Anyone, at anytime, can find themselves responsible for the wellbeing of a partner, family member or friend at the end of their life. Most Australians who know they are going to die spend the majority of the last year of their lives in their home – this would not be possible without the contribution of carers. [1-2]
Caring can be extremely challenging, but carers can also find it a rewarding experience and derive meaning and satisfaction from the role. [3] Caring can encompass a multitude of tasks and responsibilities both physical and emotional:
- Keeping someone company
- Personal care such as bathing or toileting
- Assistance with communication
- Providing transport
- Administrative care, such as banking, paying bills
- Giving medication or dressing wounds
- Shopping and arranging medical appointments
- Cooking meals and housekeeping
- Maintaining friendships, social networks and activities.
Wives and husbands, sons or daughters, neighbours, friends and others can enter into the role of carer with significant ambivalence – feelings of willingness to care can be mixed with reluctance or even resentment. [3-5] Caring can alter an established relationship – for example, if a son or daughter is required to personally care for his or her parent - challenging and changing their previous or ‘normal’ roles and relationship. [5]
Carers may be unprepared and significantly unsupported for the important contributions and demands required at the end of a person's life. [6-8] Often such care can be unnoticed by friends and clinicians.
Some people who provide care and support may not be aware that they are caring or do not wish to identify themselves as ‘carers’. [3] Clinicians have a role to play in the identification of carers and ensuring that they are supported and informed of health decisions. [9]