The beyondblue guide for carers

Supporting and caring for a person with anxiety and depression

www.beyondblue.org.au 1300 22 4636

This booklet has been developed by carers for carers.

Many people have shared their experiences of supporting and caring for a person
with anxiety and/or depression.
Based on the personal stories of carers, this guide offers helpful advice and tips
about caring for others and caring for yourself:
• how to get through the tough times
• what worked (and what didn’t)
• how to overcome a range of difficulties
• how to support a person with a mental health condition
• how to access support available to carers.
Although every personal experience is unique, there are aspects of the role that are
common to many people in a supporting or caring role.

Thank you

beyondblue would like to thank all the people in a supporting or caring role who
have contributed to the compilation of this guide by participating in focus groups,
providing insight into their experiences and sharing their personal stories.
The development of this guide included a consultation with blueVoices, beyondblue’s
national reference group for people who have personal experience of anxiety and
depression, or support someone who does. Their contributions have been invaluable.
For more information on blueVoices, visit www.beyondblue.org.au/bluevoices
beyondblue also acknowledges the valuable contribution made to the development of
this guide by Carers Australia.
Contents

Foreword 2
Introduction 3
Section 1 – Caring for others 5
Recognising something is not right 5
Taking the first step 8
Getting to the first appointment 10
How can a carer access information? 14
Keeping up the momentum 16
Working towards recovery 19
Overcoming setbacks 20
Emergency and crisis situations 22
Section 2 – Caring for yourself 25
Accepting how you feel 25
Supporting or caring for someone
else may affect relationships 27
Looking after yourself 34
The right support for you 37
More information and support 40
National help lines and websites 40
Support for carers 41

1
Foreword

We were left floundering, confused and

bewildered. Now, 25 years later, it’s
great to see that supports of this kind
are available.
I would like to express my appreciation
to all of those involved in contributing to
this important work. I wish to recognise
the contribution of all those carers
whose experiences and anecdotes have
enhanced the relevance of this book.
The use of real-life anecdotes will give
our carers and families around Australia
a real connection as they identify with
the thoughts and feelings of people who
have experienced the same issues.
Isolation is one of the most significant
disempowering facts of life, and
I am delighted to see the development these stories will demonstrate that
of this important publication which will ‘you are not alone’ in grappling with
assist the carers and families of loved the challenges.
ones with mental health conditions.
Well done to everyone involved and
I have great confidence that this book commend this important publication for
will be extremely valuable, not only for your reading.
the families of newly-diagnosed people,
but also for those who have been around
the mental health system for varying
lengths of time.
It’s more than 25 years since our family John McGrath AM
was first impacted by the challenges
of mental illness. One of the glaring Former Deputy Chair, beyondblue
deficiencies in the system at that time
was a lack of basic information to help
educate and increase understanding of
strategies to assist in daily living.

2
Introduction

No matter how long you’ve The guide is divided into two sections:
been supporting a person who’s 1. Caring for others – is about caring
experiencing a mental health for and helping the person you’re
condition, this guide includes helpful supporting. It covers various
information for all carers and family stages and draws on other carers’
members – regardless of whether experiences including recognising
that something is not right, accessing
the person they’re supporting has
treatment, working towards recovery
just been diagnosed, is recovering, and managing emergency and
or is in the early stages of anxiety crisis situations.
and/or depression.
2. Caring for yourself – looks at
Some people will be reading this understanding your feelings and the
guide although they are not yet certain impact a mental health condition can
whether the person they’re supporting have on you, your family and friends.
definitely has a mental health condition. It’s equally important to ensure that
you look after yourself physically
Others will have recognised that and emotionally, and draw support,
something isn’t right and will be taking knowledge and wisdom from others,
the first steps to get a medical opinion. which you will find in this section.
Many carers reading the guide will
have been supporting a friend or loved Research shows that more than
one for some time and will be working one-third of carers experience severe
towards recovery. depression and that being a carer
Some carers will be looking after for someone else could be one of the
someone who has a mental health leading causes of their depression.1
condition and co-existing physical health
problem, disability or chronic illness
(e.g. a heart condition, Parkinson’s
disease or a cancer diagnosis).
More information about depression,
anxiety and different chronic illnesses
is available to download free from
www.beyondblue.org.au/resources

3
Who does the term ‘carer’ describe? • Carers provide ongoing support
which may be in a social, emotional,
For the purpose of this guide, the term physical and/or financial capacity.
‘carer’ is used to refer to the primary Sometimes, this may be to the
support person for someone with detriment of their own employment,
depression and/or anxiety. relationships, social life, physical
• Carers may be husbands, wives, and/or mental health.
children, siblings, partners, It is also recognised that other family
flatmates, parents or close members may play a major caring
friends. While many people refer to role. This guide will be equally helpful
themselves using these terms, the for them.
word ‘carer’ is used in this booklet for
ease of reference.

4
Section 1 – Caring for others

Recognising something is “I just thought it was stress from work.

not right I never considered it to be anything
For many years, mental health more than that.”
conditions, such as anxiety and
depression, were not discussed openly It’s common for people not to discuss
in the community because of fear, mental health conditions with family
ignorance and stigma. members or friends. There is even more
stigma around mental health in cultures
Unlike physical illnesses or conditions where health issues of any type are not
that have obvious symptoms that can be discussed with members of the
observed easily and, as a result, talked immediate or extended family and
about frankly, symptoms of mental certainly not with friends.
health conditions may be deliberately
hidden or unintentionally obscured. Negative views or stigma about
Signs and symptoms of a mental mental health are often due to
health condition like depression may misunderstandings, cultural beliefs,
remain unrecognised or attributed misconceptions and/or lack of
to being associated with certain life knowledge about mental health
stages, stressful events, hormones or conditions and the associated signs
personality traits. and symptoms.

“I put it down to just going through a

life phase – I thought it would pass.”

“She was moody and irritable, but we

just thought it was being a teenager.”

“My grandmother had depression for

many years, but we never recognised
it. We just thought she was a
negative person.”

5
Confirming there is a problem Furthermore, symptoms may remain
undetected for some time because the
“I felt pretty terrible because I onset of the condition may be gradual.
hadn’t recognised it.” For these reasons, detection can be
difficult and confirming whether there
is a mental health condition is often
“She was very teary and just not right.” complicated. The best advice is to
persevere and trust your instincts if
things are not quite right.
“With our son, he just had no energy…
he was very tired and wasn’t “We both knew something was wrong…
interested in doing things.” he didn’t feel right, he didn’t feel safe,
but we couldn’t put our finger on what
it was.”
“I attributed it all to the alcohol. It
was easier for me to say, ‘He’s just
an alcoholic’.” “The key to this is that it is incremental.
Every day just gets a little bit worse and
that’s the key. It’s not a trauma injury
“He became non-communicative, like when you have a car accident.”
withdrawn and dropped all
his friends.”
“With my husband it was probably
Initially, it may be difficult to confirm that a gradual thing. It’s very hard to
someone has a mental health problem. pinpoint it, he just didn’t fit in.”
While you may sense changes in a
person’s behaviour, it’s understandable,
“It actually crept up on both of us…
when you don’t have much knowledge
when you’re actually there, you don’t
about mental health conditions,
necessarily see the emergence.”
that you may attribute symptoms to
other causes.
Alternatively, you may not want to “It wasn’t until last year that she finally
consider the possibility of there being a broke down and told me her fears and
mental health condition because you’re things she’s been feeling. And quite
concerned or frightened about what this frankly, I didn’t even detect them.”
could mean for the person and those
close to him or her.
What is the problem?
It may also be the case that the person
After confirming that there is a problem,
hides, controls or disguises many
you need to establish what that problem
symptoms. You may no longer notice
could be. Unlike many physical illnesses,
the symptoms because the associated
there is not necessarily a one-off test
behaviour has been going on for so long
that can result in a diagnosis for a
that it now seems normal.
mental health condition. For example,

6
it can be difficult to know whether lack with anxiety or depression – and will
of sleep and weight loss are the result of indicate if the person should see a
work-related stress or whether they may health professional. This checklist is
be symptoms of anxiety, depression or not intended to replace a diagnosis
another health matter. by a health professional, but is a
good starting point. You can find an
It’s important to note that there is a
anxiety and depression checklist at
range of physical health conditions with
www.beyondblue.org.au/checklist
symptoms similar to those of some
mental health conditions which may Signs of anxiety
make it difficult to diagnose the problem.
For this reason, it’s important to get a The symptoms of anxiety can often
thorough assessment of the person’s develop gradually over time. Given that
physical and mental health. we all experience some anxious feelings,
it can be hard to know how much is too
much. In order to be diagnosed with
“Around that time, it was a puzzle. I
an anxiety condition, it must have a
didn’t really think about depression.”
disabling impact on the person’s life.
There are many types of anxiety, and
there are a range of symptoms for each.
Anxiety can be expressed in different
ways such as uncontrollable worry,
intense fear (phobias or panic attacks),
upsetting dreams or flashbacks of a
traumatic event.
Some common symptoms of
anxiety include:
• hot and cold flushes
• racing heart
• tightening of the chest
• snowballing worries
• obsessive thinking and
compulsive behaviour.
There are effective treatments available
for anxiety. For more information
on anxiety and treatments see the
It may be helpful to familiarise yourself beyondblue Understanding anxiety fact
with the signs and symptoms of anxiety sheet or visit www.beyondblue.org.au/
and depression. If possible, ask the anxiety
person you are concerned about to
complete an online checklist which is
quick and anonymous and will show if
the person has symptoms in common

7
Signs of depression • thoughts such as, “I’m a failure”,
A person may be depressed if he or she “Life’s not worth living”, “People
has felt sad, down or miserable most of would be better off without me”.
the time for more than two weeks and/ As with anxiety, there are effective
or has lost interest or pleasure in usual treatments available for depression. For
activities, and has also experienced more information on depression and
some of the signs and symptoms listed treatments see beyondblue’s Anxiety and
below. depression: An information booklet or visit
www.beyondblue.org.au/depression
It’s important to note that everyone
experiences some of these symptoms
from time to time and it may not
necessarily mean a person is depressed.
Equally, not every person who is
experiencing depression will have all of
these symptoms.
The symptoms will not provide a
diagnosis – for that you need to see a
health professional – but they can be
used as a guide.
Some common symptoms of
depression include:
• not going out anymore, loss of
interest in enjoyable activities
Taking the first step
• withdrawing from close family
and friends It’s important to remember, when you
take the first step in dealing with anxiety
• being unable to concentrate and not or depression, you are not alone – help
getting things done at work or school is available.
• feeling overwhelmed, indecisive and
lacking in confidence Mental health conditions are more
common than you realise
• increased alcohol and drug use
Mental health conditions are common.
• loss or change of appetite and In fact, one in four people will experience
significant weight loss or gain some form of mental health condition2 –
• trouble getting to sleep, staying the most common of these being anxiety
asleep and being tired during the day and depression. It’s not only the person
with the condition who’s affected. It can
• feeling worthless, helpless and guilty
also affect family members and friends.
• increased irritability, frustration
and moodiness Realising that there may be a problem
and then doing something about it can
• feeling unhappy, sad or miserable be easier said than done, particularly if
most of the time you feel that you’re tackling the problem

8
on your own. If you haven’t dealt with • “I’ve noticed that you’re not sleeping
a mental health problem before, it can as well as you used to.”
be daunting and knowing how to help • “I’m worried that your appetite isn’t as
someone can be challenging. good as it was.”
Keep in mind that the person you’re • “I’ve noticed that you don’t seem to
supporting can be helped if the right spend much time with your friends
treatment is accessed. any more.”
Beginning the conversation The person may insist he or she doesn’t
have a problem. He or she may become
Raising the subject with the person you
awkward, cross, frustrated or non-
care about may take some planning and
communicative. In these circumstances,
thought. Consider the following:
try to keep calm, but be firm, fair and
• When is the person most likely to consistent in your approach.
be attentive?
It may be hard to raise the subject
• Where is he or she most comfortable for fear of upsetting the person, but
and at ease? remember that you’re trying to help, so
• Where is there a place you both feel it’s important to try to maintain self-
safe and will not be interrupted? control. He or she may need some time
to come to terms with the discussion
It can be helpful to have this discussion as and overcome the resulting emotions,
early as possible, before symptoms start which may include anger, shame
dominating day-to-day life, conversations, or embarrassment.
activities and relationships. For example,
a person with generalised anxiety
disorder may find it difficult to leave his “He would get really defensive when
or her home. Over time, family members I would bring it up… it was hard… I
may start to accommodate and support didn’t want to hurt his pride, but he
this behaviour because they’re concerned didn’t want to think that he was any
and want to make life easier. In this different from his friends.”
instance, getting the person to leave the
house to see a General Practitioner (GP) You may want to tell the person that
and access treatment may be a difficult you have found some good, reliable
obstacle to overcome. information which will help to put things
in perspective and to make sense of
It’s important to let the person you what is going on.
support know that you are concerned.
Talk sensitively, in a non-accusing and You could leave this information for
non-blaming manner, about the changes the person to read in his or her own
you’ve noticed – even though you may time. You can download or order
feel tired and frustrated with the person. printed resources by visiting
www.beyondblue.org.au/resources
Using ‘I’ statements may be effective, or by calling the beyondblue Support
for example: Service on 1300 22 4636.

9
Acknowledging the impact of A trusted friend or family member may
anxiety and depression be able to get through to the person
and raise some issues without posing
Often mental health conditions lead to
a threat or creating apprehension. In
people becoming very introspective,
more extreme circumstances, where you
making it hard for them to be aware
are very concerned, you may consider
of the impact their behaviour may be
contacting your GP to see if he or she can
having on others.
become involved or make a home visit.
If the person is unwilling to talk about
Your ultimate goal is to help the person
things, you could let the person know
you support and care for, so try to keep
how his or her behaviour is affecting
this in mind even when he or she may be
other family members or friends. This
cross or agitated with you.
may be a way to encourage the person to
try to do something about the situation.
“They have to admit they have a
Encouraging the person to seek help problem before you can get them
is another key step in moving forward. any help… he’s a grown man – I can’t
Suggest that you seek help together. make him go.”
For example, you could make an
appointment for you both to see the
person’s GP for a check-up. The person
may not see this as a threatening or
intrusive option.
Unfortunately, sometimes the person
may be reluctant or may even refuse
to get help. People may give a range of
reasons as to why:
• “I’m not ready.”
• “I’m just going through a phase.”
• “It may just be stress.”
It’s common for people with anxiety
and/or depression to fail to recognise
they need help or support so you may
find it difficult to get your offers of help Getting to the first
accepted. Again, it may be useful to appointment
consider highlighting the broader impact
the person’s behaviour is having on It may be that the conversation about
others. You could also talk about the seeking some professional support
positive effects of getting help. wasn’t easy and actually going to
see a health professional may not be
If the person won’t listen to you, think easy either… but you’ve taken the first
about asking someone else to talk to step and it’s important to keep up
him or her. the momentum.

10
Start with a GP psychological treatment. They would then
The best place to start is by making an report back to the GP on the person’s
appointment with the person’s GP – i.e. progress after treatment.
someone the person is comfortable Under this system, a person with a mental
with and whom they know and trust. health condition like anxiety or depression
Alternatively, consider approaching can claim a Medicare rebate for up to 10
a GP in your area who has been individual consultations and/or 10 group
recommended by friends or a GP who sessions in any one calendar year. While
is highly regarded in mental health. some health professionals will bulk bill,
If you don’t know a GP in your area, there may be out-of-pocket expenses
visit www.beyondblue.org.au/find-a- with others, so it’s important to ask about
professional to find a list of practitioners charges prior to commencement of
(including GPs, clinical psychologists, treatment.
psychologists, social workers and For more information about the cost
occupational therapists) who have a of getting treatment for anxiety and
special interest in mental health, and depression download beyondblue’s Getting
have undertaken additional training in help – How much does it cost? fact sheet at
the treatment of anxiety and depression. www.beyondblue.org.au/resources
This information can also be obtained by
phoning the beyondblue Support Service How can you be involved in
on 1300 22 4636 for the cost of a local the consultation?
call from a landline (it could be more It’s a good idea for you and the person
from a mobile). you support and care for to consider how
When the person with anxiety and you would both like to be involved in the
depression makes an appointment consultation with the GP and the ongoing
with the doctor, it’s very important that treatment process. It can be useful
he or she books a longer or double to view this as a partnership where
appointment, so that they can make the together you both agree to seek effective
most of the consultation and not feel treatment and work towards recovery.
rushed. This also gives the doctor plenty Your involvement at this early stage can
of time to discuss the situation and avoids be vital in assisting the person to get
having to book a second appointment. effective treatment as early as possible
– as well as maintaining momentum
What to expect
during ongoing treatment.
Another reason for booking a longer
appointment is to allow time for the GP
“Unless there’s a family member
to do a thorough assessment and, if
involved somehow or there’s some
necessary, to develop a Mental Health
other back-up, things can often drift
Treatment Plan. This is a plan designed
on for months.”
to enable the GP to manage and treat the
mental health condition. The GP may refer
the person to another health professional It’s worth discussing both your
such as a psychologist, social worker involvement in the consultations with
or occupational therapist to provide health professionals and the overall

11
treatment plan. You may want to discuss
and agree on what information you, as the “One psychiatrist said he really loves
carer, are able to contribute to the session, involving the family because it is less
and if you may be permitted to attend parts work for him – and it’s true. If they
of the consultations. involve the family from the start of
the treatment, giving information
Some people have found it helpful to have
about the treatment, the medication…
their support person present at the first
it’s a lot less hard for everyone.”
part of the session to help give the health
professional information about how the
person has been. This is particularly useful
“The best doctors will have you and
when the person with the condition finds it
the patient come in and then will turf
hard to express how they have been.
you out of the room and talk to the
patient and then turf the patient out
“There was just so much shame and and talk to you.”
embarrassment in him about his
thoughts. He couldn’t even imagine
telling a health professional.” It’s important not to undermine the
person who has the mental health
condition. While you may be eager
Other carers, however, have talked
to get treatment underway as soon
about the importance of being involved
as possible, remember the person
at the end of the session, in order to find
with the condition needs to feel that
out the best way to support the person
he or she is in control and is taking
between appointments.
responsibility for their own treatment
as well. If the person is not actively
involved in this way, he or she may
feel that you are taking over and there
is a risk that they may withdraw from
you and further treatment.

Spend time thinking about the

person’s experiences and
the situation
Once you’ve made the appointment,
spend some time together thinking
about what the person you support
and care for has been experiencing. It
may be helpful to write down his or her
experiences; add your experiences too,
as well as those of family members
and friends who have been affected.
Having a list will be a good prompt
during the appointment and an excellent
way to keep things on track if either of

12
you becomes upset or loses your way. suggested. Also, let the doctor know if
Many people find it helpful to take along you will need interpreting services.
the completed symptom checklist to
begin the conversation. You can find this On the day
by visiting www.beyondblue.org.au/ Some carers say that it’s a good
checklist idea to be prepared for resistance or
procrastination from the person with
Commit to the consultation anxiety and/or depression. On the day
Before the appointment, try to agree that of the appointment, he or she may try
you’ll both try to make the most of it. You to convince you that he or she is well
may discuss how you will tell the doctor and that there is no need to see the GP.
about the symptoms and difficulties. (“See, I am okay today.”) You can try to
It will be helpful to remember that explain, that from what you have read,
you are both committed to helping the this may be part of anxiety/depression
person become well again and that – good days and bad days – and by
you are there to support him or her seeing the GP today, you can all work
towards recovery. towards having many more good days in
the future.
Prepare for the consultation
The person you care for may not want
When you go to the doctor, it’s helpful to go to the appointment because of
to take a list of things you’re concerned distress, apprehension, fear, worry
about, including: or embarrassment. He or she may
• what doesn’t seem right be concerned that he or she won’t be
able to ‘hold it together’ during the
• a completed anxiety and
consultation with the GP. You can put the
depression checklist
person at ease by acknowledging that
• a description of the those feelings are natural and may be
relevant behaviour associated with the condition – and that
• any concerns you may have the GP will have seen these symptoms
which are common to these conditions
• how the person is feeling many times before in other people.
• any questions you both may have. Reassure the person that visiting the GP
is an important step and you’re there to
The more accurate the information you
support them.
provide, the better and more precise the
assessment by the doctor will be. Hiding
If the person refuses help
facts, behaviour and issues because of
embarrassment, fear or in defence of Some carers say they experienced great
the person you care for will only delay difficulty and frustration when trying to
the assessment and in turn delay the get the person to acknowledge that help
recovery. It may also be beneficial to was needed. The person may deny that he
read about anxiety and/or depression, or she has a problem or the person may
along with available treatments so you believe that things aren’t very bad and
will have some idea about what may be they will improve on their own, with time,
and without professional help.

13
As with most health conditions, it’s Seeking a second opinion
important to have the problem assessed While it’s not always easy to talk about
and if necessary, get the appropriate personal issues or feelings, sometimes
treatment as soon as possible. If the it is made more difficult if the person you
person denies that anything is wrong, care for feels that the health professional
this may be because of feelings of can’t relate to his or her story – or if he
embarrassment or shame about the or she doesn’t have confidence in the
possibility that he or she is experiencing health professional’s ability to deal with
a mental health condition. Alternatively, the problem. It may take time to find the
the person may dread having to discuss right health practitioner, but it’s important
their thoughts and feelings with the to keep looking until you’re satisfied the
doctor or may be unaware of their person you support and care for is getting
unusual behaviour. the right help.
In these instances, some carers have If you are seeking a second opinion
solved the problem by focusing on from a GP, it’s important to note that a
particular physical symptoms that the person is eligible for only one GP Mental
person is experiencing such as sleeping Health Treatment Plan within a 12 month
problems, change in appetite or lack period for which Medicare rebates can
of energy. be claimed. It is advisable to take a copy
The person may find it easier to discuss of the previous plan to the new GP for
physical symptoms openly with the doctor review, or if that isn’t possible, to give the
at first, and then lead onto the emotional new GP your permission to obtain a copy
symptoms being experienced. from your previous GP.

If this doesn’t work and the person is

“You have a right to be happy with the
still refusing to seek help, you may have
treatment you receive.”
to accept that there is only so much that
you can do, and that this may not yet be
the right time for the person to get help. How can a carer
This is also true of other conditions where
people won’t seek help until it gets to the access information?
stage when they can no longer tolerate Obtaining information from the health
the symptoms or manage from day to day. professional about the person who is
If this is the case, while you need to receiving care can be a complex issue.
continue being supportive, all you can do There is a delicate balance between
is make the information available and be the individual’s right to confidentiality,
open to discuss things when the person the need to ensure that the practitioner
is ready. Meanwhile, you need to look has adequate and accurate information
after yourself. Be aware that there’s a about the person’s condition, and your
tendency for carers to readjust their lives need to access information that is
around the condition and in doing so, they relevant to your role as the primary
may inadvertently prolong the period support person.
that the person with the condition denies
needing help.

14
Privacy and confidentiality This situation can be become worse
Privacy and confidentiality legislation if the condition becomes more severe
means that you are not always entitled and you, as the carer, are unaware
to give or receive information and of important information about the
you may be excluded from treatment individual’s treatment. For example,
plans and discussions because of carers often talk about the importance
this. However, if the person receiving of understanding what treatments have
treatment consents, you may be given been prescribed, so that they know what
access to information and be permitted to expect and if the person does become
to provide input. particularly distressed, they will have
some idea of what is happening, what to
Clearly, this situation has many do, and who to contact.
implications. As a carer, if you live with
someone with depression and/or anxiety, “They [the doctors] can’t comment. Why?
it can become very difficult to manage Because of that ridiculous privacy act.
day-to-day issues if you’re not fully I understand the privacy act, but for
aware of the state of the person’s mental crying out loud, we are married. And
health, the treatment and any issues that I’m looking to help him rather than to
would impact on the caring role. hinder our relationship. I’m trying to
keep my own sanity… I don’t go blabbing
“As parents, we were left out of the everything out to everybody about my
picture as to how to relate to him.” husband; I don’t have anywhere else
I can go to… I’m trying to tell you how
bad he is getting and I’m wondering
“Look, I understand… there’s whether he needs more medication or
confidentiality… but… I think they something. And they say we can’t talk
need to take on board that you’re the about it. It’s so damn frustrating.”
one he’s seeing. A young man who
is very proud doesn’t want to really
describe all the issues.” “I remember when my son had been
very unwell in hospital and when he
was discharged, we did not know
what had happened in hospital or
what medications he was now taking.
Just some information would have
helped us all deal with things better.”

Communicating with
health professionals
Communicating with health professionals
can help ensure that you are kept
informed. Find out the best way to contact
them, including when to call and how to
reach them in an emergency.

15
Some health professionals may be Be proactive
happy for you to email your questions or Be persistent in trying to access
to make a separate time for you to talk information. This will benefit both of you.
with them about your concerns. Be proactive about taking part in the
Many health professionals welcome consultation. No matter which part of the
talking to the carer. However, some consultation you attend, it will be helpful to
mental health professionals may be show your support and to make the most
unwilling to provide information about of the opportunity to ask questions and
the treatment of the person you support provide relevant information.
and care for, even with their consent. In You have a crucial role in respecting and
some cases, carers aren’t given access to supporting the person you care for, so you
information about the medications being need to feel confident about understanding
taken by the person they support and care the condition, the treatment, its impact and
for or their potential side-effects. overall, what to expect.
Sometimes you may be upset when
you need to contact the treating health “The more you understand the situation,
professional, but it’s helpful to remember the more it gives you strength.”
that they’re also trying to help the person
you care for. Being angry and blaming
them for what has happened will not solve Keeping up the momentum
the problem. Trying to work together as a
You’ve made it to the first appointment
team with the health professional can be
and sought diagnosis and treatment.
more helpful and productive.
However, it’s important to be realistic
and acknowledge this is the beginning
“I would have to say from a carer’s of the recovery process, not the end.
perspective, my experience has only
been positive. Whilst I have not been Educate yourself
invited to be part of any consultation
There may be times when everything
with him, I have been able to approach
seems overwhelming and when the
and have personal contact with the
symptoms, behaviour and challenges
psychiatrist any time I need to. This,
seem relentless.
I must say, is most comforting and
reassuring for me.”
“I must admit I tried not to think too
much about the future and what was
“For me it was good… the psychiatrist going to happen in my life. When I did,
said I could ring any time.” I had all these fears associated with
it, so I knew I had to deal with the day-
to-day living and to help him. I wasn’t
“We are part of the team and I don’t care going to be helping if I was worrying
if I am the problem. I would rather they too much about the future. So we both
told me, ‘Look you’re doing this wrong’,… just took it day by day.”
it would be better. But don’t ignore me.
I’m the one she comes home to.”

16
One way to manage these feelings is to may prove to be helpful to you and the
increase your knowledge about what person you care for.
is happening, why it’s happening and
As a carer, it’s important to help yourself
where you can go from here.
as well. There are many resources
Educate yourself with good quality, and programs available to help and
evidence-based information about support you. A good place to start is by
and anxiety and depression, which is visiting www.carersaustralia.com.au
available at www.beyondblue.org.au or by calling the Carers Australia carer
or by calling the beyondblue Support support line on 1800 242 636.
Service on 1300 22 4636. Investigate
carer support options and call the
Carers Australia carer support line on
1800 242 636. There are many programs
that you can attend and resources that
you can read.

Investigate

“Having a diagnosis made me feel a

little bit better because at least now
we know what we’re dealing with. It’s
unfortunate that it didn’t happen the
year before; it would have saved a lot
of suffering and heartache.”

It will benefit you to understand the

condition, its progression, treatment
options, medications, side-effects and
the mental health system.
You may feel more informed and in
control of what’s happening if you know
about treatment options.
It may also be useful to learn about
the difference between psychologists,
social workers, occupational therapists, Making the right decisions
psychiatrists, public hospitals or mental Sometimes, the person may say that he
health units, specialist community or she is better. He or she may feel well
services, crisis assessment teams or and no longer in need of medication or
acute treatment teams, telephone-based sessions with the health professional.
and online services. It sounds like there It’s important to remind the person that
is a great deal to learn and you may feel it’s the health professional who will help
as though you have learned enough, but to make these decisions – and although
the information you gather along the way treatment may certainly be improving

17
the person’s condition, recovering may of 10 – with one being a bad day and 10
take time. The person needs to be as being excellent.
stable as possible before making any
You may want to devise your own rating
changes to the treatment plan. Any
system, but either way, it will be a useful
adjustment to medication should be
record of improvements and a guide as to
made by the GP or treating team. The
what you both see as a good or not-so-
person should never adjust his or her
good day. You’ll be able to reflect on the
medication without consulting a doctor.
days when things ran smoothly and work
If a person suddenly stops taking certain
towards having more of those days. It will
medications, it can cause withdrawal
also be a handy tool to have when there’s
symptoms which can be unpleasant and
a discrepancy between your ratings.
difficult to manage.
You may want to talk about why you saw
Conversations and keeping a record things differently.
An important part of your relationship Another constructive strategy used by
may be to talk about what is happening many carers is to record the schedule of
and how the person you support and medications and to track, list and discuss
care for is progressing – also, how you’re side-effects. This will be very helpful
working together as a team. The person for the doctor who may not be able to
may need to know that you are confident observe all of the side-effects during
and understand what’s happening. One a consultation.
way to record how things are going is to
write notes in a diary or journal every day Broaden the focus of
about progress, issues and/or symptoms. your conversations
Some carers say they’ve used a rating It’s important to talk about other things
system where both the carer and the besides the mental health condition, so it
person with anxiety and/or depression doesn’t become the focal point of your life
rate how he or she was on that day. It and relationship.
may be as simple as giving a score out Talk about things that are happening,
both in your world and more broadly.
The person you support and care for
may not be interested or able to engage
completely with this, but it’s essential
that he or she has some awareness of
other things happening in the family or
the broader community.
You may try to encourage the person
to participate in a small activity each
day – a short walk, helping to prepare a
meal, reading or listening to music. It can
be hard to persevere when the person
you care for is not able to get much
enjoyment or pleasure from anything, but
it can be helpful.

18
Working towards recovery • treatment plans

Recovery can mean different things • medical appointments

to different people. For some, it’s no • stress-reducing activities such as
longer taking medication, while for walking, meditation, music, craft.
others it’s managing the condition on It’s a good idea to have realistic
a long-term basis. It’s also important expectations about these plans
to remember that when dealing with and about what can be achieved.
mental health conditions such as anxiety Acknowledge that some things may not
and depression, the path to recovery is get done. Don’t become despondent or
not always straightforward, and there discouraged if some of the set tasks
are likely to be times when things seem aren’t achieved.
to slip backwards.
When working towards recovery, it’s
The importance of also a good idea to set goals that are
support networks small and achievable. You may help the
Ongoing support will play a major person to recognise any achievements
role in the person’s recovery and this and acknowledge the progress he
support may come from many sources, or she has made, no matter how big
including friends and family members, or small. This can instill a positive
health professionals and perhaps sense of accomplishment and these
support groups. successes may provide an incentive for
ongoing efforts.
“It’s a really lonely life when you’re Sharing the load
dealing with this on your own.”
Carers often describe feeling totally
overwhelmed and responsible for the
It’s important to ensure that people person. In response to this, many carers
with mental health conditions develop have found it helpful to enlist support
skills to support themselves and do from other family members and friends.
not become totally dependent on their
As a carer, you may wish to discuss with
carers as the sole providers of support.
the person you care for, your need for
Boundaries and goals support and together identify people who
may be able to help if needed.
At home, having structure and a routine
can help set boundaries and bring Support from others can take many
some order to a life that may seem out forms depending on your situation. For
of control. A daily or weekly plan that is example, some carers talk about the
visible and clear encourages positive importance of having a close friend with
behaviour, involvement in the household whom they can go out for a coffee and
routine and looking to the future, even if chat. Others may need more practical
only until the end of the day or week. support such as assistance with
shopping or cooking meals. Whatever
You can encourage the person to include
support you receive, recognise that it
the following in the plan:

19
can be very helpful especially when you stress levels, not all problems that arise
feel overwhelmed. will be due to the condition itself.

The key to managing your own role Does a person with anxiety
in the person’s recovery is to try to and/or depression go through
incorporate the support role into your various stages?
life and try not to let it become your Mental health conditions such as
whole life. anxiety and depression may not always
run a particular course where there
is a clear beginning, middle and end.
It’s important for carers and other
This however, can occur with some
support people to be aware of the signs
physical health problems – a diagnosis,
that may indicate the person with the
treatment such as surgery or medication
mental health condition is becoming
and then recovery.
distressed. Over time, you can learn
what triggers anxiety, irritability, fear Following diagnosis, recovery from
and panic in the person, just as you anxiety and depression can involve
may recognise the warning signs of an progressing through various stages.
asthma attack or migraine. It may include trialling different
medications, treatments or health
Knowing what to look for helps to reduce
professionals. This is all part of learning
your stress and the person’s stress,
what works for the person and what
and can be a helpful coping strategy
doesn’t. This can take time, persistence
for everyone.
and patience.

Try to reflect on the situation Medication

sometimes. This may give you a fresh
In the treatment of anxiety and depression
perspective on how things are going
there are many medications that are safe,
and what is working well for you and
effective and non-addictive. It may take
the person you care for.
time to find the medication or combination
of medications that work in the best way
Overcoming setbacks possible for the person with the mental
health condition. It’s not unusual for
It’s common for carers and people with people to be on medication for several
anxiety and/or depression to say they weeks and then have the medication
have ups and downs, with frequent adjusted or changed to suit the
periods when they felt they were taking individual’s needs. If the person is taking
one step forward and two steps back. medication for other chronic illnesses,
Dealing with setbacks can be frustrating health professionals will be careful to
and disappointing for both the carer and monitor combinations, dosages and side-
the person with the condition. effects. It may take weeks to months to
find the best treatment for the person.
It may be useful to remember that
life in general has its ups and downs Therefore, it’s very important to tell
– and while living with anxiety and/or the doctor if any other medication is
depression is likely to increase your being taken, including herbal remedies

20
or tablets that may interact and/or Relapse
interfere with the medications that have Some people may experience only
been prescribed. one episode of anxiety or depression
Managing the side-effects of medications during their lives where psychological
can be challenging. It’s important to treatment or medication or a
ensure that the prescribed medication is combination of treatments is effective.
taken regularly, at the same time each The episode may last for months or
day, correctly, following the prescribed years, but no repeat episodes occur.
dose and consistently. If the person you For other people, there may be recurrent
care for can’t tolerate the side-effects of episodes of depression or the symptoms
the prescribed medication and wants to related to their mental health condition
stop taking it, urge him or her to discuss may re-occur for a variety of reasons:
this with the doctor before doing so.
• the occurrence of a specific event,
The person you care for may feel well and such as a job loss, relationship
consider the medication unnecessary. breakdown or bereavement
Again, discuss this with the doctor or
encourage the person to do so. • biological or physiological changes in
their body chemistry
Taking medication for a mental health • physical illness
condition is no different from taking • sleep difficulties
medication for a physical illness.
• employment stress
• stopping or starting medication
For example, a person with high blood
pressure takes medication to help • no apparent reason.
manage the condition and would become
unwell without it. “When she started the treatment and
was well again, I thought that was
the end of it. I didn’t think it would
come back.”

To avoid setbacks, it may be helpful

for you and the person you support
and care for to think about and identify
the triggers and symptoms that
were present before the person was
diagnosed. This may help you both to
recognise these warning signs in the
future. You may feel as though you
always have to be vigilant, but as time
goes by, you will understand that drug
and alcohol use, lack of sleep and stress
are common triggers leading to relapse
of anxiety and/or depression.

21
 she may consider attempting suicide or
“You have to be ever-vigilant… it’s like, harming him or herself.
you know, when a dog goes to sleep
it’s always got one ear up? That’s This isn’t necessarily the case for
what it’s like caring for someone everyone with anxiety or depression, but
with depression.” it’s important to be aware that for some
people their condition may become so
severe that they may feel these actions
Moving forward are their only option.
Remember, there are ways of moving It’s always better to be prepared. Talk
through an episode or relapse. You may to the person about the issue of suicide
have already been through this once when he or she isn’t highly distressed
or twice before – and you managed. and support them to develop a safety
Although you may fear it happening plan that can be used to cope should
again, you’re a step ahead now because they be triggered and start heading into
you know more about where to go, a suicidal crisis. These resources can
what to do and who to contact, and help with safety planning:
importantly, how to help.
• www.suicideline.org.au/at-risk/how-
Write down past achievements in the to-make-a-suicide-safety-plan
person’s recovery and focus on these.
Put the notes in a prominent place, so • www.suicidepreventionlifeline.org/
they’ll be a positive reminder. You and Learn/Safety
the person you care for can refer to Sometimes we need to undertake
them when necessary. some training/education to feel more
competent in supporting a suicidal
friend or family member. Training like
the LivingWorks ASIST program
www.livingworks.com.au can help
increase your knowledge and skills.

Suicide and self-harm

Hearing or reading about suicide or self-
harm for the first time can be confronting
and may create feelings of discomfort and
apprehension. These challenging subjects
are unfortunately still stigmatised and
therefore not easy to discuss.
Some people worry that by raising the
Emergency and topic, it may make someone consider
crisis situations suicide who had previously never thought
about it and, therefore, they’re hesitant to
Sometimes, when a person has severe mention the subject. This belief is just a
mental health problems or the person’s myth and in fact not true. Unfortunately,
condition deteriorates rapidly, he or in supporting and caring for someone

22
with depression, there may be times when
you face emergency or crisis situations, “My daughter told me that she had
such as a suicide attempt or incidents of tried to kill herself because she didn’t
self-harm and it’s important to be aware want to go back to school. That rang
and prepared. alarm bells – she was suicidal!”

Self-harm can occur in many ways.

It’s not just cutting oneself or causing Discussions about suicide or self-harm
physical self-harm. Self-harm may should be taken seriously so that you can
include risk-taking behaviour such as understand their distress and suffering
driving fast and recklessly in a motor and comprehend what is happening to
vehicle, being careless on public the person you care for and can support
transport, high rates of alcohol use, him or her by getting the appropriate
drug use and sexual promiscuity. This help. Listening to the person shows your
behaviour can also put the carer, family concern and can help to make him or her
and friends at risk. Although it may be feel less isolated.
difficult, make sure to put your own safety Asking a person if he or she is thinking
first. For example, if the person you care about suicide or self-harm isn’t an
for starts engaging in dangerous driving, invitation for him or her to go ahead with
demand to be let out of the car or refuse either act, but a way for you to show your
to get into the car with them. concern and find out more about what the
It’s frightening and distressing when person is thinking, and to provide help
someone you care about wants to and support.
harm him or herself. It’s important to
Warning signs
remember that for many people this is
part of the condition. However, learning If a person is thinking about suicide, there
about suicide and self-harm may help may be some warning signs. Sometimes
you to recognise when a person is at risk however, these signs may be well hidden,
and you’ll be better prepared should an particularly if the person is withdrawing
emergency occur. from you, other family members
and friends.
Misconceptions about suicide or Strong indicators are previous attempts,
self-harm current or recent thoughts of suicide
Some of the misconceptions about along with talking or joking about suicide
suicide or self-harm may prevent a carer and death or making a suicide plan.
recognising when someone is actually The person may talk about feelings of
at risk. Many people think that these hopelessness and helplessness, feeling
actions are about ‘crying wolf’ or being like they don’t belong anywhere, feeling
manipulative. Instead, when people trapped, feeling like they are a burden on
talk about suicide and their attempts, others or express thoughts about death
they’re looking for help – they attempt through drawings, stories, poetry or song.
suicide because they either want to stop The following behaviours could also be
the pain they’re experiencing or they warning signs that may alert you to a
want to release the pain somehow, by problem: stopping activities that he or she
harming themselves. previously found worthwhile, giving away

23
possessions, increasing or commencing
use of alcohol or drugs and exhibiting “There are times when action is
risky behaviour. non-negotiable.”

If you have concerns, it’s a good idea to

Remember, if the person you care for is
check with other family members, friends
feeling suicidal, he or she is not able to
and teachers. Trust your instincts if you
think clearly or rationally, so you, as
have noticed something different and
the carer, may need to take control of
concerning in the person’s behaviour; it is
the situation.
important to get help and support for the
person at risk and for yourself. Occasionally, the person you care for may
need to go to hospital for treatment if his
Safety planning or her symptoms become more severe, if
Consider developing a safety plan his or her medication is a problem, if he
collaboratively with the person you or she needs specific treatment or if he or
care for to use when he or she is well. she is at risk of self-harm or suicide. If the
Together, list strategies to cope and person is not willing to get help, then it’s a
details about what actions will be taken good idea to talk to a health professional
if he or she starts thinking about suicide for advice about appropriate follow up.
or self-harm or previous plans. Specify
who the person will let know when he or Urgent assistance
she is feeling this way so that they get
If the situation is urgent and you’re
help immediately. A safety plan is the
concerned that the person is in
best way to provide structure to what
immediate danger, do not leave
often seems like an uncontrollable and
the person alone, unless you are
frightening situation.
concerned for your own safety.

“I’ve found it really hard because Call the person’s doctor, a mental
our daughter has been suicidal… health crisis service or dial 000 and
sometimes you just want to relax and say that the person’s life is at risk.
be a bit more low key, but you can’t If the person agrees, you could
because it might happen again.” go together to the local hospital
emergency department for
assessment.
If the person is thinking about suicide or
It is important to keep these
self-harm, you will need to undertake the
emergency numbers handy.
agreed plan of action for his or her own
safety, reiterating that you need to follow
through because you care. You also need
to assure the person that he or she can
trust you and that you trust them.

24
Section 2 – Caring for yourself

Accepting how you feel • “Where to from here?”

When you’re supporting or caring for a • “What next?”

person with a mental health condition, • “Is this only the beginning?”
you’re likely to experience a range However, bear in mind that these
of feelings. Sometimes, adjusting questions are normal because for most
to the problems you’re facing and people this is a new experience.
understanding your emotional reactions
can take its toll.
“I felt pretty terrible because I hadn’t
Your reactions are normal recognised it… so I felt shattered…
but I also felt a great relief that
now we know what’s wrong and
First and foremost, remember that
it’s fixable.”
your reactions are normal. They
reflect how you feel and shouldn’t be
questioned or judged by other people Many carers say that once the mental
who aren’t walking in your shoes. health condition had been identified,
Everyone’s experience is unique, their feelings of love and protection for
although there are many feelings the person increased. Sometimes
and experiences that carers have simultaneously, carers felt a sense of
in common.

During the initial stage, when the

person you’re supporting is diagnosed
with a condition such as anxiety or
depression, it’s likely that you may feel
relief because:
• there is a name for the difficulties you
have both been facing
• there is a reason for the behaviour
• help is available.
You may also experience some fear and
confusion initially wondering:

25
helplessness because they couldn’t been’ – the fear that someone may never
control or improve the situation. reach his or her full potential, fulfil hopes
and dreams or that the relationship may
Common feelings at various stages of
never return to what it was.
the journey include:
• fear “It’s distressing; the personal
• confusion powerlessness. There is no word I
can say, there is nothing I can do.”
• guilt
• blame
“No mother likes to see their child’s
• shame
life taken away from them in a
• uncertainty manner such as this. It’s a personal
• insecurity sadness seeing your gorgeous son,
great big strapping son, destroyed in
• grief. this way. It has by far and away been
the worst for me.”
“I felt like he wasn’t able to reach
his full potential in a work situation
and that really set him back and I felt “Desperate, unhappy, sad and longing,
really sad. He was an intelligent man just longing to do anything to help, but
who was so gifted in so many ways there’s nothing I can do.”
and yet he wasn’t able to see that
potential because of this challenge,
vulnerability… I felt aggrieved for him “So I felt very angry and also guilty. I
– and for what could have been.” felt, and still do, as a mother I should
be able to make my son better. I mean
I know it’s impossible… but I feel very
“I felt so guilty and scared at the sad that I can’t make his life better.”
same time. I was worried about
what this would mean for us, for our
family. We were reliant upon him to
provide for us, and the thought that
he would be unable to do this was
terrifying. On top of this, I then felt
totally guilty. He was suffering and
there I was thinking about finances.
How heartless, but then it was a
frightening concept… I was torn
between fear and guilt.”

Many carers have also described

experiencing what is often referred to as
‘anticipatory grief’. This refers to a feeling
of loss and sadness at ‘what might have

26
There are many reactions you Supporting or caring for
may experience someone else may affect
People in caring and support roles have relationships
described numerous feelings such as
being overwhelmed by the demanding Not only does living with and continually
and often unrelenting nature of the role. supporting someone with a mental
The high level of responsibility that health condition affect you and your
comes with caring for and supporting relationship with the person, but it’s
another person, particularly if this likely to affect relationships with other
includes physical, practical and financial people as well.
support, can be exhausting and may
also trigger feelings of resentment, Relationships
frustration and anger. Family life may be disrupted. Routines
and the sense of ‘normality’ you once
“I wouldn’t put up with it if I didn’t had in your home gradually change,
love him.” often without you recognising it. You
may find that the changes you and the
family made to adjust to living with the
All of these feelings may, understandably,
person and his or her condition have now
give rise to guilt. It’s important to
become the norm.
acknowledge these are normal
responses to the situation in which you
find yourself. Accept that they are part of “It restricts. I rarely see a friend or
a life experience that you didn’t plan. You anything… I don’t really invite people
may ask yourself, ‘How am I supposed to over that much because of it.”
feel?’ There is no single or short answer
to this – how you feel is how you feel. It’s
important to remember that help is “I have very few friends because I’m
available and you are not alone. frightened to invite people to our
house as he might be in one of his
Remember, the situation in which you find moods on a particular day when we’re
yourself is beyond your control. You’ve having people over for dinner.”
had no say in it. You didn’t ask for this to
happen – but nevertheless, here you are.
“I wish I could have the same ‘sister’
This doesn’t mean that you love or care
relationship my friend has... She goes
about the person you are supporting any
shopping with her sister, but I never
less. However, it’s likely at some stage
get to do things like that.”
that you will react and you may not be
able to predict when and how. Again, this
can be a normal response to an unusual Social relationships may also change.
situation because you are using all of The response or lack of response you
your energy and resources to take care get from friends and family members
of the person and to take care of yourself. may be surprising or hurtful. This may
be because they don’t understand
anxiety or depression, what it means, or
what you may be going through.

27
 “After we got married we didn’t have “I just got so much flak from my
friends because to invite people over workmates that I was ready to
for a meal or a barbecue or whatever quit. They didn’t understand why I
was just too huge a task – too much would need time off at a moment’s
for her to be able to cope with and notice sometimes.”
they didn’t understand.”

In some situations, carers may

“It was a sort of taboo area where experience financial difficulty and
people didn’t want to talk about hardship as a result of:
a mental illness and that would • inability to maintain full-
frustrate me endlessly because I time employment
was looking for support too to try
and cope with what was happening. • ongoing medical expenses
But they just wouldn’t say anything • helping to meet the financial
because they just wouldn’t know commitments of the person
what to say.” who is unwell.
Carers may be eligible for income
support such as the Carer Allowance
or the Carer Payment. Check with
Centrelink www.centrelink.gov.au
for details.

28
 Parents
“I’ve been backing my daughter
financially because she can’t work Parents of children with anxiety or
and I’ve been paying whatever to depression often feel responsible. They
get her by. She does budget, but I think that they may have contributed to
have to help her get by on a very this in some way.
regular basis.”
“I thought ‘Oh God – what have I
done?’”
“All our married life, the responsibility
has always been on me and I’ve had
to make all the decisions. He could “You do think nature/nurture. Was it
never cope with money and he could their environment, how much is it
never cope with the bills – that would nature and how much was it you?”
send him into a spin. All our life, I’ve
dealt with the financials of our life.” This can be compounded by parents
feeling blamed when they sense
underlying questions from friends or
Relationships may become one-sided
other family members about their
because people with depression are
children’s behaviour, their parenting
sometimes so focused on their own
skills or the amount of love and support
problems that they may have nothing left
they give to their child.
to give to a relationship.

“Other people can be critical of not

“I love my husband, we’ve been
only the way you are supporting them,
married for many years, but
but the fact that you are continually
these things are playing havoc
supporting them.”
on our marriage.”

If your relationship has changed, It’s important to try to work out

remember that this is mainly due to the what is being protective and what is
person’s condition. If the person gets the reasonable care.
right treatment and recovers, then your
relationship has a chance of returning “You always have that struggle within
to what it was before the person yourself, but then when other people
became unwell. You may move to a new are critical rather than giving helpful
stage of your relationship. For more suggestions or support, this doesn’t
information, contact Relationships make it any easier.”
Australia by calling 1300 364 277 or
visiting www.relationships.com.au

29
Parents often mention the challenge
of balancing the need to support their “His younger brother just didn’t
children without becoming over- understand, and he was amazing with
protective and making them totally his coping skill because he tended
dependent. This dependency could to move away and he actually said ‘I
prevent the child from developing hate my brother, I hate him, why does
personal coping or management he do this?’ I suppose he sees him
strategies which could potentially delay upsetting the whole family, sees him
his or her recovery. Remember, many demanding ‘This has to be done this
parents grapple with deciding when to way’ and says ‘I’m not going anywhere
be there and when to step away. until it’s done this way’, and that holds
everybody up.”

“At the end of the day, you have to do

what is right for you – but it is really
“My son (not the one with the illness)
hard. You are trying not to make them
said to me one day, ‘I can’t do this
dependent, but you are trying to be
any longer’. He’s fifteen. You sort of
empathetic, supportive and feel very
try and explain it, smooth things and
protective at the same time. No matter
make it right to keep the family sort of
what other people think, you just have
functioning in a dysfunctional way.”
to do what is right for your family.”

It can be particularly important to

“You doubt yourself. On the one discuss the situation openly within the
hand, you are thinking ‘You should family, educating everyone about the
be harder on her’, but then am I condition and the importance of each
expecting too much?” person having a role in supporting the
person with the condition (and each
other) at this time.
“It’s a fine balance between giving
them a gentle push, without pushing
them over the edge.”

Balancing parenting and caring is

further complicated when there are
other children in the family. It’s difficult
trying to treat all children equally
and trying not to focus solely on the
child with the condition. You may have
to manage feelings of resentment
that siblings may experience when
the unwell child is seen to be given
special treatment.

30
Children
For more information and resources
Children of a parent with a mental health
for parents and young people, contact
condition may find they have additional
Children of Parents with a Mental
responsibilities around the home or in
Illness (COPMI) by visiting www.
supporting their parent. In some cases,
copmi.net.au
children may be the primary carer of
a family member. They may become
resentful at having to do extra things to Siblings
ensure the household runs smoothly, Siblings of children with a mental health
especially when they’re taking on tasks condition may worry that they too will
that are beyond their years. become unwell – ‘Will this happen to
me too?’ They may feel embarrassed
Children may also feel embarrassed or
and self-conscious about their sibling’s
awkward about the condition or their
situation and withdraw from the family
parent’s behaviour and be unsure about
and their sibling, particularly in school
how to tell others or invite them into their
or social situations. As well, they may
life or home. One of the main concerns for
feel frightened of triggering behaviour
children is whether they too will develop
in their sibling and resentful of the
the condition, although they may not
attention he or she receives because
mention this, discuss it openly, or even
he or she is unwell or unhappy. Other
want to acknowledge it.
issues for children, siblings and young
It’s important for young carers to tell carers include disruption to their
somebody (perhaps a teacher, friend education, social and sporting activities.
or other family member) about what’s
Acknowledge that it can be difficult for
happening at home and to know that there
siblings, too. Show you understand they
is support out there for them.
might face their own challenges as a
sibling of someone with a mental health
“I realised something was up with condition. Let them know they can ask
Dad – the fact that he wasn’t like you questions and that it is OK for them to
other people’s fathers and so forth… express a mixture of feelings about what
certainly the tendency to not want to is happening.
socialise – so it would really take an
effort for either myself or my mother
“It’s just awful, absolutely awful. You
to motivate him enough to interact
want your children to get along and
with other people, go out – even
you think how are they ever going to
socialise just as friends.”
be close? And they’ve only got each
other. They’ve only got one brother
each, and you want them to get along.”
“I wish my mum was like other mums.”

Siblings may also need support to manage

the reactions of others in the community.
The responses of friends and other people
their age are very important, especially
during teen years, and siblings may need

31
 Partners
Providing ongoing care and support
can be particularly draining and
tiring for a partner. The mental
health condition, increased tension,
decreased communication and reduced
intimacy all combine to change the
relationship significantly.
In particular, carers describe a sense
of loss when the level of intimacy, both
emotional and physical, is reduced or has
disappeared. This loss of intimacy may be
attributed to a range of things.
For example, the condition itself may
impact on the person’s self-esteem and
confidence, with the person needing to
withdraw from others. Alternatively, there
may be side-effects from medications that
impact on libido.
help in explaining the condition to them. As a result, over time, the relationship
Siblings may also experience grief and/or dynamics may change significantly, and
loss: they may feel losses relating to their many carers say that they feel a sense of
sibling, their parents, and for themselves grief and loss that they no longer have the
when they realise that their sibling relationship with their partner that they
relationship is different from others. once did.
Siblings can find enormous support from
other siblings through online forums, “I also have some grief in the sense
reading books, or attending support that I missed out on a normal
groups. If siblings feel that they are marriage. I’m more his mother
supported, can talk about their feelings than his wife. I’m the carer. There’s
and learn ways to cope with any stresses affection, but there’s no physical side
they are more likely to adjust well to their to our marriage, it finished about
experiences. three months after we got married.”

For more information and resources

for siblings of people with special “There are times I’ve said to her what
needs, including disabilities, chronic was a labour of love has become
illness and mental health conditions, just labour… So I suppose in some
contact Siblings Australia by visiting ways it’s become more a brother/
www.siblingsaustralia.org.au sister relationship than anything else,
but I’ve become a carer more than
a husband.”

32
Many people who care for a partner with Friends
a mental health condition struggle most Friends who take on a caring role may
at times when the challenges of care struggle to find the right balance in
become overwhelming, leading some to their relationship and they may worry
consider leaving the relationship. This about over-stepping the mark. There’s
in turn leads to the carer experiencing a fine line between being intrusive and
strong feelings of guilt for considering being supportive. It can be difficult
abandoning his or her partner in his or to maintain the friendship and, at the
her time of need. same time, urge the person to access
help/treatment. The person who’s
“I couldn’t describe my marriage as not well may resent what they see as
a happy-go-lucky sort of marriage. interference and the change in the
I suppose you hear about all these balance of the friendship.
people who the partner has left, they
couldn’t cope with it. That crossed my Friends may worry about upsetting the
mind I don’t know how many times. I person they care for, causing the person
did stay with it because of the kids to withdraw from the friendship and
in the early days, I stuck it out. And isolate him or herself even further. It can
it’s just gone on. One day becomes a also be difficult when only one person
week and another week becomes a in the friendship group is aware of the
month and a month becomes a year problem and can’t share it with others.
and the years just roll on, and that’s Try to maintain an open dialogue with
the way it’s been. And it’s not been a the person and encourage him or her to
happy time, because of all the things develop other supports and strategies.
that have happened and you’ve got to While you may feel privileged that your
go through and be put through and friend has opened up to you and is
so forth… There’s affection of course seeking your support, it can be difficult
between us, always has been, I don’t if he or she becomes reliant solely
know. When you marry it’s not a bed on you. Therefore, it’s important to
of roses all your life. People say you encourage the person to seek treatment
have to work at marriage, well, Jesus, and support elsewhere, such as
I work at it.” from friends, family members and/or
support groups.
It’s important that you try to relieve the
challenges by drawing on other avenues Finding the right balance
of support and give yourself some time One of the big challenges for carers
out. This will not only provide the and family members is the issue of
opportunity to relax, but you’ll be able to accommodating the person’s condition,
take a step back and review the his or her behaviour and needs, and the
relationship and the situation. Individual impact this has on family life.
and/or couples counselling may also
Family dynamics may change because
help provide support, reassurance and
you’re being protective and trying to
strategies to cope with difficulties.
reduce the stress on the person you care
for, trying to minimise the impact on

33
others and trying to keep things under Looking after yourself
control. Sometimes, because you adapt
so much to the changes in your life, you The impact of supporting and caring for
begin to see the situation almost as a a person with a mental health condition
new kind of normal. is, in many ways, similar to other caring
or support roles, with many carers
With changes at home, your behaviour describing it as ‘relentless’. The intensity
alters and your quality of life is affected of any supporting or caring role may vary
because you’ve been trying to make life depending on whether you live with the
easier for the person. person, the extent of your experience,
the severity of the condition, and
“I wouldn’t like to leave him unattended access to treatment and other means
for too long if I can avoid it… I don’t go of support.
anywhere during the week.”
“It’s hard to live like that and give up all
Many carers describe this as ‘walking on your own life and your expectations of
egg shells’. Remember that you also what you’re going to do with your life
have needs and at some point, you may to care for somebody else.”
have to put those needs first.

Sometimes, you may need to take “I want a break from thinking about it
control of the situation – offering all the time.”
suggestions about options and
making arrangements on the Caring for a person with a mental
person’s behalf. You may need to health condition compared to a
be assertive. The person with the
physical health condition
condition may be self-focused and
may lack the initiative or desire to When you care for a person with a
connect with the outside world. mental health condition, it’s different
from supporting or caring for a person
with a physical health condition. Many
Many carers say it’s important to access
people simply don’t understand that
professional help to assist them in their
depression is an illness nor do they
supporting and caring role and to
understand the intensity or the ongoing
provide strategies and reassurance.
nature of the carer’s role.

“The only way I could get the balance Carers may feel isolated due to the lack
right was with the direction of of understanding about anxiety and
a psychologist who helped me depression and the associated stigma,
learn what I needed to know, and not only in their community, but often
when and how to respond to among their own families and friends.
different situations.” Carers of people with a mental health
condition such as anxiety and depression
may face difficulties that carers of
people with other health problems may

34
not face. For example, the person with
anxiety and depression may not want
to get help. This may be due to denial,
pride, fear or embarrassment – feelings
which may not be as common with many
physical health conditions. Many carers
support people with both physical and
mental health conditions, which can be
especially challenging. It’s important
that all health problems are recognised
and treated.
Carers may also live with the person’s
extreme behaviour (associated with
the mental health condition). This may
include for example, rituals associated
with obsessive compulsive disorder
(OCD), periods of elevated mood
associated with bipolar disorder and
periods of low mood and withdrawal
associated with depression. Certain
behaviours may also be frightening
for the carer, and it is important for
carers to protect their own safety
and wellbeing. This behaviour isolates And it is important that you do
the person with the condition and the have hope.
carer, too.
On the not-so-good days, when hope is
Hope missing, carers should remember that
in most cases anxiety and depression
For many carers, fear, concern and are treatable or manageable.
worry are always present, even when
they’re not with the person they support Hope may be drawn from small
and care for. They may wake thinking achievements like when the person you
about the person and even when their care for attends a doctor’s appointment,
thoughts are occupied and they’re busy, gets out of bed or sees a friend. Even
the person is always in the back of their though these are small achievements,
minds. They wonder how he or she is. nevertheless, they are achievements.
They hope he or she is OK and safe. They You will learn to appreciate them in
want the best for the person and hope he whatever form they come, the good days
or she will be able to recover and return and the good moments, the hugs and the
to his or her former self. smiles – all of which happen day by day.

Don’t be too hard on yourself

“It has taken me eleven years to get
hope back… it has been an evolution.” Many carers are hard on themselves.
They worry that they aren’t doing enough
and that they should be doing more for

35
the person they care for. They may feel
that some of the person’s mental health “I have to try and step back and say, I
problems are their fault: am no longer your carer, I am your
husband again.”
• “It’s genetics.”
• “It’s my parenting.” It may mean you need to plan and take
• “I haven’t been a good friend breaks. Make time for exercise,
or partner.” relaxation, dinner with friends and time
for your interests. Continue the activities
Carers may internalise these issues you enjoy, maintain a life of your own and
because they can’t make sense of why look after yourself. It’s important that
there is a problem and they may blame you’re not hard on yourself and that you
themselves. Remember this is not your give yourself a break.
fault. It’s nobody’s fault.
Try to refocus your ‘self-talk’ and make it “I don’t go away on holidays as much
more positive. Remind yourself that you’re as I should… for the marriage it’s
doing the very best you can and although better, and yet I’ve got this guilt.”
you may not have all the answers, it
doesn’t mean you’re doing the wrong thing
by the person you care for. Remember, you “One of the best ways to look after
didn’t make the person unwell or cause the somebody else is to look after
person’s mental health condition. You want yourself first.”
what is best for the person, even on the
days when you feel extremely frustrated.
When the person is angry and resentful Being self-aware
towards you, remember that when he Another way of taking care of yourself
or she can see more clearly, he or she is to recognise when you need more
will understand and appreciate that you help and seek support. Monitor what
are there. you’re thinking and how you’re feeling.
Be aware of self-talk, notice if you’re
Often, carers of people with a mental
experiencing more frequent headaches,
health condition say it’s important to set
tightness in your muscles, lack of sleep
boundaries. This may mean you need to
and poor concentration.
protect yourself by not looking too far
forward and take each day as it comes. Knowing how to take care of yourself
and where to get help will benefit you.
“At some point, it has got to be about Below are some suggestions:
you and about having a life for • find out about local counsellors
yourself some times.”
• use your Employee Assistance
Program in your workplace if
“One of the hardest things to do… is it’s available
to step back from being a carer and • book in for a massage
resume being what you were before
• exercise at your local pool or
this thing happened.”
leisure centre

36
• walk regularly in surroundings sleep, frustrations, efforts and energy
you enjoy. have mainly been directed towards the
To give yourself a break and relieve person you support and care for. You’ve
some tension, do whatever works best tried to make sure the person has the
for you. It will also help to ensure that right support to reach recovery – but
you get enough sleep, eat nutritious what support is there for you? And what
and well-balanced meals, exercise support is right for you?
regularly and maintain your friendships
Your privacy
and interests.
Many people prefer to maintain their
privacy and keep to themselves when
“I’m fairly calm. It takes a fair bit to
dealing with mental health conditions.
get me going, but there have been
However, it’s important that this does not
occasions where I’ve lost it I suppose…
prevent you seeking support for yourself.
it just builds up inside of you. I
suppose the only way I can cope with If you’re struggling to support a person,
it is just by closing it off. Instead of don’t think you’re betraying a confidence
exploding, I close it off.” because you talk to someone in order
to get support for yourself. There is only
so much you can do for other people
“And I’ve kind of run out of adrenalin… if you’re not physically and mentally
I’m not sure if I’ll be able to carry well yourself.
on forever.”
Informal support networks
Some carers say they prefer to rely
“In some ways, I am not allowed to on their informal support networks
be stressed or depressed or sick, including family and friends. They know
because that makes him anxious… the carer and if he or she’s been open
and then you get in trouble for not
being well or depressed. Sometimes,
you pretend… you try to cover. There’s
a real panic that there’s something
wrong with the rock.”

The right support for you

So much of your role as a carer is about
supporting the person with the mental
health condition. You’ve helped the
person to see a GP. You’ve supported
the person when treatment has been
started – whether it’s medication
or a combination of treatments or
another form of therapy. Your thoughts,
conversations, lifestyle, worries, lack of

37
with them, they’ll know the situation. Yet helpful. The advantage of support
there can be problems with relying on groups is that people will know what
informal support. There may be times you’re going through because they
when a carer needs constructive and have been there and you won’t have to
challenging points of view to help move explain what’s happening. You are much
through a rough patch. Carers may less likely to be judged by people who
need an independent sounding board – understand your experiences. Even if
someone with whom they can be truly you don’t attend the group for a long
honest, rather than containing some time, you may meet people whom you
of their thoughts, particularly if they can continue to see as an independent
are building resentment or thinking of support-base outside the group.
leaving a relationship.
You can visit your local Community
Counselling Health Centre, Community Centre or
Neighbourhood House to find out about
Other carers have found individual support groups or activities near you.
counselling to be helpful because it gives Carers Associations around the country
them time to debrief, uninterrupted. also have support groups for carers,
They see it as constructive and a safe including for mental health carers. You
place to voice all of their worries, fears, can find your state or territory Carers
grievances and frustrations. Association at www.carersaustralia.
The National Carer Counselling Program com.au or by calling 1800 242 636 (free
is a specialist national counselling service call from landlines).
for those who care for people with mental
health issues. To access the service, call
1800 242 636 (free call from landlines).

“I needed the help as a carer, not

anything to do with my husband. It
was just that I needed somewhere to
go for support for me.”

Support groups
When it comes to support groups, there
is a range of groups and it’s not one-
size-fits-all.
Talking to people who are in a similar
situation may be helpful in gaining
support, but it also normalises all that
is happening in your life. You may like
to attend a support group especially
for carers. You may continue to attend
the group regularly for as long as
it meets your needs and you find it

38
 What will work for you
“I found the biggest help is to talk to
somebody else and you hear them It’s a good idea to think about what you
talking and you hear them say I find helpful and what will work for you.
can relate to that, or you know that To help you decide, talk to your GP and
someone understands what they’re discuss the options. Some carers find
talking about. Someone can be support groups very helpful because they
sympathetic, but if someone actually hear how other people manage, learn
knows what you’re talking about, strategies and tips – whereas others
that’s the big thing… because nothing find this overwhelming. Rather than
else is going to change.” participating in a group, you may prefer
to talk to one person on an ongoing basis
– so individual counselling may be your
“I have made some of my best friends best option. Some people find comfort in
and supports through support groups. spiritual support and counselling.
They truly understand not only what
Remember, not every option works for
you are going through at the time, but
everyone, so you need to choose what is
even when things are back on track
best for you.
they are still with you.”
beyondblue fact sheets and information
resources can be downloaded or
There is a range of support ordered free of charge at
groups but not all groups will suit www.beyondblue.org.au/resources
everyone. It’s important to find a or by calling the beyondblue Support
group with a structure in which Service 1300 22 4636. You can also
you feel comfortable. Some carers watch carers’ stories of hope and
say that the most important thing recovery on YouTube www.youtube.com/
to look for in a support group is a beyondblueofficial
positive, forward-looking attitude
and perspective.

References
1
Cummins, R. A., Hughes, J., Tomyn, A., Gibson,
A., Woerner, J., & Lai, L. (2007). Australian
Unity Wellbeing Index: Report 17.1 The Wellbeing
of Australians – Carer Health and Wellbeing.
Melbourne: Australian Centre on Quality of Life,
School of Psychology, Deakin University.
2
Australian Bureau of Statistics. (2008). National
Survey of Mental Health and Wellbeing: Summary
of Results, 2007 (4326.0). Canberra: Australian
Bureau of Statistics.

39
More information and support

beyondblue Black Dog Institute

www.beyondblue.org.au www.blackdoginstitute.org.au
Learn more about anxiety and depression, Information on symptoms, treatment
or talk it through with our support service. and prevention of depression and
1300 22 4636 bipolar disorder.
Email or chat to us online at
www.beyondblue.org.au/getsupport headspace
www.eheadspace.org.au
mindhealthconnect www.headspace.org.au
www.mindhealthconnect.org.au 1800 650 890
Access to trusted, relevant mental A free online and telephone service that
health care services, online programs supports young people aged between 12
and resources. and 25 and their families going through a
tough time.

National help lines Kids Helpline

www.kidshelp.com.au
and websites 1800 55 1800
Lifeline A free, private and confidential
www.lifeline.org.au telephone and online counselling service
13 11 14 specifically for young people aged
Access to crisis support, suicide between 5 and 25.
prevention and mental health
support services.

40
MensLine Australia Children of Parents with a
www.mensline.org.au Mental Illness (COPMI)
1300 78 99 78 www.copmi.net.au
A telephone and online support, COPMI develops information for parents,
information and referral service, helping their partners, carers, family and friends
men to deal with relationship problems to support children of parents with
in a practical and effective way. mental illness.

Post and Antenatal Depression Commonwealth Respite and

Association Inc (PANDA) Carelink Centres
www.panda.org.au www.commcarelink.health.gov.au
1300 726 306 1800 052 222
Information, support and referral Support and assistance for relatives and
service for anyone affected by post and friends caring for someone at home. The
antental depression, including partners Centres provide a link to and information
and extended family. about a wide range of community, aged
care and support services available
locally or across Australia, including
SANE Australia Helpline
services for older people, people with a
www.sane.org
disability, and those who provide care
1800 18 7263
and services.
Information about mental illness,
treatments, where to go for support and
help for carers. Mental Health Carers Arafmi
Australia
Suicide Call Back Service www.arafmiaustralia.asn.au/contact-
www.suicidecallbackservice.org.au services
1300 659 467 Association for Relatives and Friends of
A free nationwide professional telephone the Mentally Ill (ARAFMI) offers a range of
and online counselling for anyone services for carers of people experiencing
affected by suicide. a mental health condition in states and
territories across Australia.

Support for carers Mental Illness Fellowship of

Australia (MIFA)
Carers Australia www.mifa.org.au
www.carersaustralia.com.au A national network of service providers,
1800 242 636 with members in every state and
Short-term counselling and emotional territory working alongside individuals
and psychological support services for and families affected by serious
carers and their families in each state mental illness. Each state member has
and territory. programs for people with mental illness
and their families, including the Well
Ways family education program.

41
Where to find more information
beyondblue
www.beyondblue.org.au
Learn more about anxiety and depression, or talk it through with our Support Service.
1300 22 4636
Email or chat to us online at www.beyondblue.org.au/getsupport
mindhealthconnect
www.mindhealthconnect.org.au
Access to trusted, relevant mental health care services, online programs and resources.

facebook.com/beyondblue @beyondblue @beyondblueofficial

Donate online www.beyondblue.org.au/donations

© Beyond Blue Ltd. BL/0445 08/14