Mike: Moving Forward…most days

September 12, 2011

Mike, Veterans Benefits

How could I ever have been prepared for the reality of living with brain injury?  I’m a girl who doesn’t do grey areas in life.  Or anything.  It’s black or it’s white.  It’s literal.  It’s unequivocal.  Brain injury…nobody knows about it or what the outcome will be.  It could be this or it could be that or it could be the next thing.  The only thing black or white is that it exists.  The rest of the brain injury landscape is grey.  Very, very grey.

Let me explain.  You are marching along in recovery and you THINK you are making progress.  Suddenly, inexplicably, something happens that leaves you scratching your head in wonder.  Like a day where the sun in out save a couple dark clouds overhead…and there is thunder and lightning and rain coming out of those few clouds.  And not the other areas around those clouds.  Where it is raining over your house and your neighbors…but not up the block and back a street.  (which it is doing right now, providing me with a pretty good analogy!)

For example.  Last night Lara visited.  Mike was beyond thrilled to see his “baby girl”.  He knows she is his daughter.  He inquired where she was sleeping.  He could remember that I have showed him every time we go past where her apartment is.  They had a lovely visit.  She had something to carry to the car that was heavy and Cameron carried it.  When he came in Mike said “Thank you for helping carry that out to the car for my sister.”  When we told him that wasn’t his sister it was Lara, his baby girl, he argued that no, it could not possibly have been.  Perhaps his sense of time was missing just then as a few hours prior he had been at the street fair with his sister.  He then told Cameron to go upstairs and get his brother Mikey.  Well, Mikey is Cameron’s uncle…Cameron is our grandson, Mikey our son.  We had to explain that…and received puzzled, puzzled looks as our reward.  Sleeping patterns have begun to enter the twilight zone again as he seems to sleep fitfully from 10 or 11 until 3 or 4.  He’s up every hour on the hour to visit the bathroom.  Between 3 and 4 he falls soundly asleep and then wants to sleep til noon.  However, by 2 or 3 in the afternoon he is wanting to sleep again already.  This might be swell except for the small fact that my day starts around 6.  Maybe 7 if I get to sleep in.  3 or 4 hours of sleep a night is pretty draining and I can vouch for it with the suitcases under my eyes.  Most nights lately he wonders where we are again and where we are sleeping and when I explain home, we are at home, he wants to know when we got here.  SIGH.  Physically, other than the fatigue, which makes me worry something is again wrong with his heart, his cough is increasing in frequency.  Also making me worry something is wrong anew with his heart.  I am asking Santa for a crystal ball…or xray vision or something so I can KNOW if something is wrong!

On the other hand, this morning  Mike knew the word for creamer and that he needed it for his coffee, required minimal queuing to be able to find the right bottle in the fridge, knew the word for sugar and again, required minimal queueing to find it.  This was big stuff because the word for creamer and the word for sugar have eluded him until now…and the amount of queuing to get him to follow instructions to find it included my standing at his side and giving the queues as I guided his hand to the sugar or creamer.  And his appetite has been increasing.  His voice is unchanged (there is none).  And the scar from his bedsore is still…well…..sore.  But he’s alive and functioning so much better than was predicted and I remind myself of that and what we have to be grateful for every day.

Things are moving along on our VA stuff.  I’ve gotten myself entered into DEERS so I’ve got coverage if something happens to Mike.  The claims are almost fully developed for Service Connected Disability.  Of course, the wait will begin then until they get rated, but I feel guilty even remarking that there is a wait given the number of Agent Orange vets who have not had their claims positively acknowledged for 20 years but now are being looked at.  So the queue is huge.  And there’s a lot of impacted, sick vets getting their due.  And it’s time.  So we will wait our turn.  We DO have an appointment for Mike with a PCP doc at the local VA clinic and today I got the paperwork in the mail saying his health care priority rating was 5.  Standard stuff.  With one exception.  There’s a catastrophic disability exam that was explained on the paperwork that changes the rating and it looks like it might apply to Mike so tomorrow I’m calling Wilkes Barre to explore that possibility.  If so, I’m setting up an appointment for that ASAP.  It would mean no copays for prescriptions or visits to the VA clinic.  And, since I’m spending a heap every month in prescriptions it would be a most welcome assist if they picked up some of Mike’s!

All in all, we’re hanging in there.  Wishing the Autumn weather would come on and begin.  We’re tired of sticky, hot and humid.  We want to walk.  Well, I’m telling myself we want to walk.  Mike does want to.  I don’t.  I need to more.  I’m telling myself we are doing it for him…hopefully I can trick myself into JUST DOING IT!


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