Thursday, 31 May 2012

Detective Advocate....Caregivers...That's You

At the outcome of any brain injury the role of the caregiver is paramount to the quick diagnosis and treatment of the afflicted loved one.  My hat goes off to these unsung heroes whose job becomes overwhelming, challenging, and fraught with anxiety, tears and eventually resolve.  Your responsibility is nothing less than pure unadulterated, selfless, sacrifice that very few are either prepared or trained for.  Thusly this book will try to alleviate some of the frightening and often confusing factors that plague the caregiver.
I feel there are two roles amongst many that stand out namely the detective and the advocate.  Both roles go hand in hand as you try to disseminate and translate what the doctor has told you and then try to advocate for your loved one ensuring they get the best treatment and rehabilitation possible.  At this juncture I’d like to say good luck!  I say that with some cynicism because chances are, depending upon your coverage, you’ll be banging your own head against a wall to a point of becoming brain injured yourself.
            There is a progression one goes through with regards to any traumatic injury to a loved one.  There is the shock where the world seems to spin out of control.  The doctor may say things to you that you can’t comprehend or understand and or you will be lulled into a false sense that all is right with the world and the loved one will be just fine in a few days or weeks.
            Initially your world will spin and finally after the shock wears off there is a tendency to rely on the words of your doctor.  BIG MISTAKE!  I do not want to cast any dispersions on the medical community, however, many are not prepared nor educated on brain injury in general and furthermore the role of a neurosurgeon is that of patching your loved one up and not that of educating you, the caregiver.  This is why your role is so important.  You have to ask the pertinent questions.  What is in store kind of questions?  Where do we go from here kind of questions?
            One should never downplay any kind of brain injury.  Look at me.  I had 7.5 hours of brain surgery that should have sent up red flags to all the medical staff.  I should have received rehabilitation.  I had a traumatic brain injury where the x-rays show that my brain is atrophied and the left hemisphere is tilted.  It is difficult to explain this clearly, but let me give it a try.  If your loved one receives any surgery to the brain….that is a serious invasion of that organ and therefore it is traumatic in nature and follow up is imperative.  If your loved one has surgery and shows no outward impediment, like memory loss or speech or mobility problems, the injury is still traumatic and should still be treated seriously and follow up is imperative.  If your loved one receives trauma to the face, skull, is knocked out or suffers from whiplash, then the injury is traumatic and should be treated equally to one that requires surgery.  If the trauma is a concussion, a broken nose with no loss of consciousness, the injury is still traumatic and follow up should be imperative.
            In other words all trauma to the head or neck is of great concern and one should not jump for joy if the injury seems less than spectacular in nature.  Never downplay any trauma to the head…period.
            You may run into some detractors in the medical community that say you are over reacting.  Give them a copy of this book because they obviously have their heads up their rear ends and need a lesson in the reality of dealing with the long term affects of brain injury.
            Your second role is that of a detective.  Besides finding the resources available within the community there is yet another important aspect of the detective and that is doing the boring stake out.  It is being the quiet observer of the loved one after the brain injury.  Taking notes and comparing them to the mental ones of how your loved one behaved prior to the injury with those new notes taken after.  You have to paint a picture that can be presented to your doctor spelling out in detail, the differences you have noticed in your loved one.  A doctor cannot examine your loved one in a 10 minute office visit and discover all that might be wrong with your loved one.  Your observations will be of great assistance to getting the right rehabilitation.  Some of the traits may show up immediately after the trauma while others are more transparent and show up gradually over time.  Your loved one will have a moment of momentous healing shortly after the injury as swelling subsides.  Then the finer details of the injury will present itself.  I had anomia prior surgery, couldn’t do math and had quite a temper.  After the surgery those aspects reduced or went away.  The obsessing, the short term memory and to a lesser degree the anger subsided or remained constant in nature.
            Your observation of the changes as listed in the chapter signs and symptoms will make a big difference in the overall outcome of your loved one.  In the less obvious injuries, the behavior may be an increased frustration assembling products.  A sense of mental exhaustion that requires an increased amount of sleeping may be one of the signs.  Depression, lower level of concentration at school or work may be another.  If the performance at the work place or in school decline then one needs to look at testing and follow-up with a specialist.
            I have given a list in the chapter “Getting Help After Brain Injury” however one must know finer details which I will cover here.  Recently on any one of those many trauma style T.V. shows, I often see brain injury patients who show bleeding on the brain but require no surgery.  The prognosis is that he/she will be fine in a few days and as long as there are no medical complications like seizures we’ll (the hospital) will release the patient.
            No one asks the doctor what the long term affects will be.  Let us examine it a little closer.  The loved one suffered a trauma that caused bleeding on the brain.  It stopped and all is right with the world.  We know that brain injury can occur at microscopic levels and here on the MRI or CAT scan we see bleeding which means a little inflammation, contusions usually located in two regions of the brain.  If the front is bleeding then there is a good chance that the exact opposite side will be injured to a lesser degree but nonetheless still injured.  If there is an obvious sign such as blood then the injury is very serious regardless what the doctor states.  If it was your brain and it was bleeding you would take it more seriously than just a cursory glance.  You would probably be deeply concerned and demand all tests available to determine the next preferred action to take in the full recovery of yourself.  This will take 2 neuropsychological tests spaced between 6 months and maybe a third at a year and a fourth at the 2nd anniversary.
            If there was a procedure for post care with regards to all brain injuries the following would occur.  The patient would not fall through the proverbial cracks.  The divorce rate with brain injured would decline by 40% to the national average of 50%.  The crime rate would decline.  Violence to females and children and people in general would decline.  The prison population would decline by up to 90%.  The street crime and the homelessness situation would be greatly impacted and reduced.  With a little preventative education these levels would fall even further.  This means fewer murders, less alcohol and drug dependency and the savings to society would be immeasurable.  In Canada alone the savings would be well over 2 billion dollars annually.
            In the mean time we have this book to assist those who continually fall through those cracks and end up becoming one of those horrific statistics.

Once your loved one has been diagnosed with a brain anomaly of any kind, demand answers.

1)      I am informed that brain injury may occur at cellular level therefore scans are insufficient and I would like additional tests.
2)      I would like a neuropsychological test similar to the Structures of Intellegence (SOI)
3)      You want tests to determine their Figural, Symbolic, Semantic, Comprehension, Memory, Evaluation, Problem solving, Creativity, Arithmetic, Math, Reading, Reading Readiness, Reading Concepts, which is even broken down further to the following:

EFU Visual discrimination-judgement skill

CFS Coping Skill-difficulty dealing with change-eg furniture rearranged, papers moved dishes rearranged etc.

CFT Locating and transferring skill, locating objects, reading maps transferring information from one idea to another ie) finding car in parking lot, locating papers, clothing, keys, wallet etc.

NFU divergent thinking- may display an inability to require an alternative point of view.  May obsess or simply quit the activity.

MSUv and MSSv Visual memory skills

MSU & MSSa Auditory Memory Skills

CMUr Vocabulary

The test results may come back in medical jargon the likes you will have difficulty digesting let alone interpret and therefore it is incumbent on you to ask the tester, usually a neuropsychologist, the following questions:  What does this mean?  How will this impact of the patient with regards to daily living?  What can we do to improve on this weakness or disability?  If they cannot tell you what can be done then run don’t walk from his office and find someone else who can.  There are definitive exercises that will improve every aspect of the brain.  After a brain injury, the sooner rather than later you begin the rehabilitation the quicker the recovery.  The brain can and will try to heal on its own.  It will grow new neural pathways around the damaged area and may utilize another secondary region to replace the lost or damaged area.  Naturally there are no guarantees on the final outcome and it may take a long time for the healing to take place.  My 1978 and 1995 tests show that my disability is permanent however I adopted coping skills that have diminished those negative affects.  If I had been treated with rehabilitation and specific treatment focusing on the weak areas, I may have not experienced many of the setbacks that prevailed in the next 25 years.  I may have had better control of my anger if I was made aware of my weaknesses early on.  I would have adopted better coping skills to reduce those frustrations born of a damaged memory.  My auditory dyslexia traits would have indicated my inability to listen properly which caused me to lose my kids because I forgot where they said they went.  Now that they are teenagers I find there are times I wish I hadn’t learned how to remember where they went and would lose them again.  O.K., so I throw in a little levity in a deep subject but I often wonder why I was not informed and placed my children at great risk as a result of not knowing.  A self imposed coping skill evolved from this fear of where the children were by having them tell me and then write down the info so that mom would be satisfied.
            You have to be assertive and virtually move mountains.  If the alleged injury is the fault of another person then a suitable lawyer trained in brain injury needs to be contacted.
A small warning should prevail in the form of common sense when your loved one is tested and that is some and not all results may be a related to the actual brain injury. If you know the individual had learning disabilities, was poor in speech, math or other areas of education then one would be jumping to conclusions if after this first test all negative results were thought to be a direct cause of the brain injury.  How can one tell if it is or isn’t a cause of the injury?
You really can’t, however it is important to factor the past behavior of the patient into the mix so that a realistic view emerges.  I may have had a hearing difficulty before the injury until I look at the region of the brain affected and what its primary functions are and compare that with the results of the test.  It is pretty basic police work that your doctor should be able to perform if they are brushed up on the brain’s basic functions.
Here is a picture and the definitions follow.

                   Frontal Lobe
Initiation                                                        Smell
Planning/anticipation                                   Motor Planning
Follow through                                              Personality
Impulsivity                                                     Emotional (Affect)
Judgement                                                   Speaking (word Finding)
Reasoning                                                    Integration of thought and emotion
Abstract Thinking                                         Self Monitoring

Temporal Lobe
Understanding Language

Parietal Lobe
Sense of touch
Differentiation: Size,Shape color
Spatial Perception
Visual Perception

Occipital Lobe

Note: The Parietal and Temporal Lobes have a left and right side.
Many doctors may try to downplay the brain injury for many reasons including lack of funding and long waiting lists in Canada, to poor coverage or that some insurance companies may refuse to cover such testing.  One must factor the motivating factor of the doctor.  It may not be in his best interest to refer you.  The days when doctors put the needs of the patient first are long gone and profits take precedent.

If your loved one was injured in a MVA or at work then your chances are better in receiving the utmost care and prompt response to your request for testing.  This is why a lawyer trained specifically in Brain Injury is critical in receiving both the best treatment and of course compensation.  One cannot expect to discover all the injuries and deficits overnight.  It may take months and months and still complications arise.  Your loved one may go home and be completely fine and then 2 years later, scar tissue grows and seizures begin.  Do not think for a moment that there is clear sailing ahead and end up shooting yourself in the foot when in 10 years post original brain injury, a complication occurs.  Unfortunately you took the buy out or your doctor’s word and the case was closed 2 years post injury and you have no legal recourse and the medical costs wipe you out.

Will this injury cause scar tissue to build up?
Will this trauma cause an onset of Parkinson’s condition (not disease)  caused from trauma to the lower brain stem.
Will this memory problem cause an onset of Alziemers disease?

Most doctors will say the injury will not cause this.  Unfortunately for us there is little support either way.  I was going to name this book “The Final Frontier” and truly it is.  We may have a better understanding now than ever before but it is far from being fully understood.  The veil of uncertainty has definitely been lifted and we now appreciate the fact that what once seemed hopeless no longer holds true.  The brain begins to compensate and heal immediately after the trauma and in many cases reverses several of the conditions caused by the initial injury.  We now know that new neural pathways grow and bypass or re-attach to the damaged region.  We know that increased oxygen to the brain improves its healing properties and now even employ the use of hyperbaric chamber to assist in recovery.

The problem lies in the approach.  We should be tackling brain injury before it occurs.  We should educate in every area of life where brain injury may occur such as sports, work and most important in motor vehicles so that we can prevent the injury before it happens.
We should draw attention to the potential of the brain injury by reclassifying all head and neck injuries as that of a potential brain injury.   We should reclassify whiplash, concussion, broken face bone, jaw, nose, and skull as traumatic brain injuries and scrap the term mild or moderate brain injury.  By retraining the medical staff to be cognizant of the potential for a brain injury and raising its likelihood to the forefront, one might reduce the misdiagnosis of it drastically.  I cannot for the life of me understand why in the 20th and 21st centuries, we are even having this conversation?  By diverting away from the whole to a part of the body we risk death.  This was taught to me in first aid and we could lose our first aid ticket if we didn’t treat the whole body and diagnose on the side of the worse case scenario.  In the hospital we throw out that approach and become desensitized to the potential and would be mocked if we tried to treat beyond the obvious.  It’s a broken nose.  The treatment for a broken nose is this.  Let’s not assume that the sinuses may be damaged or that the brain and the frontal lobe may have been seriously compromised by the force that was sufficient enough to break a facial bone.

It is impossible to list all questions without knowledge of the individual brain injury however there are crucial ones you should have in your arsenal and they are:

1) How severe is the brain injury?
2) Where is the damage located?
3) What brain functions will this injury affect?
4)Who would you recommend as a referral for follow up treatment?
    (Neurosurgeon, Neuropsychologist, rehabilitation center, family therapist, support    groups for survivors and caregivers)
While you wear your advocacy hat, one should research the referrals made to you and don’t hesitate to ask the specialist you’ve been advised to see to supply his or her own references.  Ensure that some are from patients.  Most agencies and doctors will gladly make available a list of former clients/patients who have benefited from their treatment programs.  If not go online and enter a chat group and see if there is anyone who has used this specific doctor, therapist or center and make a decision from that.
Some therapies, or medicines may assist in treatment but the side affects may bring about another set of circumstances.  Research the drugs or treatment before embarking on a prescribed regimen that you may possibly regret.
I was recently prescribed by a doctor a medication to aid in quitting smoking.  The medication is not recommended for stroke victims.  Good thing one does research or this book would have never been written and I’d be pushing up daisies.
   Do not fret if one treatment fails or a medication causes a bad side affect.  Each patient will react differently and brain therapy will be fraught with many such set backs and then many more gains.  One has to experiment in a safe manner and by arming yourself with information you and your doctor can make an informed decision on what path to take and truly hope for the best.  Remember this is new ground for both of you, the patient and in most cases for the doctor or therapist.  What works miraculously for one may be the antithesis for another.  I have mentioned Bob in previous pages and he is the flagship for this trial and error.  His medication has been altered more times that I can count.  Sometimes the adjustment is great and Bob responds well, with a new zeal and energy and progress is made in his therapy.  The next adjustment sets him back several steps.  He becomes lethargic and depressed wishing he was dead.  The next month the drugs have been balanced and he is perky and full of humor.  It is this dance of healing that we must continue to engage that can at times seem hopeless.  It is two steps forward and one step back and when you entertain the prospect of dealing with a brain injured person you better like a lot of dancing because you are going to put Fred Astaire to shame.


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