Changes

So many changes in the last few months; changes that are difficult to write about.  When I put the words down, the changes don't seem so severe, but they have stolen so much more of Mother that the words stick in my throat.

Mother speaks very little.  Sometimes she doesn't differentiate us from her care givers at the home.  At other times, she grabs us and hangs on.  She tries to kiss my hand, but often that kiss begins as an attempt to bite me.  "Kiss, kiss," I say and her mouth hangs open.  She thinks about it, tries to bite and then puckers up and kisses my hand.  I kiss her hand.  We both smile.  But those times are becoming more rare.

Mother doesn't walk anymore.  She sits in a reclining wheel chair, and even then she can't sit up straight for very long.  She leans to one side and slowly slides down.  We prop her up with a pillow.  She slides down.  She sits on a special sticky pad.  She slides down, her left arm and hand clenched from the stoke two years ago.

Mother can no longer eat regular meat.  Chicken, pork and beef all choke her, so her meat must be pureed or mechanically chopped into very small bits.  She doesn't seem to mind the texture, so she eats.  Nevertheless, she has lost weight and looks more like a small bird curled up in her chair.

The list goes on, but the thing that weighs on me, the thing that hurts my heart is that more and more of Mother is gone.  She sits and stares and chews her clothes or the corner of her blanket.  This beautiful, smart woman is being reduced to a hollow shell.  This is not that way any life should end.

McDonald''s Memories

Sometimes the strangest things pop out of the darkest corners of Mother's memory.  She has trouble feeding herself, so as often as I can, I  time my visits around meals so that I can help feed her.  When I arrive, the aides often say she isn't eating very well.  I pull up a chair and begin visiting with her.  I tell her every little thing about my day as I put bite after bite in her mouth.  She smiles and chews, and before long she has finished most of her meal.

Most days, she is not sure who I am.  I tell her I am her daughter.  I tell her my name and she looks puzzled.  Sometimes she will nod.  Sometimes she thinks I am one of my sisters.  Mostly, she is smiles her beautiful smile and eats mechanically.

Yesterday evening I was feeding Mother the ham, potato salad and marinated pea salad on her plate.  I talked about picnics and the fantastic potato salad she used to make.  I asked her if she liked the potato salad she was eating.  "I don't know," she said.  I gave her another bite.
 "Is it good?" I asked.
"I don't know," she murmured.
She paused in her chewing, looked up and said, "McDonald's!"
In her later years, Mother had grown fond of a cheeseburger and fried from McDonald's.  She loved them, and next to Chinese food, it was her favorite meal.
"Would you like a cheeseburger and fries from McDonald;s for lunch tomorrow," I asked.
Her face lit up. Her eyes got wide, and she smiled with a bit of potato salad clinging to her chin.  She blinked her eyes quickly, she sign for yes, yes, yes.

So today, I know what I am having for lunch.  Two cheeseburgers, two fries and two senior Cokes to go please.  I am eating McDonald's at the home with Mother for lunch today. She will not remember the conversation from yesterday, but she will love the meal just the same, and I know it will make her smile.

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.

Carrying Flowers

There is something about flowers, especially flowers in the dead of winter, that draws people.  It was my birthday, and I wanted a small arrangement for Mother.  It was the only way I could think of to tell her thank you for bearing me and raising me.  So, I stopped at the florist and ordered a small bouquet of pink and white carnations.  They smelled heavenly, and their color popped against the dark gray light of a rainy day.  It brightened my day just to see them, but what astonished me, was that just carrying the flowers brightened others' day as well.

I walked into the home, and the office workers smiled.  "Oh, flowers!"  I paused in the hallway to remove my coat and another visitor smiled and stopped and looked.  "Oh, how pretty!"  I made my way toward the main desk, the nurses stopped and looked and smiled.  The old man in the wheelchair managed a sideways grin and said," Oh, pretty flowers."  I pushed the code to enter the Alzheimer's unit and the lady who always sits at the door waiting to get out smiled and looked.  I found Mother and showed her the bouquet and told her the flowers were for her.  She smiled, and tried to eat them.  I reminded her to smell them.  She did and smiled.

I don't know if she will have any real appreciation of the flowers; probably not.  But they will brighten her room and the staff will enjoy them.  And just carrying the pink, fragrant flowers from the florist to Mother brightened the gray day for just a moment for many.

Like a Child

Mother lay in her bed half asleep, her chin tucked against her chest.  The heating unit hummed away blasting tropical temperatures into the room despite the ice and snow outside the window.  Mother stirred as we entered and reached out her hand to me.  So like a little child wanting to be picked up and cared for.

I sat on the bed beside her, and my husband sat in the chair beside the bed.  Today was a quite day.  Only one or two words formed slowly on Mother's lips, and even her smile was slow in coming.  But the iron grip of her good hand was as strong as ever.  She grabbed my hand and tucked it under her chin.  If I moved at all, she grabbed again and held my hand tight against her as if she needed the security of our presence.

So, we sang to her.  We sang Joy to the World, Jingle Bells, White Christmas, Hark the Harold Angels Sing in uneven harmony, and then she began to sing in a growling whisper, "We three kings...."  That was all she could manage, so we took up the song for her.  Her lips would form a word now and then, and she would look at us with the fascination of a child keeping her eyes on our lips and trying to figure out what would come next.  Then she closed her eyes, still gripping my hand, and there it was.  The faint half crooked smile like a baby just falling asleep.  She was happy and content.  Music, touch and a room the temperature of the tropics.  Merry Christmas, Mother.

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.

Tangled

Tangled.  That is Mother's mind.  Like a thin, gold chain, some days the knots and twists in her mind are impossible to get beyond. Just when you think you have identified all the twists, another wraps itself around the chain and pulls tightly. Tangled.  And the chain will not give in to even the gentlest probing; the knots only tighten and become unyielding.

Now the tangles are taking Mother's speech.  On good days, she can say a word or short phrase understandably and loudly enough to be heard.  On bad days, she only blinks her eyes, or nods her head or points with her chin;  there are no words.  But the worst days are when she whispers.  She hisses and slurs words so softly I can't make them out.  She becomes frustrated because I can't understand. I become helpless before the tangle of sounds unable to respond to her requests, only guessing what she might be trying to say.

The tangles in her mind and the small stroke from a year ago are  taking her body.  The clenched and contracted hand no longer responds to therapy.  Her shoulder and arm are beginning to contract. On some days her legs work, and she can shuffle along, but now she occasionally must use a wheelchair.  The tangles might be in her brain, but they have long tentacles that reach to all of her body slowly wrapping it up in their tight bundles.  And I have no tool to untangle the knots in her mind and body.  I can only sit and hold her hand and watch.