Carers identified?

What about you

Page last updated: 2010

Supporting someone with a mental illness can be an extremely challenging experience that takes you along unexpected and unknown paths. Trying to make sense of your feelings, the illness, and the whole situation brings many questions with sometimes, it seems, even fewer answers. This is not an unfamiliar experience, many families and other carers often say they feel this way.

It is important to understand 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, however it is good to find opportunities to share these feelings as you may be surprised to find how much you have in common with other people who are carers.

When you are the carer of a person with a mental illness you're likely to experience a range of feelings. Sometimes, adjusting to the problems you're facing and understanding your emotional reactions can take its toll. This sometimes means you might become anxious or depressed and need to seek help for yourself.

Maybe you have had thoughts or questions like the ones below. Hopefully the stories from other carers can give you some reassurance and support to help you in your journey.

Is what I am feeling a common experience for families and friends?

During the initial stage, when your family member or friend is diagnosed with a mental illness, 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 feel some fear and confusion and wonder:
  • Where to from here?
  • Is this only the beginning?
These questions are all normal because for most people this is a new experience.

Many family members and other carers say that once the mental illness had been diagnosed, their feelings of love and protection increased. Sometimes, at the same time, you might feel a sense of helplessness because you cant control or fix the situation.

Common feelings at various stages generally include:

  • fear
  • confusion
  • blame
  • guilt
  • uncertainty
  • insecurity Top of page
"I felt pretty terrible because I hadn't recognized it...so I felt shattered...but I also felt a great relief that now we know what is wrong. I think that it is impossible for anyone who has not had this experience to understand the trauma that mental illness can have on a family. As a mother of a very intelligent and loving son it is very hard to let go of the hopes and dreams that you have for his future.

I felt guilty and scared at the same time. I was worried about what this would mean for us, for our family. We are reliant on him to provide for us, and the thought that he would not be able to do this was terrifying. Then I felt even more guilty. He was suffering and there was I thinking about money. How heartless...I was torn between guilt and fear."

Families and friends of people with a mental illness also describe other feelings such as being overwhelmed by what is required of them. It may seem just too demanding and there may be no relief in sight. The high level of responsibility that can come with caring for, and supporting, another person, particularly if this involves 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."

"I am only hanging in there to help my grandchildren."

It is important to know that these are normal responses to a situation you did not plan. Remember, the situation in which you find yourself is beyond your control. You had no say in it. You didn't ask for this to happen - but nevertheless, here you are.

This does not mean you love or care about your family member or friend any less. However, it is likely that at some stage you might react to all these feelings - and you might not be able to predict when, or how. Again, this is normal response because you are using all your energy and resources to take care of your family member/friend and to take care of yourself. Top of page

How will the experience affect the rest of the family and my friends?

Relationships

Living with, or supporting a person with a mental illness not only affects you. It is likely to affect the other relationships within your family and with friends.

Family life may be disrupted. Routines and the sense of 'normality' you once had in your home may gradually change, often without you recognizing it. You may find that the changes you have all gradually made to adjust to living with a person whose behiour has changed have now become the norm.

"I rarely see a friend or anything...I don't really invite people over that much because of it."

"It has affected my family greatly and still does. Like me, they had no dealings with mental illness and thought their sister was a spoilt brat at first until I gathered all the information I could put my hands on to help me understand more and to convey what I learnt to my children. In one way, it has split the family because they still cannot comprehend mental illness, as they are busy with their own children - my grandchildren."

"Whenever we have a family get together I know my family, including myself, are very careful with our choice of words in case my daughter becomes up set and has an outburst. This makes it very unpleasant for everyone."

Social relationships may also change. The response you get from friends and family members may be surprising or hurtful. This may be because they don't understand mental illness, what it means, or what you may be going through.

"Both my husband and my son had difficulty accepting my daughter being diagnosed with mental illness. Now after many years they have become more understanding of mental illness as a whole - not just within our immediate family. We also found it hard that 'friends' of long standing were unable to provide much support to us. In fairness this was probably due in part to their limited knowledge of mental illness and therefore they had their own problems acknowledging what we were dealing with." Top of page

In some situations you may experience financial difficulty as a result of:

  • Not being able to continue working full-time
  • Ongoing medical expenses
  • Helping to meet the financial commitments of your family member/friend.
"I just got so much flak from my workmates that I was ready to quit. They don't understand why I sometimes need to take time off at a moment's notice sometimes."

"I have been assisting my daughter with money because she can't work and I've been paying whatever she needs to get by."

Relationships can become one-sided because people with a mental illness are sometimes so focused on their own problems they may have nothing left to share with anyone else.

If your relationship has changed, remember this is mainly due to the person's illness. If that person gets the right treatment, then your relationship has a chance of returning to what it was or you may move to a new stage in your relationship. Top of page

Parents

Parents of children who develop a mental illness often feel responsible. They think they might have contributed to this in some way. This can be made worse by parents feeling blamed when they sense underlying questions from friends or other family members about their children's behaviour, their skills as a parent, or the amount of love and support they give to one child.

"Other people can be critical of not only the way you are supporting them, but the fact that you are continually supporting them."

It is important to work out what is being protective and what is reasonable care. Parents often talk about the balancing act they struggle with. Where is the line between reasonable support and becoming over-protective, or when to be there and when to step away.

"At the end of the day you have to do what is right for you - but it is really hard."

Brothers and sisters

Balancing parenting and caring can be even more complicated when there are other children in the family. It's difficult trying to treat all children equally and not focus solely on the child with the illness. Other children may feel resentment when the unwell child is given special treatment.

"...our other children, although we didn't realise it at the time, but they told us later that we were kind of putting a lot of pressure on them by not giving them a fair share of our time and by kind of putting expectations on them to be the 'normal' ones...I don't think we knew we were doing it except by saying things like, 'Thank God you're okay."

Some children may also worry that they too will become unwell - "Will this happen to me too?" They may be embarrassed and self-conscious about the situation and withdraw from the family and their brother/sister.

It is very important to discuss the situation openly within the family, educating everyone about the illness and the importance of each person having a role in supporting the person with the illness (and each other) at this time. Top of page

Partners

Providing care and support can be particularly draining and tiring for a partner. The mental illness, increased tension, decreased communication and reduced intimacy, may all combine to change the relationship significantly. As a result, over time, the relationship may change and many carers say that they feel a sense of grief and loss that they no longer have the relationship with their partner that they once did.

Many people who care for a partner with a mental illness struggle most at times when the burden of care becomes overwhelming, leaving some to consider leaving the relationship. This in turn may lead you to experience strong feelings of guilt for considering abandoning her/his partner in their time of need.

It is important you try to relieve the burden by looking for other avenues of support and by giving yourself some time out. This not only provides a time to relax but also to step back and review the relationship and the situation. Individual and/or couple counseling may also help provide support, reassurance and strategies to cope with difficulties.

Friends

Friends who take on a caring role may struggle to find the right balance in their relationship and they may worry about over-stepping the mark. There can be a fine line between being intrusive and being supportive. It can sometimes be difficult to maintain the friendship and, at the same time, encourage the person to seek treatment. 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.

While you may feel privileged that your friend has confided in you, it can become difficult if she/he becomes totally dependent on you. It is important to try to maintain open discussion and encourage the person with the illness to develop other supports and strategies from friends, family and/or support groups. Top of page

Finding the right balance

One of the big challenges for family and other carers is the issue of accommodating the person's illness, her/his behaviour and needs, and the impact this has on family life. Sometimes, because you adapt so much to the changes in your life, you begin to see the situation almost as a new kind of normal.

With changes at home, your behaviour may alter and your quality of life may be affected because you are trying to make life easier for the person with the illness.

Many carers describe this as 'walking on egg shells'. Remember, you also have needs and at some point, you may have to put those needs first.

Many carers say it's important to access professional help to assist them in their caring role and to provide practical strategies and reassurance.
"The only way I could get the balance right was with the direction of a psychologist who helped me learn what I needed to know, and when and how to respond to different situations." Top of page

I never expected to feel grief and loss

Many carers have also described experiencing what is 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 his/her full potential, fulfill hopes and dreams or that the relationship may never return to what it was.

"There's this awful grief that goes on. It's not like when someone dies and the grief is there for a year or so and then it's finished. This type of grief goes on and on. You think this time it will be all right, but then you fall in a hole again. It is continual and that's what wears me down."

"I clearly recall the shock of recognition I had when, some months after my son had been diagnosed, a mental health professional asked how I was handling my grief. "Grief? Me? But he's alive?" And then, "Yes. Of course that's what it is." It was almost a relief. Finally I could identify the awful, heavy feeling that had dragged along with me as each day I continued putting one foot in front of the other. Finally I could begin to talk about my engulfing sadness that my beautiful boy had already lost almost a year of his youth to this awful, awful illness that I found so hard to understand. I grieved that his friends had moved on from him - they didn't understand either and at 20 they didn't have a second to waste as they hurtled on into their own futures. I grieved at not having been able to prevent this dreadful illness, at not being smart enough, and at somehow being responsible for his pain...".

"But my grief, my sense of loss, was also for me, for my innocence, for the loss of my perfect family. After years of sharing my son's triumphs, joys and aspirations with my own circle of family, friends and acquaintances, I could no longer do this. And I was angry that this should have happened to me, who'd tried so hard to do it all the right way."

"It helped me to talk about my feelings; it helped me to read books on grief and loss, and the various stages one goes through. It's true, much of it is not the same, but there are similarities and I knew instinctively that, whatever the course of my son's illness, we would never be able to go back to those earlier, simpler days. And there was grief in that too ..."

"Small achievements, like getting out of bed for the day, were the victories we would learn to celebrate. I still feel sad and empty when I look at her childhood photos. When she was paranoid and argumentative I would wish it all away and resent the ugliness of mental illness. When she died I felt relief that the madness was over but absolutely devastated that we had lost her for eternity. I still want her back." Top of page

How on earth am I going to cope?

For many people who find themselves in a caring role, fear, concern and worry are always present, even when they're not with the person for whom they care. They may wake up thinking about the person and even when they are busy doing other things, the person is always in the back of their mind. They wonder how he/she is. They hope he/she is okay and safe.

"Anger was only upsetting me and our whole family atmosphere was affected. Tension was created, I found it hard to continue through my day and I had no positive results from my outbursts. I had to realise that my anger was only affecting me and not working so I stopped being angry and found other methods of expressing my opinion."

...I had to take a good look into myself and try to analyse my reactions and behaviour and understand what impact I had on other people. An interesting development occurred when I investigated alternative options of dealing with people and life. I discovered that I had stumbled onto an opportunity for personal growth. It is the irony of life, the harder the challenge the more you learn. Top of page

I feel like I am going to explode... I need help too...

"Caring for someone with a serious mental health condition can be socially and emotionally isolating. It is difficult to navigate these seas without incurring some personal problems along the way. I developed two sides to me - the public "I am coping/I've got it together" face and the private secret face that only I knew. I felt I had to keep things together on the surface because people were depending on me to help my sister and my brother as well as dealing with my own family's needs. I was being torn in several directions and eventually I thought I was going to explode."

One way of taking care of yourself is to recognize when you need more help and seek support. Monitor what you're thinking and how you are feeling. Are you experiencing more than the usual number of headaches, tightness in your muscles, lack of sleep or poor concentration?

Remember that you are merely human and have needs of your own. Continually putting them off, or not allowing time for yourself, will only make you resentful, irritable and could eventually make you unwell.

  • Allow time each week to do something you enjoy, something to make you feel relaxed, refreshed and that life is good.
  • Eat regularly and well. Poor sleep and diet will only add to your overall stress levels.
  • Exercise as much as possible - even a short brisk walk will help.
  • Plan to take regular time out and/or holidays - and take them.
  • Put in clear boundaries with the person you care for. Be clear about what you can, and cannot do - and stick to it.
  • Ensure there is at least one supportive person with whom you can talk confidentially. It is really easy to lose your perspective and sense of humour if you feel isolated.
  • Remember that your GP can be a source of help. Take a friend with you if you think you may not be able to tell the doctor how you are feeling.
  • Knowing about the mental illness you are dealing with will help you to understand it and act appropriately, even if the person you care for doesn't want to know.
  • Joining a carers group may help relieve isolation, stress, loss of humour and loneliness as well as helping you to understand different types of illness.
  • Seek advice from the team involved with providing care if you can - if not a Carer Consultant/Family Liaison Worker can help get answers for you.
  • If you feel you should be receiving services that you're not getting, don't be too proud or too afraid to complain - don't just cope all by yourself. Top of page

Something or someone's got to change. Maybe its me...

So much of your role as a carer is about supporting the person with the mental illness. You helped them to see a GP, and to find and start treatment. You monitor their medication. Your thoughts, conversations, lifestyle, worries, lack of sleep, frustrations, efforts and energy have been mainly directed towards the person you care for. What support is there for you? What support is right for you?

I am convinced that the transition from purposeful coping to recovery came about when I faced my fear of losing my brother and understood that this journey was about sharing the load with others. Reaching out for help from mental health organisations, support agencies and professionals, really made a difference at times.

I have learned that I can make a difference in certain areas of his recovery but there are times when I have also had to accept that I have not been helpful in my attempts at caring. Ultimately I had to really understand that my brother was his own person, an adult who had the right to make his own decisions, that stepping back and letting him exercise his rights was essential.

My family and I have learned that it is important to become informed about dealing with mental illness - learn strategies that work eg how to support someone financially without creating dependency, how to recognise signs of early breakdown to intervene sooner, how to cope with dual diagnosis - drug/ alcohol dependency.

Learning to say "no" helped me cope and helped me look after my own health. There came a time when I decided that I would only allow a certain amount of my time to be used up by my son and I learnt not to feel guilty when I was doing something for myself that I enjoyed. It was sometimes very hard not to feel guilty when my son had been home on his own in a bad way, but I decided I just needed to live a life too. Top of page

Privacy

Some people like to maintain their privacy and keep to themselves when dealing with mental illness. However it is important that this does not prevent you from seeking support for yourself.

If you are struggling to support a person, don't think you are 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 people say they prefer to rely on family and friends for support. They know you and they know the situation. This is fine however there may be times when you may need to have your opinions and actions challenged if you are going to move forward. You may need an independent sounding board - someone with whom you can be truly honest, rather than censoring some of your thoughts, particularly if you are feeling resentful, or thinking about leaving a relationship.

Counselling

Some carers find individual counseling helpful because it gives you time to off load everything in an uninterrupted way. This could be a constructive and safe place to voice all your worries, fears grievances and frustrations.

It can also be a way of learning some new ways of thinking about old situations and developing some new skills. Top of page

Support groups

When it comes to support groups, there is a range of options and it's not one size fits all.

Talking to people who are in a similar situation may be helpful in gaining support. There are support groups just for carers. You could attend the group for as long as it meets your needs and find it helpful. The advantage is that people will know what you're going through because they have been there and you wont have to keep on explaining what is happening. Even if you don't attend for long, you may meet some people whom you can continue to see outside the group.

"I don't know if I have coped very well, there have been many times when I just didn't... After about 13 years into my daughter's illness, and with other health issues and business worries, I saw a 'Carer's Group' advertised. I went along and now don't know how I managed without the warmth, friendship, understanding and total support of this group, which has been invaluable. I believe this has helped immensely and has made a big difference not only to me, but the rest of the family. Personal counseling provided a confidential means of talking freely of my concerns and at the time helping me with strategies to deal with issues and challenges."

There is a range of support groups but not all groups will suit everyone. It's important to find a group with a structure in which you feel comfortable. Some carers say the most important thing to look for in the group is a positive, forward-looking attitude and perspective. Top of page

What will work for you

You will probably need some time to think about what you might find helpful. You could get some help in deciding by discussing the options with your GP. Some people find support groups helpful because they hear how other people manage - whereas others find this overwhelming. Rather than participating in a group you may prefer to talk to one person on an ongoing basis - so individual counseling may best for you. Some people find comfort in spiritual support and counseling.

Remember, not every option works for everyone, so you need to choose what works best for you.