Goodnight, Mom

I am awake.  I can't go back to sleep even though it is stll early morning.  All I can think about is what I have done.  I don't feel guilty about it but I feel sad and sorry.

Yesterday we received a call that a room was ready for my mother in a skilled nursing home.  We had planned on moving her later but the room was available a day early.  I wasn't ready yet but Mom was more lucid and able to move around, so we decided that there was no time like the present. Skip and I had agreed a month ago that it was best for Mom and for us.  Mom needed a place where there were no dangers.  Our home was an accident waiting to happen.  There were steps, stairs, and wires.  There were obstacles and distractions.  Mom was prone to fits of intense anger.  She was fearful  of moving, of standing up., of lying down.  She reacted in violent outbursts.  She would scream, punch and throw her body backwards, mindless of how she could cause herself (or others) harm.  The sedating drugs we sprinkled on her food helped a little but we worried that she would drop the food on the floor (which she often did) and our dog, Kira might eat the food and ingest the drugs.  I worried, I stressed, I watched.  When I left the room, I hurried back.  When I couldn't be with her, Skip had to stop what he was doing to watch, to assist, to do all of things I never, ever, EVER wanted him to do. We couldn't do any more than we had already done but when the decision was made, I questioned it.  I worried and cried.  Finally, resigned to the inevitable, I packed up a few things and loaded Mom into the car.  Mom didn't want to go.  We told her we were taking a drive but somehow she knew.

"No.  I don't want to go. Please," she begged as she turned away from the door.

All these months of mindless existence evaporated as she understood what was happening.  She turned to me with a panicked look in her eyes, "Let me...I wanna...please."  She couldn't put the words together, but I knew what she wanted to do.  She wanted to sit in her chair.  She wanted to close her eyes and nap quietly.  She wanted to be lifted gently when it was time to move to the kitchen for her dinner.  She wanted to hear the familiar words and sounds  that she only partially understood, 'It's time for dinner. It's time for bed. It's time to change your clothes.'

I couldn't look into her eyes. I knew I that my resolve would evaporate. "Maybe we should wait until tomorrow," I told Skip.

"No.  We need to do this now." My loving husband, my rock, my anchor reminded me of all of the reasons we had to follow through with the plan.  Four years of dedicated caregiving, four years of staying home...putting Mom first, deferring our own needs: trips, parties, nights out, social engagements,work, personal care, and unnecessary expenditures--we needed our lives back.  There was nothing more we could do for Mom.

We drove down our driveway and I knew that Mom would never again sit in our kitchen. She would never walk through the door or drive down this driveway again. I glanced back at Mom sitting silently in the back seat.  She looked small and vulnerable.  She was our almost 100 year-old child, our ancient baby. I smiled at her trying to mask my feelings.  Tears welled up in my eyes and I turned my head to focus on the road. The rain had stopped and the sun emerged from the clouds.  The Carolina sky sparkled its perfect blue in the large puddles that collected along the roads.

"What a pretty day!" I remarked, hoping that Mom would notice.  She remained silent and unseeing. I wondered, "What is she thinking right now?"  We drove out of the neighborhood thinking our own thoughts.  The car was heavy with silence, with sadness. Then, from the back seat a small voice spoke with a clarity we hadn't heard in many, many months.
"Where are we going?"

I wasn't prepared for this.  I searched for the words.  Then, I replied, "We're going somewhere you've been before." It was true.  She had been to the nursing home when she needed rehab after falling and breaking her clavicle.  Then I added, "You're going to see the nurses and doctors." I don't know if she heard me.  I know that she wouldn't have understood even if she had heard me.  Her eyes were already glazing over.  She fidgeted and fiddled with her sweater and then sat back motionless.  I thought that she might be falling asleep but her eyes remained open and again I found myself wondering if she knew something, if she understood more than I thought she did. Had part of her brain awakened? Fresh tears fell from my eyes and I struggled to regain my composure--my unemotional self.

When we arrived at the nursing home I rushed out of the car leaving Skip to help Mom. I wanted to meet with the admissions people, sign the paperwork, to complete the process and leave.  I needed to hold it together just for this little amount of time--to get through without falling apart.  I remembered how I felt when we put our dog down and how I tried and failed to hide my sadness--how I rushed off to cry alone.  I felt the same now.  Granted, we were simply putting my mother in a safer environment, but the thought that she might not flourish in this environment, and the knowledge that she would die here made me want to grab her and hold her...to take her home again...to erase my resolve.  In an irrational moment I wanted to turn around and walk back out the door.  I glanced back at the car and then turned with all of the emotional strength I could find. I had to show my brave face, my resignation.

"Hello.  I'm Jessica Bryan.  I'm here with my mother, Pauline."

The paperwork was completed.  My painted smile quivered when the admissions clerk asked if my mother had a living will.  I wanted to cry out, "My mother is nearly 100 years-old with an incurable illness.  She's in last stages of Alzheimer's.  There is no reason to keep her alive.  There is no quality of life!" Instead I shrugged and said that she probably had one somewhere, but for now I would make the decisions as her daughter--her Power of Attorney. I would do the humane things, the things that would be sensible when the time came.

Skip joined me after having escorted Mom to her room and carrying in her few belongings that I had packed.  I reminded myself that I had forgotten her comb and instantly felt remorse.  (Okay, so this is how it was going to be.  I would spend my time feeling remorse over stupid things. I would beat myself up because her hair might be unkempt for 24 hours until I could get back there!)

We walked to the Alzheimer's wing after we thanked the nice lady for processing the paperwork, the nurses for taking Mom's medications, the orderly who showed us how to release the door lock that kept the patients inside--locked away behind the doors, away from families and normal life. I walked into her room, a clean room with sparkling floors.  She sat alone, tiny, and old--so old.  She looked up and tried to smile bravely but I could see the fear and confusion in her eyes. I told her we were leaving now but would be back soon. Skip took my hand as we walked down the long halls filled with residents lining the corridors, gazing without seeing, sitting without interacting, speaking without understanding. I lowered my eyes  and listened to the sound of our footsteps on the stark floors and echoing against the institutional walls, gulping air and trying not to cry until I got to the car.

Last night as I fell asleep I thought of Mom.  She was surrounded by people--lots and lots of people.  Yet, she was alone.  I sent a prayer that she would be okay, that she would know I was thinking of her and most of all, that I loved her. "Goodnight Mom," I told her, knowing that she would never again  hear me say that as I tucked her into her own bed in her own room.  "Goodnight Mom," I repeated,  knowing that I would see her in a few hours, that I would care for her needs in a limited way, that I would show her my love as well as I could, that I would say words that made me feel better but would have little effect on her.  I was sad--oh so sad.  I mourned for my mother who little by little had slipped away.  I was too preoccupied to mourn for her while I was tired and frustrated in my caregiving role.  I was busy.  I was tired.  But now, in the quiet of the night, I listened to hear the familiar sounds of her breathing over the monitor.  There was nothing but silence.  I told myself over and over that this was the best decision, the right decision.  Now I would have time to remember the mother I loved, the mother I cared for, the mother whom I would visit without feeling exhausted and frazzled by my caregiving duties, the mother I would hug and love even though she couldn't return the emotions.  One more time, with tears beginning anew, I breathed the words to her empty room, hoping that somehow, across the miles she would hear me.  "Goodnight, Mom."

It's 5 AM: Do You know Where Your Mother Is?

I can hear it ringing in my ears, "It's 10 PM. Do you know where your children are?"  It was a Public Service Announcement that used to play on TV.  Nowadays, we are so connected electronically that we know where EVERYONE is all the time!  However, at 5 AM I have no desire to know what, where or who is anywhere.  All I want to do is sleep.  Unfortunately, my mother often has other plans.  This morning, for example, I was jarred out of a wonderful dream by a cacophony upstairs broadcasting across the monitor.  Mom was clanking and banging in the most unusual way prompting Skip to run upstairs to see what all the ruckus was about.  Evidently Mom thought that it was a fine time to scrub her disposable adult diapers with a toothbrush..  "Now where is that thing?"  She rifled through her cosmetics box, the drawers in the bathroom, and myriad items situated on her vanity.  Obviously, the toothbrush was not easily found but alas, she finally discovered its whereabouts and began her washer-woman scrubbing technique with some soap and water.  Swoosh, swoosh, back and forth.

"What the heck is going on upstairs?" I asked sleepily when Skip returned.
His muffled response displayed how annoyed he was.  "Oh...she's scrubbing her diapers..." Then he mumbled something else and crawled back under the covers.  I couldn't understand what he was saying and asked for more of an explanation.  Once he told me, I thought about what Mom had been doing and then my brain got busy thinking...thinking about Mom, thinking about what I had been dreaming, thinking about what I needed to do once I got up, what I had forgotten to do the day before.  I was now wide awake.  There was no way sleep would return to me.

When I finally made the decision to get up a half hour later, I was resigned to the fact that my day would start early in a productive flurry of work.  "I'll check my emails, and be able to reply in peace and quiet without the morning news blaring in the background," I told myself. However, I soon discovered that NOBODY writes me emails at 5:30 AM!   I was stuck staring at a blank screen.  "Aha!" I thought.  I'll begin reading my next book for book club, but I hadn't bought the book yet and when I went searching for the ebook to download, I was disappointed to see that it was far more expensive than most ebooks.  "Nope!  I'm not paying that much for a book that I might not even enjoy. I'll get it from the library," I told myself. Okay then...no book, no email, and noise still coming from upstairs.  

I'm usually so busy that I complain that I never have a moment for myself but now, I had a couple of hours before the day would start and I didn't know what to do.  I found myself laughing out loud as I thought of the irony in all of this.  My thoughts were interrupted by a loud bang.  I looked at the video from my mother's room to see what Mom was up to now.  She had moved over to her dresser and was launching her walker into the side.  Bang!  Bam!  Then she wandered to the wall to park her walker and sit back down.  Bang! Bam! She pushed it into the wall. Then she got back up and walked to her closet where she must have thought by crashing into the door with her walker, it might magically open.  Bang! Bam!  

I yawned loudly and sat back down on the sofa.  It was still dark outside and if only it were quiet upstairs I thought that I might actually fall asleep; but another loud bang against a cabinet or the wall assured me that sleep was not possible.  It was now 6:00 AM and with each loud reminder, I knew EXACTLY where my mother was.  I also knew where the dog was, where my husband was and where the rest of the normal people were.  They were (mostly) in their beds sleeping and enjoying the last hour of blissful sleep.  

When it Rains, it Pours--LITERALLY!

What a week it was last week!  Mom has been her usual self and I have had a full week of watching her.  She has manically walked in and out of the house to the porch, the kitchen, the hall, the kitchen, the porch.  Over and over...round and round she goes.  Each time, she leaves the door to the porch open and I can practically see the dollar bills flying out the door as the cool air escapes into the hot muggy outdoors. In between these meanderings, Mom always circles the kitchen touching everything that is left out.  If food is out she snips off a piece, samples, bites, or pokes her finger into whatever the item is.  This is a problem because her hygiene is so poor I cannot keep up with where her fingers have been.  I shudder just to think about it.  The other day, Skip made the grievous mistake of leaving half a peach out on the counter.  Mom had just finished a large lunch including her fill of peach slices, but in her demented state she didn't remember this fact and so she stood up from her place at the counter, (some sandwich still on her plate) and picked up the peach.  My attention having been diverted for a moment didn't notice this and therefore it wasn't until Skip returned for his remaining peach half that I saw what had happened.

"Um...did you take a bite of this?" He asked accusingly. He held up the peach with a large bite right out of the center of it.

I laughed out loud.  "Really? Would I do that?!  If I wanted a bite of your peach I would have taken a knife and sliced a piece off."

Skip nodded in agreement.  He knows my habits and realized immediately that he was 'barking up the wrong tree'.  Then he cast a dark look at my mother.  Imagining the germ-infested peach, he handed her the rest of it.  I felt sorry for him because it was a really lovely peach. (We haven't had many of those this year.)

Caring for Mom is a full-time job, but there are always other things in our lives that keep us spinning, our lives in turmoil, and our days full of distractions.  For example, it is currently hurricane season here in North Carolina which means that when a storm develops out in the Atlantic, we immediately go into our hurricane preparedness mode.  Store shelves are stripped of bread, water and milk. (It's the same if snow is predicted in the winter.)  I don't quite understand this because having been a native Californian my experience in natural disasters was limited to those things one cannot predict: brush fires and earthquakes. Both happen so fast, one doesn't have time to think about what to do.  In California, one just sleeps fully clothed with wallet and cell phone in hand along with car keys and extra batteries in a hip pocket!  I have learned though.  OH MY, have I learned!!!  When in the South do as Southerners do.  Get yourself to the grocery store and buy everything off the shelves, girl.

A couple of days ago, I decided that with the projections for a major hurricane to hit our area in 6  days, maybe I should send Skip out to look for some supplies.  Well, obviously I wasn't the only one thinking that way.  In fact, the entire county seems to have been of one mind and the shelves had already been stripped bare.  Sadly, the one thing that we REALLY needed was nowhere to be found.  We needed a generator.  This was not a convenience but a necessity if we lost power because our sump pump would stop running and (as we experienced in the last hurricane) our basement flooded.

So...Skip went out looking in three or four surrounding counties to see if he could find a generator for the sump pump.  We weren't looking for anything special.  Really, anything would do.  Since Skip was running around on this errand --ALL DAY!!!--I was stuck dealing with my mother without respite.  She was in a particularly zombie-like mood wandering to and fro.  I was trying to get some work done, but between Mom's meanderings, Skip's phone calls asking me to check various websites for availability of the elusive generators, and the oppressive heat, I was not in the best of moods.  By evening, we finally resolved the generator problem when we found one in Charlotte (three hours drive from here).  However, with our daughter and son-in-law living in Charlotte, we could have them pick it up for us and deliver  since our son-in-law was meeting Skip at a halfway point between here and Charlotte so Skip could drive our granddaughter, Julie to a special dance lesson in Raleigh.  Don't even begin to ask me about how we worked that one out and how many phone calls it took for us to figure out that Julie could leave school and make it in time to take a lesson from a choreographer who is well-known in the dance world...an opportunity that just could not be missed!

That night when we finally settled down after dinner and decided to rent a movie to relax and enjoy after putting Mom to bed.  We were just getting into the movie when we heard a blood curdling scream.  I realized it was coming over the monitor system.
"That's Mom!" I shouted, getting up to run to her room.  Before I reached the door I heard her crying out, "God help me."  Now I  KNEW something was wrong.  I ran into her room preparing myself for whatever disaster awaited me.  Mom was sitting on her bed, eyes wide as saucers, telling me that someone was screaming at her.  "That was YOU," I announced.

"No, no.  Someone was screaming and telling me to take it off the mungo muddle..."  Her aphasia had kicked in so I have no idea what she was saying after that.  I finally convinced her that she was having a bad dream, rubbed her back and calmed her down enough to get her back to sleep.  I was about to step back out of her room and return to the movie when she popped her head up, looking like something was terribly wrong.

"What's the matter, Mom?" I asked. There was no response.  I came closer understanding that she had difficulty hearing me.  "Mom?  Is something wrong?" I asked two more times before she replied.

"I have to go to the bathroom," she told me getting up.

I helped her to the bathroom waiting patiently while she moved slower than a snail.  When she finished and opened the door I noticed that her wet diapers were placed on the sink and there was a puddle on the floor.  The toilet was the only thing she didn't use.  "Clean up on aisle five!" I announced over the monitor and Skip came running up with the wet mop.  The movie would have to wait another 15 minutes.

That brings me to my reason for writing this today.  I had a live webcast I was invited to do today as a guest author.  The last time I did something like this I was invited on a podcast and my internet connection was very poor.  We kept disconnecting and the podcast was cancelled.  I was frustrated and angry when my husband explained that my location I chose for the interview was a weak location.  Therefore, I tested the webcast connection and location the week prior to the live show to make sure I had a perfect connection, location, lighting, etc.  I told everyone that I was doing this so not to call me during that time.  Just to be safe and to avoid those pesky robo calls that occur with regularity every 20 minutes or so, I turned all of the phone ringers on mute.  Then, I told Skip that we should have lunch early just to make sure that there would be no noise coming from the kitchen during the show.  I got my lap top set up in the library, set my chair at the perfect angle, adjusted the lighting and even put a note on the front door saying, 'DO NOT DISTURB.  BROADCAST IN PROGRESS.' I needed to advise our son, who often comes downstairs from his apartment to say 'Hello', but I was out of time so I told Skip to text him while I grabbed a sip of lemon water and returned to my laptop.

With all of the preparation, one would think that nothing could go wrong.  Au contraire.  This is MY life we're talking about.

About one minute before going live, my mother's elder monitor began to beep loudly.  Having been told that the video broadcasting equipment was very sensitive to the slightest sound, I made the decision to take a nose dive to turn the interrupting speaker off.  Only, I couldn't see how to do that so I unplugged it and threw it across the room returning to my seat just in time, adjusting my hair, my lipstick and my blouse in time to smile broadly and greet the hostess online.  Whew!  The guest panel was introduced with not a moment to spare.  As the hostess asked each of us to introduce ourselves I noticed that my screen froze, I hurried to refresh the url and was fortunate to make it back in time for her to get to me.  I was dividing my attention between the introductory comments and my intermittent Internet connection.  When a question was asked of the panel, I couldn't wait to answer but as I spoke, once again the screen froze, and this time there was no recovery.  My Internet was down.  I had to exit and try again.  It took much longer than the first time and when I returned the panel had moved on.  The hostess very kindly returned to me to get my response and I was able to complete my thought but not without being distracted.  I had lost my train of thought in the moment of panic and didn't recover as well as I would've liked.  Being used to my frantic days, I have learned to think quickly and found something intelligible to say.  We moved on to another subject and suddenly, in the background my phone in the kitchen rang.  What?!  I had turned all the ringers off.  How could that happen.  Skip was outside and had to run in to catch the phone on the second ring.  I heard his voice in the background and quickly put my laptop on mute.  What else could go wrong?  I didn't have to wait too long.  Suddenly the door swung open from the screened porch.  Mom came barreling inside complaining that she felt like she was going to throw up.  She was followed by our dog who wanted to play and my husband who was trying to maintain order and silence.  I tried to ignore them and continue listening to the discussion hoping to be able to keep my wits about me in view of the pandemonium in the other room.  A question was asked but I missed it because my computer froze.  The hostess asked me when I reappeared if I had a comment.  (About what?  Uh...um...'NO').  All in all my computer froze five times and I tried to follow the show as best I could, but felt kind of like a blind person in a paint store.  The final straw was  when the side door opened and our son came downstairs looking for all of us.  He wandered around the kitchen, then went back upstairs to the attached apartment closing the door noisily.  (UGH).  A little while later, his girlfriend started her car just under the library window then stopped, went back inside, closing the side door, then reopening and returning to her car.  (Later, I found out that her car was not acting right and they had called a tow truck.) There was more door slamming and then silence just as the hostess was saying goodbye and thanking her guests.  I mutely waived goodbye smiling broadly and exited the show.  Taking a deep breath I looked for Skip.

"How'd it go?" he asked innocently.

"How'd it go?  HOW'D IT GO?!  OH MY GOD!!!" I yelled. "I live in a mad house, that's how it went."

Skip looked hurt.  "I'm sorry about the phone."

"...And Mom, and Kira, and the doors, and Bill coming in.  I thought that you texted him."

"You said you were putting up a sign," he answered defensively.

I rolled my eyes.  What was the point of arguing that I told him to text our son.  Instead I told him about the Internet issues.

"Well that's not the strongest signal in the library," he answered.

"It was fine last week," I reminded him.

"Well, that's because all of us weren't at home and on the Internet at the same time."  It turned out that Skip was watching the weather reports, Bill was up in his apartment on the Internet and there were probably at least three devices accessing the Internet as well.  My eyes were bugging out and my head was exploding as I tried to take in this last bit of information.  To make matters worse, Skip had to leave to go pick up our granddaughter and didn't have time to talk or to make me feel better.  Skip left the room to move on to his next task leaving me with my mother who decided that going in and out of the house leaving the door open each time was how she wanted to fill the rest of the afternoon.  I resigned myself to the fact that my life is destined to be this way...crazy, funny (if you choose to laugh) and certainly nothing boring about it!

Skip just announced that our air conditioner has stopped working.  We have a call in to the air conditioner people but I won't be answering the phone.  I will be the crazy woman sitting in the padded cell laughing maniacally.

GRAMA-RANG.

I know that my sense of humor sometimes downplays the angst I feel about my mother's progressing Alzheimer's.  Skip and I are handling it the best we can. As a new situation arises we deal with it.  We are coping and have been for several years now.  But sometimes I just HAVE to laugh.

Among those things I find funny is how my mother responds to my attempts to protect her.  For the longest time, for example, we were reluctant to install a camera in my mother's room preferring to allow her privacy while monitoring her via an alarm system and a baby monitor that enabled us to hear what was going on in her room.  If she needed us we were there in an instant.  Of course, that was when she was more conversant.  But now Mom doesn't say much.  If there is an emergency she is likely to remain silent.  We often hear the strangest noises coming from upstairs without a clue as to what they might be.

For weeks, I kept hearing a sound that sounded like a zipper being zipped over and over again.
"What's that sound?" I asked Skip one night.  "I keep hearing it."

"What sound?" Skip replied.  He strained to listen more closely to the monitor even carrying it into the family room where we sat watching TV.

I listened and waited.  There was nothing but the sound of my mother's walker banging into the wall. "Well, it's gone now.  But I heard it!"

"Hmm."  Skip looked at me with an expression of doubt.

A minute later I heard the 'zip' again.  "There!  Did you hear it?" I shouted triumphantly.

"Yes!  Hmmm..." He said again.  It was somewhat like taking my car to the mechanic complaining of a squeak and having them actually hear it.  I felt vindicated.  Now we both wondered and mused as to what the mystery sound could be. There were no zippers in Mom's room.  Perhaps she was raking her fingernails across something that was textured.  There were other sounds that were similar.  We were able to identify those sooner or later; like the hairbrush scrubbing the seat of her walker, the plastic bags being folded and refolded then stuffed into the storage compartment of the walker, the locking of the brakes, the wheels squeaking  There was the sound of Mom pulling on the locked door of her closet, the click of the light going off and on, sheets being ruffled, drawers being opened and the contents being moved around.  All of these sounds were detectable.  The 'zip' was not.  It was the last straw--what drove us over the edge to purchase a camera.

The next day, Skip came home with a super, duper, state-of-the-art camera with night vision, and a wide-angle lens.  The associated app enabled us to remotely view on Skip's cell phone and even record activity.  After setting it up all we had to do was wait until we put Mom to bed.  We hovered over Skip's phone like we were watching a reality TV show.  All that was missing was the popcorn snacks.

"Look!  She's moving!" I announced. Mom changed positions on her pillow and pulled at the sheet.  We watched with rapt attention.  After several uneventful minutes something happened that we had not expected.  Mom sat up and moved to the edge of the bed where she continued to sit for the next three hours--not changing her position other than to lower her head to her chest.  In the beginning we weren't sure what she was doing but quickly determined that she was sleeping sitting up, head in hands and swaying slightly back and forward.  Skip went upstairs after the first few minutes to try to put her back on her pillow but the moment he left the room Mom popped back up and resumed the sitting/sleeping position.  So that's how she continued until we grew weary of watching.  Then came the sound--the 'Zip!' I ran to the phone to see her bent over her walker.  'ZIP'.

"Oh my God!  It's in her walker!" I exclaimed jubilantly.  I watched as she lifted the lid of the seat and on the back side there was a small compartment I had never noticed.  Lo and behold there was a zipper!  Mystery solved.  Thank you super-duper-night-vision-camera!

As the days turned into weeks, we discovered that the indoor camera was more of a menace than a helpful tool.  Watching Mom at night became a frustration rendering us nervous and constantly sitting vigil to her nighttime wanderings.  We realized that Mom was awake a great proportion of the night and early morning hours.  She took catnaps and the rest of the time simply wandered about aimlessly or manically.  Furthermore, since my phone didn't have a compatible operating system, Skip became the designated 'watcher'.  One night, while observing the nocturnal activities, Skip gave a loud groan.  "UGH!  She just took her nightgown off! She's NAKED!!!"

"Turn it off, turn it off!" I yelled.

Skip dropped the phone and rubbed his eyes like his retinas were burning.  I retrieved the phone and discovered that my mother preferred wrapping herself in bedsheets to wearing a nightgown.  She began pulling at the sheet and twisting herself in it like a mummy.  The worst part about that was the sheet, being loosely attached to the bed rendered it impossible for Mom to cruise around the room.  She would manage to move about a foot away from the mattress and get yanked backwards.  I watched her fall back on the mattress.  Being resilient and determined, she tried again, and again...and again. Each time she bounced backwards returning like a Boomerang. I debated running to her rescue but knew that she would just keep doing it.  Hadn't we seen it before?  The first week of our remote viewing we had run upstairs to stop Mom's potentially dangerous actions, the near-accidents, the potential falls because she had forgotten to use her walker.  Then, realizing that the moment one or the other of us exited the room after righting the situation, Mom was right back at whatever she was doing before we stopped her.  Such was the case with us trying to get Mom to lie down. I watched as Skip left the room and immediately my mother popped back up to her sitting position.  I wanted to laugh, thinking that she was like a human Boomerang...A MAMA-RANG, or maybe we'd call her 'Gramarang'.  Yeah, I liked that just fine. It worked for everything she did lately.  We'd point her in the direction of the bathroom and she would circle back without stopping.  Or she would walk past us when she came inside and we could see her making a bee-line for the food on the counter. We would run interference turning her in the opposite direction but she would doggedly Gramarang herself back to the food.

"I wonder how long she's done that--the sitting up thing?" I mused out loud.

"She's probably done all kinds of things that we would worry about if we had known," Skip replied.

"Yeah...but now we DO know!" I replied pointing at the camera.  "UGH.  We'll never get any sleep."  Then I thought about it.  We could attempt to restrain her, to drug her, to drive ourselves crazy running up to her room to save her from herself; or we could allow her to do what  she wanted.  She was 99 years old and had earned the right to do that.  Why did I feel the need to protect her?  Someone her age, her condition, and her lack of understanding COULDN'T be protected. The moment we put a stop to one thing that could be a hazard, she would turn around and repeat it.  I sighed deeply and picked up the cell phone, turned the camera off and put the phone on the counter.  There would be no more Gramarang-watching tonight!

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!!! 

Wrapping it Up

'Some images just can't be erased...or can they?'  

That's  what I wrote on the gift tag attached to my husband's Christmas present.  Inside the box was a pair of sunglasses with holiday-themed pencil erasers glued to them.  Skip knew immediately what it meant.
"Oh how perfect," he exclaimed with a chuckle. Then he put them on and we all had a good laugh; all of us except Mom of course.  She remained oblivious to her surroundings and the conversation.  Mom sat off to the side working to unwrap a Christmas mug.  The tissue paper was nearly off when she began re-wrapping and placing the mug back in the gift bag.
"What did you get?" I asked her.
"I don't know," she answered placing the bag back on the floor beside her.
"Well aren't you planning to unwrap it?" I questioned encouragingly.
"Yes," she answered looking at the wrapped gift like she had not seen it before.  Then she lifted the bag, read the name tag and began the process all over again.  Halfway through (before she removed the protective tissue to uncover the mug) she began stuffing it back in the gift bag, once again placing it on the floor.  It took three attempts before I stepped in to assist her.  Together we unwrapped the mug.  She looked at it, took it in her hands, and without comment placed it back in the bag.
My jaw dropped open in disbelief.  I fought back the growing frustration and impatience.  "Do you like it?" I asked.
"What?"
"Your gift.  Do you like it?" I repeated.
"Yes," she answered without enthusiasm.
I could tell she didn't know what 'IT' was.  I asked her and she seemed confused.  She had forgotten what she had opened.  I lifted the mug from the bag to show her.
"Oh!  It's a mug," she told me.  It was as if she were seeing it for the first time.
I shook my head and went back to the gift opening.  It was futile to get my mother to pay attention, to react, and to understand what was happening around her.  There was simply no way to engage her.
Skip was still amused about the sunglasses remembering the event that triggered the creation of this gift.  The reader might recall my earlier account of how I had protected Skip from seeing...um... 'certain things'  until a few weeks earlier when he had to step in and help Mom get dressed while I was lying flat on my back with a painful pinched sacral nerve.  At the time I felt horrible about Skip  seeing my mother undressed, and while, in retrospect,  I thought it was funny, I wasn't sure that Skip found  it  humorous.  I was glad to see that he could now laugh as we sat opening our Christmas presents.

When we finished and cleaned away the assortment of ribbons and torn bits of paper, I looked over at my mother.  She was tying a ribbon to her walker.  She knotted and twisted it, twirled it around the handle and untied it.  Over and over, she fiddled with the ribbon that was soon to provide her with hours of fun.  At last!  This was a present she enjoyed.  The soaps, candles, mug, the assorted small gifts she might use meant nothing to her.  In fact, she didn't know it was Christmas.

I went to work making our holiday dinner.  I set the table in a festive display with special Christmas colors and my beautiful holiday china.  We sat down at the table and tried to engage Mom in conversation but her aphasia limited her words.  Her palate limited her enjoyment of the meal.  Her diminished understanding of words limited her enjoyment of the table talk. After several attempts to draw her in, I gave up.  Gone was the woman who relished the specialty foods that used to elicit her exclamations of approval; gone was the woman who laughed and joked; gone was the woman who was more excited about Christmas than the children.

That night when the dishes were put away, and the remnants of Christmas celebration were removed, I thought about how this Christmas was probably Mom's last one.  (Of course, I thought that same thing last year too and was happily surprised that she was still with us.)  This year though, I evaluated the situation and decided that in fact, Mom was not with us.  In essence, she had celebrated her last Christmas about four years ago.  Looking back I realized that since then she has not really appreciated the holiday, didn't remember any of the things that happened, could not report where we went, who we saw, what was said, what gifts were received.  It was heartbreaking!  How could we have known then, on that visit to our daughter and son-in-law's home that she would forget everything from that point on; that she would never again be the person she was that day; that she would continue going downhill...sinking slowly into oblivion?  My thoughts made me so sad that the magic of the day was soon replaced with an overwhelming gloom.  I began to think about all of the negative things that we experienced as we cared for Mom.  I remembered her outbursts, her frowns, her compulsive behavior, her lack of manners.  It was easy to become depressed and bitter.

I walked into the hallway to turn off the Christmas lights when a thought occurred to me.  Christmas, to me was about love.  I turned to look at the tree thinking about how each special ornament symbolized the love of friends and family.  I sought out those ornaments that had been given to us by my parents.  I smiled as I remembered the many years when Mom and Dad joined us to share in the joy and togetherness that we experienced as a family opening gifts, laughing, and loving. So many years of memories...such wonderful recollections!  There...right in the middle of the tree was the ornament of the cute little white-haired couple snuggled together in a green and red felt bed.  It represented  Mom and Dad.  Oh...and there was the fisherman ornament. (Dad loved to fish).  There was the ornament of a boy and girl that they bought for us when our children were small.  It was engraved with our children's names.  Suddenly I was awash in sentimentality.  I was remembering so much about the family times, the good times, the years and years that I thought I had forgotten.  I especially thought about my father who was forever clowning around much to our enjoyment. My wonderful parents were always with us, always smiling their sweet smiles, joking, playful, filled with mirth, merriment, and most of all, radiating love.  I missed Dad and yet I knew that the memory of him would never fade away, so in a sense he was there with me just at that moment. I heard his voice, felt his warmth, smelled his cologne.

As I reminisced, I found myself growing happier.  I thought about how we live our lives with all of the good times and some bad times too.  But ultimately our memories seem to reflect more of the good times than the bad -- at least they did for me. I took one last look at the tree filled with those reminders and then turned off the lights.  The magic of Christmases past hung in the air as I tiptoed off to bed.  As I closed my eyes I thought once again about Mom and her gradual detachment from the family festivities.  Then I thought about the fact that even though she was not all here, she would always be with us in our hearts.  Now was not the time to bemoan her fading away but to celebrate the years she was fully present. My last thought before I drifted off to sleep was of my mother painstakingly sewing felt animal ornaments for our tree when our son and daughter were young.  Now they hung on our daughter's tree in their children's playroom; and so, the memories were alive...her presence continuing on into a new generation.

In the words of Dylan Thomas: 'Do Not Go Gentle...'

I cannot believe that it is December again.  I am not ready for another holiday season and yet, before I know it, it will be over.  I feel like if I blink it will be Spring.  It speaks to the importance I MUST place on each moment.  I have allowed the moments to slip by.  How else can I explain this year?  The days...often filled with frustration, stress, worry and exhaustion have raced by.  Wasn't it Easter just yesterday?  Wasn't I celebrating the arrival of 2017 a moment ago?

Ah, sadly, my mother is slipping away all too quickly.  How do I slow the days down?  How do I hold her last moments (so infrequent) of lucid thought?  I looked back to a year ago.  I wrote about the hectic days, the craziness that precedes Christmas.  At that time my mother was receiving hospice care.  We thought that she was experiencing her last days.  Suddenly, she bounced back -- a full recovery!  It was a Christmas miracle of sorts.  I worried that at any moment she could take a turn for the worse and lapse back into the comatose state she was in that prompted a call to hospice in the first place. But days and weeks turned into months.  My productivity slackened as I spent more time with her, watching, caring, administering, but mostly just sitting.  Her interest in everything had waned.  Her communication was minimized and her comprehension was severely limited. So why didn't the days drag?  Why is it that the less I did the faster the days seemed to fly by?  Isn't that counter-intuitive?

I have gone over and over this past year's events; the conversations with friends, the dinners with family members, the laughter and good times, the deep discussions, and playful moments with my spouse.  I thought about the entertaining we did, the tea parties, the small dinner parties, the funny moments with Mom and the not-so-funny moments that Alzheimer's brings as well.  None of it...NONE of it was more than a moment ago, I tell you.  What a nasty trick the Universe plays on us.  The older we get and the less time we have, the less time it takes to get there.  I am suddenly reminded of the poem by Dylan Thomas which made no sense to me when I was a young girl studying famous poets. The lines resonate with me now: 'Do not go gentle into that good night. Rage, rage against the dying of the light.'  Well, I am raging indeed!  I am raging for my mother who cannot speak to it herself.  I am raging for myself as I witness the limited time ticking away.  I am raging for all of those people who helplessly witness lost time with loved ones and wish that they could harness the minutes to hold them for just a while longer.  

Tonight as I go to sleep I will focus on the minutes.  I will treasure each second, each breath with a new-found appreciation.  And tomorrow, as I awaken to a new day, I will promise myself to enjoy the time that I sit with my mother doing absolutely nothing but sharing space and air together.  She may not think about it, nor remember it, but I will do so for both of us.  I will look at her gnarled arthritic hands, her face lined with years of expression, from love, disapproval, smiles and frowns, joy and sorrow. I will look at her silky white hair lying limp and thin on her pink scalp.  I will apply lotion to her wrinkled skin hanging with uncertain direction off of delicate bones. I will marvel that a person of 98 years is still able to be as mobile, as agile while she lifts her legs to assist me in putting on her socks.  Her questions, her comments, as limited as they may be will register in my brain and store in my memory.  "Who am I?" I will ask her.  She will answer one of her many ways.  "Are you my neighbor?  Are you my mother? Are you my friend?"  I will smile. "Yes, I am," I will agree to whatever she chooses to define me.  I will take it in, all of it, because it will be a day from now or a year from now that I will look back and rage against the diminishing moments..."Where did the time go?"