"You Are Bad, Bad, Bad!"

"You are bad, bad, bad!"  That's what mother was saying with her lips pursed while shaking her finger at me.  She was very upset with me, and even yet she can give a good scolding!  Sometimes with Alzheimer's disease it is difficult to distinguish the petulant child from the mother who is unhappy with her child's behavior.  This time it was both.

Mother had a sweatshirt lying on her bed that was not hers.  Checking the tag, I noticed that it belonged to her suite mate.  When I picked up the sweatshirt, Mother started in with "what are you doing - that's my shirt."  Nothing I said would dissuade her.  As I left the room with the sweatshirt to return it, I could hear her scolding me and protesting. She was childlike in her believing something was "hers", but she was also an angry mother whose child was not doing what she wanted her to do. 

It is a fine line to walk sometimes, that line between still being her child, and yet playing the "parent" role of making her floss her teeth, limiting her chocolate, and making her return things that are not hers.  I thought maybe it would be easier to do.  But there is something in that wagging finger and the accusation of "being bad" that still resonates in the back of my mind.  I felt guilty for upsetting her because her belief in her ownership of that shirt was real.  That is the problem with Alzheimer's; one's reality changes.  Sweatshirts or relationships, it all becomes as tangled and scrambled as her mind, and we are all a part of it.

I Like It Here

For much of her life, Mother lived in the fishbowl of small communities as a minister's wife.  When that life ended, she eschewed much of her previous social life and chose to live quietly in the woods keeping up only with family and a few close friends.  She liked the idea of being a "hermit," and in the early stages of Alzheimer's this drawing away from others became more pronounced until she had no real social contact outside of family. So for this very private woman, learning to live in an institution was a major life change.

What is amazing to me is that Mother has adjusted to nursing home life, but she can still play the role of the minister's wife.  It is so ingrained in her that even in the depths of the disease she can move from group to group greeting people.  Sunday as we walked the halls, she waved to staff and residents who called her name; her best smile - a real smile- on her face.  She walked up to individuals and shook their hands and asked how they were.  She introduced me to everyone - again- but with the best of manners.  Gone were the grimacing looks, the hateful comments, the coarse asides.  She was happy with the adulation of her friends and the staff.  "I like it here.  They like me," she grinned.   I was escorting a queen down the hall in her red gripper socks, swinging her hips and happy in her realm.

Lonely

This is the first year that Christmas has had no real meaning for Mother.  The trees were pretty, the inflatable Santa on the yard was exciting, the packages were fun for a minute, but there was no real sense of holiday.  Everything was in the moment except her sense on loneliness.

Several times during the holidays, curled up on her bed with her head tucked down, she told me she was so lonely.  It is true that one can be surrounded by people and yet be incredibly lonely.  She craves conversation, but that is almost impossible.  I talk with her, and like a very young child, she takes it as conversation.  But there is no real meaning and there is so little I can do to alleviate her loneliness.  We walk to the indoor aviary or stroll down a hall.  We play catch with a small, soft ball.  We watch TV together.

It isn't enough, but it must do.  She has long hours, yet time doesn't move for her.  A few family members visit now and then. I visit almost every day, yet the loneliness continues for her.  She can't remember that we were there, so to her the loneliness is primary.  She is trapped in it.  And I wonder how often this scene is repeated in the home, in the city, in the state, in the nation, and in the world.  Old people, once so beloved and so involved in the lives of family and friends sit alone and are lonely.  They are not who they were, and visiting them can be very difficult.  But still the essence of who they were remains.  Their presence is still real.  They are still human beings who need to be loved and touched and kissed.  I sometimes despair that Alzheimer's takes the memory of visits and love from Mother and leaves her lonely.  Perhaps I too will have to learn to live in just those moments with her and make them enough.