The Visit

A friend came to visit.  She is a lovely lady who took the time to come over and meet my mother.  She spoke to her and conversed with her allowing for the fact that many of the questions asked elicited strange responses that made no sense.  She smiled and nodded, commented appropriately and continued to chat amiably.  I watched and marveled at the way my mother was engaged.  She thoroughly enjoyed the visit.  With a sparkle in her eyes she was  joking, laughing,  and chattering away happily.  She was listening and responding as I had not seen her do in a long, long time. 

"Hmm," I told my friend.  "Mom is really different today.  She's not like this.  Usually she's withdrawn and quiet."  My friend didn't believe me.  She was seeing 'Old Mom', Mom from five years ago, Mom who remembered who I was, Mom who could tell you where she was born, Mom who could tell you what she liked to do.

 When my friend left, Mom fell silent and I wondered about this.  What had happened and what was so different now?  I immediately blamed myself.  I didn't take enough time with her.  I worried that I was not as friendly, as engaging, as kind, as warm as my friend.  Too often I corrected and chastised for something.  I was cross, short tempered, impatient.  My voice was harsh, my words clipped, my attitude negative.  I was rapidly slipping into the guilt syndrome.  Then I thought of something.  When I was a young mother, I would correct the children anticipating behaviors that I had come to know all too well but others might not actually see.  Perhaps to others I appeared strict.  With my mother, the same was true.  Just because she seemed cogent, didn't mean that she was. 

While my friend was visiting we had tea and assorted pastries.  Knowing that my mother forgets that she has eaten she will continue to help herself until she becomes sick to her stomach and then throws up.  It is extremely unpleasant and I try to offset this by removing food that might be in front of her.  As we sat sipping our tea and conversing, Mom continued to reach for sweets.  I took charge by telling her that she might want to stop sampling the sweets; reminding her that she had asked me for Tums a half hour earlier because of heartburn.  I moved the plate away.  My mother's expression changed.  She was like a small child whose mother took her ice cream cone away. My friend regarded me like I was ruining all the fun.  She said something  to lighten the mood and looked at me for permission to give her just one more.  I relented.  She invited my mother to sample one more sweet and Mom's eyes brightened immediately.  Later, after my friend left, Mom asked me what she could take for indigestion.  There was no point in reminding Mom that she had overeaten.  Instead I gave her more Tums and watched as she chewed them and sat down at the table waiting for me to prepare dinner.  I sighed deeply.  I knew that I was fighting a losing battle. 

In the middle of the night Mom's bedroom door opened.  The alarms sounded and I nudged Skip to go see what was going on.  (Yes!  He is a saint.  He is more patient with Mom than I am.  Of course it is partly because she is his mother-in-law and not his mother.  I think that makes a difference.  One can be more detached and more patient when not directly related.)  He came back down saying that she was very confused and didn't even know who he was.  This morning when Mom called to come downstairs,  I could see that she was very disoriented and required far more assistance with everything.  She made mistakes:  she took her nightgown off, put on her underwear and then put her nightgown back on.  She put her shoes on before her socks.  She reached for her pillowcase confusing it for an article of clothing.  I could tell that today would be a 'bad day'.  She spent time wandering about mindlessly.  She would go from chair to chair, from room to room never staying in one place for more than a minute.  She reminded me of a caged animal.  I asked her if she would like to draw and she declined saying she would watch TV but when she sat to watch she would remain  for only a minute before returning to her pacing, going from one room's chair to another room's chair, perching for a moment, touching something, looking out the window, picking up a paper, turning it over, reading it for a moment with no comprehension and then back to another room to do the same thing.  I tried my friend's tactic of enthusiastically involving her in conversation but my words fell on deaf ears.  She was engaged in obsessive behavior rubbing at her face and arms over and over.  Just now, she finished her lunch, took her glass of iced tea and poured it out into the sink then threw the glass in the trash.  When I stopped her she protested saying that it wasn't the trash. 

"What is it?" I asked her. 

She looked around in confusion.  She had no answer.  Then, as I lifted the glass out of the trash and placed it in the sink she told me that she had put the glass in the sink.  She gave me an accusing look as if to say, "Why would you say something so silly to me when I clearly put the glass in the sink?"

I wanted to call my friend and ask her to come over immediately.  I felt exonerated.  I don't know who was having tea with us yesterday.  This was my mother.  She was back.  Wait.  What was I saying?!  I have spent the past 2 years complaining about the awful progression of Alzheimer's disease and how it has robbed me of my mother.  Then, the moment she comes back even just a little, instead of celebrating the moment I become defensive.   I realized how much I had changed.  In the beginning I was in denial.  I expected my mother to bounce back from her cognitive difficulties.  I wanted to hide them from others and was embarrassed by her small slip ups, forgetfulness, new mannerisms. Once I realized that she would not return to the mother I had always known, I accepted that fact and now I wanted others to know it too. 

It was another epiphany.  I had turned the corner.  From denial to acceptance, I could let go now.  There was no need to correct, to argue, to scold.  It was a startling realization!  Even though I usually celebrate each new insight I may have in life, this time was different.  This insight came  with an overwhelming sadness.  Once again I reached deep within...to my core...to my center to find the love, the wisdom, the understanding that would get me through this.  With a sudden determination, strength, and daughterly love for her mother, I gave Mom a hug.  "I love you, Mom," I told her.  In a flash, the sadness, the frustration, the impatience vanished.  In their place -- gratitude.  It came on the wings of my mother's sweet smile.

The Piano Tuner (an excerpt from Fine Tuning My Life)

The tall elderly gentleman walked into the living room surveying its furnishings, eyes alighting on the reason he was here.  There was instant recognition and approval as he walked over to the piano and touched the fine wood cabinet.  He placed his black leather case on the floor and sat down on the bench. His long fingers stroked the keys lovingly. With theatrical gestures he turned to the piano keys, lifted his arms gracefully with elbows bent, wrists arched and fingers held just above the keys.  He paused as if he were choosing the right moment before beginning. He elevated his chin and then lowered it leaning into the piano as he struck a single chord. Then, as though he were performing for an unseen audience he inhaled dramatically and began playing.  My mother stood by and listened appreciatively as his fingers moved deftly across the keys executing progressions that evoked images of a concert pianist.  I recognized bits and pieces from a piano sonata from a record my parents played.  I was in awe of the man's ability.  He stopped playing and turned to my mother. They spoke quietly and then he reached for his bag.  My mother stepped back and regarded him a moment then quietly left the room.  I remained peering behind the door, my vantage point hidden from his view.  My mother whispered to me that I must be silent so as not to disturb.  I was a shy and curious child.  I would remain to observe what was happening without being seen. Even at that young age I knew that I was

 witnessing something unique, maybe magical.  I should remain a silent witness to the process.  I watched as he extracted his tools.  One metal object was particularly interesting. It was smooth and two-pronged.  I had never seen anything resembling it. There were other things too: a small hammer and some red felt strips.  He opened the top of the piano revealing the strings and felt hammers.  He bent over and began his work.  I couldn't see what he was doing and though I wanted to move closer I stayed where I was, hidden.

The man reached over, lifted the two pronged fork and tapped it.  There was a vibration that caused a tone.  I learned later that it was a tuning fork.  He cocked his head and concentrated on the tone.  Once again he bent over the internal parts of the piano moving quickly and expertly.  He played a single note and listened carefully.  He made adjustments and moved on.  He played notes over and over not satisfied until he heard what I could not hear.  His practiced ears caught the subtleties.  I was mesmerized by his training...his ability to hear the slightest variation in tone.  When he was finished he took a deep breath.  It was as though he had not breathed the entire time for fear that he would interrupt his work or inhibit his perception.  He put down his tools, sat back down on the bench playing arpeggios, then a quick classical offering that made me want to applaud his prowess. 

The man stood up, put his tools back in the black case and gave a satisfied smile.  He looked over at me as if he had known I had been there the whole time.  He winked at me surprising me with his acknowledgement.  I was embarrassed and blushed deeply.  My mother came up behind me and told the man my name.  She told him that one day she

would teach me to play the piano but I was still too young.  He nodded approvingly.  Then my mother paid the man and showed him to the door.  Our piano was tuned.  I had not even noticed that it had needed tuning.  I asked my mother about it later.  She told me that even though we might not be aware that the piano was out of tune the piano tuner had come to perform a 'fine tuning'.  I asked her about the tuning fork and she told me how it worked.  I thought that it was something very special.  For weeks I imagined owning a tuning fork and using it to observe the slight variations of sounds.

This is how I would later view my actions in life.  I would do something and then observe the effects.  I would sometimes have to modify--to 'tune' my behavior, reaction, mood, or emotion. It was my imaginary tuning fork that provided the guidance to tune the strings of my life--the stings that held the days and years together with the vibration and acceptable variations that made beautiful music and provided a harmonious environment.

"There's Someone Sleeping in My Bed!"

My mother is convinced that there are people sleeping in her bed when she is not up there.  We keep the door between our home and our apartment (that houses our son and also Mom's room on the other side) locked so that she will not wander up or (worse) down the stairs. Still, whenever our son opens that door to say "Hello" of "Good-bye" she shoots him an accusing look that says, "Who are you and why are you sleeping in my room?"

This evening it happened again.  As our son unlocked the door and greeted us I noticed my mother glaring in his direction.  As is the norm these days, she fluctuates between recognizing him and being confused as to who her grandson is.  This evening he was a stranger and he was clearly usurping her right to go upstairs to her room because he was occupying that space.  Why?  Because evidently he shared her room with her.  When I tried to correct her she remained firm on her opinion.

"You don't know!" she told me.  "I've seen him in my bed."
"Really?  When?"
Mom thought for a moment struggling to recall the incident.  "It was a while ago but he was sleeping in my bed!" she replied emphatically.
I tried not to laugh.  I reminded her that she is not in her room during the day and would never have seen her bed other than when we take her upstairs at her bedtime. "I can assure you, Mom, Bill has NEVER slept in your bed."

Mom remained unconvinced even when I explained that Bill lives on the other side of the apartment.  My husband Skip and I decided to take her upstairs a few minutes early to take her on a tour of  the apartment (both sides) to remind her of where Bill lived.  This was not the first time.  We had done it a week before with the same results.  She looked around like she was seeing it for the first time. Then she rolled her eyes and said, "Well I know that he was in my bed.  In fact, I've seen two people in my room," she added as she embellished her story with a certain indignant delight. She was so convincing that I felt like I should be chastising Bill for going into Grandma's room to take a nap. I also felt like I should be searching for the other 'stranger' who was obviously visiting Mom's room while our backs were turned..  Meanwhile we keep reminding ourselves that Alzheimer's disease causes hallucinations.  So...before we rush out to buy keyed locks to put on Mom's bedroom door, we will continue to indulge Mom's fantasies until we grow impatient and take her for the tour.  We will also hold our breaths and hope that she doesn't choose another route to handle this (perceived) intrusion in her boudoir by taking a stroll to the other side of the apartment and going to sleep in our son's bed!

YUP...it could happen!

A Strong Reminder

I spend my days caring for my mother with additional work responsibilities and sometimes a social call or two.  My days are busy but not always fruitful.  Often, I feel disappointed and frustrated, even angry at the end of the day.  Yesterday,  after dinner, I asked Skip to come with me to run an errand.  We took Mom of course since there is no other option.  I truly would have preferred to be alone with Skip but getting out on our own is not  possible since we have to prearrange a caregiver to come to the house.  The Summer evening was beautiful.  There was a storm building in the West and the sun glowed behind the large clouds shooting its rays between and around them.  As we drove we remarked about the ever changing skyscape marveling at the beauty of nature.  It was a totally rejuvenating moment. I arrived home feeling refreshed and calm.  I put Mom to bed and enjoyed an entertaining program on TV.  Skip was busy answering emails across from me in the family room but we sat companionably in the room making small comments back and forth as the evening progressed.  At bedtime I congratulated myself for overcoming my stress.

This morning I turned on the news and heard about deaths, tragedies, uprisings, demonstrations, political battles, violence, hardship.  It was too, too much for me.  I wanted to bury my head in the sand.  My mother sat beside me silently.  I regarded her as she repeated a behavior I corrected.  "Put your dirty Kleenex in the trash," I counseled her for the hundredth time.  She unwrapped the tissue from her finger and placed it in the trash bag.  I reminded her just how disgusting it was for her to blow her nose and then handle the tissue with her fingers.  I was immediately aware of how I felt: stressed and impatient.  I had allowed the morning to 'get to me' and was reacting in spite of myself.  Where was my sunset?  Where was my calming and companionable moment with my husband?

 I opened my emails.  I read an email from a friend who told me that her husband had cancer.  It was a shock almost like a slap in the face.  I was stunned.  So many of my friends, neighbors, and loved ones have cancer or other life-threatening illnesses.  Once moment they are fine...healthy and the next they are told that they have been given a finite time to get their affairs in order.  It is pervasive and a constant reminder that our days are numbered.  

I began thinking about how disruptive this news would be in one's life. Yet,  when we are reminded that our lives are unpredictable, being given the news of a terminal illness is an opportunity to change things, to prepare, to call old friends, to make amends for things we have done that might have been wrong.  The chance to say good-bye and to allow for closure is a way of facing our imminent death with grace. 

As I considered this I gradually came to realize that regardless of all of the reminders, (and even my own philosophy) I had allowed myself to become numb to the minutes and hours that I was wasting in the short period of time I had left with my mother.  For that matter, in the overall scheme of things, there was only a short period of time in my own life -- even if I lived to be ancient .  I saw how quickly my years had passed.  I wanted to hold each moment, to relish it and celebrate it.  I wanted to reach out to everyone and tell them to do the same.  How could we waste time on petty grievances, on ugliness?  Why would we want to experience or condone negativity? THE NEWS!!!  AURGH.   I turned off the morning news...the invasive, omnipresent malevolent influence on my well-being and attitude. Once the news was not broadcasting it's negativity I tapped into that more positive part of me.  I looked at my mother and smiled at her.  I spoke gently and patiently reminding myself that her days were counting down and unwinding.  

I am once again reminded to look at things differently...with more appreciation...with less anger, disappointment, impatience, negativity.  Yes, it is sad that our bodies fail us, that our systems cease to operate effectively, that disease and disabilities overcome our health.  It is a reality that we all must face but it doesn't make it any easier.  All we can do is move forward with love, care, and compassion.  I want to be the person who has a zest for living. I want to be a positive influence who will bolster and support others regardless of their troubles, illnesses, and issues.  This is my mission and my hope for others as well. 

I want to preach my mission and yet it has all been said before.  Does it bear repeating?  Of course!  Over and over we say it to ourselves and to others:  

'Turn off the TV, the electronic devices, the distractions.  Focus on the people in your life, the love you feel, the nurturing, the caring, the laughter.  If it is not present, then find it or create it.  Treat each day as if it were your last and live it to its fullest.'

We hear this message so often. Why do we not take any action? WHY?!!!  I have only to look within myself for the answer.  There is that constant battle to maintain a light within when there is always the temptation to succumb to the darkness that also resides there. I am bombarded by temptation to ignore the light.  I am distracted by everything that turns my head.  Vigilance...awareness...a strong mission statement that I check and recheck keeps my journey on course.  There are stop signs along the way and even road closures that require detours, but with the strong vision of what I want from life, I find fulfillment and true happiness.