What to consider when caring for someone with a life-limiting illness
Whether full-time or part-time, as a carer you will need to learn a lot of things. Here we provide tips on dealing with some of the issues that you may have when caring for someone who is ill.
As a carer, you will need to talk with the person you are caring for about what is happening and what they want to happen. Family and friends may want to talk with you. You will also have to talk with doctors and other health professionals.
Being able to communicate well is important. These conversations can be very difficult and emotional. Some tips for having these conversations include:
With the person
- Talk when you both have time and are not under stress or need to rush off, and give them your complete attention.
- Help them to retain control, ask if they want you to come with them to appointments.
- Sometimes films or books can be a good way to start conversations, for example: 'You know in that film …… where…, well that is what we are facing here'.
With Health Professionals
- Write down any questions you have and take it to appointments or meetings.
- Remember there are no ‘silly’ questions.
- Write down what they say.
- Ask them to explain anything you do not understand.
It is normal to experience intense feelings when someone close to you has a life-limiting illness. It can be a very confusing time. It may present you with many challenges. It is natural that you may start to grieve your loss even before the person has died. This may cause you to become quite numb.
- You may also feel extremely or unusually vulnerable or emotional.
- You may feel a sense of helplessness at not being able to make it better. These feelings are quite natural and normal.
- Family and friends often want to be around. They may find their feelings and emotions overwhelming. They may turn to you for emotional support. Their needs may not be something that you can deal with. This is especially true if you are focused on the caring role.
- You may want to share your feelings with family and friends. This may provide relief and a sense of calm. There are also times when this may not be true.
The depth of emotion aroused in these situations can make you seek different ways of coping. You may find periods of silence and reflection important. Music may soothe and calm. You might find a great need to be close to those you love or prefer to withdraw into yourself. You may also find physical work or exercise provides an outlet. You may also not be able to face what is happening and want to escape.
There is no right or wrong answer, only what is right for each person. All of these responses are normal and natural.
Family conflict in caring
Caring for someone who is dying can be complex. You may be a family member who has taken on this role. You could be a friend or a neighbour who is helping out but may feel like part of the family.
This may not be well accepted by the family. They may not realise how much you do for the person who is ill.
Families do not always get on well together. There are many reasons for this. Sometimes there may have been unresolved problems for years. Working with a counsellor can help.
Sometimes family members disagree with care directives or decisions. This can be hard if they are not directly involved but want to give advice. Sometimes this is a bigger communication problem within the family. Families are not always close. If this is happening to you, talk to a health professional about a family meeting. This can help to get everyone together to talk about what is happening.
If you cannot continue in the caring role
As a carer you look after someone who is ill. This is a demanding role to take on. You could do this for a short time or for many years. Taking regular breaks from caring and looking after yourself is vital. It will help you to carry on caring.
There may come a time though when you are not able to continue to do this. This could be because you have become unwell or cannot cope physically or emotionally.
You may feel distress or guilt at having to say that you cannot cope. You may find it hard to hand over to someone else. You may have promised the person who is ill that you would always look after them. This is not always possible though. Try not to blame yourself.
You may also feel a sense of relief. Caring can be a burden as well as a blessing. This is ok as well. There is no right or wrong way to feel about giving up this role.
Page created 05 November 2021
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