The caregiving role and its impact on carers

Being the principal carer for a person who is dying can be intense and overwhelming. Many life-limiting illnesses have a prolonged course and caregiving can be a long-term challenge. Carers often do not know what to expect; this can be very unsettling.

People who take on the role of carer often immerse themselves in their role and may be reluctant to consider their own needs. They may struggle with the unceasing demands of the role, with no opportunity for time off or time for themselves. Feelings of anxiety, intense emotional distress, frustration, anger or ambivalence are common, particularly in those who are isolated and unsupportedVentura, 2014.

Families and carers often become highly proficient in the care of the patient, with an intimate understanding of their preferences. They may be required to undertake tasks that can be daunting, particularly when the patient is being cared for at home in the later stages of illness.

Caregiving can adversely impact both the physical and mental health of carers. Many principal carers are older (eg the spouse of an older patient) and have their own health issues, which they may neglect or minimise in the face of overwhelming patient problems. Some carers, particularly adult children of patients with palliative care needs, struggle to balance competing responsibilities, such as parenting and work. Being close to someone with a life-limiting illness can challenge a carer’s own religious and spiritual beliefs.

Other issues that can be difficult include making decisions on behalf of the patient, dealing with financial and legal matters, adjusting to changes in relationships with the patient and other family members, and managing ineffective family coping strategies that are exposed with the increased stress. It is important to explain to carers why the patient’s energy levels, concentration and appetite are reduced, so that they have reasonable expectations of the patient.

The difficulties facing a carer may be acknowledged but not properly addressed by healthcare professionalsVentura, 2014. This can result in increasing distress for the carer and negative consequences for the patient; for example, carer exhaustion is often a reason for a patient to be admitted to an inpatient facility. Distress can be reduced if needs are assessed early and community supports are introduced when they are required.

Despite the challenges and burdens associated with being a carer, many people find caring for a dying relative or friend to be a rewarding and meaningful experience.