Carers have an integral role in the transplant process. Caring can be very demanding and often restricts the lives of individual carers and their families. Challenges experienced by carers of chronically ill people include:
Caring can take the freedom and spontaneity out of life, especially for carers of transplant patients as daily life must be planned around the possibility the patient could be called in for a transplant. It can be very difficult to plan for next week, next month or even next year. For many it feel as if life is “on hold” until transplantation.
The extra costs of caring include medications, transport, parking, higher bills due to additional heating and laundry, home modifications and disability aids. Spending long periods of time at the hospital often necessitates the additional purchase food and drinks. This is often compounded by a reduced income as the patient and/or carer is unable to work.
Social isolation and relationships
Many carers feel isolated, missing the social opportunities associated with work, recreation and leisure activities.The demands of caring can leave little time for other family members or friends. Carers often have to deal with strong emotions, like anger, guilt, grief and distress which can spill into other relationships and cause conflict and frustration.
Carers are often relied on to “carry” everything. They are depended upon by the patient, other family and friends, and the health service to manage the patient’s care away from the hospital. This often involves constant prompting (to take medications and eat the right foods), monitoring (of symptoms or changes in the patient’s condition) and organising (planning appointments, work commitments, childcare, etc). For some, these new responsibilities signal a change in roles, which can be challenging for the carer and patient to adjust to.
Many carers of people with liver disease have to cope with significant cognitive and behavioral changes in the person they are caring for such as:
· Depression (70% of any chronically patient population is depressed)
· Encephalopathy (confusion associated with liver disease)
· Irritability or aggression
· Reduced insight in the person they are caring for and reduced capacity to show concern or appreciation of the efforts made or the toll on the carer
Carers often ignore their own health and are 40% more likely to suffer from a chronic health condition*. Some health problems such as back problems, anxiety and depression, can be directly linked to caring. Carers often suffer from disturbed sleep due to stress and frequently assisting the patient during the night.
Carers have the lowest wellbeing rating of any large group measured by the Australian Unity Wellbeing index*
*Source: Carers Victoria 2013
Rewards of caring
People who care for a family member or friend say there are many rewards:
· The opportunity for personal growth and the development of new skills
· Proving to yourself that you can meet new challenges
· The satisfaction of knowing you have helped someone who needs you and don’t the best you could to improve their quality of life
· Strengthening the relationship with the person you care for and knowing how much they appreciate your help
· Receiving acknowledgement from your family and friends