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. If you ever need emotional support, you can ring The Samaritans on 0345 90 90 90.
Coping with feelings
This part looks at some ways of dealing with the most common emotions associated with caring, including:
- identifying what it is you find
- talking it over with someone you trust
- getting counselling
- using relaxation techniques
- thinking about giving up caring.
- Identifying what it is you find stressful
Try to find a few quiet moments to think about what it is that you find stressful. You might like to write down a list of the main causes. 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 CNA’s 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 from the government or a charity.
- 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(0191 213 0050). Ring the CNA’s 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;
- feel they will be betraying the person they are caring for if they talk about their problems to anyone else
- are worried about breaking down and crying in front of someone else;
- are not used to discussing their feelings with other people;
- can’t see the point.
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
- a close friend - they may know you well enough to give you some honest advice
- another carer - they may have experienced something very similar themselves
- a GP or social worker - they may be very familiar with your situation and the needs of the person you are caring for
- The Samaritans - you can talk to a trained volunteer in confidence about anything. Phone 0345 90 90 90 any time, day or night. Your call will be charged at local rates.
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 CNA.
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.
Contact a voluntary or charitable agency
There are lots of groups which offer counselling free of charge or for a small fee. The best known is probably Relate (counselling for relationship problems), but there are many others too, specialising in different kinds of counselling. Ask your local Citizen’s Advice Bureau for information about local groups or ring CNA’s CarersLine for information about national organisations which might offer counselling locally.
Pay a private counsellor
There are private counsellors all over the UK, some working within groups and others working independently. You can get a list of private counsellors in your area by sending an A5 stamped addressed envelope to:
British Association for Counselling,
1 Regent Place,
Check what the fees are before you book anything as private counselling can be very expensive.
Ring the Samaritans
You can talk to a trained volunteer in confidence about anything.
Phone 0345 90 90 90 any time day or night.
Your call will be charged at local rates.
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:
- relaxation techniques
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:
Sit or lie comfortably on the floor (or in bed or the bath if it’s the only time you get to yourself).
Breathe in, count one, then breathe out, counting one. Breathe in, count one, two, then breathe out, counting one, two.
Keep going slowly and regularly until you get to five (or even ten if you can manage it).
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 section 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.
The work of the Samaritans
In the United Kingdom and the Republic of Ireland there are over 200 branches and 22,000 volunteers responding to four million contacts a year. The Samaritans’ aims are:
- to offer emotional support that is always easily available, consistent and of a high standard to everyone passing through a period of personal crisis and at risk of dying by suicide;
- to ensure that all people who are feeling suicidal or are most likely to consider suicide know about the emotional support offered by The Samaritans;
- to ensure Samaritan support is always available at any hour of the day or night.
Volunteers support those going through a period of crisis, the despairing and the suicidal by offering their emotional support, their listening and their time.
Available by telephone 24 hours a day, 365 days a year.
Accessible by phone, personal visit during daytime and evening, by letter, textphone and e-mail.
Nothing a caller tells The Samaritans will ever be communicated to anyone outside The Samaritans unless permission to do so is freely given by the caller.
Callers do not have to say who or where they are and are free to break contact at any time. The Samaritans do not have the telephone equipment that would identify a caller.
Callers retain the right to make their own decisions. Samaritan volunteers do not make judgements, give advice or promote their own opinions and beliefs.
No charge is made for the befriending which The Samaritans offer.
How to contact the Samaritans
Twenty-four hours a day, every day of the year. The local branch number is inside the front cover of the phone book and is also listed under ‘S’.
The national number is 0345 90 90 90 or 1850 60 90 90 (Republic of Ireland)
Branches are normally open to visitors during the daytime and evening. The address is in the phone book. Approximately 60 per cent of branches have facilities to welcome people with disabilities.
The Samaritans is pleased to receive letters from those who prefer to communicate in this way.
Write to PO Box 9090, Slough SL1 4UU
An electronic way of communication by computer to computer using the e-mail network. Contact can be made by using one of the following addresses:
firstname.lastname@example.org - for callers who are happy for their identity to be known
email@example.com - for callers who wish to remain anonymous
This is a telephonic method which enables people with hearing or speech impairments to communicate effectively by typing their message, which is then transmitted to a receiving textphone.
Many branches have installed a textphone. The ear symbol in the phone book publicises this facility.
As well as those branches with textphones there are two national textphone numbers:
North 01204 31122 South 0181 780 2521
This is a method of communication which enables hearing- or speech-impaired people to make contact through a Typetalk operator. The caller types the message on to their textphone and the operator speaks the words to The Samaritan volunteer who receives the call on an ordinary phone. The volunteer’s response is heard by the operator and typed back to the caller’s textphone.
Third party referral
The Samaritans will respond sensitively to requests from those concerned about people in crisis and, whenever possible, will make contact. Being aware of this facility might be particularly valuable to someone in contact with a person who gives them cause for serious concern.
Carers National Association
If you’re looking after a sick, disabled or elderly relative or friend, you’ll find Carers National Association (CNA) can help you.
Giving you the information you need
We believe that all carers have a right to the best information possible. That’s why our CarersLine is staffed by leading experts in carers’ rights. They answer over 20,000 enquiries a year. A quarter of these calls are from carers who learn about benefits they didn’t even know they were entitled to.
Offering you the support you want
Other carers are in a good position to offer information and support. Carers National Association can put you in touch with your nearest CNA branch or local support group. We also have offices in different parts of the UK which can tell you about the carer support services in your area.
Working to give you a better deal
Perhaps you want to know what is being done by Carers National Association to win a better deal for carers. Here at CNA we campaign on behalf of all carers. And we’ve had our successes too. As recently as 1996 CNA campaigned for the Carers Act which gave carers legal recognition for the first time. We’re now working to make sure it brings real improvements to carers’ lives. And we know much more needs to be done.
By joining Carers National Association you will be joining the carers’ movement and helping us to speak with a stronger voice.