June 2011 – School’s out

Now that school’s out, I thought this would be the best time to talk to Riley and Ryan about AD.  Neither really knows much about her breast cancer, and being as this is an unlikely long term concern, I’ve decided there’s no good that can come from this – for now.  Not until I understand where they are mentally.

Riley:  asked her what she knows about Alzheimer’s.  She’s 15 and intranet savvy, so she knows everything!  The worst part about the intranet world is not everything you read is true.  Riley told me “I know I have a 50% chance of getting it (early onset AD)”.  I’ve read the same article she read, and talked to an early onset specialist from the Denville (NJ) Alzheimer’s office, and Marcia’s neurologist and the fact is, her chance of getting AD is “slightly more elevated” than anyone else.  There is a gene that does exist which almost guarantees one would get AD, but it’s very rare and every generation, and multiple siblings within a generation have AD.  That’s not the case.  When I told Riley this, she was incredibly relieved.  Can you imagine a 15 year old carrying this thought around with them, and then the relief that your life is not predetermined?  As a parent, I felt I was doing the right thing by shielding my kids from the nasty details of AD.  In Riley’s case, I failed her by not talking sooner.  I did right be getting her the facts.  Just knowing she has ANY chance of suffering from AD at some point has had an unbelievable, life changing impact on my life.  I have to be part of the solution.  I have to help raise money to find a cure so my kids won’t ever have to worry about their future.

Ryan (almost 10):  his world is not so technology oriented (though he’s ten times savvier than me) and he doesn’t really know what AD is.  He just knows something isn’t working right in her brain and she can’t speak very well.  But his stomach aches are more frequent than normal.  I spoke to the early onset specialist about Ryan too.  Stomach aches one way that kids deal with stress.  She also referred me to the Alz.org website (which I go to often), where they have a wealth of information about AD, including a section on how to talk to teen’s about AD.  Ryan isn’t quite a teen, and most of the material starts off with, “Alzheimer’s is a fatal disease….”  Can’t imagine that will make his stress any less than it is today.  I was also encouraged to use my best judgment with both kids, as “there is no right way” and “no one knows your kids like you do”.  She simply encouraged me to engage with them and give them as much as I think they can handle.  Ryan gets these stomach aches a couple times a month.  His diet could be better, and that could cause stomach aches.  Fever often accompanies his stomach aches, which would not be stress.  I asked him if something was bothering him and he said “like what?”, very surprised at the question.  The truth probably is that Marcia’s speech is causing him stress.  He just isn’t making the connection.

Interestingly enough, talking to kids, getting them into counseling, and other things is the most polarizing advice I get from many trusted people.  And this is the single most dominant thought on my mind right now.  Am I doing enough to help Riley and Ryan cope now and in the long term?  I think I’ve weighed the advice I’ve gotten (and hope to continue to get) from family and friends.  While I’ve chosen the path I’m taking right now, I’m not sure it’s the right solution.  I really listen to all perspectives from those I know who also have the best interests of me and my family in mind.  What I’m doing (and not doing) seems right to me.  At least for now.