Finding strength through advocacy: Supporting a parent living with dementia

An article written by Dr Annie Dullow, keynote speaker at the Unpaid Carers’ Forum hosted by the Research Centre for Palliative Care, Death and Dying

My experience of being a carer is about having carer responsibilities for my Mum, Maureen, who lived with multi-infarct dementia for over two decades until she died aged 85 years. In this time Mum received various forms of care from minimal support through to high care at the end of her life. Mum also lived with severe mental illness and distress for most of her adult life.

From my experience, I understand what the dementia-frailty trajectory at end of life looks like, how this feels as a daughter with caring responsibilities and how emotionally exhausting this can be. About 18 months before Mum died, she had a lengthy hospitalisation with delirium. Mum entered the hospital using a walker with some independence where she could still go for short walks. When Mum was discharged to high level aged care, she was much more confused and depressed and had limited mobility. This was an incredibly challenging time for Mum and the family.

Carers are ever present but not always noticed. Yet, carers hold unique knowledge about the person at the centre of care. Carers develop skills in being able to translate the needs of their loved one as well as translate what is occurring in terms of care and treatments to the person at the centre of care. Sometimes I felt invisible and needed to insert myself into conversations with health and aged care teams as an advocate for Mum’s needs. In my advocacy role, I persisted for months requesting a more comfortable and suitable chair for Mum, so that Mum was not left in a wheelchair all day, slumped over with limited visual stimuli or social stimuli. Throughout this process I felt invisible, ignored, not heard and not valued. To continually improve the safety and quality of care it is vital to recognise carers and incorporate their unique knowledge and skills as partners in care.

When considering the roles of carers it is important to highlight their diverse skills. In addition to their unique knowledge about the person at the centre of care, carers have skills in care coordination, managing transport to appointments, or assisting with health, aged care or disability applications. Some carers have complex clinical skills such as managing central lines, stoma care, complex dressings, and learning how to administer medications with the support of Caring@home. Carers also need to have excellent skills in communication, advocacy, diplomacy, and need to be resilient, organised, patient, flexible, as well as learn about self-care.

The stress of caring is often not seen or recognised. I tried to not let Mum see my distress. My focus was on being there to support her and reassure her. Sharing a joke with Mum, sitting with her in the sun, bringing her special ice cream as an extra desert after dinner or just trying to cheer her up when she was sad was rewarding. Sometimes Mum was distressed by her dementia and depression and would ask; “Why am I like this darling?” This was particularly difficult to hear and witness. I never really knew how to respond. I felt that all I could offer Mum was reassurance, lots of hugs and let her know that we were all there to support her and it just wasn’t fair. Overtime, I recognised how important it was to manage the stress of caring through counselling, regular walks, yoga and having some time out.  

Mum received good care in the last 12 months of her life.  Yet, no-one sat us down to explain “Since Maureen’s delirium your Mum is now receiving the highest level of care, which includes palliative care in line with her ACD. This is our core business and means we will support your Mum to live well until the end of her natural life”. While Mum received excellent palliative care in the last two weeks of her life provided by compassionate, caring and committed care workers, nurses and her GP, I believe there is room for system improvement. First, palliative care, as a human right, should be recognised and promoted as a core component of aged care service provision. And second, aged care providers should demonstrate their commitment to developing and maintaining palliative care clinical expertise, supported by systems and organisational capability in their provision of quality palliative care.

Author

Dr Annie Dullow

Consumer and Carer Representative

Palliative Care Australia