Saying Goodbye Again - Living With Alzheimer's

I watched other family members of dementia patients console themselves  by thinking that their loved ones wouldn’t know the difference, but through my mom I found out from one of the aides that she daily asked for me.  She did n't always know WHO I was....but she knew I was a constant.  I was her only constant.  Her parting words to me where always, "When are you coming?"  I learned early on in my role of caregiver for an Alzheimer's patient that it would be a difficult pill to swallow.  No one wants to see their parent lose their memory.  I know I didn't.  As the disease porgressed I looked for ways to help her memory.  I felt so helpless as she began to slip further and further away from me...until one day the  independant, "I can do anything I set my mind to," mother I loved and who raised me....was gone.

For five years Frank and I were the caregivers for both of my parents.  My father had cancer and was dying and my mom was drifting away with dementia.  I was going crazy as I slowly began to lose both my parents.  With my father's death in the fall of 2009 my mom had to be institutionalized.  She was a wanderer and we could not let her wander off.  She was placed in a Dadeville facility and it was not ever pretty.  She was angry at me, confused that she could not find my dad, and wanted out.  I was not allowed to see her for the first few weeks because she was so angry at me.  The rest of  her family visited with scarcity.....because they could not stand to see her like that.  I got angry....it was such a cop-out.  It wasn't about them....it was about her!  She learned how to walk to one end of the facility....pull the fire alarm and then scoot to the other end and get the outer door open.  It's alarm was not as loud as the fire alarm.  One day, about a month after she was placed....we went to see her and they told us she had to go.  We were given three choices.  One was in the Valley (an hour away), one was in Pell City (two hours away), or Adams (less than a mile from where I lived at the time).  All three were lock down units.  I chose Adams and our journey there began.  During her tenure aqt Adams I adjusted to seeing her ever changing state and eventually the confusion and anger I had with God subsided.  Her first Christmas I made a calendar for her with once familiar faces and when she opened it we went over all the pictures.  When I got to the one of her as a young woman  she became hostile.  I put the calendar away and we never mentioned it again.  I sang for her unit once and when I went back the second time she met me at the door....excited....Karen was coming to sing.  I told her I was there to sing and she grew hostile because I was not THE Karen that was supposed to sing.  The aide played along....hid my guitar until mom was ready for ME to sing.  Music was the way I reached her.  She might not remember your name...but she remembered the words to songs....and steps to dances....and so we sang....and occassionally I would dance with her.(I am not a good dancer - she was).

Cancer is a terrible thing and it was hard to watch my dad die from it.  He knew me until the end.  What was so upsetting  was that it was hard for me to make peace with Alzheimers.  I did not understand it.  I did not like it.   I wanted my mom back.  I wish I had known then....what I know now.  I struggled alone to find my way through this no-man's land. I read everything I could get my hands on.  I looked for support groups....our town had one....but they met during the day and I teach.....so I was not able to go to their meetings.  I visited my mom every day except on weekends.  The visits were not always long....but there were.  I went, I hugged her, I held her hand, sometimes I laid in the bed with her, held her and sang softly.  I have no regrets there.  I really only have one regret and that regret is that I was not there when she died.  Frank and I went to the mountains for Spring Break.  We left on Sunday after church.  I went by to see her on Friday and told her I would be gone.  She smiled and said she would see me soon.  We got the call on Monday and I made a most dreaded ride home.  She was gone!  She went like she wanted to.  She went to be with my dad.  The last time I was at Adams' to see her....she was sitting in the open room....she asked me if I could see the door.  She told me Aunt Shirley and Daddy needed her help setting the banquet table.  I cried all the way home.  She died with a smile on her face....she was going home....and my dad was waiting on her.  One day I will see them again and we will all be together.