The impact of Parkinson’s disease on my family can be measured in Christmas cards. As a child, I remember the windows and door frames of our home being strung with lines and lines of cards from friends and loved ones. My mother would sit up nights to handwrite each one, and us kids would help sort the designs and make sure our favourite relations got “the best cards”.
At around 40, my age today, my mother began to suffer vague symptoms that were eventually diagnosed as Early Onset Parkinsons. As the years slowly passed and the disease sank its hooks deeper into her health, it also stole my parent’s business, home, and happiness. A lifetime of hard work was erased when my father was eventually compelled to stop working and shift into a full-time carer role.
At a time when they should’ve been contemplating retirement and playdates with grandchildren, they were forced to confront daily battles with dopamine and dendrites. Visits to various specialists, many different drug regimes and deep-brain-stimulation did little to slow the decline. As my mother gradually disappeared into the disease, the number of string lines and Christmas cards also began to wane.
Mum had always been the social bedrock of our family, the glue that held us together. Typical of many 80’s families, she stayed home to raise four rambunctious kids while my dad provided for the house by grinding out shift work at the local aluminium smelter. When she got sick, ties with friends and family slowly began to fray. My father is a wonderful man, a committed husband, and doting grandfather, but a great communicator he is not.
Some viewed my father’s inability to stay connected as a personal insult. Unloving. At a time when my parents needed compassion, understanding and a helping hand, they got a closed door. These people were never fortunate enough to meet my real mother, only the fragile shell of a woman she became as a result of this destructive disease.
Visits and visitors became an increasingly rare occurrence as she became more and more housebound. Eventually, even her voice began to betray her, making phone calls problematic. On our most recent interstate trip home for Christmas, my mother’s last at the family home, the number of cards required only a single string line.
But this isn’t supposed to be a sad story. It’s actually a story of dedication, sacrifice and love. My father supported his wife of over 40 years until he simply could no more. Despite incredible obstacles, he held true to his wedding vows — for better or worse.
He visits his bride in the nursing home every day. Life-long friends continue to show support, and caring neighbours lighten the load where they can. While the number of people surrounding my family has diminished, the quality has not.
My mother battled fiercely with a foe she could not outlast. She took some brave risks to stave off the inevitable, some with positive outcomes, others with devastating consequences. But she fought. She continues to fight. Every now and again, little glimpses of her past-self peek out from the fog. A reminder of the vibrant, energetic and loving woman we remember.
Whatever time we have left will be celebrated. My mother has held my infant son and seen his smile, a special event we eagerly hope will repeat when our daughter is born. Despite being separated by long distances, I hope my children will know all of their grandparents and abuelos, if mostly through video chats, photographs, stories or far too infrequent visits.
This experience has taught me that we need to practise compassion. That we should pull people closer to us when we see them struggle, not push them away. We can’t always know each other’s hardships or journies of how things came to be, but we can practise compassion.
“Compassion is not a virtue — it is a commitment. It’s not something we have or don’t have — It’s something we choose to practise.” — Brené Brown.