Looking after yourself

Your reactions are normal

First and foremost, remember that your reactions are normal. They reflect how you feel and shouldn’t be questioned or judged by other people who aren’t walking in your shoes. Everyone’s experience is unique, although there are many feelings and experiences that carers have 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: 

• “Where to from here?”
• “What next?”
• “Is this only the beginning?”

However, bear in mind that these questions are normal because for most people this is a new experience.

Many support people say that once the mental health condition had been identified, their feelings of love and protection for the person increased. Sometimes simultaneously, supporters felt a sense of helplessness because they couldn’t control or improve the situation.

Common feelings at various stages of the journey include:

• fear
• confusion
• guilt
• blame
• shame
• uncertainty
• insecurity
• grief.

Many support people 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 been’ – the fear that someone may never reach their full potential, fulfil hopes and dreams or that the relationship may never return to what it was.

“Desperate, unhappy, sad and longing, just longing to do anything to help, but there’s nothing I can do.”

There are many reactions you may experience

People in support roles have described numerous feelings such as being overwhelmed by the demanding and often unrelenting nature of the role. The high level of responsibility that comes with supporting another person, particularly if this includes physical, practical and financial support, can be exhausting and may also trigger feelings of resentment, frustration and anger.

“I wouldn’t put up with it if I didn’t love him.”

All of these feelings may, understandably, give rise to guilt. It’s important to acknowledge these are normal responses to the situation in which you find yourself. Accept they are part of a life experience that you didn’t plan. You may ask yourself, ‘How am I supposed to feel?’ There is no single or short answer to this – how you feel is how you feel. It’s important to remember help is available and you are not alone.

Remember, the situation in which you find yourself is beyond your control. You’ve had no say in it. You didn’t ask for this to happen – but nevertheless, here you are.

This doesn’t mean you love or care about the person you are supporting any less. However, it’s likely at some stage you will react and you may not be able to predict when and how. Again, this can be a normal response to an unusual situation because you are using all of your energy and resources to support the person and to take care of yourself.

Relationships

Family life may be disrupted. Routines and the sense of ‘normality’ you once had in your home gradually change, often without you recognising it. You may find that the changes you and the family made to adjust to living with the person and their condition have now become the norm.

“It restricts. I rarely see a friend or anything… I don’t really invite people over that much because of it.”

In some situations, supporters may experience financial difficulty and hardship as a result of:

• inability to maintain full-time employment
• ongoing medical expenses
• helping to meet the financial commitments of the person who is unwell.

Support people may be eligible for income support such as the Carer Allowance or the Carer Payment. Check with Centrelink for details.

Relationships may become one-sided because people with anxiety and/or depression are sometimes so focused on their own problems that they may have nothing left to give to a relationship.

If your relationship has changed, remember that this is mainly due to the person’s condition. If the person gets the right treatment and recovers, then your relationship has a chance of returning to what it was before the person became unwell. You may move to a new stage of your relationship. For more information, visit or contact Relationships Australia.

Parents

Parents of children with anxiety or depression often feel responsible. They think that they may have contributed to this in some way.

This can be compounded by parents feeling blamed when they sense underlying questions from friends or other family members about their children’s behaviour, their parenting skills or the amount of love and support they give to their child.

It’s important to try to work out what is being protective and what is reasonable care.

Parents often mention the challenge of balancing the need to support their children without becoming over- protective and making them totally dependent. This dependency could prevent the child from developing personal coping or management strategies which could potentially delay their recovery. Remember, many parents grapple with deciding when to be there and when to step away.

“It’s a fine balance between giving them a gentle push, without pushing them over the edge.”

Balancing parenting and being a support person 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.

It can be particularly important to discuss the situation openly within the family, educating everyone about the condition and the importance of each person having a role in supporting the person with the condition (and each other) at this time.

• Visit Beyond Blue's Healthy Families website to find more information, knowledge and confidence to support the young people in your life.

Children

Children of a parent with a mental health condition may find they have additional responsibilities around the home or in supporting their parent. In some cases, children may be the primary support person of a family member. They may become resentful at having to do extra things to ensure the household runs smoothly, especially when they’re taking on tasks that are beyond their years.

Children may also feel embarrassed or awkward about the condition or their parent’s behaviour and be unsure about how to tell others or invite them into their life or home. One of the main concerns for children is whether they too will develop the condition, although they may not mention this, discuss it openly, or even want to acknowledge it.

It’s important for young support people to tell somebody (perhaps a teacher, friend or other family member) about what’s happening at home and to know that there is support out there for them.

For more information and resources for parents and young people, contact Children of Parents with a Mental Illness (COPMI)

Siblings

Siblings of children with a mental health condition may worry that they too will become unwell. They may feel embarrassed and self-conscious about their sibling’s situation and withdraw from the family and their sibling, particularly in school or social situations. As well, they may feel frightened of triggering behaviour in their sibling and resentful of the attention they receive because they are unwell or unhappy. Other issues for children, siblings and young support people include disruption to their education, social life and sporting activities.

Acknowledge that it can be difficult for siblings, too. Show you understand they might face their own challenges as a sibling of someone with a mental health condition. Let them know they can ask you questions and that it is OK for them to express a mixture of feelings about what is happening.

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 support in explaining the condition to them. Siblings may also experience grief and/or loss: they may feel losses relating to their sibling, their parents, and for themselves when they realise that their sibling relationship is different from others.

Siblings can find enormous support from other siblings through online forums, reading books, or attending support groups. If siblings feel they are supported, can talk about their feelings and learn ways to cope with any stresses they are more likely to adjust well to their experiences.

For more information and resources for siblings of people with special needs, including disabilities, chronic illness and mental health conditions, contact Siblings Australia

Partners

Providing ongoing 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, supporters 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.

As a result, over time, the relationship dynamics may change significantly, and many support people say that they feel a sense of grief and loss that they no longer have the relationship with their partner that they once did.

“I also have some grief in the sense that I missed out on a normal marriage. I’m more his mother than his wife. I’m the carer. There’s affection, but there’s no physical side to our marriage, it finished about three months after we got married.”

Many people who support a partner with a mental health condition struggle most at times when the challenges of support become overwhelming, leading some to consider leaving the relationship. This in turn leads to the support person experiencing strong feelings of guilt for considering abandoning their partner in their time of need.

It’s important that you try to relieve the challenges by drawing on other avenues of support and give yourself some time out. This will not only provide the opportunity to relax, but you’ll be able to take a step back and review the relationship and the situation. Individual and/or couples counselling may also help provide support, reassurance and strategies to cope with difficulties.

• Find out more about looking after yourself

Friends

Friends who take on a supporting role may struggle to find the right balance in their relationship and they may worry about over-stepping the mark. There’s a fine line between being intrusive and being supportive. It can be difficult to maintain the friendship and, at the same time, urge the person to access help/treatment. The person who’s not well may resent what they see as interference and the change in the balance of the friendship.

Friends may worry about upsetting the person they support, causing the person to withdraw from the friendship and isolate themselves even further. It can also be difficult when only one person in the friendship group is aware of the problem and can’t share it with others.

Try to maintain an open dialogue with the person and encourage them to develop other supports and strategies. While you may feel privileged that your friend has opened up to you and is seeking your support, it can be difficult if they become reliant solely on you. Therefore, it’s important to encourage the person to seek treatment and support elsewhere, such as from friends, family members and/or support groups.

Supporting a person with a mental health condition compared to a physical health condition

When you support a person with a mental health condition, it’s different from supporting or caring for a person with a physical health condition. Many people simply don’t understand that anxiety and depression are illnesses nor do they understand the intensity or the ongoing nature of the supporters role.

Support people may feel isolated due to the lack of understanding about anxiety and depression and the associated stigma, not only in their community, but often among their own families and friends.

Supporters of people with a mental health condition such as anxiety and depression may face difficulties that support people of those with other health problems may 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 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.

Support people 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 support person, and it is important for supporters to protect their own safety and wellbeing. This behaviour isolates the person with the condition and the support person, too.

Hope

For many support people, fear, concern and worry are always present, even when they’re not with the person they support. They may wake thinking about the person and even when their thoughts are occupied and they’re busy, the person is always in the back of their minds. They wonder how they are. and they hope they are OK and safe. They want the best for the person and hope they will be able to recover and return to their former self.

And it is important that you do have hope.

On the not-so-good days, when hope is missing, support people should remember that in most cases anxiety and depression are treatable or manageable.

Hope may be drawn from small achievements like when the person you support attends a doctor’s appointment, gets out of bed or sees a friend. Even though these are small achievements, nevertheless, they are achievements.

You will learn to appreciate them in whatever form they come, the good days and the good moments, the hugs and the smiles – all of which happen day by day.

Don’t be too hard on yourself

Many support people are hard on themselves. They worry that they aren’t doing enough and that they should be doing more for the person they support. They may feel that some of the person’s mental health problems are their fault:

• “It’s genetics.”
• “It’s my parenting.”
• “I haven’t been a good friend or partner.”

Supporters may internalise these issues because they can’t make sense of why there is a problem and they may blame themselves. Remember this is not your fault. It’s nobody’s fault.

Try to refocus your ‘self-talk’ and make it more positive. Remind yourself that you’re doing the very best you can and although you may not have all the answers, it doesn’t mean you’re doing the wrong thing by the person you support. Remember, you didn’t make the person unwell or cause the person’s mental health condition. You want what is best for the person, even on the days when you feel extremely frustrated. When the person is angry and resentful towards you, remember that when they can see more clearly, they will understand and appreciate you are there.

Often, supporters of people with a mental health condition say it’s important to set boundaries. This may mean you need to protect yourself by not looking too far forward and take each day as it comes.

“At some point, it has got to be about you and about having a life for yourself some times.”

It may mean you need to plan and take breaks. Make time for exercise, relaxation, dinner with friends and time for your interests. Continue the activities you enjoy, maintain a life of your own and look after yourself. It’s important that you’re not hard on yourself and that you give yourself a break.

Being self-aware

Another way of taking care of yourself is to recognise when you need more help and seek support. Monitor what you’re thinking and how you’re feeling. Be aware of self-talk, notice if you’re experiencing more frequent headaches, tightness in your muscles, lack of sleep and poor concentration.

Knowing how to look after yourself and where to get help will benefit you. Below are some suggestions:

• Find out more about staying well

Your privacy

Many people prefer to maintain their privacy and keep to themselves when dealing with mental health conditions. However, it’s important that this does not prevent you seeking support for yourself.

If you’re struggling to support a person, don’t think you’re betraying a confidence because you talk to someone in order to get support for yourself. There is only so much you can do for other people if you’re not physically and mentally well yourself.

Informal support networks

Some support people say they prefer to rely on their informal support networks including family and friends. They know the supporter and if they've been open with them, they’ll know the situation. Yet there can be problems with relying on informal support. There may be times when a support person needs constructive and challenging points of view to help move through a rough patch. Supporters may need an independent sounding board – someone with whom they can be truly honest, rather than containing some of their thoughts, particularly if they are building resentment or thinking of leaving a relationship.

Counselling

Other support people have found individual counselling to be helpful because it gives them time to debrief, uninterrupted. They see it as constructive and a safe place to voice all of their worries, fears, grievances and frustrations.

Start by:

• contacting the Beyond Blue Support Service or
• accessing the National Carer Counselling Program –  a specialist national counselling service for those who supporter 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 supporters. You may continue to attend the group regularly for as long as it meets your needs and you find it helpful.

The advantage of support groups is that people will know what you’re going through because they have been there and you won’t have to explain what’s happening. You are much less likely to be judged by people who understand your experiences. Even if you don’t attend the group for a long time, you may meet people whom you can continue to see as an independent support-base outside the group.

You can visit your local Community Health Centre, Community Centre or Neighbourhood House to find out about support groups or activities near you.

Carers Associations around the country also have support groups for support people, including for mental health supporters. You can find your state or territory Carers Association at Carers Australia or by calling 1800 242 636 (free call from landlines).