What I learned caring for someone living with a terminal illness

If you are living with a terminal illness, thinking about what care you want in the future can be difficult. But taking some time to think about this and making some decisions now can help you feel more in control and confident that everyone knows exactly what you want towards the end of life.

We’ve asked a Marie Curie volunteer for some tips on planning ahead based on their personal experience. Her husband had cancer and passed away seven years ago, and her sister, who also had cancer, died two years ago.

These tips may be helpful, or you may need to find other ways to feel more confident about the future. Everyone affected by a terminal illness is different, so it’s important to do what is best for you. 

“Start planning early” 

Marie Curie volunteer: “If you and your loved one are discussing where they would like to be cared for, it’s really important to establish exactly what their needs are if you can. For example, if they’re in pain, you should discuss where they will feel most comfortable. Could their pain be managed at home, or will they need more support? If pain isn’t an issue, talk about what your loved one wants and how you can make it possible.” 

Starting conversations early with your loved ones and doctor or nurse about where you would like to be cared for can help to make sure your wishes are met. It’s a good idea to put them down in writing so the people close to you and involved in your care have a clear understanding of what you want. This discussion and any decisions that come out of it is all part of your  advance care planning. 

“Speak to your GP if you’d like to be cared for at home” 

Marie Curie volunteer: “When you speak to your GP, find out what services are available in your area - it could be Marie Curie Nurses, Macmillan nurses or hospice nurses – and what sort of support they can provide. Also, if you’re being cared for at home or you’re caring for your loved one at home, it’s a good idea to have a palliative care professional you can turn to for advice and support when things get tough.”

If you’ve decided you’d like to be cared for at home, you should talk to your GP about what can be arranged. They’ll be able to put you in touch with a district nurse who will organise and coordinate your care. Your GP may also be able to arrange for specialist palliative care professionals to support you at home. 

“Things can change and you will not have to stick to earlier decisions” 

It’s important to remember that you can change your mind about any decisions you made about your care early on, or anything you included in your advance care plan at any time.  You shouldn’t feel pressured to stick to decisions you no longer feel comfortable with. 

“Find space to celebrate the person your loved one is” 

Marie Curie volunteer: “Despite all the pills and medicine surrounding your loved one, they are themselves to the end and it’s important to celebrate that with them. Whether they’re at home, in a hospice or hospital, you still need that time with them to remember and make space for the smallest things, like having a cup of coffee together.” 

You can read more about choosing where to be care for and planning ahead on our website.