Fine Tuning My Life...

This is from one of the chapters of my newest book.  I am continuing where I left off with I Am Not a Village.  In this chapter it is the beginning of the new year and we have seen a tremendous change in a very short time in my mother.  Her Alzheimer's is quite obvious and her presence in our home has become more and more challenging as her disease progresses.  Still, we look for and find humor in our days and her behaviors. It is our coping mechanism that sustains us through some of the most trying times.

********

I awoke filled with energy.  It was 8:30 AM on New Year's Eve morning.  I had slept for eight  full, glorious, hours.  I felt decadent and satiated with rest.  Still drunk with sleep I arose wondering how I had managed to sleep through my mother's call to us to help her get dressed.  I rounded the hallway and looked around the kitchen puzzled.  Where was Mom? My husband, Skip sat in his chair watching the morning news and sipping coffee 

"Where's Mom?" I asked incredulously.

"She's still asleep," Skip replied.

"NO!  Really?" I asked in disbelief.

Skip flashed a big smile as I considered performing a little happy dance.  What good fortune provided us with this extra two hours of sleep?  My gleeful celebration lasted only a few seconds before I had the sudden thought that perhaps something was wrong.  OH NO!  Was Mom lying unconscious on the floor?  Was she alive?  A silent prayer and promise:

"Please just let her be okay.  I promise I will be more patient.  I will be more compassionate.  I will do what is needed of me without complaint...just let her be okay." I asked Skip if he had heard anything on our baby...uh...elder monitor.  To my relief he told me he had heard her breathing, getting up, walking around, then returning to bed.  I exhaled the breath I was holding, overcome with a sense of relief. I enjoyed sipping my coffee and watching the morning news with my husband...just the two of us sitting companionably enjoying the moment. It didn't last long. Obligation nagged at me. At 9:00 I decided that I should probably check on Mom.  She still had not called. My resolve to be a better person put energy in my steps as I climbed the stairs.

When I entered her room she sat up immediately and gave me a chipper "good morning!"

"Why didn't you call me?" I asked.  She looked confused.  I repeated my question.  It was clear that I had not awakened her when I entered her room.  She had been waiting for me.  I asked her one more time and she replied that she didn't know she was supposed to call out.  REALLY?!  These words came from a woman who had spent the last nine months calling out at all hours, "I'M A-W-A-K-E!!!  COME GET ME."  I looked around wondering if I was in some alternate universe.  I studied Mom to make sure that aliens hadn't kidnapped the real Mom overnight and replaced her with one of their own versions.  I looked at the signs hanging on walls and doors in her room telling her to call for us after 7 AM to remind her that she should stay in bed until then.  Perhaps she thought it was still too early.  I asked if she knew what time it was.  She knew.  Then why didn't she call?  I contemplated what was happening in her mind as I opened her locked closet door and selected her clothes for the day.  I assisted her with her under garments and then told her to finish getting dressed and we would return to help her down the stairs on her elevator chair when she was ready.  This was the daily ritual and should not have come as a surprise to her. However, she seemed a bit surprised when I left.  It took a long time for her to call to us but eventually we heard her say, "I'm ready to come down."

Skip raced up the stairs while I waited below.  I heard him comment about something.  I wasn't sure what I had heard.  It sounded like, "You have to take your night gown off Mom."

"What's happening up there?" I asked.

"She has her sweater and pants on over her nightgown," he replied.

"UGH!"  My resolve to be more patient evaporated.  "I took it off of her. Why did she put it back on?"  Why did I even ask?  I immediately thought of the myriad behaviors that we were witnessing these past few weeks.  Hadn't she tried putting her blanket on thinking that it was her nightgown the other night?  Hadn't she stripped the contour sheet off of her bed and tried to put her arms through complaining that she couldn't get her shirt on?  Hadn't I found her trying to put an open paperback book on her foot and complaining that she couldn't get her slipper on?  These events were added to those other behaviors that were worthy of a comedic movie: the day I fried bacon and left the bacon grease out in a cup to congeal before discarding.  When I walked back into the kitchen Mom was sitting at the kitchen island drinking the bacon fat.  She had taken the cup from the stove top and moved it over to the counter where she sat having her 'snack'. 

"What are you doing?!"  I yelled.

"I'm having my snack and I don't like it!" she announced  with disgust as she took another sip.

"STOP!!!!"  I took the cup from her shaking my head and rolling my eyes reminding myself that my mother is like a two-year old child who puts anything and everything in her mouth.  I needed to be more careful. 

Nothing brought this point home more humorously than our visit to our daughter and son-in-law's home for Christmas. From the 2  3/4 hour drive where Mom sat quietly for almost 2 1/2 hours before asking, "Where are we going?" to the arrival at noon when I tried to put together a quick lunch as Mom grabbed and quickly downed all sorts of foods like a spoonful of mustard that I had extracted from the hot mustard container to mix in a dipping sauce and a cup of hot water that we placed on the counter with a tea bag beside it.  (She drank the hot water thinking it was her tea.)  When we sat down in the living room to open presents, she reached for the candy canes and began crunching on one.  We looked up to see her eating one without removing the cellophane. 

"Um...Mom...you're eating the cellophane," I told her quietly.  She kept chewing as I pried it out of her fingers and helpfully tried to remove the paper. It was wet and gooey.  Yuck!  I threw it away and picked up a wrapped mint. "Here," I told her as I unwrapped the candy.  "Suck on this." 

She took the candy, popped it in her mouth and crunched loudly.

"Suck don't crunch," I coaxed. By then she had swallowed the candy and was eyeing the candy canes again.  We decided to distract her with a present.  We gave her a gift bag and she opened it, extracted the gift and took a sip of her tea.  We continued to open gifts not watching Mom.  within seconds she was chewing loudly (and with difficulty) on another wrapped candy cane.  Again I reminded her that there was still cellophane on the candy and removed it from her clutch, replacing it with another unwrapped mint.  "Suck on this," I told her as she commenced to chew.  At that point I suggested that we remove all of the candy but not before she managed to grab yet another candy cane.

Okay...back to unwrapping presents: we were enjoying the gift-giving and receiving.  I kept one eye on Mom who was distracting me with her constant handling of her Christmas mug.  She kept looking at the design on the front. At one point I told her to be careful because there was still tea in it.  A few minutes later I looked over in time to catch my mother stuffing tissue in a gift bag that had held a gift moments before.  The gift had been opened and was sitting on the floor beside our granddaughter, Julie.  The bag appeared to have something in it though and so I picked it up curiously.  Inside there was Mom's mug of tea (with a half a cup of tea still in it.)  "She wrapped the cup of tea," I whispered to my daughter with a concealed giggle.  Then I looked over at our dog and told her to move out of the way.  I was worried that Mom might try to wrap the dog next.

So...yes, I need to watch Mom more carefully because while the new year brings with it a sense of anticipation, new goals, a fresh new slate, resolutions and a question of what the future holds, it also brings everything  that was and still is.  It shows us that time is not always our friend.  It reinforces that fact that the diminished abilities of a deteriorating mind will continue to diminish...that a mother with Alzheimer's will continue to demonstrate how the disease progresses and pushes her into eventual total dysfunction.  I dig deep and look for my patience, my love, my compassion. I wonder how I will be tomorrow,  next week, next month.  Will I be able to handle things when Mom enters the next stage of this horrible illness? I look over at her as she sits reading the newspaper unable to comprehend what she has just read.  I remind her of the date and tell her that tomorrow is going to be a new year.  It makes no impression. Then I remind myself that I can be grateful that she has been with us as long as she has.  Her sweet smile graces us throughout the day.  There is an inner light that has not stopped shining in spite of her lack of cognitive presence.  She is beautiful. I set aside the frustration, the worry, the anger, impatience, stress  and concern that makes life difficult and challenging.  I reach out to her,  give her a hug and tell her softly, "Happy New Year, Mom."  She giggles and smiles sweetly. 

"Thank you, Jessica," she answers.  "You're such a sweet daughter."

And in that moment my life is absolutely perfect.