Christmas with a terminal illness

Many of us feel pressure to have the perfect Christmas, whatever stage of life we’re at. But the pressure to get it “right” can feel even stronger if this is the last one you may have.

Think about what is important to you and those around you. It’s often the simplest things that make the difference.

And be realistic. When does Christmas ever go perfectly? Some years problems are burned roast potatoes; this year might be something a bit more complicated or unexpected. Be kind to yourself and those around you if things go a bit wrong. And don’t be afraid to laugh.

You might find it helpful to speak to your care team in advance if you are unsure what is realistic and achievable for you, and those you choose to spend time with.

Everyone is different. What works for someone else may not be right for you. Put aside traditions, expectations or what others are doing for a moment. And think about how you want to spend this Christmas. It could be:

• Staying well, not getting too tired
• Managing pain or other symptoms
• Being in the comfort of your home
• Seeing people or pets
• Activities and traditions such as church services, family or community celebrations, gift giving, Christmas lights
• Food and drink
• Feeling special, like wearing something nice or getting your hair done

At Christmas there are often complicated plans, involving many people with different expectations about what they want to happen.

Open communication can help manage these stresses by making sure everyone knows what to expect. It also makes it more likely that worries or misunderstandings can be talked about and sorted out before they get worse and cause disagreements.

But death brings up strong emotions. This can make it hard to say what you mean and for people close to you to really listen.

Support from organisations like Relate may be helpful. They have online advice and in-person and online counselling.

These articles may also be helpful:

• Talking about death and dying (Hospice UK)
• How to cope with family conflict at Christmas (Counselling Direct)
• Managing family conflict at Christmas (Care for the family)

It is ok to turn down invitations - to stay home, in hospital or at a hospice if that is what you decide you want to do. We do see people make this choice. Your comfort is really important.

But if you would like to spend Christmas with others, be honest about this to the people close to you. Even if it means doing something a bit different or making a few extra preparations, most people will be really keen to help you have the last Christmas you want.

Being open with children about difficult subjects like death, helps build and protect trusting relationships. These relationships will help them cope with the difficult emotions they feel when someone close to them is dying. It may also help them to grieve when the time comes.

If you have children in your life, ask them how they’d like to spend time with you during your last Christmas. We know this may be a hard conversation to have. You may find our information on telling your child when someone is dying helpful.

When you’re at the end of your life there are lots of ways your experience of eating and drinking can change. But you can still enjoy your favourite Christmas treat.

• Consider asking for a smaller plate if you don't have much of an appetite.
• Don’t assume you can’t have alcohol but do check with your care team. They can offer advice on how it might affect you differently due to medication or symptoms.
• Ask for cold food, or to arrive after the cooking is done, if strong smells are making you feel unwell.

If you’ve decided what's important to you, think about how to make it happen. This might involve talking to those close to you, such as family or healthcare professionals, and asking for help.

Here are some ideas:

Give yourself lots of time to rest so you’ll have energy to do the things you most want to do.

If you’d like to get involved with community events, for example if you don't have family and friends to spend Christmas with, think about groups or organisations that might be able to help. Try and do this well in advance, as sometimes you’ll need to go through a referral process or apply. This information from Hospice UK on Concerns when dying alone might give you some ideas of who to contact.

Your palliative care team might be able to offer advice on coping with digestive symptoms, fatigue or pain that come from a busy day or special foods and drinks.

It is hard to know how you might be feeling in the future. When you're approaching the end of your life, how well you feel might change quickly from one day to the next. It might be helpful to think about what you'd like to happen if you’re not able to take part in plans you have made.

Some treatments have difficult side effects, so people who know they are dying choose to miss them to better enjoy special occasions like Christmas.  Talk to your care team and think very carefully before you decide to do this.

If you are getting help from professionals at your home, you may want to ask that carers not come or see if they can visit at different times. It might not always be possible, but it’s worth asking.

Of course it happens. People go into hospital on Christmas Day, and sometimes they die on Christmas day. We can’t control when we die.

It might be helpful to think about what it is that worries you about the idea of dying on Christmas Day.

For example:

• Not being able to get the medical help you need
• Disrupting your family’s Christmas dinner
• Something else

It can be helpful to talk to someone you trust, like a healthcare professional, about these worries. Making a plan together might settle some of your fears.

Remember that at the end of our lives, how well we feel can change quickly. It's ok to put odd making the decision until much later on.

Some people at the end of their lives decide to bring Christmas forward. This might be because their health is getting worse, and they are worried they won't be well enough on the day. Or it might be because they are expected to die very soon. We know lots of people do this for other special days like birthdays and weddings too.

We've also seen people who decide to pretend Christmas isn’t happening. And that’s ok too. Your health, comfort and mental wellbeing is more important than the date on the calendar.

Some people at the end of their lives have told us they find it comforting to plan something for the people close to them for Christmases in the future.

For example,

• You might like to write comforting messages to loved ones who are facing Christmas without you next year.
• You might like to buy small gifts for children who will be missing you next year.
• You could put together a memory box of important Christmas memories; photos, recipes or songs you love. Loved ones may find this comforting next year when you’re no longer there.
• Create a new tradition, like a new decoration for the tree, so your presence can be felt, and you will live on next Christmas and beyond.