Feelings and emotions when caring for someone with cancer
Although everyone’s experience is different, there are some feelings and emotions which most carers say they have felt at some point. We have discussed some of these below. You may also find it helpful to read our section on the emotional effects of cancer.
Many carers find it very rewarding and fulfilling to look after someone who is important to them. Some people find that coming to terms with advanced cancer together brings them closer. You may find that you can talk to each other in a way you haven’t been able to before, or for many years. Sharing your feelings openly and honestly can help support you both through your anxieties, sadness, fear and uncertainty.
However, looking after someone full-time is not always easy or satisfying. Many carers lie awake at night worrying about what’s going to happen in the future and how they’re going to cope. Some people feel frustrated or overburdened because the person they are caring for can no longer share responsibility with them for running a home or looking after a family.
Nearly everyone feels angry and resentful at some point.
Worst of all is feeling guilty about having these kinds of emotions - that in some way, if you have negative thoughts like these, it means that you don’t love the person you are caring for enough, or that you are a selfish person. On top of all this, most carers are often very tired and short of sleep.
The main thing to remember is that these feelings are normal. You’re probably going through one of the most stressful periods of your life and it’s natural to have strong emotions at times. It’s okay to ask for help in dealing with these emotions, whether from your family and friends, from a counsellor, or one of the health professionals you are in contact with. Some support organisations can help you to find someone to talk to.
'We have good days and bad days. I've learned to take each day as it comes. Sometimes he's in pain or hasn't slept much and he gets quite irritated with me if I'm a bit clumsy lifting him or the food doesn't turn out quite right. It's difficult not to feel hurt when you're doing so much for him all the time.'
Most carers have times when they feel resentful. It’s natural to feel like this if you have hardly any time for yourself to do the things you used to do and enjoy. The person you’re caring for may sometimes be moody, self-centred and withdrawn. They may have become more irritable since they became ill, especially if they’re in pain. They may not always seem to appreciate what you’re doing for them. Many people take out their fear, anxiety or frustration on the person closest to them.
If this is happening to you, not surprisingly you may sometimes feel unwanted and resentful. Trying to talk about this may help, perhaps when things are going well between you.
It may help to talk about your feelings with someone else. If you brood over feelings of resentment, they tend to become magnified. Give yourselves a chance to try to understand how the other person feels and you may be able to avoid your anger and irritation building into an argument.
'I lie awake at night panicking. I know she's often awake at night too, and I wonder what's going through her mind. But in the day, there's so much to do, I don't have time to think about it. She does though.'
Cancer can be very frightening. You may feel that you don’t know enough about it and that you don’t have any control over what’s happening or what’s going to happen. The person you’re caring for is probably afraid too, but you may both be hiding what you really feel from each other to avoid making each other more anxious.
It can help to find a sympathetic person to talk to about your fears and worries. Just talking and getting your concerns out into the open might be enough. You may then find that you’re better able to help your relative or friend talk about their fears. Alternatively, they may prefer to talk to someone outside of their immediate circle of friends.
‘Some days I feel terrible. I can't even go into his room in case I break down in front of him. I feel I should be stronger for him, but I can't be.'
You’re bound to have times when you feel low, usually when you are very tired or anxious, or the person you’re caring for is unhappy or needs a lot of help. Usually, these low times don’t last long and within a few days you’ll start to cope with your normal routine again. However, if you find that you’re always feeling low or that you often feel quite desperate or panic-stricken, you could be depressed. Don’t feel you’re letting yourself down if you admit to feeling depressed. No one is going to think any worse of you.
Your family and friends may not realise how much strain you are under. Talk to them if you can, and ask them if they can help you, for example by giving you a few hours off every few days so that you can have some time to yourself.
If you feel that you can’t lift yourself out of your depression, it may help to talk to your GP. They may refer you to a counsellor for support or give you some antidepressants.
‘Sometimes I feel so angry − not with anyone in particular, just with the situation we are in. I keep thinking, why me?'
Many people say that after they’ve got over the initial shock of being told that someone close to them has advanced cancer, they start to feel very bitter or angry. It may seem very unfair that illness has interrupted all your plans.
You may have to cope with feelings of anger not just towards the illness but also towards the person you’re caring for. You might find that you start to lose your temper with them, especially if they have become irritable or depressed. Feeling angry with each other like this is to be expected and there’s no reason to feel guilty about it. However, it’s important to find a way of dealing with your anger before it builds up too much. It might help if you can talk about it to a relative, good friend, or someone else who has been through the same experience, such as a member of a local carers’ group. Some people find that writing about their anger helps them to release some of the emotion.
Carers UK will be able to give you more information about carers' support groups in your area.
'Both of us had very full lives before this. It's difficult not to be able to go out much or see other people. We've had a district nurse coming in every other day and I've got to know her quite well. Sometimes she stays for a cup of coffee and it's really helped me to talk to her about all the feelings I've been bottling up.'
Caring for someone can be very frustrating. Being cared for can be frustrating too. Between you, you need to work out a way of getting along in which you both feel that you have some control over your own lives. As the carer, you need to make sure that you have some time entirely to yourself when you can do something that you enjoy and find satisfying.
If the person you’re caring for is also very frustrated, try to think of ways in which they can have some independence and freedom. If they are bed-bound, could you arrange for them to have a phone within easy reach? Could you buy, hire or borrow a television with a remote control so that they can change channels without having to call for your help? Could they help with some of the things you currently do? Most importantly, make sure that they are fully involved in decisions about their treatment and care.
'I sometimes wonder if the world is still out there. People ring me and call in from time to time, but some days I feel so cut off.'
If you’re at home looking after someone full-time, you may not have much opportunity to go out and socialise. It’s often easier to stay in all the time, especially if the person you are caring for is very ill and needs a lot of attention. You might begin to believe that only you can do the caring required. It’s very important, though, that you do see other people, even if it’s only once or twice a week. Once you get used to not seeing other people,
it becomes more and more difficult to make contact. Also, other people may eventually stop approaching you if you’re always rejecting their offers of help or company.
If you find you are losing touch with other people, try to make the effort to ring one of your relatives or friends and tell them you’re lonely and that you need to see someone. You might be surprised by how much support and company they can offer you. If that solution doesn’t feel right for you, perhaps you could contact a local carers’ or cancer support group. Even if you can’t go to their meetings, you might find it helpful to talk on the telephone with someone from a local group or share your feelings in an online community. Sharing your experiences with other people in the same situation can really help to reduce feelings of isolation or loneliness.
Macmillan has an online community where you can share your thoughts and experiences with other people in a similar situation.
'Whatever I do, I never feel I've done enough. It's not that my mother criticises or complains, I just always end up feeling guilty.'
Most of us have feelings of guilt. We all sometimes feel that we could have done more or that something we did was wrong. Sometimes, however, these feelings can get out of proportion and you may forget about how much you have achieved; your self-esteem can go right down as you start to believe that you can’t do anything right. The person you are caring for may also feel guilty, perhaps about how much disruption and stress the illness is causing to the household and to you.