Sunday, June 3, 2012

The LBD support group on the web.

My wonderful wife built my blogs for me and encouraged me to write about my experiences with Lewy Body Dementia and my Nay career.  My neurologist agreed that this was a good exercise for my brain.  I enjoy writing about what is going on in my brain.
I have also gained a large support group from other bloggers in the LBD community.  I read many of their posts and have learned that many of you are going through many of the things that I am going through.  I recently read a blog about the feelings of a husband with LBD as written from the wife/care giver's view point.  This blog is such a strength and help to me.  Recently, I read about her husbands feeling and fear of leaving or her getting rid of him.  As I read that blog, I thought, I have had those feelings too.  Not directly, my wife wanting to get rid of me.  But more the idea of being such a burden that I can't see anyone wanting to be around me.  Now, let me first say, logically, I know my wife will never feel that way.  But, in the hollows of my dementia, when I am not totally connected to reality, especially at night, I get lost in my own insecurities.   I really belie e that is what many of us experiencing the uncertainties of dementia go through.  We are insecure!  The way of life that we lived, built, dreamed of is now slipping from our fingers and we can't stop it!!

Like I wrote earlier about feeling lost in the gun store, a place I normally feel completely at home in, I am insecure in many situations in my life.  Driving is becoming a challenge.  I can't drive as long as I used to.  And as a man, I think it is my job to do the driving.  The reality is, I really need to let that go.

There are other issues too.  Again, I have written about my fear of dealing with the everyday budget issues.  When my wife starts to talk budget, I have a fight of flight reaction!  That's not normal for me, but it is what it is.  The fact is, I am so insecure in my own abilities that I retreat into my own  mental happy place.   When I can sleep, sleep is my friend.

So, while I am logically sure my world will remain as close to the same as it can, I am constantly reminded of the changes, my own mental and physical changes, and where all this will lead me and my wife.   This is a difficult topic for me to open up about.  Yet, that is what this blog is supposed to be about.  

So, thanks to my other blog support group members.  You are a great help.  And thanks to my wife and family.  I know you are going through even more grief and worry than I am.   But, with GOD's help, we will get through this.

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