The Journey Ahead – Tips from carers

Each person’s ‘carer journey’ will be unique to them and their family circumstances. Often carers of people with rare conditions are trying to help a family member or friend. Some people become carers after a sudden health change in someone they love. For others, it starts slowly — helping with small things like shopping or going to appointments.

Over time, you may find yourself doing more and realise you’ve become a carer as well as a parent, partner, child, or friend. Family roles, culture, and personal experiences can also shape the journey.

The carer journey describes the evolving experience of providing care to a family member or friend. While your journey is unique, here are some common experiences for carers:

• Noticing someone close to you needs help and starting to support them more than you used to.
• Taking on more tasks as caring becomes regular or more intense.
• Acknowledgement that you are a carer…which often accompanies emotional feelings such as denial or guilt.
• Building routines and finding ways to cope with complex and demanding daily needs while learning to care for yourself and others.
• Balancing caring responsibilities with looking after yourself and other members of the family or friends can be challenging to manage.
• If you work outside the home, learning how to balance work and care responsibilities.
• Long-term caring may be relentless, leading to problems with the carer’s mental or physical health – support strategies are required to manage times of high stress.
• Recognising when you are stressed or exhausted and reaching out for support.
• Understanding that your caring role may or may not change — for example, if the person goes into hospital or uses respite care.
• After caring for a long time carers may experience a loss of identity, needing time to recover and find their purpose.
• If the person you cared for passes away, you may need support with grief. It takes time to adjust.

There will be different needs through each stage of this journey such as changing information needs, training (such as manual handling), and additional support.

It is important to note that cultural and family dynamics will also influence a carer’s journey, while working carers face additional considerations, often needing time off work with very short or no notice.

This website offers tools, stories, and links to help guide you at every stage of your caring journey.