Having a life-limiting illness changes a person’s life. Feelings can change from day to day, hour to hour and even minute to minute. People may also experience changes in family roles and relationships, and may have to deal with the prospect of giving up work and dealing with changes to their financial independence.
It is common for people to feel denial, anger, fear, depression and even guilt. All these feelings are normal. At times you may be angry, afraid or worried and other times feel sad, guilty or lonely. At times you may not really believe the person has a terminal illness because they have a strong sense of hope for the future.
Supporting and caring for someone with a life-limiting illness may be too much for you to handle by yourself. Try to talk to people about your feelings and how you are coping. Talking to others about your feelings can help you to deal with your emotions and the impact the illness is having on your life. You may find it easier to talk to a close friend rather than someone in the family because this means you can be yourself and express yourself more easily.
Help is available so please let someone know if your feelings are stopping you doing the things you want to do.
Providing care for someone who is ill can place great physical and emotional demands on you and it is important that you take time out to recharge – spend time with your friends, have some gentle exercise or have some time alone if you feel tired or overwhelmed.
Remember that you are human and you can only provide what you can. Try to get the most out of your day and if you have any spare time to yourself, think about what you would like to do.
Continue working if this is possible – it's a good distraction and can provide a sense of continuity in your life.
Feeling guilty is common. The person you are caring for could be and is most likely to feel the same. Talk to each other about this and try to share with family and friends. Never feel guilty about having time to yourself.
Share your worries with the person you are caring for. If you cannot talk to the person you are caring for, talk to a professional. They may be able to help and put you in touch with the right person who can help.
Everyone fears the unknown and caring for someone with a life-limiting illness can be scary. Try to learn about what is frightening you – the easier it will be to cope/deal with what your fears are. Ask questions – knowing the facts will help. Religious and spiritual leaders may be a good source of comfort and support.
You may feel a need to exert your anger. This is normal. Find ways to express these feelings as they arise because if you don’t these feelings may intensify. A hobby or a form of sport can help to release your anger and frustration.
The person you are caring for may take their anger and frustration out on you. Try not to feel responsible. Some cancers can have an affect on the person’s personality and lead to them having sudden fits of anger. Talk to your doctor, District Nurse or heath professional.
You may find it helpful speaking to a friend, counsellor or someone at a support group.
Write things down. Even with members of your family and close friends it can be difficult to fully express your feelings.
Rest is very important and short naps can help revive your energy levels. Try to relax to music – an hour of deep relaxation is said to make you feel as if you had a long sleep.
You can be prone or at risk to infections so try and ensure you are getting enough vitamins by either eating your five a day of fruit and vegetables or take supplements.
Consider having the flu jab. Carers are automatically entitled to one free. Ask you GP. Do not neglect your own health – if you get ill see your doctor as soon as possible.
Avoiding the situation can stop you from doing things that you need to know and do. Denial is a coping mechanism that both patient and carer will often use when the person you are caring for is diagnosed with terminal cancer.
This can affect you and your family and friends too. If you are in denial don’t blame yourself or feel that you must do something about your feelings.
Consider talking to someone or your local hospice.
Just as you have strong feelings and may struggle at times to cope with your own emotions; other people around you will have similar feelings and emotions and may look to you to support them as well. The person you are caring for is very likely to have mood swings and have good and bad days. They may even try to hide their feelings from you or behave in a way that you do not expect.
You may find they change from not wanting to upset you by talking about their illness to blaming you for their illness. Other times they may act as if nothing is bothering them. This can be very distressing for you and may affect your relationship with the person you are caring for.
If you are struggling to cope with these varying emotions it is important that you talk to someone - a good friend, support group, your own doctor or the nurse or doctor caring for the person who is ill. Health professionals can help you so it is important for you to talk to them about how you are feeling.
Be honest and talk about all your feelings, not just the positive ones. ‘Bad days’ are to be expected so you don’t need to pretend to be cheerful when you’re not, as this can stop you and the person who is ill talking about the things that are important to you both.
A guide to the people involved in the care of your loved one
Watch our video tutorials designed to help carers
Key issues to consider if you have a life-limiting illness
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