Saturday, May 14, 2011

At A Loss

Alzheimer's sucks.  Let me repeat, in case you missed the gravity of what I'm saying...ALZHEIMER'S SUCKS!!!  It's the most unfair, cheating, infuriating, painful, emotionally draining, leave you feeling helpless disease I can think of, and that's just for the family of the Alzheimer's patient!  Unlike cancer, where at least some of the time the patient has a fighting chance, there is basically nothing to do, but watch your husband, wife, father, mother, sister, brother, neighbor, friend, whoever, slowly drift away from you.

My dad (JB) was diagnosed with Early-Onset Alzheimer's in November 2010, at the age of 59.  Our family just (and I mean in the last few weeks) decided that it was time to let those around us know about the diagnosis.  We'd done the "grieving on our own" thing, and knew it was time to "come out of the closet", so to speak, to embrace the support and love of our extended family and friends.

While those of us closest to my dad knew (or suspected) that something was wrong long before he was diagnosed, he refused to acknowledge what we were saying when we would voice concerns.  Over time we made excuses for him, put it on a back burner, and hoped that he'd come out from whatever cloud he seemed to be under.  But, alas, when a memory loss specialist confirms your worst fears, it's difficult to keep making excuses and ignore the pink elephant that's taken up permanent residence in the room.

As we've gone through 6 months of trying to adjust to this new reality, we've dealt with it differently.  My husband, brother and I are a daily combination of sad, angry, scared, and frustrated, and yet we want to spend every moment we can with my dad, hoping to suck up as many JB-isms as possible before it's too late. While we can step away, to a certain degree, my blessed mom has been front and center through this whole process.  She notices every little change and misstep, deals with her own feelings of anger and loss, and also deals firsthand with my dad's denial. 

I can't say I blame him - I'd love nothing more than to pretend that everything is fine, but I realize that denial won't help anyone...it will just make things harder to deal with down the road.  We can choose to ignore the fact that during any given conversation he'll ask the same question at least 3 times, that he can't follow a tv program without having to ask "What's happening now?", or that he had to make up a cheat sheet to carry in his wallet with his name, address and phone number on it, but in the end, there comes a point when you just can't ignore it any more.

Meanwhile, JB still doesn't seem to want to admit that anything is wrong.  He continues to make excuses, gets defensive, and walks out of the room when we try to have a discussion about what's happening.  Again, I can't blame him, but as one who has watched the symptoms progress, has listened to my mom in tears because she feels helpless, and has had numerous infuriating conversations where JB makes no sense whatsoever, I am beyond frustrated. 

I know that things are only going to get worse - such is life when you're dealing with Alzheimer's.  And so, I will continue to grieve, continue to support my family as best I can, and continue to wonder, with no small amount of regret and sadness, what the future will hold for us.

3 comments:

  1. Oh, friend ... my heart is breaking for you. I'm praying for you and the family ALWAYS. I know this road is going to be tough and just know that I'm here for you!

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  2. I love you rinnie, stay strong!

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  3. Erin, What a heart breaking ordeal you have in front of you. I am so glad you have a wonderful husband in Ben. Lean on those around you and your faith. xxoo

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