A message of thanks...

I started this blog pretty much on a whim.  Most of my early entries (deleted now) were about random things.  But I soon found myself writing more and more about my experiences taking care of my Mom.  It was a natural transition to dedicate my writings to my journey as an Alzheimer's caretaker.

What I never anticipated was the relief that I felt when I shared my experiences, and more importantly, my feelings.  It has been bittersweet sharing the funnier, lighthearted times.  And talking about my shortcomings and disappointments has been both eye opening and painful.  But, mostly, this experience has been very cathartic when I talk about the struggles of each day.

Some days, it truly feels as if I am baring my soul for the world to dissect and judge. And I wonder if other bloggers experience my same hesitation as they hover the cursor over the Publish button.  Is this entry too much?  Do people really want to know this crap?  How can anyone possibly care about this?  I usually end up telling myself that no one will read it anyway.  So, I push the button.

And then this amazing thing started happening.  People began responding and sending me private messages.  Some sent words of encouragement to let me know that I am not alone.  Some were messages of appreciation that I was able to put a face to the disease.  And a few were a combination of both.

So, this post is a message of thanks.  Thank you for sticking with me.  Thank you for being there for me and for caring.  You are all amazing.

Like a thief in the night...

A few weeks ago, I posted some of the myths concerning Alzheimer's. But, in my experience, the most commonly held misconception is that Alzheimer's is simply a disease of forgetfulness. I've heard it referred to as "Old-timer's disease", inferring that it is just part of getting old.  But the forgetfulness is what people originally observe... the tip-off that something is wrong.  And while that is certainly a very big part of the disease, there is so much more that people just don't see. 

We have experienced everything from her accusing me of reporting her for using too many ice cubes to her trying to get out of a moving car.  Twice.  Reality has disappeared.  She asks questions over and over and becomes furious if the answer is not what she believes it to be.  We have become very accomplished liars just to pacify her and keep her calm.  She trusts no one, yet, panics if I am out of her sight. The only thing that we can count on is frustration and anger. She imagines conversations and believes them to be true.  Her few remaining memories are based on a tidbit of fact, yet, remain true for her. The many family portraits on the wall have become something to count rather than a collection of memories.  She has always had a strong faith in God but now believes she is Catholic.  Many of her fears no longer scare her.  Yet, many of the things that have long comforted her now are the enemy.  At this point, the only consistent thing that she remembers is her sister Kathy.  Those memories bring her comfort.

On many occasions, I have compared Mom to a toddler.  But, with a small child there is excitement each day of what the child will learn and acquire. The reality of Alzheimer's is that it is a deadly disease.  It will slowly take away more than her mind.  And instead of excitement, we face each day with dread wondering what this heinous disease will steal this time.
 

My Day...

I have always been able to see both sides of almost any situation.  I was lousy in debates because I would agree with both sides.  I am the kind of middle of the road voter that politicians should seek out (but they don't).  I can empathize and sympathize with the best of them.

But today is Tuesday.  And Tuesday is my day, my time, and my choices.  It is my day to be selfish.  So, why am I here putting up with this?  Because I don't have "plans".  Or, rather, my plans aren't important enough to be considered.  I am here because I understand that things come up that make giving me my day inconvenient.  So, here I am dealing with the very things that make a selfish day necessary.  And I am not feeling very compassionate or empathetic right now.  But I am feeling pissed.   

An Alarming Thought...

Going shopping with Mom can be quite an experience these days.  She tells random people bits of useless information.  Most people smile kindly and keep going.  She has long, one-sided conversations with people who don't speak English.  She waves at kids and tells them thank you when they wave back.    She offers people a nickel if they will take her home with them.  She walks at least 5 paces behind us.  Always.  Today we were in the middle of our second store when I realized that her pants were on backwards.  All silly things in which I can see the humor.

Lately, though, she has been setting off the shoplifting alarms when we leave and when we enter stores.  I have searched her purse and her wallet and cannot find what is activating it.  The stores don't seem to mind when we are coming in but they often question us as we are leaving.  I have a feeling that one of these days we are going to get someone who won't believe me and will want to strip search her.  That's okay by me as long as they put her pants on right when they are through.

Just For Grins...

I had this posted on my Facebook page but it just makes me smile so I want to keep it a little more permanently.

This reminds me of Mom when she wakes up before I do:


One morning she even asked me, "Did you know that you are asleep?"





This is obviously a Disney/Pixar picture from Finding Nemo. 

Darkness...

I am trying so very hard to find positive in this entire situation.  But, tonight it's just not working.  I am feeling lonely and sad.  I am in the midst of people but I feel invisible.  I know that I am loved but I feel betrayed.

I know that this is not about me but I want to be selfish.  Where is my caretaker?  Where is my support?  I know people have their lives and their issues but just a kind word or an acknowledgment that I am here would mean the world.  My daughters do an amazing job of making my life easier and giving me a reason to get up and embrace the sunshine each day.  They have been forced to give so much.  They have given their childhoods.  But when I'm in my deepest, darkest place and I need them the most I cannot ask for more and they do not offer.  They have already given too much.  And I am alone.

Sometimes...

Sometimes, I wish that I wasn't always so eager to volunteer.

Sometimes, I want to grab my children, run, and never look back.

Sometimes, I wish this horrible disease would just stop.

Sometimes, the cruelty of this disease is overwhelming.

Sometimes, it is so sad that it is funny.

Sometimes, I want to go back to when this disease was just starting and I didn't think that it could get worse.

Sometimes, I wish my kids were able to remember their grandmother when she wasn't angry.

Sometimes, I would like to be the person that I thought I was.

Sometimes, I need to remember that we do what we have to do and that there is no other choice.  

Sometimes, I want to scream but I say nothing at all.

Sometimes, the guilt is the hardest burden of all.