The Visitor

It is more and  more difficult to write about Mother's journey.  Her days are so similar, and her regression is so painful to watch.  I sometimes feel like I am caught in a time warp watching dementia stealing Mother away ever so slowly.  There is nothing I can do to stop the decline, but I am forced to watch and to cling to the fragile pieces of Mother that are left. I want to gather each piece and put it back, but like Humpty Dumpty, the pieces of Mother can never be put back together again.

For several weeks Mother has spoken only a few words.  Today, she wanted to converse, but the words were so difficult for her to speak.  She struggled to form the word, and a phrase was slow - each word followed by a pause as she formed the next word.  I believe she has had another small stroke.  The left side of her face seems to droop a bit, and when she smiles the droop is more evident.

Today as I walked in, she was moving her milk carton from side to side on the table, touching the tablecloth and repeating the motion over and over.  I've seen this same motion is so many of the residents over the years.  It is a sign of degeneration; the repetition giving them some kind of comfort even in its meaninglessness.

Mother grabbed my hand, and slowly spoke, "You are my visitor."  She smiled, but that was all she knew, that I was her visitor.  She didn't know who I was, or that I was her daughter.  She couldn't remember my name even after I told her who I was.  But I was familiar, and she knew I had come to see her like I do virtually every day.  We held hands.  She smiled a lopsided smile.  We sang a song and she remembered the chorus. She tried to converse by repeating a word or two that I spoke.

When I asked Mother a question she would just smile or say, "I don't know," or "I don't remember."  She tightly held my hand.  I wonder if it is terrifying to not know and not remember anything.  I wonder how it is to eat what is placed before you, to go where someone tells you to go, to have no ability to make a choice or to know what is happening to you.  It terrifies me to watch this, but Mother just smiles and knows at some level that for that moment I am her visitor as she stares intently at my face as if she should know and remember.

Into the Dark Future

I have found it  difficult to write about Mother this fall.  Her decline is more profound and pronounced, and there are days when she sleeps so soundly that she never knows I have been to visit her.  I sit by her and hold her hand, but she doesn't stir.

I spoke with her physician, and there is nothing to do but keep her happy and clean and comfortable.  The disease has stolen so much of her, yet when she is awake, her smile is still there.  But the disease has stolen her speech; she has lost her words. Occasionally she speaks a word or two.  I ramble on in a monologue telling of the events of our daily lives.  She smiles and occasionally raises her eyebrows in response, but I am not sure she understands anything I say.  The sound of my voice, the idea of conversation is something she can connect with at some level.

Perhaps this is the most heart wrenching.  I can't tell how much of her is still with us.  I can't tell how much she understands and how much is just a reaction.  She is more and more like a very small child.  A piece of chocolate, a soft drink, a silly song- these give her joy. But more and more she is beginning to stare into space.  No reaction.  No facial expression. No Mother.

I want to hold her close and keep her from going.  At the same time,I want to be able to let her go.  We are caught in a limbo world that could go on for years.  We are moving through the foggy places of the dark future where we can't see what is to come, and there is no defense for what is to come. We can only hold hands and travel together.