Support for Families During Palliative and End of Life Care

When someone you love is receiving palliative or end-of-life care, it can be easy for everything to become about them.

But you matter too.

Caring for someone who is seriously ill can be physically and emotionally exhausting.

The care team can support families too

The people caring for your relative should also help you understand:

What is happening
Why treatments may have changed
What you might expect
How you can help
Who to contact if you are worried
What additional support may be available

You are allowed to ask questions, even if you have asked them before.

Tell someone when you are struggling

If you are finding things difficult, speak to a nurse, carer, GP or specialist palliative care team.

You do not have to wait until you reach breaking point.

“I’m finding this difficult and I don’t know what I need.”
That is enough to start the conversation.

The practical impact

End-of-life care can affect almost every part of family life.

Sleep may become disrupted
Work may become difficult
There may be financial pressures
Children and other family members may need support
Travel may become difficult
Caring responsibilities can take over everyday life
Uncertainty can be exhausting

Accept help where it is offered.

It is okay to take a break

You may feel guilty about leaving your relative’s side.

Taking a break does not mean that you love them any less.

If care staff are present, it may be possible to step away for a short time. Eat something. Get some fresh air. Have a shower. Spend time with your children. Sleep if you can.

You do not need to be beside your relative every minute.

If you need a longer break from caring, Carentis has information about taking a break from caring and respite care.

Your feelings may change

You may experience grief before someone dies. You may feel angry one moment and calm the next. You may feel frightened, relieved, guilty, numb or completely overwhelmed.

There is no correct way to feel.

You are not alone

Emotional, practical, spiritual and bereavement support may be available through the healthcare team, hospice, care provider, GP or local services.

Asking for help is not a failure.

Your relative is receiving care, but you are also a person going through something difficult. Your questions, worries and wellbeing matter too.

You don’t have to do this alone.