What is it like to be a carer?

It can be a very rewarding role and enrich your relationship with them, but it can also be intensely emotional. Sometimes you might feel worried or anxious, perhaps about your friend or relative’s health, or about money or other things in your life affected by your caring role.

You might feel angry, that your friend or relative is going before their time, or for reasons that you can’t explain. You might feel exhausted, perhaps because they need help during the night, or because you find that you have trouble sleeping, or simply from the emotion of it all. You might feel as if you are already starting to grieve as they become more unwell and are no longer the person they used to be.

You may feel very lonely, and as if you can’t share these emotions, because other people won’t understand. But most people who are caring for someone who is dying experience these feelings, as well as many others. They are all a completely normal response to what is happening. The important thing is to get the support that you need, that will help you to cope.

Often, carers become so focused on looking after the person who is dying, that they struggle to make time for themselves. If you feel like this, you may not be taking the care of yourself that you need to – like going to a doctors appointment, or making time to see a friend. But it is vital that you look after yourself, both physically and mentally. That is the best way to make sure you can provide the care and support that your friend or relative needs.

As a carer you are likely to be involved in lots of different activities, some of which you did before, and some of which are new. It can include things you do around the house like cooking and cleaning; helping the person you are caring for with daily activities like washing, dressing and using the toilet; and giving them emotional support. Often your role as a carer develops and changes as the person you are caring for becomes more unwell.

As your caring role grows, you may feel that your relationship with the person you are caring for is changing, as you spend more of your time together caring for them. It is important for both of you that you don’t completely lose your old relationship.

Try to find ways you can continue to do the things you used to enjoy doing together. You may also feel uncomfortable with some aspects of your friend or relative’s physical and personal care, such as bathing your dad, or helping your partner go to the loo. There is no need for you or the person you are caring for to feel guilty or embarrassed if there are some things that you prefer not to do. It is important that you are able to provide the care that you want to and you both feel comfortable with, and you can get support for other aspects of their care.

Talking about the aspects of care that you are struggling with can be a difficult conversation to have.

Some of the things that might help you to have it are:

• Having the conversation together with your friend or relative and someone else, such as a health professional or a carer support worker.
• Starting the conversation by talking about less personal elements of their care.
• Talking about it in the context of an emergency plan – how would different aspects of their care be provided if you weren’t able to for some reason?
• Talking about it as part of your conversation with the health professional when you are talking about advance care planning.

When you are talking about the support that you need, make sure that it is also the support that you want, so you can continue to do the activities you feel comfortable with – for example cooking and cleaning – but get support with the activities that you struggle with.

Don’t be afraid to ask for help with the day to day tasks to free up time you can spend creating special memories.