Sunday, August 5, 2012

June – back to AD

I'm not terribly worried about Marcia driving around Branchburg at the moment.  I drive with her from time to time and she's fine for the moment and her neurologists concerns about driving with AD aren't yet a concern for him.  Driving tends to be an issue with AD sufferers who are disoriented and this isn’t a concern for Marcia.  But I am troubled by this.  There could be legal issues if she causes an accident, and I don't know how much longer she'll be able to safely drive.  She likely will be tested at our next visit to NYC in early August.  General thought is that this shouldn't be a decision a spouse or family member should make, but should enforce once the decision is made.  Would like to move to a place where walking is more of an option, but this is about the worst time to sell a house…..

I've come to the realization that AD is happening/progressing and life is going to be very, very difficult.  Aside from the more obvious speech difficulties, Marcia sleeps more than usual.  Sometimes I just stare at her when she’s asleep with two emotions.  The most prevalent is how does she handle all that’s happened to her in the last year with such strength and determination?  The second I’m much less proud of.  I look at her and see her slipping ever so slowly away. 

I had a conversation with a college friend, Rich, and his wife Tuesday night (my college roommate’s mother passed away and we went to the viewing).  Both had parents with AD and the picture they paint is just awful (and not much I didn't already know).  They weren't trying to bring me down, just being realistic.  It's bad enough when one only has the spouse to worry about, but the kids occupy a great deal of my thought time. 

Cindy (Marcia’s sister) shared conversations she had with Riley in Tennessee a few weeks ago.  While these experiences with Riley were helpful to hear, they were heartbreaking.  I can't sort out behavior that is Marcia related, or what's 9th grade girl stuff, or both.  What I SEE in her isn't atypical behavior from what her friend's mothers tell me about their daughters.  She's socially active and her grades are great.  Ryan, however, is a concern.  I've seen changes in him that worry me a lot.  He's withdrawing socially and with sports, he's not as enthusiastic as he once was.  I spoke yesterday with his teacher and guidance counselor.  I'm also getting a lot of advice from many people.  And the truth is, opinions are many and often in conflict.  I have been hoping to get through the school year before getting too detailed with what's happening to their mom and what is likely to happen.  Is this a good idea?  I don't know, but it feels right to me.  I do need to talk with Riley and Ryan to let them know some basic information, that I'm there for them, and that I can provide someone for them to talk to.  Neither has given much response to me on the first two, so I'm not sure about the third point.  It might be something I'll regret, but Riley is doing very well in school and she has finals coming up in a few weeks.  High School grades are important.  It worries me about making this a more front and center discussion right now.  I will provide adult access to both, either through the church, Shannon (she tried with Ryan last weekend to get him to talk about sports) and/or professional counseling.  Ryan's guidance counselor gave me some good advice yesterday for both of them, and doesn't think waiting a few more weeks, based on what we see and know, would be a bad idea.

As far as Marcia is concerned, she recognizes things are not good and getting worse.  She recognizes that she can't write well.  She relies on me to help finish her thoughts when I am around.  But she also doesn't want to be a burden, doesn't want pity.  Not being able to talk about AD is harder on me than I thought, but I think I would feel the same way she does if roles were reversed.  Medically, everything is going fine with her cancer treatments.  She's been checked out by her doctors and her incisions are healing well.  They call me to explain things when I can't go (and I won't be able to do many radiation treatments).  Marcia can go to some of them herself as the medical center is right near Healthquest, but I will arrange Adele, Jill, Shannon and Christine to go as much as possible

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