Blank Screens and Striptease Sundays

 

 Mom has supplied me with enough material to fill a book this past week.  Late stages Alzheimer's provides us with quite a challenge, lots of mess, plenty of difficult moments, and more and more that we can shake our heads at. I am finding that every day she has at least one outburst, stubborn, or agitated moment.  She ignores, plays deaf, scrambles her words and thoughts, misunderstands, does something unprecedented, does something unsafe, and throws the house into turmoil.  She's just one little old lady but my oh my can she create drama! 

So...this week when I was mentally and physically exhausted and wanted her to go to bed I announced cheerfully, "It's bedtime, Mom.  Are you ready to go to bed?"  (I shouldn't have asked.)

Mom's answer was a definite, "NO!"

"No?" I replied a bit dumbfounded.  "Aren't you sleepy?  I thought that you wanted to go to sleep."

Mom didn't reply.  She turned to watch TV.  Evidently there was a commercial on that held far more interest than human interaction.

"Mom?  Can you answer me please?"

Mom continued to stare at the television even leaning forward to feign far more interest than usual.  (Now, I must take a moment to clarify that Mom never follows anything that is on TV.  She watches but doesn't know what she is watching and has no comments about anything that is on.  If I ask about something like, 'Did you see that cute dog?' she stares without comment and if I continue to ask, she tells me that she wasn't watching.) So, I knew that the TV was not something that was distracting her with a riveting message.  "MOM!  Pay attention to me!" I insisted.  "Did you hear me?"

(No answer.  Not even a twitch.)

I could feel the impatience welling up inside.

"Mom!  MOM!  MOM!  M-O-M!!!!"

Still nothing.

I tapped her on the arm.  "Mom can you hear me?"

"I don't want to go to bed," she answered.  

(AHA!  She did hear me!  Now I knew for a fact that she was simply choosing to ignore me.) "Turn the TV off," I told Skip.  Then I stepped in front of my mother and lectured her like she was a small child.  "You're being rude. When people talk to you, you should answer."   

Mom looked past me to the blank TV screen and remained silent.  I sighed deeply and sat down relishing the quiet in the room with the TV turned off.  "Okay, we'll just sit here then.  I went back to my laptop where I was editing something and Skip went back to his laptop to read a news article.  The fan overhead continued to click as the blades circled around and around rather like a clock...'tick, tick, tick, tick.'  It was making me sleepy.  Minutes passed and I looked up to see my mother staring blankly at the TV.  I couldn't help myself...

"How's that show you're watching?" I asked.

"It's okay," she answered without enthusiasm

.

"What's it about?"

"Oh.  I don't know yet,  I just sat down."

"Well let me know if it's good," I continued cheerfully. She leaned forward as if to see the screen better.  I waited ten more minutes enduring the frustration of watching my mother stare at a blank screen until I finally had enough and got up, took Mom by the hands and led her to her room.  "You're going to bed now," I told her kindly but firmly.  Mom followed like a dutiful child.

Fast forward to Sunday when the weather was warmer but not as hot as last week . That's when I had  the unfortunate encounter with Mom (when I tried to bring her inside from the screened porch because she was frying her brains out there. )  She had a tantrum and lashed out at me yelling that she wasn't hot.  Well, this week and particularly Sunday when it was at least 8 degrees cooler, I looked up from my seat in the family room where I can keep an eye on Mom just outside the window.  I noticed her moving around in her chair. I thought that maybe she was getting ready to come back inside.  Skip was sitting across from me and blocking a complete view so I asked if he could see what she was doing. 

"Oh no!  She taken her blouse off!" He announced with a groan.

I too groaned audibly.  Needing to save my work on my laptop, I put off going outside for a minute.  Meanwhile Skip decided that he needed to be anywhere but where he was and made a quick retreat to his office.  By the time I stood up Mom was bending over and wriggling about.  I rushed to the door in time to catch her taking her pants off and about to remove  her bra.  "STOP!"  I told her.  "What are you doing?!"

"It's too hot!" Mom complained pulling at her bra.  

"Nope...no...nun uh.  These stay on!"  I began to put her pants back on and Mom threw a fit.  

"It's too hot!  Stop it!!!"

I strong-armed her back into her clothes and took her inside explaining fruitlessly that one doesn't take one's clothes off in public.  (In fact, with the new construction going on next door to us if it had been a weekday Mom would have caused some poor workman to have nightmares.) 

When Mom walked back inside I could detect the familiar smell of wet diapers and told her to go to the bathroom.  

"I don't have to."

Hmm.  I guess I had to agree that the horse was already out of the barn so to speak.  I looked away for a moment and Mom sat down on Skip's chair.  "Don't sit there!" I yelled as I turned back.

"Why not?" 

"Because you're wet and smelly," I mumbled.  I knew that she couldn't hear me and that made it okay to verbalize.  While she waited for an answer I did what I try not to do.  I let my inner child out deciding  to give her a taste of her own medicine.  I turned away from her and averted my gaze. I acted like I never heard her question.  She stood there waiting for me to answer but stubbornly I refused.  Then I noticed that there was a TV commercial  on.  "Yep," I told myself. "Two can play this game."  I walked over to the TV and stood there totally engrossed in a toilet bowl cleanser commercial because, well, you know...it was just so very interesting!!! 

A Difficult Day

It was such a difficult day.  I found myself becoming more and more upset.  It wasn't that I was feeling sorry for myself.  No!  In fact it was not about me at all . I found myself feeling so sad about what was happening to my mother.  In the past week she had hit a new low.  Unhappily I could see that this was to be the new normal for her.  Alzheimer's Disease progresses and with regularity there are changes that are at once surprising and upending and then predicted, expected, and regarded with acknowledgement that they are signs of what my mother has become...until  they are not...until there is a new change--a new normal.  So today I had to face the fact that more often than not, my mother cannot find the right words to describe, to ask, to identify.  She has no clue as to who I am other than my name.  She describes both of us (my husband Skip and me) as "those nice people".  Since she has lived with us for over a year, I have cared for her and answered her every need, yet she now ascribes the care given to her as being given by others.  She watches me as I prepare her food but moments after being served she cannot tell me who prepared it or who served her.  She no longer knows what she is eating and even if she likes it she cannot tell me what it is. 

So, yes, today was a difficult day and I was sad, so very, very sad.  Then, as I felt heavy with depression, I went into the kitchen to begin dinner preparations.  I stood at the sink and it overcame me.  It washed over me like a heavy blanket of gloom.  I sighed deeply.  I looked for energy to move myself but found that I was bound by invisible handcuffs.  I couldn't lift my arms.  I couldn't move my feet.  My chin dropped to my chest and tears began to flow.  I told myself to be strong, to smile, to shrug it off.  Instead I pushed the sadness deeper inside of me. 

After a minute I successfully buried the sadness and was able to function.  I began my work to provide a healthy meal for Mom.  Shaking my head I ignored the little voice inside of me that said, "What does it matter what you make?  She won't know the difference!"  Yes.  That was true, but I would know.  I promised myself that I would be the person who did the 'right thing' regardless of what she knew or remembered.  So...I moved forward.  I stirred and chopped.  I measured and sliced. 

Just then my dear husband walked in from his errands.  He had picked up the mail from the box at the curb and was carrying assorted envelopes.  Among the myriad sizes and shapes, there was  a box.  Skip smiled broadly and proudly as he handed me the box saying, "Here's a surprise for you!" I put the large utility spoon down on the stove and cleaned my hands. 

"What is it?" I asked with anticipation and (despite my mood) even a little excitement.

"It's a surprise!" Skip repeated not wanting to say more.

I allowed myself a smile as I reached for a scissors.  Opening the package and rummaging through the packing materials I extracted a beautiful and ornately decorated box that boasted the letters V.E.R.S.A.C.E.   The smile grew to a grin as I lifted the container and read the name of the perfume inside. The growing realization was quite surprising:  Skip had paid attention when I had rubbed a sample of the perfume from the advertising enclosure in a magazine a few weeks prior.  He smelled my wrist when I told him I liked that fragrance.  He remembered the name and ordered it online.   He, who ignores dates I tell him, times to be ready for an event, names of people about whom I am talking, movies I want to see,  and messages I deliver; he remembered this!  I was overcome with emotion.  I hugged him and thanked him with such intensity that he searched my face for what he already knew to be my mental state.  I then explained what had happened and what I felt.  His eyes softened and his brow furrowed with empathy as he told me how sorry he was.  He hugged me and kissed me softly showing his care and love.  My dear friend--my BEST friend listened to me.  He paid attention.  He acknowledged.  He loved. 

With apologies to an old creative writing teacher who instructed me to be careful not to use descriptions that don't make sense,  I thought of how I was feeling  and the only words that came to me were, ' My heart swelled with gratitude' and yet I knew that this did not really happen...or did it?  Honestly, it felt like it had expanded.  I put my hand to my chest to contain the happiness that replaced the sorrow.  It was futile. I needed to allow this happiness to be something I could share.  I am so happy to have my husband with whom I can share my feelings.  For some, I realize there is no one.  Yet, as a caregiver, I understand the importance of sharing.  It is not that  caregivers necessarily want to share,  it is that they  must share--HAVE to share.  I have said it before: we should not keep our emotions bottled up inside.  The negative emotions will cause damage not only to our psyches but to our bodies and need to get out.  The positive emotions when shared will bring reminders to others to look for appreciation, joy and happiness.  When we do not have a mate, a friend, or a confident, we must look for others to hear, to witness, and to validate.  There are people everywhere to whom we can turn.  There are support groups, counselors, neighbors, family members and kind strangers.

As an 'Expressive', I document my ever-changing shifts of emotion for all the world to read.  I broadcast the changes to help others to understand and maybe relate to the journey I am taking.  Perhaps others will see, understand  and take action accordingly.  This is my hope.  We are not alone and when we realize this; when we experience the kindness, the thoughtfulness, and the wonderful surprises that fill our lives, then we can face even the most difficult of days.

Controlling Interest

About 10 years ago I had an epiphany. My husband Skip and I were driving in a new car and listening to some music that didn't appeal to us. I reached over to the car radio buttons. I hesitated for a moment to look at the controls trying to figure out what to do. Finding the right button I depressed it to change stations. Like a flash, Skip pushed his fingers to hit the button again.
"What are you doing?" I yelled.
"I'm changing the station," he answered definitively.
"I know that," I answered with a heavy dose of sarcasm. "Didn't you see that I was already changing it?"
Skip didn't answer. This did not make me happy. I wanted an explanation for his behavior. "Don't you think I can change a radio station?" I pushed for an explanation.
"You were doing it wrong," he mumbled.
"What? WHAT?! How could I be doing it wrong? That's ridiculous." To demonstrate that I knew what to do I reached over to change the station again. "Where's NPR?" I asked as I moved closer to the button. Skip's hand was there covering the controls. He brushed my hand away. Unwilling to yield to his knob-pushing prowess, I persevered. I pushed his hand away and studied the controls. A split second later, Skip answered my push with a shove. Before I knew it we were having a push and shove fight with our fingers. We were like a couple of four year olds. We were getting angrier with each assault of the other's index finger. Skip won delivering the station I sought. I was immediately angry and silent. (That's always a bad sign).
Skip wore a victorious expression as he returned his attention to his driving. I however, didn't want to drop the subject and allowed my anger to foment as I thought how bullying it was of my husband to push my hand away. Suddenly it came to me--my epiphany! After so many years of marriage I discovered that he was a control freak!
Oh my G-A-W-D!!! I was married to a CONTROL FREAK!
I was about ready to let him know what I thought of him when it occurred to me that I had given as good as I got (so to speak.) Oh no. There was my bigger epiphany: we were both control freaks. This newfound enlightenment came as not only a surprise but an embarrassment. How could I have overlooked something so obvious? We had been married for...like...uh...FOR-EVER! I couldn't wait to share my revelation. "Hey Skip. Guess what? We are BOTH control freaks." I made this declaration like one might announce that she had received a special award.
Skip thought for a moment and then grudgingly agreed. "I guess that's not too good," he observed.
I nodded in agreement. It became a somber moment as I considered the ramifications. Putting a name on it helped me understand past squabbles. I reviewed the time I told Skip to stop pulling weeds because I was unhappy that he was removing the 'greenery' on our front hill when we were having a party the next day. He continued weeding thus ignoring my attempt to control the situation, and asserting his own control. There were lots of examples that led us to don our battle gear. Aha! Now I understood.
The problem with seeing one's personality deficits is the strong desire to sweep them under the carpet. There was no question that this was a huge blow to each of our self esteems. Perhaps it was best to ignore this knowledge.
Well, as I said when I began; that was 10 years ago. Since then nothing has changed. In fact it may have served to highlight our imperfections and elevate them. I believe that each of us wears our self discovery as a badge of honor. We make no excuses. We embrace our differences and indulge our...um...' similarities'.
I sometimes think that even when we are old and decrepit we will still continue to vie for control of every situation; neither of us willing to give ground to the other. I can see us now. Skip and I will have walker wars as we struggle to reach the TV remote before the other. We may be shuffling and drooling but, alas, we will still be card-carrying Control Freaks!