Canada: Acquired Brain Injury – Navigating The Waters And The Importance Of Self-Advocacy

Last Updated: July 11 2017
Article by Kaitlyn MacDonell

Acquired brain injuries are something that no one plans for. After a loved one has been impacted by a brain injury, often the signs of the brain injury are not apparent until much after the acute phase of healing.

May 4, 2017, marked the 10th anniversary for my family following my father's acquired brain injury.  He was attacked and beaten at random in my hometown. I remember the call, the panic and the fear of the unknown. As I entered his hospital room, I remember the sight of my father lying there in a coma. Although scared, I had hope that he would remain alive because when I spoke to him, he would squeeze my finger.

In the days that came after, my father would eventually awake out of his coma. We were so grateful that he could walk, talk and that he remembered who we were but had no recollection of the events that had taken place. He was quickly discharged home after he appeared to be stable.

In the months that followed, we were so thankful and focused on the fact that he was alive, we missed a lot of the signs. He also was not willing to admit that something was different, something was off and not right, and he would hide these changes from us. Eventually, we began to notice when driving with him that he would nearly miss the ditch, he would forget conversations we had with him earlier that day, and he began to fall at random times. Sooner or later, his emotions would overtake him and he would often cry uncontrollably and he would not be able to articulate why. We started to, in time, notice that he had difficulty finding his words, poor concentration, would often choke on his food and suffer from incontinence.

This is when we started asking questions. When we left the hospital, we were not told of the signs to look for with brain injury. We did not know what a brain injury was. My father at the time did not have the benefit of a motor vehicle insurer to assist with funding. We were left to navigate the waters and figure out what was going on our own.

Interestingly enough, the brain imaging never showed any changes in his brain initially. His MRI and ultrasounds came back negative. However, we knew that something was different. He was not the same and the symptoms he was presenting with were not things we had ever witnessed before.

With repeated cries for assistance, eventually my father was placed in a program for stroke victims at the hospital. Brain injury in the area where we lived was under serviced by the medical professionals and he had to travel an hour away to receive this treatment. With time, he was placed on a pilot project with Community Care Access Centre with an acquired brain injury team. He started to receive the assistance from an occupational therapist, behavioural therapist, a speech language therapist, as well as a rehab support worker and eventually personal support worker assistance. These therapies became and are invaluable. The assistance that these workers provide to my father and my family and their impact on our lives will never be able to put into words.

My father has not and will not be able to return to his job as an electrician at General Motors. He had to learn a new normal. Normal for him at 50 years old, when he acquired his brain injury, was a very different life than what he lived before. He became dependent on his wife and children to get around as his license was eventually revoked. Living in a rural community, this was difficult to adjust to. Once a handyman around the house, he had to learn that he had a lack of foresight and ability to understand safety risks. This put and still does put a significant strain on my mother who was and is his primary care giver.

He has good days and bad days. Some days he will be able to understand that he has a brain injury and that he now has limitations. On the bad days, he does not. This has resulted in two floods in our home as an outcome of him not understanding the consequences of what he was doing. Often I will come home to my mother completely exasperated because he will not leave the water system alone in our home. He truly believes what he knows what he is doing despite many catastrophes. He is a safety concern to himself and my mother must be watching what he is doing 24 hours per day.

Initially after this incident, his friends would drop by to see him. Over time, one by one, they would stop. Partly because their lives would take a different direction and partly because they would not know how to react to him. He would be able to walk, talk and he looked normal from the outside, but he was different. He was not the same guy.  My father went through periods of isolation, frustration and acceptance of this change.

On the date of the anniversary of my father's brain injury, I called him. I said to him, "Dad, do you know what today is", his answer was "the day I lost my brain". Although I believe my father was trying to bring levity to the situation, this really resonated with me. No matter how long it has been since the brain injury, the impacts are lifelong.

Since his initial brain injury, my father has suffered from vertigo which is involuntary falling. He has fallen twice and hit his head resulting in two subsequent brain injuries. He has since been diagnosed as suffering from early onset of dementia, although the impact of the brain injury cannot be divorced from this diagnosis.

It is with my father in mind that I do what I do. I help injured victims. The law in my father's case did not work in our favour. He did not have the benefit of an insurer to assist with his losses and further, the individuals who assaulted him received a pitiful criminal sentences. No matter what happened though, nothing can change the impact a brain injury has on one's life and one's family.

My father's brain injury changed the entire course of my life. I was initially planning on a career in genetic counselling and was working towards this when this incident happened. As a result of the direct impact this has had on my father and my family, I decided to go to law school. I had the opportunity to speak at the parole hearing of one of the individuals who assaulted my father and it was after that I told my mom, "I just made a small impact, I'm going to law school".

The brain injury association in our local city has assisted my father immensely following his brain injury. He is part of the day service and now has a routine of attending the association. This has given him purpose and allowed him to interact with others in similar situations. I now sit on the board and donate my time as a small token of my appreciation for the services they have provided to help my father.

It is important for individuals and families to appreciate the changes that loved ones go through following an acquired brain injury and receive the assistance of both a medical team as well as a legal team to help navigate the waters of the impact of the brain injury.

The content of this article is intended to provide a general guide to the subject matter. Specialist advice should be sought about your specific circumstances.

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