Sunday, March 9, 2014

This was a really good week or so! And it wasn’t….

Almost every day I wake up in a good mood.  And nearly every day, at some point, I talk myself off the ledge, figuratively speaking.  For someone who is perceived as an even keeled person who doesn’t wear his emotions on his sleeve, this may come as a surprise to many.  But the last week or so really did exemplify the range of emotions and the highs and lows that have become more commonplace.

Years ago, when my focus was on shared parenting, work and reasonable other interests, I had confidence that I was doing these things reasonably well.  Over the last three years, I’ve added all the things Marcia used to do with excellence, as well as caregiving to my routine and I’ve not managed the added responsibilities, nor my old ones, as well as I feel I should.  And if I spent more time dwelling on this, I’m sure I’d spend more time “down” or depressed.  One slip up in any of these areas might have ruined my day prior to Marcia’s illness.  Today, it might not even be the hardest thing I have to deal with on a given day.  One day last week I got some news that was hard to hear.  But on this particular morning I got a later start because Marcia had a harder time than normal getting dressed and needed my help.  While my “news” could have made me feel sorry for myself, I just didn’t.  I’ve seen others feel victimized in similar situations.  Why doesn’t the sting of any particular situation last?  I think of the challenges Marcia faces every day. And on this day she couldn’t tie her own shoes.


This last two weeks were transition weeks in the sports world for our kids.  Despite the snow on the ground and the cold temperatures, our winter sports have ended and the spring schedule is about to start.  Riley, a senior in high school, had her last two fencing meets.  I had never seen fencing in person before Riley got involved and I’ve really loved watching her do something she was really passionate about.  If you’ve ever played a sport in high school or college, you know the emotions that surround your “last game”.  I think I felt it more than Riley did.  Ryan also finished his basketball season, losing in the finals of his in-town league.  Watching Ryan play this winter was a real joy as he played sort of a hybrid point guard/shooting guard (and he wasn’t shy about shooting!).  My lasting memory of his final game was him hitting a 3 pointer at the buzzer (if it had been an 8 pointer, they would have won the game).  After the game, he said that might have been his last organized basketball game.  Both of these “lasts” are a sign that both are growing up.  Too fast.  But they are supposed to start lacrosse this week, and Ryan’s spring soccer season is supposed to start this week too.  If only the snow would melt and temperatures would stay above freezing, we can get outside again.


There was more to these last few weeks.  One of the things I wrote about in my last blog was about “red tape” associated with insurance and disability claims.  Almost five months after first making a claim for Long Term Disability insurance, our claim was finally approved this week.  If anyone saw Seth Rogen testify before congress this week, he captured the financial issues of Alzheimer’s well (if only most senators had stayed to hear his perspective).  Marcia’s Day Center expenses will now be covered, as will the companion that we hope to get started soon. We had also applied for Social Security Disability benefits in January.  Early Onset AD typically gets a fast track for approval, and I have to give the SSA credit, or at least the person assigned to our claim.  They (and she) were fantastic to work with, proactive and assertive to move our application forward.  Both the SSA and I were not able to get our doctor to fill out the medical information so we had to have an independent examination last weekend.  I don’t remember the doctor’s name we met with, but it took about 5 minutes for her to get what she needed (and I assume she will recommend our claim be approved).  Marcia could answer almost none of her questions.  She didn’t know the day of the month or even the year, and she couldn’t spell her name.  Marcia was asked how many presidents of the US she could remember.  She could remember two:  “Barack and Carter”.  There were many more questions on the forms the doctor was supposed to ask, but after Marcia couldn’t spell her name, she apologized for making Marcia cry and said she had what she needed.


I’ll end this entry with a few really awesome events.  One of Ryan’s teachers (Amy F.) emailed me a week or so ago about getting kids from his middle school to support the May “Branchburg Race Against Alzheimer’s”, the second race in Marcia’s honor (I’ll blog separately about that).  Amy had asked Ryan if that would be okay with him, and after a day or so, he said yes.  She put a committee together to plan t-shirt designs and rally the school to support the race.  Ryan spoke to the committee about Alzheimer’s, which is very out of character for him to speak to a group about anything, and it was hard for him.  But I was told the kids were very supportive to him and are very excited to help publicize our upcoming race.  Last week, Ryan’s teacher invited me to the 8th grade assembly later this month, where Ryan will talk to the whole class about the race and Alzheimer’s disease.  I can’t tell you how proud I am of Ryan.  I know this is not easy for him.  And I’m very grateful to Amy for the impact she’s having in Ryan’s life and how she’s really bringing out the best in him.  (Plug for teachers here!  Riley has also had several teachers help her through this, as well as the college application process!)


And as the week ended, Judy Napoli, who is organizing the Branchburg Race Against Alzheimer’s, told me that CMG, last year’s primary sponsor had committed to be the primary sponsor again this year.  We also found out the CMG and family members of CMG are running two satellite races in Houston and Orlando!!!!  CMG is a company I’ve known well for many years and just love everyone I’ve met there.  Their president, Stew Bishop has been a boss, I’ve been a client, but more than that, he’s been a friend and has supported us in our fight from the first day in so many ways.


And finally, Riley was accepted into the physics program at Drexel University this week, with a fantastic merit based scholarship.  I took her to Drexel today for “accepted students day” and both of us came away thinking we may have found the right place for her.  She has applied to 9 schools and heard back from two, accepted by both.  Riley’s entire high school career has been in the shadow of Marcia’s diagnosis and progression.  What she’s done, all that she’s accomplished…..  Wow!  Over the next four weeks we should hear from the other 7 schools, but Riley is very excited about what she’s seeing and reading about Drexel.  And this one is relatively close to home…..

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