Bless Her Heart and Pass the Vodka

While my mother's brain diminishes in its functions, I stand witness and write down my own observations.  I feel like I am chronicling the slow demise of my mother; and at the risk of sounding light-hearted, (which of course I am not) I do find that I am more and more inclined to laugh about her...ehem...antics.  I don't want to make fun of how difficult this transition is.  It is awful -- really, really awful!  It's just that when I can't take it any more I turn to humor.  I call a friend and recount something that has driven me over the edge and together we laugh.  "Are you okay?" she asks.
"As long as I'm laughing you don't need to worry.  If I stop laughing you'll have to come rescue me," I warn.

Today, Mom was so disoriented, so mindless, so without purpose or thought that I was being driven totally crazy.  It's not too difficult for me to reach that state these days.  I feel like that Edvard Munch painting, The Scream. I am a short fuse on a Roman Candle.  I recognize that and try really hard to stay away from situations that will set me off.  But how does one do that when one is caring for an Alzheimer's patient? 

As soon as my mother awakened I knew that there was no thought process.  I could tell by the way she greeted me with a certain formality, a certain lack of recognition that told me she was somewhere else; that and the fact that her panties were in her walker and she tried to put her legs through the sleeves of her blouse.  At breakfast she ate mindlessly and then stood up, grabbed her walker and went outside to the screened porch.  Normally she joins us in the family room to watch the morning news so this was a departure from her daily schedule.  I watched from the family room and saw that she was staring off in the distance.  I walked out and turned on the overhead fan to cool off the porch.  Within a minute she was back up and inside.
"What's the matter?  Is it too hot outside?" I asked.
"No," she replied.
"You weren't outside very long," I commented.
"Oh.  I just wanted to see what was going on outside," she explained.
"Well was there something going on?"
"Oh yes.  There was lots of activity; people going in and out, stopping to talk."
"Hmm, I don't see anyone."
She looked out the window and went back outside. Five minutes later she was inside, walked to the front door and circled back to the porch.  The whole day has been like that.

I gave her paper and colored pencils asking her to draw something for me as a way of diverting her attention or engaging her in an activity; but all she did was scribble back and forth on the paper.  I asked what she was drawing and she told me, "Nothing.  I'll let you know when I decide."  I could hear in her tone that she was bothered by my interruption.  Okay then...fine.  I walked away and did the dishes.  She was back up and sitting at the kitchen island.  Back and forth all day, she followed this routine until I finally asked her what she wanted.  She answered, "I'm just sitting because there's nothing else to do."

Aha!  There it was.  I was a bad daughter.  I was not filling her days with things to do and she was horribly bored.  I felt awful.  I sat down and asked what she would like to do.  She didn't know.  In fact, she told me she didn't want to do anything.  I pushed on by offering  several activities.  No. Nope.  Nunuh.  Not interested.  So I just finally walked away feeling frustrated and vowing I would ignore her wandering.  At one point I closed the door to the porch a little too hard and Mom couldn't get back in.  My husband Skip walked over to open the door and shot me an accusing look like I had intentionally kept her from coming inside.  I protested loudly.  Not my fault!  (Or was there some unconscious desire to lock her out?)

The afternoon was even worse with the quick trips to the porch, the chair in front of TV, the kitchen, the front door and back to the porch within five minutes.  I began counting.  She walked outside 25 times between 1:30 and 3:00.  I was ready to explode when I began calling sympathetic friends.  "Listen," I told them.  "I need you to talk me down before I...I...self-combust."  Then I recounted my day so far.  As I spoke it was apparent that it was funnier in the telling than in the experiencing.  As I talked I peppered my descriptions with ample sympathetic expressions.  "Bless her heart," I exclaimed.  (Now I know that I have become a true Southerner!)  However, What really got me through the day was a promise of something that called to me from the liquor cabinet.  A bottle of Vodka had my name on it.  Oh hurry, hurry Mom's bedtime.  Would 8:00 never come?!  I licked my lips with anticipation.  In reality I knew that I would probably forgo the drink when the time arrived for me to relax after putting her to bed.  I talk a big story but am a 'light weight' when it comes to drinking.  I don't want to become an alcoholic (or maybe I do.  I'm not quite sure yet because 8:00 hasn't yet arrived.)

I was prepared to be angry until Mom's bedtime but suddenly Mom 'woke up' from her oblivion.  She was watching a travel log and I asked her a question about a bird they showed.  She sat forward and commented that it was beautiful.  Suddenly she was listening to the narrative.  The program moved to Norway and she turned to me saying, "Look!  The Fjords are so beautiful."  And, "Oh my.  It looks so cold."  She told me about a certain city, Bergen, Norway and said it was a big city.  She was paying attention in a way that she had not in weeks.  What?  HUH?  This is the kind of stuff that keeps me laughing, upended, and well, frankly a little insane.  Along with the litany of other complaints about care giving I can now add that it can lead to insanity or maybe just alcoholism.  As I write this now, I grit my teeth and repeat my mantra, "Bless her heart and pass the vodka."

Repetitive Days

She sits at the counter fingering her food.  My mother...devoid of understanding of what she is eating.   She takes a small bite of a piece of toast held at the tip of her fork, then picks up some cottage cheese with her fingers.  We correct her, telling her that the toast is a finger food while the cottage cheese is not.  This confuses her and we see her brows knit together as she unsuccessfully tries to comprehend what we are telling her.   I walk away from the kitchen shaking my head, trying to clear the thoughts that cause my impatience, my temper, my frustration.  Returning to the kitchen I see that Mom has now lifted the toast holding it like a sandwich in both hands.  Her thumbs and forefingers grip the bread while she extends her pinkies and fans out her remaining fingers perhaps envisioning herself as a person of refinement.  She is a picture of contradictions; old characteristics mixed with new habits, bad manners, good manners.  Deep within her the need to be the lady of old, with perfect hair, perfectly buttoned clothes, impeccable etiquette, everything just so.  But Alzheimer's has consumed her brain, her memories, her motor skills.  She can no longer button herself, remember to throw a used tissue away in the trash, or wash her hands.  A cloth dinner napkin becomes a Kleenex for her nose and then is folded neatly beneath her plate at the end of a meal.  Meanwhile I bluster and blow, complain and bellow.  I run interference for fear that others will be disgusted by her behavior while knowing that it is I who am the most offended.

Mom is not the person she was, nor am I.  What used to be an amazing mother and daughter relationship has now become a care giver and care receiver arrangement.  My feelings of daughterly love and devotion have diminished to custodial efficiency.  I am saddened by this but also accepting and understanding of the process.  It has taken a while to arrive at this conclusion.  For each of us who is in that position, we fight the tendency to look for a glimmer of hope when our loved one remembers something.  "Ah!  she's not so far gone after all," I say to myself.  Then a moment later, when my mother becomes oblivious to her surroundings I remember how the disease toys with all of us giving the afflicted small moments of awareness before casting them back into the abyss of forgetfulness.

The newest stage: she rocks in her chair on the porch from morning 'til night.  She closes her eyes and sleeps for fifteen minutes awakens, stares at the sky and the trees for a few minutes, then falls asleep once more.  Her days go by, sadly dragging on while she loses more and more of her worldly attachments.  I regard the quality of life and wonder about the cosmic purpose.  Is it that we are not ready to lose her...to let go?  Is it that she cleaves to life for some unknown reason?  I feel the presence of ancestors surrounding her now.  They are at the ready to lovingly assist her on her journey as she transitions.  I hear her speaking with them at night.  Who are these departed ones who crowd her room?  

It is time for tea and a freshly baked scone.  The sweet fragrance of warm chocolate and orange awakens her and excites her taste buds.  She mouths the scone with enthusiasm dipping bits into the clear liquid; knowing only that it is sugary, forgetful that it is something she has had before.  "Remember when you used to bake scones?" I ask.

She shakes her head bewildered by the question.  There is no memory of her baking, of her life, of her actions.  Forlorn, I retreat indoors to continue working while I keep an eye on her through the windows.  She becomes restless and stands up, moves around, circles inside then back out.  Caged within herself she doesn't understand what is happening.  There is no logic, no interest in doing anything (though I offer activities that she declines). There is just motion and repetition, a continuous loop of awakening, moving, sitting, sleeping, eating, sleeping , awakening, sitting, moving.

And then, just as I feel that the hopelessness is too overwhelming to bear, there is the smile, the comment, the engagement.  "Oh, what is it you just said?" she asks with interest.  She leans forward with interest as I repeat myself, and then comments back;  intelligible words, words that make me laugh.  I am grateful for the moment and embrace it...cherish it, unsure of when (or if ever) there will be another.   How much longer does she have here on Earth?  How much do any of us have?  We tell ourselves to make the most of the moment...this moment.  And so, in this moment I remind myself to be grateful that Mom uses her fingers to pick up her cottage cheese and her fork to pick up her toast.

Spiders, Roaches and Behemoths, Oh My!

Summer in North Carolina is fraught with danger.  With the summer humidity comes the bugs of summer...the spiders and the centipedes, the millipedes and last but not least, THE ROACHES!  We call them wood roaches, water bugs, and Palmetto bugs.  Whatever we call them, they are big, black and nasty.  Last week we were being terrorized by a BAR (Big Ass Roach) that appeared and disappeared for three days straight. Each time I screamed and panicked because, unlike the strong  woman I profess to be, I turn into a weak whimpering pillar of jello around bugs. Finally upon the 4th sighting of this creature-of-epic-proportions, Skip charged it in his socks and began stomping like Savion Glover. Skip's tap-dancing ability when faced with the task of killing large bugs is legendary. He is a shining example of a quick study. "Why Skip!  I had no idea you had such ability!  Where did you learn to do that?"
"I watched lots of Gregory Hines."
"I'm impressed."
I was reminded of the time that Skip killed a monster on the driveway of our friend's home.  I thought that it was a frog but in fact it was a female wolf spider carrying all of her hundreds of babies on her back.  Ordinarily, my motherly instincts kick in and I want to save a mother and her babies; but not when it comes to wolf spiders!  
"Kill it!  KILL IT!  KILL IT!" I yelled.  And here again, Skip went into action dancing his way around the driveway as he stomped and twirled, jumped and leaped, executing perfect pirouettes and choreography a la Rudolf Nureyev. When at last he was done I gave him a standing ovation.

I am reminded of the years when I called upon my mother to kill the bugs and crawly things that spawned instant panic as I would scream for help.  She was always there with her fly swatter, with the rolled up newspaper, or even the flat of her hand.  Even as an adult I recall the time I was about a mile from her house in a new subdivision sales office.  I was alone in the early evening with one hour left before going home.  I was just finishing some paperwork when I saw something move in the periphery of my vision.  Was it a mouse? Nope! It was a mean ol' wolf spider.  I couldn't leave with that thing roaming around my office and so I called for the security guard by depressing the panic button.  The security guy was undoubtedly sleeping in his car in some cul-de-sac in the subdivision.  I sat and waited and watched.  Meanwhile the Behemoth creature evaluated whether it could consume me in one meal. Worrying that I could not escape I began looking for alternative means of rescue.  Aha!  The solution lived just down the hill: my mother -- killer of tomato worms, potato bugs and spiders of all sizes.  I picked up the phone and called.
"Hi Mom?  What are you doing right now?"
"Cooking dinner.  Why?"
"I need you.  It's an emergency.  Can you please come quick?"
"WHAT'S WRONG?!"  She was already alarmed.
"I need you to come kill a spider."
There was silence on the other end of the line.  "Um...did you say, you want me to drop everything to come kill a spider?"  She began to laugh.
"This is not just any spider, Mom.  This is a BIG spider.  P-L-E-A-S-E come quick."
"Oh my God! You are kidding me right?"
"Mommy?" I whimpered.   
"Okay."
"Oh, and bring a rifle!"  I warned as I underscored the fact that this was a huge beast.
"Ha!  I'll bring a tissue."

I waited for what seemed like hours.  All the while the angry Demon from Hell paced back and forth eyeing me and salivating as it planned its attack.  Then before it could take action  my mother walked in and slammed the door.  It must have caused enough vibration that the monster took off for the bathroom in the back and crawled under the door.  
"Okay," Mom announced calmly and more than a little mockingly.  "Where is this little spider?"
I pointed towards the closed door.  "In there!"
Now (finally) the security guard arrived having been alerted to the panic buzzer, opened the door and eyed my mother suspiciously.  "What seems to be the trouble here?"
Mom answered for me.  "A spider," she laughed.
"Really?  A spider?  Hahahahahaha."  They both were doubled up with laughter.  
I refused to be intimidated by their mirth.  I pointed at the door and told them to go get it.  They walked into the bathroom and turned on the light.  I remained in my office, curled in my chair with my feet off the floor, eyes bulging in terror.  Then I heard the blood curdling screams from the security guard as his voice rose three octaves.  "My God!  It's HUGE!"
There was lots of banging, thumping, stomping, pounding.  I waited and hoped that between the two of them they had triumphed in battle.  Finally they emerged war-weary soldiers.  Their faces told me all I needed to know. They had been victorious but not unscarred.  My mother told me, "That was the biggest spider I have ever seen in my entire life."
I felt totally vindicated.  

Now as I face the new threats of bugs the size of my fist that fly in, scurry across the floor, and jump out to surprise me when I least expect it, I bemoan the approach of the dog days of Summer. It is the time of year when we are accosted by the hungry creatures of The Wild Kingdom. Ah the misery of awakening to each new day knowing that today could be the day that a giant roach could be my pillow mate or might be awaiting me in the kitchen.  We have surrounded ourselves with Roach Motels, guns and grenades.  I think we will survive but this is WAR, people!  We will take no hostages. 

  

98 Years Old....The New Two?

Today is my mother's 98th birthday.  No matter how you cut the cake, it's O.L.D. !!!
I wished my mother a Happy Birthday when I went upstairs to get her up and get her dressed.  While she thanked me, she didn't quite 'get it'.  I reminded her again.  "It's your birthday today!"
"Oh!  It is?"
"Yes," I confirmed.  "Do you know how old you are?"
"Am I ten?"
"Nope.  Guess again."
"Five?"
I laughed at this one.  I could see where she was going.  Mom no longer felt like an adult.  If she had said 2 she would have been closer to the truth.  (Sadly, her Alzheimer's makes her more of an overgrown two-year-old than anything else.) 
"So Mom, do you see yourself as old or young?"  I persevered.
"I'm young," she answered without missing a beat.
Okay then.  Confirmation complete.  My mother had lost all touch with reality.  Now I was faced with a decision.  Should I indulge her or should I tell her the truth?  I decided to let it go.  Why not let her live in her birthday bubble for a while rather than burst it.

An hour later a friend called and wanted to wish Mom a Happy Birthday.  She spoke to Mom on the phone and asked, "How old are you?  Are you 97 or 98 today?"  (Uh oh!)  I had to inform Mom of her age.  
Her eyes opened wide and she said, "That's so old!"
"Yup."
Then I took a picture of her.  I thought that it was pretty but Mom scowled when she saw it.  "Who is that?" she asked distastefully.
"You!"
"NO IT'S NOT!" she insisted.
"Yes, Mom.  It's you."
"No.  That's my mother," she informed me.  "Besides, I have a pretty smile.  That smile (she points at the photo) is ugly."
I showed her the outfit she was wearing and then the one in the photo.  "See?  I just took the photo.  It's you!"  Mom just shook her head as if to say that I was wrong but she wasn't going to waste her time arguing with me.  Yes, that's right.  I am delusional.  *sigh*

This birthday, more than any of the others I am more aware of her age.  Mom has slowed not just mentally but physically.  I feel like she is existing on a day to day basis.  She is still healthy but oh so changed, so much older.  I look at photos and videos from two years ago and see the tremendous changes in her face, her demeanor, the way she holds herself.  Still, she laughs and jokes.  She comes alive when we have company.  She smiles when we say something nice to her.  Alzheimer's or not, she retains that inner light, that smile, that sweetness.  I think back over this past year and remind myself that we nearly lost her in September.  We called for hospice and I sobbed over her eventual exit.  Then she miraculously bounced back and I was overjoyed until I began to tire with her decline.  It was difficult to bathe her, to feed her, to take her anywhere.  My work was doubled with her Alzheimer's.  It was physically demanding as well as mentally challenging. I fell back into the impatience, frustration, and occasional bouts with anger.  I struggled with my emotions and battled with negativity.

I don't know how to describe the emotions I feel other than sad gratitude.  Hmmm.  There are other words that come to mind.  Angry joy, ambivalent love, or caring impatience. You see what I'm saying? It is such a roller coaster.  I love her, but go nuts when I have to deal with something for the millionth time. I become impatient when I see her do something repeatedly after correcting her oh so many times; like habitually rub her eyes with hands that just blew her nose or hands that picked her teeth or worse.  (I try to keep after her but cleanliness and hygiene are not part of her vernacular any longer.  When we try to explain why she should use a tissue to wipe her eyes because her hands have germs, she looks at her fingers and searches for some indication that we are correct knowing that we are crazy.  Her hands look clean to her!  She ignores us and does what she feels like.  Then she gets an eye infection.) 

Yes.  98.  The new 2.  You know what they say about two-year-
olds?  They call them the 'Terrible Twos' with good reason.  Picture having one of those in an adult body and you have a good idea of what we deal with.  Still, I look at her and see the woman who is so filled with peace and contentment that I want to be her when I get to be her age.  (Maybe without Alzheimer's though.)

So, moving on...I asked my mother what she wanted me to make for her birthday dinner.  She thought a long time and I thought that she had forgotten the question but finally she told me, "Read."
I thought she had misunderstood the question so I asked again, "What food do you like?"
"Read," she repeated.
I asked her to clarify what kind of food that was.  I finally got it out of her.  She liked bread.  BREAD.  And when I asked what else she liked she told me, "Butter."
Okay then.  For her amazing and delicious birthday dinner Mom will sit down to a yummy dish of bread and butter.  Maybe I'll have some awful stuff to go with it though: some steak and potatoes, fruit salad, birthday cake and ice cream.  Just sayin'.

Happy 98th Birthday, Mom.