Lifelong care: Michele - peace of mind
“Becoming too old or what will happen if I died would come up every time I thought of Michele’s future, it was a real worry.
It was a chilling thought that Michele might be alone in the world depending on other people to care for her. I thought about her needs and my ability to keep looking after her.
The idea of ‘FamilyCare’ came from the need to provide lifelong care even when parents become too old or are unable to continue with providing care. ‘FamilyCare’ is an approach that enables parents to manage the needs of all the family members, particularly the family member with a disability. It involves whole-of-life considerations that include living ‘the good life’ and most importantly, providing loving care. The approach also focuses on providing personal care, long-term care accommodation, safeguards and independence.
The main features of ‘FamilyCare’ include having a family-person centred approach, understanding a person’s needs, representing their best interests and providing quality lifelong care. In simple terms, ‘FamilyCare’ provides loving care with built-in safeguards.
In our case the safeguards included setting up a trust with a charter that describes how she would be cared for in the future. Other safeguards included: fixed arrangements involving my personal will, enduring power of attorney, enduring guardianship and financial arrangements.
The safeguards provided Michele with an independence that is not dependent on caring arrangements that may change in the future or dependent on people who may not have her interests at heart. Her independence involved a knowledge of the support services, being self-sufficient in terms of family needs, ongoing care support, living ‘the good life’ and financial resources.
It occurred to me much later that providing Michele with lifelong care also gave me peace of mind... perhaps that was all I needed."
Lessons learned
Parents must understand short and long-term needs of all family members, particularly the family member with a disability.
For many parents, planning for the future created a turning point when they regained control, better managed the needs of a family and created a positive outlook.