospital?
• What are my rights as a carer?
Relative – In your role as a carer, it is often easy to forget to simply ask the person you are caring for if they are happy with the assistance you and others are providing. It is easy to start ‘telling’ the person what they ‘should’ be doing.
This approach or attitude may negatively affect your relationship. To prevent this just ask for their opinion.
It is often a good idea to bring up some of the following issues when the person is well and willing to talk.
• Are you happy with the mental health worker? Would you like a second opinion?
• Would you like to speak with someone else, if it is difficult for you to discuss things with me?
• When you are experiencing psychosis (or going through a difficult time), what can I do to help? .... or what do I say that will help?.....what are the things that I should not say?
• How else can I help you?
HOW TO HELP SOMEONE EXPERIENCING A PSYCHOTIC EPISODE
• Remove any immediate danger eg. sharp objects and ensure that your relative is in a safe environment.
• If the person is a danger to him/herself or to someone else, contact the nearest Mental Health Crisis Team.
• If there is no immediate danger, but you are concerned for the person, speak to their case manager. The case manager can assist you if you feel your relative is in need of more specialised hospital care, a second opinion, or a change in medication or doctor.
• If your relative is expressing to you ideas of paranoia, hallucinations or hearing voices, it is better not to flatly deny it, or enter into arguments about it. Such ideas or feelings are very real to the person experiencing them. You can communicate to them that you understand their viewpoint but that it differs from yours. eg “ You may believe that Fred next door is spying on you, but I believe that he is an avid gardener who enjoys spending time in the garden.”
• A delusion is not amenable to reason, so it needs no discussion.
WHAT TO DO IF YOUR RELATIVE IS SUICIDAL
People with a mental illness sometimes think and talk about suicide. Such thoughts are not uncommon for someone experiencing an acute episode of a mental illness. It does not necessarily mean that they will harm themselves.
However it is important that your relative discusses his/her thoughts with their doctor as soon as possible.
Suicide threats, especially when someone has a plan of how they will carry it out, require urgent attention. Your relative may experience hallucinatory voices that suggest suicide. Take ALL suicide threats seriously.
You may also like to attend suicide prevention workshops and suicide awareness presentations to learn how to identify risk factors associated with suicide and learn the necessary actions that need to be taken.
If there is a crisis:
* Call your local mental health crisis team (always keep the phone number at a convenient
location and find out if it is a 24 - hour service).
*If your relative is willing, you can take him/her to the Emergency Department at the nearest
hospital.
*You can also call ‘000’ and request help from the emergency services.
You may also like to inform the health professional treating your relative or friend. They have a duty of care to provide advice and support.
WHERE TO GO FOR HELP
Mental Health Information Service 02 9816 5688 or toll free 1800 674 200 (Outside Sydney metro) - Telephone information and referral service.
Association for Relatives and Friends of the Mentally Ill (ARAFMI): 24hr phone service and support groups for families and relatives of the mentally ill.
(02) 9805 1883/ 1800 655 198- 24 hours
Schizophrenia Fellowship of NSW: (02) 9879 2600 - for information/support/referral
Sane Australia: 1800 688 382 - for information/referral
Carers NSW: 1800 242 636 - Respite, support.
LifeForce – Suicide Prevention Program 02 9874 2111 - Workshops on suicide risk assessment.
Reference:
• A Caregivers Guide to Living with Mental Illness - www.mentalwellness.com/helphope/hopeq1.htm
• ‘Help? It’s out There! Fact sheet from the Mental Health Information Service, 02 9816 5688
• A SANE Guide for Carers: A guide for family and friends of people with a mental illness. From Sane Australia, www.sane.org, 03 9682 5933
• Carer support: Looking after Yourself. From Carer Resource Centre, 1800 242 636
• NAMI- National Alliance for the mentally ill – Coping Tips for Siblings and Adult Children of Persons with a mental illness, http//www.nami.org/helpline/siblings.htm
• Woolis, R (1992). When Someone You Love Has a Mental Illness: A Handbook for Family, Friends and Caregivers.
Disclaimer The information provided is to be used for educational purposes only. It should not be used as a substitute for seeking professional care in the diagnosis and treatment of mental health disorders. Information may be reproduced with an acknowledgement to the Mental Health Association NSW. This, and other fact sheets are available for download from www.mentalhealth.asn.au. This fact sheet was last updated in Spring, 2002.
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