Local support and services for carers
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However much you like or love the person you care for, the emotional and physical demands of caring can be extremely stressful, especially if the person you are caring for is elderly, or has dementia, a chronic or terminal illness or a serious disability. If you also live with the person you care for you may feel you have no time to relax and unwind and that your feelings of anger, frustration or resentment sometimes get out of control.
This page looks at some of the feelings carers have when they are under stress and suggests ways of dealing with them, including advice on taking a break, getting financial, practical and emotional support, and counselling.
Everyone reacts differently to the stresses of caring, but when carers get together they often find that they share many of the same feelings. It can be very reassuring to talk to other carers and discover that your feelings are quite ‘normal’ for your situation. Some of the most common feelings carers describe are:
* frustration * resentment * guilt * anger
Different ways of dealing with feelings like these are outlined on the following pages.
Every carer knows how frustrating it can be to look after someone who is ill or disabled. The demands of the daily routine of caring can leave you feeling constantly thwarted.
For example, you might not be able to go out when you want to or to invite other people to visit you. The person you are caring for may not always seem very grateful or acknowledge all the help you give them. If their health is gradually deteriorating you may find their increasing dependence on you frustrating and exasperating.
The person you are caring for may be feeling frustrated too, of course. They may have led a full and independent life before illness or disability struck. Between you, you need to find ways in which you can both feel as though you have some control over your lives.
Perhaps you could arrange a regular break from caring or find a way in which you can lead slightly more separate lives. The person you are caring for may need to be allowed more independence or freedom, perhaps through extra outside help or additional aids or adaptations .
Resentment can be linked closely with frustration. It’s easy to feel resentful if all your time and energy seem to be taken up by someone else, especially if they do not seem to appreciate your help. People who are ill or in pain are not always easy to live with and this might make you feel even more resentful. Often you will have to cope with the conflicting emotions of love and resentment at the same time. It’s important not to let your resentment build up.
Most of us have feelings of guilt at times. We might feel that we have let someone down or not done as much as we could have done for them. Feelings of guilt can be especially strong in carers who often feel that however much they do, it never seems enough.
This can be particularly difficult for people who look after one or both of their parents. You may feel that you ‘owe’ something to your parents that you can never pay back properly. Try not to let any feelings of guilt get out of proportion by reminding yourself about what you have done that was good and positive for the person you are caring for.
For example, you might have washed an elderly relative’s hair once a week for the past five years. You might wish you had done more for her but that one small weekly commitment might have made all the difference to her quality of life.
Again, the best advice is to admit to your feelings of guilt and to try to get them out into the open. A close friend or family member might be able to reassure you, or perhaps someone outside the situation could help you get your feelings back into perspective.
You may feel very angry about your situation as a carer. You may have had to take on the role of caring unwillingly or at a difficult time of your life, for example, when you had small children to look after as well, or just as your career was about to take off, or just as you retired.
Some carers find that their feelings of anger about the situation begin to be directed towards the person they are caring for rather than at the situation itself. This can lead to conflict and tension. Although some difficult days are to be expected – especially if you and the person you are caring for are with each other most of the time and perhaps not getting enough sleep – you do need to find a way of coping with your feelings of anger before they become impossible to control.
If you can, talk with the person you are caring for about how you feel when you are angry and the things that make you feel especially angry. They might be feeling angry with you too and between you you might be able to establish ways in which you can avoid clashes. If you can’t talk together, try to find someone else outside the situation to talk to.
Illness or disability can be frightening, especially if you feel you have no control over what’s happening. You might be afraid of the future, perhaps you don’t know how the person’s illness or disability will progress or you are worried that you will be left alone when the person you are caring for dies.
Feelings of fear can keep you awake at night, when they often seem to magnify and become insurmountable in your mind. Remember that you can telephone The Samaritans during the night as well as during the day. Try to get your feelings of fear out into the open in the daytime by talking about them with someone you can trust. Often just talking is enough to make you feel better.
It’s easy to become isolated if you are caring for someone, especially if the person you are caring for needs a lot of attention. Socialising might be right at the bottom of your list of priorities when you are having to cope with so many other apparently more urgent demands on your time.
It might seem easier to stay in all the time and to avoid making any arrangements to see anyone else. But in the long term you may regret it. Loneliness is one of the biggest problems for carers. However difficult it may seem, try to make sure you see someone other than the person you are caring for at least once or twice a week.
It could be someone in your family, an old friend, or perhaps someone from a local self-help or carers’ group. You might be surprised by the difference regular contact with people outside your situation can make to your life.
Most carers have bad days when they feel sad, lonely or anxious. This is especially likely if the person you are caring for demands a lot of attention or you are having interrupted nights. Most people find that the bad times don’t last for ever and that they are able to pick themselves up again after a few days.
But if any of the feelings we have described above get out of control they can lead to depression. If you find that you often feel desperate or anxious, and that you don’t seem to be able to get back on an even keel, you need to get some help. It’s important not to struggle on to the point where you are unable to continue caring because you are too depressed.
There’s nothing to be ashamed of – you are only feeling as you do because of your situation. Find someone you can talk to about how you feel. If you can’t talk to family members or friends, get some professional help, perhaps from your GP or a counsellor.
Coping with feelings
This section looks at some ways of dealing with the most common emotions associated with caring, including:
* identifying what it is you find stressful
Identifying what it is you find stressful
Or it might help to think about what you would say to another carer if they asked for your advice, it’s often easier to see solutions to other people’s problems than to your own.
Once you have identified what it is you find stressful, try to think of any practical things you can do to overcome the causes. For example:
* If you are not having enough time to yourself, try to think of ways in which you could have a regular or occasional break. Family or friends might be willing to take over from you for a few hours or you might be able to get a ‘sitter’ or respite care.
* If you are worried about money, make sure you are getting all the benefits you are entitled to. The Carers UK CarersLine or a local Citizen’s Advice Bureau can do a complete benefits check for you. If you are getting all the benefits you are entitled to, you might be able to get extra financial help from other sources such as charities or voluntary organisations. For example, if you are spending a lot of money on going to the launderette, you might be able to get a grant for a washing machine.
* If you are caring for someone at home and there are practical difficulties which are putting you under stress, you might be able to get some aids, equipment or adaptations to make life easier. Some of these might be available free of charge or for a small fee from your local authority. Contact your local authority and ask for an assessment for the person you are caring for.
* If there is one thing you are finding especially difficult to cope with, there might be a specific organisation to help you deal with it. For example, if the person you are caring for is incontinent, you could get advice and support from the Continence Foundation (020 7831 9831). Ring the Carers UK CarersLine to find out if there is an organisation which can help you.
Talking it over
One of the best ways of dealing with stress is to talk about it. However, many people find this difficult, perhaps because they:
* think they are letting themselves down if they admit that they are under stress
But if you don’t talk about how you feel, your feelings can easily get out of proportion. It’s surprising how much it can help just to have shared how you feel with someone.
Who you talk to will depend on your situation. Try to choose someone you know you can trust and who will listen sympathetically. This is not the time to be told to ‘pull your socks up’. You need encouragement and support. For example, you might decide to talk to:
* a member of your family – they may understand your situation best
If you don’t know any other carers, think about joining a local carers’ group or a self-help group. You can find out more from your local carers organisation.
If you find it difficult to talk about your feelings with someone you know, you might like to try counselling. Talking to a trained counsellor may help you explore aspects of your situation more openly and honestly than you can with people you know.
A counsellor will not be involved in your situation and will be able to guarantee that whatever you say will be private and confidential. A counsellor will not judge you or tell you what to do but will help you look at your life and your relationships in a way that you might not have done before, so that you can see things more clearly and respond differently to your situation.
Having counselling is not a sign of failure, it’s a first positive step towards getting help and feeling better about yourself and your life.
If you think that counselling would help you, you can:
· Ask your GP. GPs can sometimes provide counselling themselves or they can refer patients for counselling on the NHS.
Using relaxation techniques
Our reactions to stress are rooted in a primitive response to physical attack, when our bodies needed to prepare us for ‘flight or fight’. Unfortunately, our bodies respond to modern stress in the same way.
A long period of stress can result in exhaustion, migraines, aches and pains, digestive problems and a low resistance to infections. Constantly having these symptoms is in itself stressful and so the cycle continues.
Eventually even the most minor setback is likely to cause extreme anger or a flood of tears. When this happens, your body is giving you a warning that it can’t go on. Carers often say that they can’t slow down because of the person they care for, but if you don’t slow down, your body may do it for you by forcing you to take a rest because of a major illness.
One very important way of dealing with this stress cycle is to learn how to relax. You can do this through:
One of the good things about your body is that you can encourage it to become more relaxed. You can do this with special breathing exercises:
1 Sit or lie comfortably on the floor (or in bed or the bath if itÕs the only time you get to yourself).
The aim is to empty your mind of everything but your deep and regular breathing. Saying the numbers means that your brain can’t focus on anything else. If you find unwanted thoughts start to creep in, start breathing again at ‘one’ and try again.
With enough practice it will eventually become second nature and you will be able to relax whenever you need to. Many local colleges offer day and evening classes in relaxation techniques and relaxation activities like yoga and aromatherapy. Your local library should have details. If getting out is difficult, you might be able to arrange for a ‘sitter’ to take over from you once a week.
Vigorous physical exercise can also help you relax. The physical effort helps to unwind tight muscles with the result that your body feels more relaxed afterwards and you have a general feeling of well-being. Being fitter can also help you to cope with the physical demands of caring. Any kind of vigorous exercise will help – walking briskly, swimming, cycling or a keep fit class. Again, your local library should have details of what is available locally.
Thinking about giving up caring
If you have tried everything we have suggested in this booklet and you still feel under stress, it might be time to look again at your situation. Think very carefully about whether you can go on caring. If the honest answer is ‘no’, try not to feel that you have failed in some way. It’s better to be realistic and make good alternative arrangements than to carry on regardless until you collapse.
There may be other options which will allow you to reduce the burden of caring without giving up altogether, for example, getting additional help at home or regular respite care. Letting go of some of the practical problems of caring might give you more ‘quality time’ with the person you care for.
Alternatively, it may be time to start thinking about the possibility of residential care. You might like to contact your local authority and ask for an assessment of the needs of the person you are caring for, which can be helpful and beneficial at this difficult time.