Thursday, July 22

A disease of Misery

One thing I have learned about this disease is that it is a disease of misery.  I cannot imagine what it must be like to wake up day after day knowing that I cannot do the things I once could.  Watching the world around me in broken pieces trying to fix the puzzle over and over again.  Each word is a challenge to retrieve, everything I once knew floating around my head and trying to jump up to reach them.  I watch her play with the children, struggling to tolerate the noise that amplifies from their little mouths.  She wants to relate to them and realizes she cannot.  It tears her apart to have Mackenzie try to show her how to do something or not going to her when she needs help.  My mother has one foot in our reality and one foot in the Alzheimer's world.  She is struggling to stay with us and I have noticed some reasons for her ability to remember and remind us of things. 
At one time I would have believed my mother to be obsessive compulsive and it is that one trait that has kept the ability to remember going.  I notice that when she wants something or has to tell you something, she will not complete something else until it is resolved.  I recall her saying that she has sat in her kitchen chair just waiting until I got there continuously thinking about what she had to give me.  I also noticed that often when I get there, she has items on the kitchen table that she must explain to me one at a time.  We cannot proceed until she has exasperated the entire items from the table. 

Yesterday, we went to her doctors office to discuss her last visit and clarify all the things that she was confused about.  The visit went rather well-she let me do more talking than ever before and often she seemed to have no understanding of what we were discussing.  She seemed to blank out every so often.  We got home and my mother asked me to make three ham sandwiches so we could give them to her friends down the street.  I had to leave to relieve my brother from watchcng my children and helped her get situated. She eventually called my father over to bring her to the pet store.  The poor guy.  It was rather hot the last few days and I cannot imagine the frustration of working in the hot sun, dirty, exhausted, and covered in leaves only to have the phone ring and having to drop everything to take care of the newest crisis.  That was yesterday.  My husband and father were trimming shrubs and I know it was brutal.  My hubby called to tell me that he will be worthless by the time he gets home (he breaks out in these large white lumps and cannot speak, walk well, or move well after working out in the sun for extended times).  Figuring that my dad would feel the same way, I decided to cut him a break.  I cannot fathom having to come home after working 9 hours in the 102 heat, cutting and hauling branches and jumping in the shower only to find that dinner must be made.  On top of that, having to handle my mother with extreme care and concentration or pay dearly.  So I grabbed dinner, headed up to their house with the kids, and spent the early evening being with mom. 
Today I had off from my mothers and was able to visit two of our clients and help my grandmother out.  I am now officially tired and going to work on my school work and the final proofreading for the grant.  Tomorrow believe it or not, I have nowhere to go until night time (movie night).  Ahhhhhhhhhhh I may just spend the day lounging by the pool with the kiddies.


Susan Higgins said...

The hardest part of this illness for me, my mom's Care Giver, is accepting the changes in that come with every day. One day is good, one day is not so good. I work hard to keep myself in a good state of mind, because my mom is tuned in to me and my emotions and moods affect her behaviors.

Your kids are learning a great lesson, watching how you care for your mom.

Kimberly said...

That is probably the hardest part is masking your emotions. My daughter is learning quickly and it makes my heart sing.

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