Random thoughts...

A few random thoughts today:

I am fighting this sadness for all that I am worth.  I want to look forward to my days again.  I feel guilt each time I look at my mother and realize that I am looking forward to her being gone.  Yes, I want her to find peace.  I want that so much for her.  But, selfishly, I want it more for my family.  And, no matter how normal that feeling is, it isn't something that is easy to accept. 

I yearn to be active once again.  So much of my life has to be sedate and non-exciting just to keep Mom in a non-agitated state.  Today I tried to hang new curtains. I became so frustrated with her that I stopped and furiously returned to the love seat and my laptop. The love seat that will never recover from my ever growing butt's pressure and the laptop that has become my outlet to sanity.

Each entry I make here is about my perception of this disease and how it effects my life. I have been kicking around the idea of writing an entry from Mom's point of view.  And that is as far as I can get.  This disease is so random that I am not sure Mom has a perspective.  Maybe I need to explore her possible feelings towards us... how random and erratic we must seem to her.  I need to think on this one.

Mom's hoarding has become worse. She goes to the kitchen  a dozen times an hour to find anything that she can fit into her pocket.  She walks by me with pockets bulging with her treasures and then scurries to hide them  in her room.  Today's "theft du jour" was tea bags.  But, she was picky.  She only wanted the Lipton.

Mom likes McDonald's cheeseburgers.  Thankfully.  Sometimes, when she is disoriented and agitated, the only thing that calms her is a ride (again a toddler).  We usually end up at Walmart, which is ironic because I dislike Walmart.  But, she loves pushing a cart and the anonymous bustle of it all seems to calm her.  So, we wander a bit and stop at McDonald's on our way out.  And that damned cheeseburger is the only thing that I have put in front of her for the past year that isn't too big, too small, too hot, too cold, too salty, too whatever. She eats it and has no comment.  And that is high praise these days.

A different set of memories...

I have always felt sadness when I hear of people who do nothing more than tolerate the month of December.  They find no joy in the season and definitely no peace.  For whatever reasons, the Christmas season has become something they get through rather than embrace. But these years as Mom's caretaker have given me a new perspective on how hard the season can be for many.  

I have always loved the season.  I cherish the opportunity to celebrate the birth of my Savior.  And I love the traditions that the holiday entails, regardless of their origins.  Christmas holds many happy and precious memories for me.  And, I suppose that is what makes this situation difficult for me.  I know that my daughters won't have the memories of Christmas that I so want to give them. We have been forced to adapt our celebrations of joy to small windows of time and compromises.  I want them to remember the bustle of preparations, the anticipation of the holiday and the joy of Christ's birth.  I understand that I am leaving them with a different set of memories, I just wish they could be happier.

But for the Grace of God...

I sat down today to tell you all how sorry I was feeling for myself after spending the day at the County offices where I was trying to apply to be Mom's paid caretaker.  Two sentences were written before my perspective was changed.  Yes, I still have a wall to climb and hoops to jump through, but I have a strong back and able legs.  Here is the original post that was supposed to be a "woe is me" entry:

One of the most difficult things to accept about this entire situation is the fact that I have become one of the infamous 47% who need help.  And it is killing my pride.  I have never been one to begrudge or even judge those that need help.  Each time I have thought of those less fortunate, I think, "There but for the Grace of God go I".  

But, I have come to think of that phrase in a new way.  Because if God's Grace saved me from falling on hard times, then it must be His lack of Grace that allowed it now.  And I cannot accept that reasoning.  Even in these difficult times I am still receiving His Blessings. Every minute of every day.  So, I will swallow my pride, learn humility, and walk on with hope in my step and praise in my heart.

Mom's conversation...

Mom's conversation while she is eating her lunch, a big plate of spaghetti with garlic bread.  It might be hard for some of you to read  because it is so random. But, this is her life. And this is her reality. The entire conversation took about 10 minutes.

It was sure nice of that man to fix me food before the police get here.
I wish that thing would level out so I could see the driveway.
I don't want anybody hurt.
I wonder if I could slip out before they get here.
I haven't eaten in two days.
These socks are taking the air out of my thumbs.
That guy sure hit me hard that last time.
I need to get out of here.
I'm sure glad I'm alone.
Don't hurt them.
What time are the police supposed to be here?
It's 11:00.
This is good. I like it.
I'm glad no one is here to listen to me.
Are you going to be leaving soon?
I'm hungry and they haven't fed me in 3 days.
That man sure is nice. Maybe he'll take me get something to eat.
Maybe that cat will take me for some coffee.
I'm scared. I didn't mean to tear the bread.
I sure could go for a rest right now.
THAT'S IT! I'LL SHOW YOU!!
Wow. Those trees are really moving. OH! Did you see that?
Look at that! There's papers falling off of those trees.
I wish someone would feed me.
Why would anyone do that?
Do you want me to put my empty plate on the counter?
Oh my! There's a big dog on the book case!
They stole my purse again.
And now I'm the bad guy.
I'd like to take a walk.
I wish I could go down and have a cup of coffee.
I guess not. What do you expect from people who won't give you a tissue.

I am thankful...

I went 3 weeks without any outside help with Mom. I had reached the point that it was harder to deal with the hurt and disappointment of my brothers' lack of help than it was to take care of Mom.  I had a letter written to both of my brothers saying that I was done being a part of the family.  I would rather do it alone than to have my needs and the needs of my daughters be rejected and forgotten. 

I went through quite a mental dilemma as to whether or not I should even take her to my brother for the first time in 3 weeks.  But my desperate need to recharge outweighed my delivering of the letters.  I was not in the best mental condition to deal with the confrontation that would result..  So, I took Mom and did my normal Tuesday tasks. 

When my brother dropped Mom off late in the afternoon he and I talked.  Still not being mentally ready for the confrontation, I allowed the conversation to remain on a superficial level.  And the strangest thing happened.  He looked at me and said, "Nancy, I know that you feel abandoned by us. But, I can only speak for me. What can I do to make this situation better for you and the girls?"  And, with that, a weight was lifted off of my shoulders.

That was 2 days ago and I have had more true help in that time than I have had in years.  And I am thankful for it. But more importantly, I am thankful that I still have my family.  I am not alone.

Extremes...

It has been a rough couple of days. 

My life has become a life of extremes.  Mom is either very calm and placid or she is agitated and violent.  The problem lies in the quickness that she shifts between the extremes.  I cannot adjust quickly enough to encourage one while defending myself from the other.  She is living in a very delusional state and, since I am not privy to her thoughts, the simplest wrong answer sets her off. 

Today it was the introduction of a new pair of pants.  Her reactions varied from anger that she didn't like the pants, to accusations that I had stolen the pants, to denial that she stole the pants, to fear that she was going to lose her job because the pants were the wrong color, to gratitude that I bought her new pants, to violence that I had no right getting into her stuff, to accusations that "that man" was going to kill me for stealing the pants, to can we go for coffee now?  This, and various degrees of each reaction, all occurred in a matter of an hour. And were replayed for 2 more. 

How can I keep up? How can I remain calm enough to prevent the escalation of the situation when she uses violence and then has no recollection of it?  I am not ready to make nice. How can I answer a simple question correctly?  How can I stay sane? 

I know that each day that I have any semblance of normalcy with her is rare.  I know that this disease only becomes worse. I know that the world of medicine can only do so much for this heinous disease.  And I know that we are probably past that point.  I have to face the fact that I will soon have to make a more permanent decision.  For my sanity, for the sake of my family and for her own safety.

I miss me...

I am going crazy.  I am so very lonely.  My friends have become the words written by people who care about me.  I need more than words but I have no way to find more.  I pray for help and it does not come. Apparently it has more important things to do.  I look for answers but the hoops are too high for me to jump through.  I miss me. My brain has short circuited and simple things are more than I can comprehend.  I just don't care anymore. I have nothing left to give.  I wonder what I did to deserve this.