On December 12, 2001 an event unfolded into a life-changing experience for my family. My brother-in-law, Rodney, was in a car accident that on the surface appeared to be an urban collision. In my mind, it could not have rendered the life threatening catastrophic injuries that it wrought. However, the accident was freakish and Rodney’s injuries were profound.
The first few weeks after the initial shock of the accident, the reality of becoming a caregiver began to take shape. My husband was the logical choice for the decision making that had to happen. Without a long-term view of the requirements needed, my husband and I embarked on what has become a 15-year journey of discovery, success and pain.
In the initial months after the accident, Rodney was in a coma and non-responsive. He was breathing through a tracheostomy and fed with a tube directly into his stomach. The best advice at this time was to accept his condition and find an institution that would accept him. Living in Australia, this is an impossible task, as no nursing homes had places available for a young person with such profound injuries. This was the reason why my family cared for him. Rodney needed a home and intense therapy to retrain his brain and begin his long journey to recovery.
Luckily, we had the help of an amazing neurological nurse who spoke to us about the brain’s ability to recover some function. She told us to keep talking to Rodney, ask him questions, and play games to stimulate healing. My husband and I were working full-time and our children were in primary school, but we made time for daily visits and extended periods of therapy. Eventually, we saw progress. The neurologist simply insisted that we were just seeing what we wanted to see. Some of Rodney’s movements appeared to be reflexes, but not in response to stimuli. I knew the doctor was wrong. The first breakthrough was the catalyst for us to continue with purpose. We were working with a small soft ball that we had to place in Rodney’s hand. My son, who was only nine at the time, was taking his turn. He would prise his uncle’s fingers open, place the ball in his hand and gently unfurl his fingers to remove the ball. In what must have been a moment of boredom on my son’s part, he asked his uncle to throw the ball. Rodney’s fingers opened and the ball rolled towards the edge of the bed. It was a response.
From that humble beginning, we commenced a long process of finding the right place for his care and the right therapists to work with him. In 15 years, we have witnessed a significant awakening. While Rodney’s brain injury is profound and permanent, he is not. He is in a wheelchair and has limited physical movement of his upper body. However, he has learned to speak, feed himself and participate in decision-making concerning his care. We have been able to purchase and renovate his home to accommodate his needs. An appropriate care provider does the daily supervision, feeding and personal care for him. He has taken vacations and participates in family activities with us. But these things did not happen overnight. It has been a process of responding to his changing needs. It has taken thousands of hours, phone calls and meetings. There have been nights without sleep, sudden and terrifying declines and many nights in intensive care. It has been frustrating, heartbreaking and exhausting. There have been many times when we have wanted to throw in the towel and say that it has to be someone else’s turn. However, we have persevered.
This is because we have been able to do this as a family. While my husband has taken the lion’s share of the work, it has only happened because we were all in this together. It was a decision to accept that this was our challenge. Together, we have moved forward and Rodney has had the best chance to live a positive and enriched life despite his disability.
When a car accident is reported, people are aghast at the images of broken cars, the horror of the injuries and loss of life. Few ever consider what the long-term complications might look like for someone with a brain injury. They also don’t usually consider what the future looks like for the family who takes on the care of the now disabled family member. It is never something you would expect. It might even be something you think you could never do. Perhaps 15 years ago we might have had that same thought. Like many challenges, it seems impossible at first. But you never know how strong you can become in the face of relentless negativity when faced with a life-changing responsibility.
Caring for someone with a disability is complicated. Not caring is unthinkable.
Tracey Lee is an English teacher at St. Peter’s Anglican College and the author of “What Remains.” She has taught English and behavioral science for more than 30 years. Lee received her bachelor’s degree in education from the University of Tasmania and a master’s degree in creative writing from the University of Canberra. She resides with her husband in Malua Bay, Australia.