Supporting Carers
People who provide unpaid care for a terminally ill friend or family member will face many of the same difficulties and emotions that other types of carers have to deal with. In addition, they may have specific needs, such as bereavement and pre-bereavement support. Their caring role will eventually come to an end and they may experience feelings of emptiness or being at a loss. Caring for a terminally ill person can also be unpredictable - and unsettling for the carer in terms of their caring duties, their work, and their life outside of caring.
Many carers of the terminally ill experience a short, but intense, period of caring. As a result they may not have time to find out about or access support. This is why it is important for health and social care professionals to proactively support these carers - when someone is diagnosed with a terminal illness, or accesses palliative care, ask them who helps look after them at home; or talk to family members about their own needs.
The first steps
The first major hurdle for most carers is the acceptance that they are now a carer. Many will be upset at this, seeing it as the beginning of the 'final journey' of the person they are caring for. If there is resistance, let them 'sleep on it' - do not force acceptance straightaway.
Emphasise that this isn't a 'replacement' role - they are still wives, husbands, parents, children, friends etc. But the balance of the relationship will change, as they become responsible for someone else's wellbeing.
The things people are most often concerned about when they first face the reality of becoming a carer are:
- How will I manage?
- Who can I turn to, especially if things go wrong at night or at the weekend?
- What happens next?
- Anxieties about giving medications.
New carers often need reassurance that no question is too trivial - anything that concerns them is reason enough to ask. Ask them to tell you what their practical worries are, and let them know where they can go to for help and advice.
Many areas of concern for carers are sensitive, such as money worris or problems at work. You can download and photocopy the relevant sections from the Carers Guide, to hand out to carers. If you know of any other books that might help, consider having a copy available for loan or to show to carers.
Young Carers under the age of 18 may need particular guidance.