Table 2 Key Care Considerations

General advice for carers

‘Planning questions ahead of time (for medical appointments). Taking notes or recording conversations.’

‘Try time out activities together (ways to relax while still caring). Things that the person can still enjoy (going to a concert of live music, sitting on the beach).’

Managing the emotional and physical burden of caring

‘Looking after yourself may just be about living day to day and utilising as much assistance as you can to get through. When care goes on for longer than expected you may start to feel that you need a different strategy that actually ensures you get time out and actively do activities that may assist.’

‘Stay connected with friends and family.’

Information for carers on how to prepare for the death of the person cared for

‘I wanted more preparation for the death – even though I have seen others die, I have not been the carer before and I was surprised by the impact.’

‘I needed more information on what symptoms were due to the illness and needed treating (medication adjustment) and what was part of the dying process that may not need to be treated.’

Information on services available to carers and how to find/use them

‘The services are not as good in regional areas, they only do overnight for crises situation or symptom management.’

‘Understanding what palliative care is and to make contact early – provide emotional support as well as practical and medical.’

Information on support services available to carers following the death of the person cared for

‘I wasn’t prepared for the grief. I found it helpful to read about death from other carer’s experiences.’

‘My two siblings and I made contact with psychologists prior to Mum dying and had 10 sessions each so that we could talk thru the dying process and then after death.’