‘We can’t change the situation but we may be able to change the way we respond to the situation – in this instance, the universal experience of death’, said Tania Daniels of Carers Victoria.
Help for those caring for loved ones at the end of life stage
On 14 October 2019, PRONIA’s Antonios Maglis from the ‘Mazi’ Palliative Care program co-facilitated a workshop with Tania Daniels, Carers Victoria, in Clayton. The ‘Caring till the End’ workshop focused on carers’ wellbeing and self-care during the end of life stage of a loved one.
Recognising the effect of the caring role
Attitudes towards caring at end of life vary from individual to individual. Carers expressed feelings of guilt, expectations of responsibility and challenges when the death of a loved one is imminent. They described family pressure on women to assume caring roles, feelings of lack of control, and an ongoing struggle to access relevant services and supports.
‘I’d go home after the visit to the facility and feel helpless, alone, invisible. Not even having the energy to do my house chores!’, said one carer.
Others spoke of social isolation, feeling trapped, angry and mourning the loss of who they used to be as well as the changed relationship to their relative, since the diagnosis.
Some felt let down by the aged care system. ‘Aged care packages are not enough. In many cases the sick person enters an aged care facility or dies without having received their package. That is what happened to us’, said another carer.
Reinforcing the importance of self-care
Self-care is a difficult thing for most carers who often do not have time to look after themselves or take time out. Feelings of guilt, shame, fear often act as barriers to self-care. Carers discussed the benefits of sleep, healthy nutritional diet, exercise, music, gardening, pets, cooking and enjoying family time during their care work.
Services that offer support for carers
The session ended with a description of various services and supports available for carers through PRONIA and other organisations. PRONIA offers information, support and respite to carers, Carers Victoria offer counselling for carers and links to services through the Carers Gateway.