"A brain injury doesn't just change the life of the individual, it changes the lives of everyone around them."
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The impact and consequences of a “brain injury” on any individual, family or relationship can have an effect that reaches far beyond the injured survivor. As how a brain injury affects who a person once was; it also affects how a primary caregiver and family once were. Relationships, family roles and responsibilities can experience change. Interpersonal communication can become a serious challenge to everyone connected with this scenario and who maybe dealing with their own myriad of intense feelings of shock, denial, anger, and depression that can accompany the losses resulting from such a traumatic injury.
A brain injury can change a family’s functionality, balance, its dynamics, harmony and landscape forever. “It has been said, that although we may not have physically lost the person, there is often the loss of the person we once new”. Losing someone you care for can be painful, however when it comes to brain injury, we live with a living reminder of that loss each day which can make it even more difficult.
Support for families who live with, care for and provide structured support to a survivor is an area often overlooked, underfunded and needing more attention and focus.
Support for families who live with a survivor is often scarce. What each family requires can vary however there are some fundamental basics that would be helpful for all. Support can be beneficial with; helping family’s through different challenges and transitions, understanding brain injury and what they are seeing, reducing stressors, living with a survivor, acquiring coping strategies, creating independence with the goal of reducing dependency, how to support a survivor and move forward and living within altered relationships to list a few.
In an effort to provide a real and up close personal look at what some caregivers and families experience we have endeavoured to provide real time comments, thoughts and observations. It is our hope that through these various words and comments that you will gain insight into the plight and struggles of some families after brain injury. To that end, it is with our deepest sense of gratitude that I thank everyone for their participation, candour and willingness to share those personal thoughts and emotions to advance brain injury awareness.
* That unexpected phone call, the shocking news, anguish, confusion, loss and horror of that day forever sketched into our minds.
* Learning to living with what occurred as well as the loss is not an easy thing to do while you have the daily reminder of how challenging, disabling and invisible a brain injury is.
* The short-term and long-term impact goes well beyond the days that follow the initial brain injury.
* I have learned that, it's important to be patient and understanding in order to be helpful and get both of us through the tough times and many setbacks along the way.
* The many nights that I go to bed thinking, problem solving and searching for ideas to fix a dilemma, or how will I address another can be exhausting.
* We still have good and bad days, weeks and periods as well as new and different concern that arise periodically.
We are still learning how to deal with his sudden and unannounced outbursts and temper tantrums.
* Being patient enough to remind them for the 4th or 5th time in the same hour that yes they did that or they had lunch or whatever the repeated question was.
* His brain injury which was through no fault of his has not only robbed my father of his life, it has brought a whole new world of challenges living with someone we no longer think we know.
* The impact of those words “your loved one, has sustained a severe brain injury” dealt such a devastating blow. It felt like the world around me fell silent; this was a very - very painful dark moment in my life. Some of my initial first thoughts were; “why her, why us, why now, what now, why, why, why” as I waited helplessly for the doctors to return with an update after surgery.
* We have a noticeably reduced quality of life now and do not travel anymore for a number of reasons brain injury related.
* Listening to the same joke for the umpteenth time without becoming frustrated and telling them to stop it!
* There are many days where I struggle with my thoughts and emotions that his brain injury has placed on our once normal relationship.
* Making sure and checking up that they have taken their med’s on time, four (4) times a day for the last 10 plus years...
* It has been difficult managing, keeping up to and navigating our numerous medical and health challenges, appointments and other scenarios that never seemed to let up. It has been exhausting on a number of levels.
* It is been a full time job staying on top of medical and other appointments, following up on them and their health related issues and any other problems that arise.
* Living my dual life of coping with, managing, problem solving and finding new ways around difficult scenarios that challenge their life! Doing the same with my own personal life and all of its responsibilities because I care enough to be there and share a many hours, days, weeks and years of my time to help assist and support their independence.
* The level and amount of stress that I have carried daily and keep hidden from the world can be overwhelming.
* I live with the strain and pressures of dual roles as I manage two lives and wear three different hats at any given time.
* We had to change our life style to accommodate the brain injury and her physical deficits whenever we looked into travelling, whereas pre-injury we never worried about things like this.
* I have learned that life is not always fair and that if you truly care, you are only too familiar with my words....
* Living through those days where I am burdened down by decisions, feels like an elephant is sitting on my chest.
* Given the severity of our mother’s injury and the circumstances that caused it, we still live with the sequel everyday in one way or another.
* It’s important for me to take some “me time” or I’d explode at everyone including the survivor because the level of prolonged stress has begun to take its toll on my own health and wellness.
* Seeing and living with the injustice that a brain injury has imposed on our daughter has cut deeply into our lives.
* There are no short cuts with her recovery; it continues to be a life journey of supporting where she appears to have stalled or plateaus, and where it feels like our progress has been wiped out because we are back in the hospital.
This is NO simple type of injury.....
"A brain injury doesn't just change the life of the individual; it changes the lives of everyone around them."
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