Friday, 30 January 2015


I have not visited this process in my blogs but this one will play a role often in your life both as a caregiver and a survivor.

Most often this is reserved for people who have died and therefore we tend not to think that this will play a role but with any disability that one is not born with the chances that you will become victim of its stages are likely.

Let us look at it for what it is.  If you lose an ability, such as mobility, or the loss of a body part one has a death of that function(s).
In brain injury you may well lose the ability to talk, remember, sleep, move one side of your body (paralysis) and as I have said quite often we lose "Self", the person we came to know and love all these years.

The spouse or caregiver loses the person he or she loved and depended upon to keep up their side of the responsibilities within the realms of the marriage.  Most often the husband is injured and no longer supports the family and that is a huge blow to the entire family and places even greater stress on the already overburdened wife.

The children will also suffer from loss of their security as they once knew it and so are subject to some form of grief.

Expect it.


This is the first stage.  How or why did this happen to us or me? Confusion and a sense of being out of control as well as not fully understanding what this will all means to you or your family.

At this stage it is important that you do not make any financial or legal decisions and get legal advice from someone who fully understands brain injury.


This will come in many forms.  From the caregiver being mad at who caused this dilemma if there is someone to blame, Anger at the children or spouse or a mix of this going back and forth between all members of the family.  You may feel your world is out of control and that you are going insane.
Now is the time if you have not already sought out help through your doctor, a therapist who can allow everyone to vent in a positive manner and come together as a family to help the injured loved one.


This can be done to your God or with yourself begging for a return to one's former self in hopes that this is not permanent.  this may lead to depression or suicidal tendencies and professional help may be a need.  Add to this the many drugs that may be administered and those thoughts may be forefront and constant monitoring by physicians may be required.  Have your Doctor's or therapist or local help line phone number on your cell phone at all times.


This will eventually come but there is no timeline and in fact you may bounce back and forth between the above mentioned processes.  I often ask why me?   I really haven't know an adult version of me uninjured but still I wonder how my life would have been without the AVM.

So be aware of these processes.  It will eventually get easier but nothing will replace the potential of what we once were regardless of who is to blame.

If you measure your recovery from the day of rather than the day before the accident, then the progress will be greater than comparing it to someone who had no deficits.
It is incumbent on you to take what you have now and do the best that you can with the cards dealt than to continue chasing after a hand already played.

What have you got to lose?

I have been living with this broken brain for about 80 percent of my life so far.  I was born with an AVM(ArterioVenous Malformation) since birth in July 1959.  It raised its ugly head, no pun intended, about 4 years before my actual brain surgery at age 18 in 1977.  My concentration all but vanished and my memory, short term, was wiped out and has never recovered.
So how am I writing this?
My long term memory is fully intact and I recall things that happened back to my early youth of age 5-6 years of age.
I am very fortunate that I can hold down a job and as long as it is repetitive in nature rarely forget a process.   Now my learning curve is longer but eventually I master the computer, the piece of equipment or the task at hand and have no issues.
I am truly blessed to be high functioning brain injured.
The things I write in this blog are shared experiences of both myself, my wife and those around me who have little or no voice, the more seriously brain injured whose mobility, speech, memory, cognition are greatly affected.
I stumbled through this world with no formal rehabilitation and after 15 years of recovery joined the Comox Valley Head Injury Society in hopes I could help others facing similar issues as I had.
Little did I know that this chance encounter, would forever change my life.  As I smuggly went to the group, I soon saw in others, things I knew to be true about myself and had not considered it to be in direct relationship to a broken brain.
My memory was the fact of pot smoking.
My anger just a bad trait and not due to cognition, frustration from memory lapses and the like.
I had so many comparisons that I sought out Anger Management courses, found counselors who understood brain injury and most importantly knew how to communicate with a brain injured as not to upset of cast blame on him but rather at the TBI or ABI.
The merging of me with a group of similar wounded warriors was as therapeutic to me as I was to the ones who were just starting their journey.
We understood without ever having to apologize for losing track of our conversation.
We could laugh at how names elude us.
It is a sanctuary where you can be yourself without explanation or apology.
It is a place where the caregiver can find relief.
A place to vent their frustration and heartbreak.
It is above all a place that celebrates hope.
If you are too proud because you are not as badly off as someone else, think again.  You can learn about yourself in others.  You may see that though someone else is worse off traits that they display are the very issues you deal within your own life, just slightly watered down.
What have you got to lose from joining?
What have you got to contribute?
What have you got to gain to shorten your journey?
Find a group online or locally and make a difference.
It may just save your life or someone else's like it did for me.

Helpful Hints

Here are some facts you might encounter after a brain injury.  Some symptoms will be lasting, some less severe and unfortunately some may be progressive and increase in severity as time goes on.

I noticed almost instantly after brain surgery that I required more sleep.  I found that by mid afternoon I needed a nap.  I was 18 so one could not place this need at the feet of old age.  I am 55 right now and still find the need to have a power nap to recharge my batteries.  I find a 20 minute snooze is all that is required.
I do not recommend going past 30 minutes because the powers of our sleep cycle may be at jeopardy.  Going into deep sleep mode may cause you to be less functional when you awake.

Your cognition is what will be affected and this could lead to more frustration or anger outbursts so allow yourself to power down because fatigue is dangerous to both the injured and uninjured.  How many times have we heard of someone asleep at the wheel and either killing themselve or someone else.

Many brain injured will attest to getting overwhelmed by noise, crowds or other social functions like sports, shopping and the like.   Plan for this and have an exit plan.   Start by having a nap before seeing the grandkids or attending a party.  Plan in advance the need to exit gracefully by informing the friend or relative that this is the new norm and most will be accepting.  They may even take the children outside while the brain injured gets some needed downtime.

Realize that our brains do not process as quickly and we are not being rude if we make a hasty retreat.  I know that often is the case that a thought comes and I may interrupt for fear of losing that memory.  Some may say I am rude but it is a fear mechanism and I have less coping skills than I had.
This is why I often avoid conversations.  I either interject, inappropriately, or avoid speaking. 

Some memories get misplaced.  I called my 2nd wife of 24 years by my 1st wife's name for quite some time.  Good thing she understood and did not take it personally.

Patience is a measure that caregivers and friends need to have a lot of during the early days of healing.
I may obsess, I may need a rigid regime as I retrain my brain.  The part of the brain being retrained may be a secondary location to the primary site responsible for whatever function I am trying to fix.  I may never be 100 percent.  I may be slower in recalling.  I may need help to recall.  Names still avoid me and I have to give hints to synonyms for the word or name I am seeking.
Some days I say to my wife, Edie, our grand daughter, what is her younger brother's name?
The wife replies Preston.  I then inform the wife that Preston's picture was posted to Facebook by our daughter.

Now this is 40 years post injury and this is my life and has been since 1974.

Do not do the thinking for me unless I ask.

Make helpful suggestions for me and allow me to screw it up several time until I find a solution to my issue.
I need support, patience and encouragement rather than having you step in the way and do it for me.   Always evaluate my anger outburst after I calm down and suggest a way to alleviate that obstacle.  I also need to be receptive to that assistance.

Find a therapist who understands and can communicate to the survivor in a way that it does not look like he/she is casting blame or fault at the feet of the survivor.

Lets us be realistic, I would not act that way before my TBI, therefore the reason should be abundant that it was and is the fault of my TBI and not out of ignorance.

Friends and loved one I implore you to realize that this new norm may last a lifetime.  We all hope it does not but in 99 percent of the cases, this will be the reality.  Your goal and that of the brain injured is to acknowledge this fact and find a comfortable solution that mitigates or reduces the overall affects that the TBI has on us all.