Pauline's advocacy story- remembering Joy

The Kafanelis family stood with rigid shoulders, unsmiling faces and a burden so heavy that the emotional gravity was palpable. With a collective, vague skill set and pure exhaustion, they are seeking resolve to a personal, familial situation. Their mother is suffering from dementia. She is okay physically and mentally, however, she likes to wander, a common symptom of dementia. She is predominately being taken care of by her older husband, the children’s father. He is adamant that he can do this, take care of her with the help of the family, a man in his 90’s, but the demands are increasing and the effort and responsibility is beyond him.

The family share mixed preconceived ideas of aged care facilities and staff, that preclude their openness to the various solutions to care for their mother. The control that some members of the family are asserting are limiting the options available. When the family quarrel it is out of guilt for not having the tenacity, patience and dedication to sort this out. The older sister engages Pauline, an aged care advocate, who bears a professional aptitude with caring intention that offers real solutions for elders seeking aged care.

Within 2 hours Pauline dismantles the defensive guard of the younger sister and part-time carer. Her ability to get families together, listening and communicating comes from years of experience in helping people understand what they want and need and then, attaining the same. She appreciates that aged care is an industry that works under an umbrella of bureaucracy, but she knows how to navigate that system and, as an independent contractor, she is always on the side of the family, she plays a game she calls, ‘holistic tetris’. She has a charging confidence that gives the family someone to trust with the most important and sensitive decisions.

The family is united, finally, in their undertaking to find their mother a place that is geographically convenient, where she will get the most visits from family visitors and the
right mix of freedom and care. An opportunity presents for 2 weeks respite and the whole family are willing to set aside their fears, one being that their mother will be just another client in a mainstream facility, to see if it works. Astoundingly, to all their surprise, the outcome is positive.

The husband visits daily, for hours, enjoying the company and the freedom to come and go. She is not just existing but also contributing to the people around her. She enjoys meals and physical activity. The nursing home she inhabits makes room for her husband with a dividing door.

The family recognise that these days, with their mother still holding strong, the emotional labour in caring for her is void of resentment and anger, they are enthusiastically connected, knowing she is safe and sound, supported and loved.

- Pauline's story, about Joy and her family, as told to Nat Power

We believe in the power of stories to illuminate and educate. Through sharing our experiences of getting older and caring for those around us, we can help each other navigate the challenges we will all face at some stage in our lives.

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