Faded Memories

Mother's memory is becoming a shadow.  She has only lingering glimpses from her past.  Like faded wallpaper slowly peeling away from the sure structure of the wall, her memory is peeling away from the structure of her life.  She can no longer share the memories large or small from her past.  She can only ask questions.

"When I was little, we had popcorn and Pepsi every Sunday evening while we watched TV," I say.

She smiles and sips her Pepsi through the straw because drinking from a can is difficult and says, "Was it good?  Did we like it?  Was it fun?"

I've stopped saying "do you remember."  I just tell her how things were, and she asks questions.  I tell her how much she enjoyed popcorn or old movies or working in her garden.  Sometimes a light of recognition comes on.  Just a faint remembrance - a shadow that flits across her mind.  She will nod, but just that quickly the memory is gone.

I visited a museum once where people walked in front of a light that would capture their shadows.  They could step away and see their shadow lingering on the wall, but very quickly those shadows faded and nothing was left to say that they or their shadows had existed.  Mother has only the shadows of her life left, and those are quickly fading.

Steal Away

There is a new normal for our visits with Mother.  We are learning to tolerate more aberrant behavior as her mind becomes more scrambled and her behavior becomes more unpredictable.  It amazes me that her behavior, which I would have found so horrifying a few years ago, has become just a blip on the screen during my visits.

Yesterday was a good day.  Mother was up and looking out the window, so I asked if she wanted to go outside.  She did!  This is the first time in a while that she was willing to go out and get some fresh air.  I walked with her arm and arm down the sidewalk through the fenced area to the bench where we could see trees and sky.  As we walked, she turned to me and said, "We are a newlywed couple just strolling along."  When I walk with her I always have her grab my arm because she is somewhat unsteady on her feet, but yesterday she was hustling along as fast as her little shuffle could take her.  We sat on the bench for a bit and looked at the thunderheads building up.  She was enthralled with the big, bright clouds and shouted and pointed.  Then just as suddenly, she said, "Can I look down your dress?"  She pulled at my neckline.  I told her no, that it wasn't polite.  She turned away and asked again and pulled at my clothing.  The third time, she asked and said, "Please, please, please, please, please!"  Not only is that bizarre behavior, but it was something I now take in stride because I know she doesn't know what she is saying.  I distracted her with the clouds.  She said, " I will just steal away."  We sang Steal Away to Jesus her voice soft and sweet as she watched my mouth to see what the words were.

A visit so horrifying and so sweet at the same time.  I watched her look at the clouds so innocently, yet I cringed at her pulling at my clothing like some old letch.  How can her mind be both?  How can she jump so quickly from wanting to look down my dress to singing Steal Away to Jesus?  Maybe more horrifying is that that behavior is possible for any of us when disease strips away our inhibitions.  We cringe not just because the behavior is so strange, but deep down we must admit that it is inherent in us all.  Mother, any person with Alzheimer's, shows us what our primitive selves are like.  The hopeful part is that no matter how base and ugly some of what we do is, we still have some part that can steal away and sing.

Bit by Bit

The thing one must understand about Alzheimer's is that it is a terminal disease.  That sounds like a no brainer, yet the disease steals Mother in such tiny bits that sometimes the the major change is upon me before I realize it.  She has ups and downs, good weeks and bad weeks, days of fear and days of joy, but  I realize that my definition of a good day has changed.

It used to be that a good day was one where we could have an actual conversation, be it ever so brief.  Now a good day is a day when she smiles.  It used to be that a good day was getting her teeth flossed and brushed every day because she wanted to have a clean mouth.  Now a good day is getting a few of her teeth flossed once or twice a week because she fights the whole process.

So my sisters and I have to make choices.  End of life choices, although the end of life might be years away.  Many families have to make gut wrenching choices about care and treatment, but for many that process takes place over a few hours or days or weeks.  With Alzheimer's, we make those choices over and over and bit by bit for years.  We have to make a series of gut wrenching decisions, and each one seems to be worse than the previous one.

First taking the car keys way.  That was difficult, but looking back, it was a piece of cake.  Getting Mother to the home was traumatic for everyone because she went kicking and screaming - literally kicking and screaming.  That was just the beginning.  Now we face the difficult choices of stopping  or changing some of her treatment, but that too will come bit by bit and with each decision comes gut wrenching uncertainty.  Even though we consult with the health professionals, we wonder if we are making the best decisions for Mother.  It is difficult.  We must do it; we just have to do it over and over and bit by bit.