Not a hero...

A very dear friend and I have had a couple of discussions about the word "hero".  She doesn't understand how I can reject the word when people use it to describe me in this journey through Alzheimer's.

I have thought long and hard about this and how to explain to her why I reject something that she sees in this situation. The truth is, I reject all labels that cast me in a positive light for simply doing something that has to be done. Doing the right thing when there is no other choice... is not heroic.  Doing that right thing and resenting every moment of it... is not heroic.  I am here because there is no other choice.  And I do resent every moment of it.

I keep returning to a short conversation that I had with my mom many years ago.  Mom had done something very kind for someone.  I no longer remember who she was helping or even what she had done.  But, I do remember telling my mom that I thought that she was a very nice person.  She shook her head and said that she wasn't nice at all.  So, I asked her how she could do something so kind and not think that she was a nice person.  Her response was, "Because I know what I was thinking when I did it and it wasn't nice." 

For her, thoughts and intentions mattered more than the action. And that is the best way I can think of to explain my feelings... my thoughts are very clear while caring for my mother.  And I know they are not worthy of the label of hero. 

My friend understands that the word "hero" (or any of those positive labels) does not give me a feeling of support.  On the contrary, it reminds me of how unworthy I am to be the one caring for my mom.  But, I will take that thought one step further.  While the word "hero" does not support me, the thought and feeling coming from the people saying it does.  I reject the label, I do not reject the intention. 

I can be quiet...

"SOMEBODY HELP ME!  PLEASE, OH, PLEASE!  HELP ME!"

This is something we all want to be woken by at 2:00 a.m.  At least, I do. Okay, I really don't.  But, awake I was.  I ran to Mom's room to find her on all fours, panicking.   She hadn't fallen.  She said she was looking for something and then couldn't see where she was.  So, I got her up and back to bed.  She fell right back to sleep.  I took just a little longer, but did get there.

"HELP ME!  I NEED HELP!" 

It was 4:30 and I found her on the ground again.  This time I stayed with her because she seemed a little dizzy and 2 screams from the floor in one night isn't a good thing.  So there I sat.  I was feeling brave and patient, so, no Pandora.  Just me and Mom's ramblings.  It was truly fascinating to listen to.  And kind of funny.

Here's a short excerpt:

"I don't feel right.  It's late.  I know it's late.  I'll just lie here and be quiet.  I know it's important to be quiet.  There are other people in the house, after all.  So, that's what I'll do.  I'll just be quiet.  Being quiet is good.  I can do this.  I can be quiet.  I don't feel good but I can be quiet.  That man that helped me is so wonderful.  I can be quiet for him.  I think he is here.  Are you here?  Would you like me to be quiet?  If you'd like me to be quiet, I can do that.  I wonder if he would bring me food.  Food would be good. It sure is dark in here.  Dark is good.  Oh, my.  I do not feel good.  But, I can be quiet anyway.  Would you like me to be quiet?  Quiet would probably help me feel better. Well, quiet and some food.  Did the bed just move?  I'll be quiet anyway..."

---I will give you a 25 minute break here... a break that that I did not receive... I give it to you because I like you---

"...I'm getting tired now.  Very tired.  I'm sleepy.  I guess being quiet helped.  I like to be quiet.  I know that I'm not bothering anyone when I'm quiet.  I'm sleepy.  Really tired..."

  ---her voice gets very quiet... finally---

"... I think being quiet made me sleepy."

---snoring---

I sneaked back to bed at 5:30.  I laid there, wide awake just listening for her.  I must have fallen asleep because I was startled awake by a dark figure of a person looming over me saying, "Go ahead and sleep... I can be quiet." 

Let her be...

I have a strong memory of being young and running to my mom and tattling on a cousin who was younger and not as wonderfully behaved as I believed that I was.  I don't think that I was tattling to get her in trouble as much as I was showing off... I knew that what she was doing was wrong.  I knew the rules.  My mom's answer to me was, "Is she bothering you?"  No.  "Is she hurting herself or anyone else?"  Well, no.  "Then let her be."  At the time, I thought this was crazy talk.  There were rules that needed to be followed.  I honestly just figured that Mom was too lazy to do anything about it.

As I grew older and became the one in charge, I eventually learned the lesson that she was trying to teach me.  I have remembered it many times while parenting my own children.

As I sit here with Pandora in my headphones, I am watching my mother remove the contents of a wastebasket and lay them out on the couch.  She is sorting the items and neatly stacking them into piles.  When I think she is through, she goes back and moves the piles and rearranges the stacks.  My first impulse was to yell, "What are you doing?"  But, then my mind traveled back to my childhood and I hear her voice,  "Is she bothering you?"  Yes, but I can look away.  "Is she hurting herself or anyone else?"  No.  And I just let her be.

Being positive...

 I am running out of options today. 

Alzheimer's Association Alzheimer's Disease Facts and Figures 2014

 I shared the Facts and Figures video from the Alzheimer's Association last year.  Here is the video for 2014.  It's sobering.  Let's hope and pray that these will soon be a thing of the past. 

No choice...

I can't do this much longer today.  I don't know how she has this much energy.  She got up at 2 am and slept off and on until 7... mostly off. She's been going non-stop since then.  Her whining is on auto-rewind. She wants everything that she can't have.  She is trying to move the furniture in the living room to look for something.  She is digging in trash. She's trying to break into locked doors. The entire day she has been angry and agitated. I currently have her locked in her room because I don't have the strength to handle it responsibly. I just want a break, even if it is only for 10 minutes. I can  hear her screaming for the neighbors and telling them that I am going to beat her.  Now, she is sawing at the crack between the door and the jam with a hanger.  I have to let her out.  I don't want to, but my 10 minutes are up. 

She's out and pulling on the couch. 12 hours and counting.  I can't do it anymore today, but I will.  I have no choice.  I have to remember that she doesn't either, but right now that's a challenge. 

Lost in the fog...

One of the aspects of this disease that I find interesting is when Mom has a memory.  Memory is probably a strong word ... she occasionally has a sense of having done something before.  When we sit down at her favorite table at McDonald's, she will sometimes say something like, "I've been here once before, haven't I?"  Or, as we turn down the street that she has lived on for 40 years, she'll say, "I used to know someone who lived on this street."  I always find that comment sadly insightful.

After her shower this morning, Mom was sitting on the couch, looking around, and commenting about things in the room... "I've seen that before.  You've brought me here before.  This looks familiar."  Her comments and attitude makes me imagine how it must feel to walk around, lost in heavy fog when, in the distance, you spy the outline of a familiar building, only to watch it be swallowed by the fog again.  You're still lost, but for just a moment, you have the hope of finding your way home.

As for this morning's memories, I knew the fog had returned when she picked up a tissue from beside her and said, "Now this looks familiar!"