Play the Ball Where it Lies

Last summer we attended the PGA Championship in Atlanta.  Over the week of the tournament, I watched as my husband had difficulty recalling names of friends.  I noticed how he wanted to be sure I was by his side...just in case, and I noticed how the crowds made him nervous.  Events like this, which are out of the ordinary for our everyday life, seem to highlight the changes in my husband's functioning.  When moments like this surface, I often find myself wishing that things could be different.  But wishing isn't going to change anything, and it expends energy that could be used for more productive activities.

As I walked the course and watched several days of great golf, a common theme surfaced in my mind:

"Play the ball where it lies."

If a golfer drove his ball into the rough or a trap, he had to choose the right club and make adjustments in his swing to get himself out of whatever precarious situation he found himself in.  The golfers didn't "give up" when the going got tough.  They didn't ask to move their ball to an easier spot in the fairway.  They used the tools they had and figured out a plan to get themselves back into the fairway or onto the green.

Likewise in my life, when I find myself in the "rough," I must "play the ball where it lies" by making adjustments in our lifestyle and choosing the right tools to try and keep us moving along in the fairway of life.  My sons and my husband are depending on me to navigate us through these tough times.  Giving up is not and option.  Complaining about it doesn't solve anything.  I simply need to take this lesson from golf and "play the ball where it lies."

2 Year "Anniversary"

Wow, it's been such a long time since I've updated anything here.  December 10, 2012, was the 2 year anniversary of my husband's diagnosis.  As you can imagine, I've been very busy handling life.  In some ways, we are better off than we were in the scary, tumultuous, early days of this journey.  I feel much more "stable" now, and I've learned a lot about concussions, CTE, dementia, insurance, disabilities, care giving, health care, Social Security Disability Insurance AND myself in the process.

Our family has slowly adjusted to our new "normal."  Our sons have all accepted that our home life is different, yet their relationship with their dad has been strengthened.  They now have a father who is home and always present.  Before, he was working all hours of the day, and they hardly saw him during the week.  The time they spend with him is a blessing.  The health care routine for my husband is now established and is working well at the present time.  I have adjusted to the fact that I am the bread winner for our family and care-giver for my husband, and I have figured out how to manage our lives given our new parameters.

Our oldest son graduated from high school in May and started his freshman year of college at University of Georgia.  Our middle son started driving this year (!), and our youngest son in on the brink of becoming a teenager.  In May I will officially have three teenage sons under one roof!  That thought used to scare me, but after what I've been through in the past two years, it pales in comparison.

I have a lot of information to share about our experiences over the past two years, and I will post them here as time allows.  I hope that some of the these lessons will be helpful to others who are caring for a loved one suffering from post-concussive issues.  I have forged many new friendships with other wives of former NFL players who are caring for their husbands with dementia related conditions.  The scary part is that I believe there are so many men out there who don't realize their problems are a result of concussion injuries incurred years ago as football players.

Until next time...I'm keeping the memory alive!

August 2011 Update

Time Flies, doesn't it?  It's been months since my last post, yet the minutes, hours, days, weeks and months seem to be blurred together.  We are further down the road with my husband's condition.  I've been through the difficult process of navigating the health care system.  Searching for the right combination of doctors, medications, treatments and therapies which can help my husband be the best he can be.  We saw three or four doctors before finally finding the "right" neurologist whose specialty is the type of cognitive degeneration which my husband is experiencing.  Our next step is going to a cognitive therapist.  We haven't been to the first appointment, yet, but will update to discuss how this helps...or not.

I'm realizing that there is so much that doctors DON'T know about the brain.  It is still a guessing game for so many questions we have.  While they can "rule out" certain conditions, they can't accurately test for every possible condition.  For example, Chronic Traumatic Encephalopathy can only be accurately diagnosed post-mortem, which is a sad reality.  This is the condition that we belive has led to my husband's decline in cognitive functioning, but we may never know for sure...  However, what I have come to accept is that I may never have all the answers to all my questions, but I must deal with reality as we know it and make the best with what information we do know for sure.

Another milestone has been going through the process of applying for social security disability.  Fortunately (or maybe it's unfortunately?) my husband's condition in under the "Compassionate Allowance" category of conditions which usually guarantee approval the first time you apply.  While I am thankful for the benefits, I am in the process of seeking an appeal for a denial of reconsideration of benefits.  I am trying to gain benefits for him further back in time than the Social Security Administration has approved.  Perhaps I'll post more concerning this process as time goes on.

I also went through the process of applying for disability benefits through our private insurer.  Thankfully, we were able to receive full disability benefits all the way back to the time of onset of his condition.  That, too, was an exhausting process, but worth the time and effort to see the end results.

Overall, I am stronger today than I was 9 months ago when the devastating diagnosis was revealed.  But I'm also more aware of how unprepared I am for the unpredictable future with my husband and our boys.  I'm bracing for a storm, and trying to manage our resources as best I can. It's heartbreaking to watch the one you love fade away right before your eyes.  The only thing certain is that things will continue to change ~ which makes it somewhat overwhelming at times. I'm trying to take one day at a time and enjoy the moments in the present without worrying what tomorrow will bring.

Faith, Family, Friends...the three things that keep me standing when I have no more strength of my own.

To be continued...