Mum lived with significant mental health challenges most of her adult life. When she was well, Mum was caring and affectionate and able to ‘be present’, with a wonderful sense of humour. Soon after being widowed at 64 years of age, Mum was diagnosed with dementia and required low level care. As her dementia slowly progressed Mum was physically active with some degree of independence until she was hospitalised with delirium at 83 years of age.

During this lengthy hospital admission Mum came very close to dying. Part of her delusional thinking was that she was dying and so she refused fluid and food. In this context the mental health team facilitated discussions with our family to determine goals of care and set up an advance care plan. Mum was eventually discharged but this family discussion and decision making process, while very stressful at the time, was helpful when Mum deteriorated about 18 months later.

Mum was very frail and much more confused following her admission with delirium. This meant Mum needed higher levels of care, so she was transferred to a different part of the aged care facility with a different team. This was an incredibly stressful time as Mum was initially very confused and the care team only knew her in this distressed state. At this time the CarerHelp ‘caring in aged care’ resources would have helped the family to ask questions like: ‘Who do we talk to if we have concerns about Mum’s care?’  ‘Does everyone in the team know and understand Mum’s end of life wishes and ACP?’ The information in the CarerHelp resources would have helped the family in our advocacy role with the new aged care team and also to have more informed conversations with the team about Mum’s care and what we needed to consider in terms of her worsening dementia, increasing frailty and palliative care needs.

In my role supporting Mum I received excellent support from the mental health outreach nurse, Laura (pseudonym) who helped me recognise and understand Mum’s deterioration and how her dementia was progressing and what I could do to best support Mum. Laura was a great support to Mum and really connected with her as she understood Mum’s complex mental health needs and her dementia symptoms. She also listened and helped me debrief the stress I was feeling at various times in Mum’s last year of life and helped me anticipate and understand what was ahead.  

While Laura’s highly skilled support was immensely helpful, no-one in the aged care team explained that Mum was now receiving palliative aged care. Perhaps they were too busy or perhaps they did not feel comfortable to initiate this conversation. It was only when Mum was in her last days of life that we had open conversations with the team about end of life care. We were able to implement Mum’s ACP, developed during her hospital admission for delirium, which ensured the whole family had accepted that transfer to hospital for any invasive treatment was not part of Mum’s care plan. Mum received excellent care in her last days of life by a team who had got to know and adore her. We were incredibly grateful for the team’s kindness and compassion in their care of Mum at this difficult time.

Conversations about death and dying can be confronting for many people, including aged care staff, and influenced by a range of factors, such as cultural, spiritual, life experiences and readiness to consider what this means for oneself and others. Yet, with the implementation of the new aged care standards and through the range of CarerHelp resources, families and carers may now feel empowered to initiate open conversations with the aged care team about palliative aged care.

The ideal conversation as families engage with aged care providers would start with...

‘Palliative care is our core business. This means we will support your loved one to live well until the end of their natural life. Our team receives palliative care training and we have systems in place to recognise and act on any clinical changes or deterioration that your loved one may experience. We understand and will do everything we can to honour your loved one’s wishes - as documented in their ACP. We will support you and keep you updated as your loved one’s care needs change and provide grief and bereavement support as your loved one approaches the end of their life and after they die’.

These conversations take time and courage. Yet I envisage that many families would welcome this clarity and reassurance as they prepare to support their loved one at this challenging time in their lives.