What makes it different?
When asking for others we often use our knowledge, our understanding and our common sense. When we ask for ourselves something happens that can make this more difficult. Because we are emotionally linked to the caring situation, our feelings and thoughts take over and what we know we should be doing goes out of the
window.
Imagine that you had to act on Liz's behalf. I expect you would tell her to arrange to meet with the social worker, be clear about what she wanted and to state those needs clearly. This sounds great, so what happens when you try to do that for yourself? How would you feel if you were in that situation, having to ask for something for yourself that also affects the person you care for?
You get emotionally wound up because your situation not only affects you but also the person you both care for and care about. The stakes are that much higher and carers often find themselves in this sort of situation. Knowing what they should be doing but finding themselves unable to do it. And in the end we can be left experiencing two of the most unpleasant feelings around; anxiety and guilt. In the next section we will take a little time to look at what anxiety and guilt really are and how we can start to overcome them.
Anxiety
Being emotionally involved in a situation that we are trying to deal with increases our sense of "risk". We are laying ourselves open to being turned down and so we often experience a high level of anxiety. Especially if we are asking for something for ourselves or if it is to improve the situation of someone we care about. For some people the degree of anxiety they experience can stop them even beginning to put their views forward. Asking for what we want should be a straightforward process. But for some people it represents extreme "danger" and their level of anxiety can prevent them from putting their views across.
Anxiety is an extremely unpleasant emotional state. It is often accompanied by distressing physical symptoms such as shaking, dry mouth, sweating, butterflies, tense muscles, a pounding heart and feelings of nausea and dizziness. These symptoms are produced by our bodies as a response to a threat or danger.
When we are in a dangerous situation or one that we believe could be dangerous, our bodies produce a hormone called adrenaline, which is released by the nervous system into our blood stream. This hormone has the effect of increasing our heart rate which in turn allows more oxygen to be pumped around our bodies. More energy is then available for our muscles. This change in our bodies is designed to help us run away from danger or defend ourselves.
Other bodily changes also take place, for example the blood supply to our stomach is reduced so that more blood can be distributed to our muscles. We experience nausea, a churning stomach and alternate flushing and cold sweats. All of these changes in our bodies make sense if we are in real danger in that they prepare our bodies to react quickly to the situation. However, there is a problem if we experience that level of anxiety when there is no actual danger. If this happens, we are left with bodies full of extra adrenaline and no increased activity to use it up. As a result we can end up feeling tense and shaky.
People who experience this degree of anxiety in situations often report that the feelings are also accompanied by thoughts which increase the level of anxiety. Typical thoughts are:
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I am going to make a fool of myself |
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Everyone will think I am stupid |
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I'll freeze up |
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If I speak my voice will go funny |
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I wish this was over with |
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I won't get what I ask for |
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People won't listen to me |
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I am going to blush/tremble/be sick |
Anxiety is a normal reaction to any situation where we are making ourselves "vulnerable". Asking for something, as we have seen, is a situation when we are "risking" being turned down. When faced with such a situation our body recognises a "threat" and prepares us to do battle or run away. In a sense it wants to protect us. Have you ever been in a situation where you suddenly feel anxious? If you feel that your anxiety about asking gets in the way of your actually asking, then there are some simple things you can do to help yourself.
To begin with you can work through the following exercise that will help you prepare what you want to say. You can learn relaxation techniques or practice the quick relaxation outlined below. This could help you to keep anxiety to a more manageable level or you could explore the possibility of taking someone else along with you so that you don't feel so isolated and alone.
Quick Relaxation
If you find yourself in an anxiety-provoking situation the first thing to remember is that, unless the danger is real (for example a tiger is chasing), then it is only your thoughts that are telling you that you are in danger. Bearing this in mind:
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Focus on your breathing |
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With your mouth closed - breathe in deeply through your nose |
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Hold it for a couple of seconds and breathe out slowly through your mouth |
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Repeat three times |
Even in the most difficult situations it is possible to relax by focusing on your breathing - and with practice no one will notice you are doing it!
Dealing with guilt
We all feel guilty at some time in our life. It is a normal, natural feeling. We learn about guilt when we are very little. We learn that when we do something wrong, like pinching chocolate bars from the local sweet shop or hitting our brother, we are going to get told off. We know we have done wrong and the feeling of guilt is there to stop us doing it again. This is what guilt is there to do, to stop us doing things that we are not "allowed" to do. However as we get older we use guilt in a different way as well. We use it to stop ourselves doing things that are perfectly reasonable. We start to tell ourselves that we are not entitled to things; that other people need them more than us; that we can manage all right. We then convince ourselves that we shouldn't ask for things for ourselves and if we do, we feel guilty because we think it isn't allowed.
We can easily get ourselves into a "guilt cycle". Until very soon we feel guilty about asking for anything for ourselves. Carers often speak about feeling guilty; guilty about asking for themselves; guilty for not asking for the things that would help the person they care for; guilty about not being able to give enough time or energy to the person they care for. Sometimes they just feel guilty about everything.
Now the first thing to get straight is that guilt in this sense is not really a feeling. It is something that stops us feeling. This might not sound right but if you think about it for a moment you can see that asking for more help is not wrong. You are not doing anything "naughty" yet you end up feeling guilty.
It is perfectly reasonable not to want to care all of the time, to sometimes feel angry or irritated with the person we care for. Only we don't always allow ourselves to experience these feelings. We feel guilty instead. Guilt can be used to stop us thinking things and experiencing our feelings about any situation.
Guilt can stop us feeling things about the situation we are in. As we have mentioned before, it is natural to sometimes feel angry with the person you care for but how often do we actually say that we feel angry? We often stop that feeling with guilt. We tell ourselves that we shouldn't feel angry and feel guilty about having felt it in the first place.
This is why it is important to look at your thoughts and feelings about any situation. You don't actually have to get angry or upset, just being honest with yourself about how you really feel can be helpful in cutting down on guilt.
Remember - you only have to feel guilty if you have actually done something wrong!
Having looked at how we can help ourselves to overcome some of the difficulties that can get in the way of us asking, we need to move on to look at how we can prepare to speak up for ourselves.
How to be your own advocate
If you recall we said earlier that there are five basic rules to self advocacy:
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Be clear about what you want |
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Make sure you have enough information |
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Prepare your case |
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Make sure you have time to put your views across |
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Be active about getting your views across |
Using these rules we need to start with thinking about what it is we really want. The following exercises will help you to be clear about this. You can either work through them now if you have a difficulty you want to sort out, or you can just read through them and go back to them when you need to in the future.
Just doing the exercises won't solve the difficulty but they will help you to be clear about what you want, why and how that will help you. These are the key things that we need to get across. Remember that this doesn't just relate to practical things. It can also relate to how we feel about a situation. Too often we just want things to be different but are not always clear about how we want it to be different or what that would mean to us as carers.
Exercise 2
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Think abut your situation and complete the exercise. |
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What would you like to be different? |
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How would that change benefit you? |
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How would it benefit the person you care for? |
Doing this exercise will help you to get a clear picture of what it is that you want to be different. For example, someone might put down that what they would like to be different is that they would like to be less tired. If they were less tired then they might feel that they could cope better with their caring situation. The benefits for them could be that they are less irritable and this change of mood would then benefit the person they care for.
Once we have decided what we would like to be different we can then move on to look at this in more detail.
Exercise 3
Sometimes we need practical help, at others emotional support and at others we need information, depending on our situation at that time.
So, thinking about these different needs:
Imagine that you lived in the ideal world - what would make your caring situation as you would want it to be?
Back in the real world - what one thing from what you have written above would help you?
Having identified what would help, we need to think about how we could get this. For example, we may have decided that we need a break, but we are not sure about what services might be available. So we need to think about how we could find out. That might mean more information or talking to others in similar situations.
What might you need to find out about in order to get the one thing that would help you most?
Having a clear idea about what we need we can move on to look at how we are going to get this - not an easy task! Remember, what we want can be practical, emotional, or just more information.
Exercise 4
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Who can help me get what I want? |
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How could they help me? |
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What will I ask them? |
Some of you may be thinking, at this point, that all this writing it down and thinking about what you are going to do is a waste of time and that the time would be better spent just getting on with it. Well up to a point that's right. However, if you feel anxious about asking for what you want then the more you prepare your thoughts the easier it will be. Having a clear strategy which is focused on what you want and that you feel comfortable with will, in most instances, leave you feeling much less anxious when you do ask.
As someone once said... “If you don't have a plan of where you want to get to, you will probably end up somewhere else.”
Information
When we have reached this point it may be that we recognise that what we need most is more information. Being able to find out what services and support are available is vital to carers. Unfortunately, all too often carers do not have all the information that could make their caring situation a little bit easier. It would be impossible in a guide like this to list all the organisations that can offer advice, information and support to carers. However, at the back of this booklet you will find the contact point for organisations that could be your starting point. If they cannot help you then they will probably be able to point you in the direction of someone who can. Again it is a good idea to think clearly about what information you need before you approach an organisation. Try this exercise.
Exercise 5
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What do I need to know more about? |
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Who might know? |
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How will I contact them? |
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When will I contact them? |
Making Contact
It is worth spending time thinking about how you are actually going to make contact with whoever you need to speak to. You may need to telephone, meet them face to face, or have to put your views across at a large meeting. You might already know the person or they might be someone you have never met before.
In any situation there are some things that you can do to help yourself. Whichever way you intend to make contact you need to have a clear idea of what you want to say. The easiest way of doing this is to write it down. It doesn't have to be a long list; just the basic issues will be enough.
For example, if you have to telephone someone you could begin with:
“Hello, my name is ............................... and I am the carer for ............... I would like to speak to you about................... (For example respite, day care, the person I care for's health). Can I discuss it now or do we need to make an appointment?”
This gives you the opportunity to state clearly what you want at the first contact. You can then use all your other information to build your case. You will already have this information if you have done the exercises in this booklet. At the back of this booklet there is a checklist that you can use next time you have to make contact with someone.
You also need to think about when is the best time for you to speak to them. If the person says that now is not a good time to discuss it, have a list of times when you will be available. Always note down who you spoke to, when, what was discussed and what was agreed. If you are at a meeting, ask the person to let you have a brief account of what you discussed in writing.
So we are nearly ready to put our plans into action but before we do that we need to look at one more area - what we do if things don't work out.
Contingency Plans
With the best will in the world and with all your planning, there will be times when you don't get what you ask for, or you might be offered something that you don't really want.
Being able to negotiate is one of our most useful tools in these situations. Whilst wanting the very best for the person we care for and ourselves, we also have to be realistic. That doesn't mean that we shouldn't strive towards getting better and more services, just that sometimes we have to take it one step at a time. It can often be useful to think about the one main thing that we want and focus on getting this rather than asking for a whole list of things. You can then "work through" the list.
If we ask for something and get an outright "no", then we need to ask why we are being denied services. We don't need to just accept a "no"; we also need to know why!
When we ask for things we also, in our own minds, need to have an idea of what we would settle for if we cannot get all of what we want. For example, Liz, our carer at the beginning, might really have wanted her mum to go every day to day care, but would settle for her mum going 2 or 3 times a week.
So be ready to negotiate and reach a compromise. This doesn't mean accepting what is offered, it means working out, for yourself, if what is being offered is acceptable for you and the person you care for.
Saying No
Sometimes carers are offered services which they don't want or which don't meet their needs. For example, someone might be offered day care when the person really wants home care and meals on wheels. It is perfectly acceptable to turn down offers which are nothing like what you want. Find out why this has been offered. If might be that the person misunderstood what you wanted. It might be that they have decided what would be best for you rather than listening to what you would prefer.
So, whilst you need to be clear about what it is that you want and how it would help you, you also need to be prepared to negotiate and compromise - at times. But remember you only have to compromise when there is no other alternative.
Action Time!
The next stage in our plan is to get what we want. Armed with the necessary information as back-up and full of confidence we start to put our views forward. Easy? Well, no it isn't that easy for a lot of carers. Despite our best efforts, things can still seem to go wrong. We end up sometimes feeling that we haven't been listened to, not taken seriously and back where we started, maybe feeling that we aren't entitled to what we have asked for and are not worth listening to. And so that cycle of expectation and despair can set in. Now it isn't like that for all carers but for some of us it is our real experience of asking for what we need.
Getting other people to listen to us is a difficult but not impossible task. The following will give you some useful pointers towards getting others to listen and take you seriously.
Being heard
Keep it simple. If you say simply what you want, why it would help you and what benefits it would have for the person you care for, people are more likely to listen.
Don't get into justifying what you want. We often get into situations where we justify every little thing. And when we start to do this we are not only justifying our needs to another person, we also start justifying to ourselves. In a sense we are saying we don't believe we are entitled to something and the other person will quickly pick this up. This leaves them wondering if we really do need what we are asking for. So we need to stop justifying to ourselves and believe that we are entitled to what we need.
If you feel the other person is not listening to you, tell them. If someone is not listening to us, our natural tendency is to keep telling them or to stop telling them. If you have asked to speak to someone and are aware that they are not giving you their full attention, then tell them. Something as simple as “You don't seem to be listening to me, is it a problem for you?", should get their attention. Remember it isn't all your responsibility when you speak to someone. They have a responsibility to listen as well.
Check out that the other person has understood what you have said. Again, we often end up in difficult situations because we don't check that what we have said has been understood correctly by the other person. Ask them to tell you what you have said. They might not do it word perfect but you can check that they have understood what you have said. And if they haven't you can tell them again until they do grasp what it is you are telling them.
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Keep a record. Write down what you have said and what the other person's reply was. All too often we have conversations with people and later cannot accurately recall what was said or decided. This is a good thing to do at meetings. There is no reason why you can't write down what is going on as your own record. |
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Be prepared to listen as well. All too often we can get into situations where we are so concerned about getting our views across that we don't actually listen to the other person. So, listen to what they have to say as well. If you listen to them they are more likely to listen to you. |
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Don't be rushed into making decisions. If you are in a situation where you have to make a choice, ask for a few moments to think about it. Relax; most decisions can be delayed for a little while. Often the decisions we make in a rush and which don't feel right to us are the ones which don't work out. Ask yourself if now is the right time to make that decision. Do you need a little more time? Do you need more information? |
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Keep a balance between what you feel inside and what you are doing. As we have seen earlier, sometimes what we are feeling can take over. For example, if we are feeling angry it's all right to say we feel angry about a situation. It doesn't always help to be angry. |
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Ask for it in writing. Always ask professionals to confirm with you, in writing, any decisions that have been made when you have spoken to them. This way you will have a record of what they have said they will do. |
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Make sure you have the support you need. You don't have to deal with this all on your own. There are organisations, like Carers Advocacy, which can help and support you. If you feel that you cannot put your views across yourself then get someone else to help you, or do it on your behalf. |
And finally;
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Be persistent. Don't give up. Being your own advocate takes time and a lot of will power but in the end you will feel good about what you have done. |
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Give yourself a pat on the back. No matter the outcome give yourself credit for what you have done. As carers we don't always value or reward what we do. And we all need a pat on the back sometimes. It's what keeps us going when things are getting us down. |
A final word about being your own advocate
At its heart advocacy has two important themes, inclusion and safeguarding people's rights. Inclusion means that an individual’s views and opinions are taken into account. This does not mean that these views will always be acted upon, but it does mean that they should be listened to. Safeguarding of rights means your rights as a carer. All too often carers' views are not taken into account nor are their rights as individuals respected. It is important, when advocating for yourself to keep these things in mind.
Remember then, that being your own advocate means you have to take your rights seriously. And that means your rights to be included, listened to, and taken account of as an individual and as a carer
Self advocacy checklist
Next time you have to speak to someone, you may find it helpful to use this checklist to remind yourself of the things you need to get across.
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Who am I contacting? |
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What am I asking for? |
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How will this benefit me and/or the person I care for? |
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What else do I need to get across? |
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What did the other person say? |
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Am I satisfied with what they have said? |
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Do I need more information from them? |
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Do I need to speak to them again? |
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If I do, when will this be? |
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What has the other person agreed to do? |
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Do I need them to put this in writing? |
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Are they going to contact me again? |
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When will they do this? |
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How do I feel now? |
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What do I need to do now? |
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What is the next thing on my list to do? |
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Do I need a bit of extra support in putting my views across? |
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How will I get extra support? |
Remember, you don't have to do all this on your own. If you feel it would be helpful to talk through what you plan to say and do before you actually do it, contact your local Carer's Services, or Citizens Advice Bureau. Or why not leave a message on our discussion boards to hear what other carers experience has been.
© Princess Royal Trust 2002
