The statistics given to couples following a brain injury are horrible and terrifying. They are told that upwards of 90% of marriages end in divorce after a spouse sustains a brain injury. I say… boldly… “90% of marriages could be saved when a spouse sustains a brain injury IF supports are in place for the entire family and for however long they need them.” Period. I wholeheartedly challenge our system to prove me wrong!
Everyone in the family is impacted by brain injury. Everyone! Spouses, children, parents, siblings, grandparents, aunts, uncles, cousins, chosen family, and anyone else connected to the person (blood-line or not). If we follow the example of the husband or wife suffering a brain injury, then I can tell you unequivocally the non-injured spouse and children (if applicable) shoulder tremendous responsibility in coordinating care, supports, and getting their loved one through the day. More often than not, supports are not in place to help the supporters.
Don’t get me wrong. I fully believe that people do better at home. What I don’t believe is that sending a person home from hospital without supports, or limited supports, is right. It’s not. The individual needs care, the family needs help, everyone needs to do their own work around loss, and leaving the person and their family to fend for themselves is, in my opinion, criminal.
Here is a look at life on the inside for families following a brain injury:
Who is This Person?
The Emotional Roller Coaster of Brain Injury & Loss Everyone has experienced a situation where the response of another leaves us wondering… who is this person? His or her reaction may be so over the top that you don’t recognize them. Or perhaps you have received this stinging feedback about yourself from others. The emotional roller coaster of brain injury and loss is suffered by everyone involved. The survivor goes through intense emotions and family and friends also endure an irregularity of feelings. As grief takes hold, life becomes out of control and of course, our default thinking is that the person is not grieving right. If you have thought this, you’d be wrong.
Few things are certain in life; however, there are three guarantees:
1. We are born.
2. We die.
3. Change is inevitable!
Changes, like finding a new job or adopting a healthier lifestyle, are usually an individual decision. However, changes as in the death of a loved one or a catastrophic injury occur without choice or negotiation. These are not changes one would have asked for. Yet, no matter how much suffering goes with the change, you are expected to accept it.
A common statement is “I just want my life back.” That is not possible. Even if a person was healed and all the scars of what took place are eliminated they would still be different. Why? Because going through an experience changes us. You don’t go through an event without developing a new appreciation for what you have or have lost; therefore, your view of life will be changed forever. There is no going back to the old you.
The DABDA Model Barely Scratched the Surface but it Started People Talking
Dr. Elisabeth Kübler-Ross’ a Swiss American psychiatrist, was a pioneer in near-death studies and wrote the ground-breaking book On Death and Dying. Her model, commonly referred to as the Five Stages of Grief or DABDA (denial, anger, bargaining, depression and acceptance), was a godsend to professionals. At the time it could be equated to “giving water to the parched.” Social workers, clergy, doctors and nurses were desperate to find a way to open communication with the dying. Kübler-Ross did just that.
The problem with her model was that it was interpreted as being linear, meaning the stages occurred in the order given. This left professionals and their clients believing that one must go from denial to anger to bargaining and so forth or the person was doing the work of grieving incorrectly.
Before Dr. Kübler-Ross died, she declared that the stages were meant to be a list of potential grief responses and not to be misconstrued as having to go from 1 to 2 to 3 to 4 to 5. Not only did this validate what the bereaved know to be true, which is that grief responses are vast and not predictable or orderly, but it also gave us permission to grieve in a more realistic way.
There is no denying that Dr. Kübler-Ross pioneered the field of bereavement. Without her work, the voices of the bereaved would remain unheard and their emotions grossly misunderstood.
It is Actually an Emotional Roller Coaster
Loss, including loss associated with brain injury, unleashes an excess of feelings. Some won’t believe they are capable of having such intense emotions, which can be explosive. As previously stated, these reactions are not predictable or easily categorized in a logical fashion. The journey is not a beautiful walk; it is more like an evil roller coaster ride. There are times when all you can do is white knuckle it through the day and hope to get to the end of it. Some even have fleeting thoughts of the roller coaster disappearing into a dark hole. This isn’t because they want to die, it’s because they are desperate for relief.
Dr. Alan Wolfelt’s expansive list of grief responses includes: Shock, numbness, disbelief, disorganization, confusion, searching for meaning, anxiety, panic, fear, loss, emptiness, sadness and more. This immense list resonates readily with people and is one that Dr. Kübler-Ross would agree with.
My analogy of the roller coaster is because the emotions are so intense and frightening that you want it to be over. There are not concise or concrete steps to go through, so one response doesn’t lead to another until you reach the other side of your grief. The example below offers three of the common responses that people have following loss. These can have you going round and round and seem never-ending. These examples can be replaced with others like confusion, disorganization, and sadness with the same results. Those in the diagram are the ones I most often hear.
I like to use the acronym R.A.G.E. to explain this normal grief cycle:
Regret – It is normal to think about the “could-haves” “should-haves” “I did” and “I didn’t.” You may regret getting in that car or for allowing someone else to get in a vehicle. Regret is about being remorseful so it requires forgiveness to release it. Remember, forgiveness is not about removing accountability; it is about taking responsibility for what you have done and/or no longer being a vessel to carry the pain. You cannot control or change the past, but you can focus on doing things different or better today.
Anger – I felt anger towards the person who hit my husband on his police motorcycle. I can’t remember how long I felt it, but I did and I had to work through that. I was also angry with him when he died – after all, we had two children getting close to the teen years and we were going to do this together! Now I was on my own. Anger is normal. It is how anger is expressed that is important. Work with a professional to safely express your anger and then let it go.
Guilt – Feeling guilty is also a normal part of the grief experience. For me, I felt guilty that I had been the one left here to live. I felt guilty when I fell in love and remarried. I felt guilty that I was able to be a part of and enjoy our daughters’ lives and their dad couldn’t. Guilt can be healthy when it is motivating us to change (e.g. you ate one too many chocolate bars) and it can be unhealthy (i.e. the sole purpose is to make you feel bad). If you have a reason to feel guilty then make the change or amends and move on. If the guilt is irrational do some work around forgiveness if it is needed and/or release the guilt knowing it does not serves any purpose.
Emotional Roller Coaster – The grief journey is the roller coaster ride from hell. It is about going forward ten steps and then 50 back. You think you have a handle on your feelings when suddenly you have an outburst. The grief journey is not easily controlled. You can’t force it into a linear process – it is a twisty-turn type of path that doesn’t allow you to see beyond the fog. Grief commands your attention and being proactive in the journey is best. Do the work of grieving so you can live again – really live with joy, passion, love and laughter. Do it because you deserve to be happy.
Time-limited supports are often a setup for failure
Okay, so here is the deal. We have declared over and over that “no two brain injuries are alike” and “there is no cure for a brain injury” and what “works for one person may or may not work for another.” So encouraging, right… not!
Here is the truth:
1. No two brain injuries are alike; however, the threads of similarities are profound, especially when considering not only what the individual goes through, but what the entire family unit goes through.
2. There is no cure for brain injury… sort of… but now we know about neuroplasticity and how the brain can heal itself. We know without a doubt that the brain can create new pathways and enable a person to do things differently. Yes, life is different after brain injury. But it’s not a death sentence. If a survivor has support to do the work of recovery and rehabilitation, there is a different outcome. Dumping the full responsibility of doing long-term rehab on the family is a recipe for emotional bankruptcy, burnout, and breakdown.
3. What works for one person may not work for another person… to clarify, what works for one person may not work for another in the same timeframe. Like grief, brain injury rehabilitation does not have a time-specific agenda. There is a plethora of documentation where survivors are able to do something today that they have not been able to do for ten years post-injury. How? They kept working at their rehabilitation… and, usually with support!
We would never dream of telling a heart patient or someone with a chronic illness that they are only entitled to six months of support. Why do we do that with brain injury rehabilitation?