Hurricane Madness or Gone With the Wind

There was a hurricane a few days ago that became a tropical storm by the time it blew through our area.  However, we had straight line winds that downed trees and left huge areas without power. 

"Are you okay?" friends texted.

"Nope!" I answered truthfully.  Frankly, if not for my mother we would've been fine.  A little thing like a power outage is merely an inconvenience unless one has a 99 year-old mother with Alzheimer's to contend with.  So, here was the scenario:  Without power we had no lights and Mom couldn't see.  She was disoriented.  We hurried to plug in the generator to run our sump pump so there would be no basement flooding.  We got out lanterns and flashlights.  We took one of the lanterns to Mom's bedroom because all of the night lights were plug-ins and there was no electricity to power them.  We had no monitors, no safety alarms, and no camera for her room.  Wait a minute...WE HAD NO POWER--HENCE NO CHAIR LIFT TO HER ROOM!!!  Together Skip and I tried to get Mom up the stairs with her fighting us all the way.

"Will someone get this man off of me, DAMMIT!!!" she yelled angrily.

"C'mon Mom," I coaxed.  "This man happens to be my husband, Skip.  I am your daughter and we are trying to help you get to bed."

Mom calmed down enough to allow Skip to assist her up the stairs with her groaning every minute of the way.  She was certain that we were both trying to kill her. 

Once I got her changed and tucked into bed I left the battery-powered lantern on for her to find her way to the bathroom in the middle of the night should she feel the need.  Why I bothered, I don't know, since the only need Mom ever has is to tear her nightgown off, take her diapers off and proceed to wet the bed.  Sometime during the night, the lantern battery died and THAT'S when Mom decided to awaken and walk around.  We, of course didn't know, because there was no monitor to awaken us by her motion.  She stumbled around, knocking things over and finally crawling back to bed.  I can only imagine what went on up there.

In the morning when I went to get Mom she was sitting on her bed looking like the hurricane had swept into her room overnight. The electronic monitor was lying on its side on the floor.  The lamp was off the table and the table was swept clean of all of its items. Her nightgown was off and tossed on the ground.  Her covers were strewn and a towel was wrapped over her otherwise naked body.  She looked like a scene from Gone With the Wind (um...literally) as her room was laid to ruin and the only things remaining were upended.  I assessed the situation and quickly discovered that while we were using the sump pump in the basement, we could have used it upstairs as well to alleviate the flood that Mom created on her mattress.  The room smelled like a barnyard, everything was soaked through and through, and I knew that there would be no flood insurance to cover this disaster.  We had no hot water (having tankless water heaters that require power to turn on.)  Mom had been lying in urine and obviously found that rolling around her wet bed was fun because even her hair smelled like Eau de Pee.  There was no bathing her because the water was too cold.  According to her screams of protest, I was trying to contribute to her demise by even thinking of cleaning her."It's FREEZING!  Stop it right now.  You're killing me.  HELP!  POLICE!!!"

"Okay, okay.  I won't shampoo your hair or wash your bottom.  Fine.  Let's just get you dressed." Mom shuffled her clothed bottom onto the wet bed and sat down before I could get her to stop. "NOOOOO!"  It was too late.  Her clean pants now wore a nasty wet spot that was sure to smell.

Once Mom was dressed we needed to get her to navigate her way down the stairs.  Between the two of us, Skip and I managed to take her down one slooooooow step at a time.  Explaining to her that there was no power and that we had no way of using the chair lift was like shouting in the wind. She couldn't hear or process our words.  Once downstairs, Mom made a beeline for her place at the counter to have breakfast; only breakfast was not as usual.  We had no way of heating water for tea and no way of toasting her bagel.  Mom didn't complain but seemed unsettled.  We gave her coffee since we ran a wire from the small generator to the coffee pot. Mom complained, "This is bitter!"

"Sorry Mom.  It's all we've got," Skip told her.  Then he explained about the hurricane, the power outage, etc. for the 10th time that morning.  Mom ignored him and went back to eating her piece of cold bread with cold cream cheese and cold strawberry preserves.  She grimaced and scowled while I secretly wished I could just go to a hotel somewhere far away and let Skip, the dog, and my mother fend for themselves.  (Okay...not fair to Skip...or the dog.)  Truth be told, my dark thoughts were not fair to Mom either. It wasn't her fault that she had Alzheimer's.  It wasn't her fault she was old, incapable of understanding why she had to forego hot tea and toast in the morning, why we had wires running down the hallway making it unsafe for her to cruise around and around with her walker aimlessly moving without thoughts or understanding.

Skip plugged the charger into the phone and then into the generator.  We were back online!  He checked the power outages in the area and reported grimly that it was widespread.  This was a bad one.  There was no hope that we would see power restored anytime soon.  Our sump pump was still working hard to get rid of all of the water seeping in and we knew that we would have the generator working overtime downstairs so being prudent with its use for refrigeration, charging batteries and making coffee was important.  

By the third day without power we were getting pretty proficient 'roughing it' in our home.  However, Mom gave us quite a bad time being walked up and down the stairs without use of the chair lift. Her patience had dwindled to complete refusal to move. She was terrified and frozen stiff to one spot halfway up the stairs the night before.  No matter what we did, how we talked to her, how we tried to reassure her she was bent on flinging herself backwards down the stairs.  When we physically pushed her to keep moving, she screamed bloody murder and at the top step, flopped down on the floor crying hysterically until we bodily lifted her and carried her to her room. Oh!  The commotion as she pushed and cried.  (I mused that perhaps we should just leave her on the floor, open the windows and let the residual  winds carry her away.)  

In the morning, when I went into the kitchen to start coffee I found out there was no water!  Our community water tower was dry.  (We later found out that without power, the sensor to signal water levels was not operating, so we had drained ourselves of all water.  Just about that time, Mom decided to go to the bathroom.  (AND I DON'T MEAN TO GO PEE!) There was no way to flush.  ARGH!  I was now beginning to panic.  I yelled for Skip to call the water emergency line and tell them that this was a major emergency.  I guess that his explanation and tone of voice was enough to get someone out here ASAP.  While we awaited the solution to the problem I suddenly began smiling and feeling an unexpected calm spread throughout my mind and body.  Being an ex-Girl Scout, I have lived a lifetime by their motto 'Be Prepared'.  I was prepared.  While madness might have prevailed, I was still sane enough to remember that storm preparedness included an ample supply of wine.  It was 11:00 AM and frankly I was ready with my Cork puller and a wine glass. While the power was out, nothing was working, and things were going from bad to worse...NO PROBLEM!  My coping mechanisms were thankfully still fully functional.

'Naked and Angry' Meets 'Alert and Afraid'

I don't mean to scare any of you with my stories about Mom.  She is in advanced stages of Alzheimer's and it has been a long time in coming. We had a chance to prepare, and many years of good memories, laughter and mutual moments of enjoyment knowing that eventually things would change.  At some point we knew that the symptoms of advanced Alzheimer's would be unpleasant. Now that it is here, it's...um...well...there's no sugar-coating it; it has become very challenging and difficult! Mom is apt to experience mood-swings without warning, and while we have medication to help her with her agitation, it doesn't work well and we are witnessing an increasing number of bouts with an angry aggressive woman who is stubborn, argumentative and sometimes even exhibiting violent outbursts.  We are learning how to handle these events as well as we can, but we're not perfect and do not always react as well as we should.  So, for example, the other day when my mother  lost bladder control, soaked through her adult diapers, and was sitting on an unprotected upholstered chair, I asked her to stand up and move to the towel-covered chair that we assigned to her while I went to get her a fresh diaper and change of pants.  (It is her chair!  She knows that.  But she doesn't like having a towel on it and therefore sits on other chairs.)  Mom balked and told me in a nasty tone, "I can sit wherever I like!"

I told her that she had wet herself and was now wetting the chair.  I don't know why I said that.  She was only focused on the fact that I was telling her to move and didn't care what the reason might be.  I asked her nicely once again.  She gave me a pouty look and then turned away refusing to discuss further.  I reached over and grabbed both of her hands to help her get up off of the chair.  That's when Mom went off the deep end, (Think David Banner turned into the Incredible Hulk) shouting at me and telling me to leave her alone.  "Don't touch me," she yelled pulling her hands away and pounding her fists on the counter.

Again, I explained that she had to move and she said angrily, "You can't tell me what to do!"  ARGH!!!  I stormed out of the room. I was seething and wondering where I could find a stick of dynamite to blast her off the chair. (Would that be considered Elder Abuse?)  I began to laugh at myself as I envisioned something.  Let me explain; I have always been a fan of the silver screen and found that seeing some of life's more difficult moments as movie and cartoon characters makes it somehow tolerable. This time I chose Wile E. Coyote and Roadrunner. (For the record, I saw myself as Wile E. Coyote with the dynamite plunger in hand.)  As usual, I found a reason to turn my frustration into something funny.

Dealing with Mom's anger is an everyday occurrence.  We have gotten used to her negativity, her anger and her mood swings.  She goes from stubborn refusal to do what we ask to laughing and cooperative within minutes.  What we are not used to, and what consistently surprises us, is her new affinity for nudity.  At any given time, Mom will whip off her clothes  and present herself to the world naked and unadorned.  It is horrifying to look away for a minute only to find that she has removed her clothes when I look back in her direction.  The other day, sitting right next to her, I was working on my laptop.  I looked over and noticed that Mom had fallen asleep.  I seized the moment to check a website and focused on the screen.  No more than 30 seconds later, Skip walked into the room and bellowed, "Mom!  What are you doing?!"  I looked up to see that she had removed her blouse and was beginning to pull off her pants.  "Stop!" He commanded.  Mom glowered angrily and narrowed her eyes menacingly as I reached over to help her put her blouse back on.

"OW!" She yelled as I pulled the top back over her head. (I hadn't done anything to hurt her...Honest!)  I recoiled wondering if this was going to escalate into a violent outburst.  My sweet mild-tempered little mother was now like Stripe in the movie Gremlins.  I was experiencing a fearful moment trying to figure out how to diffuse Mom's anger before she began running amok.  Thankfully, the moment passed.  I breathed a sigh of relief.  She transformed into her old self somewhat like Dr. Jekyll after being Mr. Hyde.

The other day, I heard a woman telling everyone that her 10 month old baby was now walking and I reminded her that when babies become toddlers, mommies grow eyes in the back of their heads.  Well, here's another warning.  When we become caregivers we once again have to hone in on our sensory skills.  Listen for the slightest sound, watch vigilantly, and most of all, never, ever let your guard down.  Stay alert, and afraid...VERY afraid!

Why Are You Looking At Me Like That?

I often walk around shaking my head at my mother's antics.  Alzheimer's is so unpredictable.  Mom's behavior fluctuates constantly leaving me to wonder what she will do next.  One moment she is squirreling away dirty napkins and half-eaten cookies in her walker and the next she is pacing around the kitchen looking for a snack.  When I feed her, she takes a bite on-the-run and immediately returns to her favorite spot outside on the screened porch.  Her daytime antics are manic and frustrating since she has no understanding of what she is doing.  Her communication is nil and when she does speak it is muddled and unintelligible.  Imagine our surprise, then when we hear her speaking full sentences in the middle of the night.

Last night we were awakened to the sound of my mother's voice admonishing someone.  "Why are you looking at me like that?" she asked.   Then, she continued, "What's Wrong?" (pause) "I want a glass of water."  Skip got out of bed and trudged upstairs to deliver the glass of water and found her standing in front of the bathroom mirror talking to her image. Mom wore a scowl on her face.  No doubt the sight of her image glaring back at her was offensive, causing her to scowl even more.  I was glad Skip managed to get her the water when he did or there might have been a fist fight between Mom and the mirror.  

Trying to protect Mom from herself has become a full-time job.  She is perpetual motion and often finds ways to put herself in harm's way either by trying to eat something that is not meant to be eaten, or to wobble precariously close to a table edge.  Today, she tried to go down the steps to the patio as I flew to stop her.  "NO!" I shouted.  "Stop!"  Then approaching her and closing the door firmly I admonished her.  "You don't go out there." I still had visions of the face plant she did when she escaped outdoors and down the step.

"I didn't do that," she replied.  (It's amazing how Mom can speak in full, understandable sentences when in the midst of proclaiming her innocence.)

"Mom, look...you opened the door," I told her pointing at the door.  

Again she denied it only this time she told me "Oh, THEY did that."  ('THEY' by the way, seem to be responsible for all things that are done for which my mother does not wish to take responsibility.)

To say that this is a trying time would be a colossal understatement.  I am equally torn between laughing at the bizarre woman who resides with us and feeling tremendous sadness over having lost the logical, organized and fastidious woman she once was.  From moment to moment I battle my demons who rail in anger against this huge inconvenience in my life, and the loving daughter who remembers the 80 plus years of joy she brought to all of us.  I want to reach out and hug her, hold her, feel her warmth, and then she does something that instantly pushes me away in disgust.  

I detach myself from the lesson that is delivered to me.  I recognize it and marvel at the clarity while fighting each new test that is delivered.  It is the lesson we sometimes never learn; a test we do not pass.  Will I succeed?  Today I have failed once again.  Perhaps tomorrow I will conquer my human failings.  I am a daughter.  I will tap into that love...that familial tie and allow the mother-daughter bond to supersede the impatience I feel.  I will try, once more to look for the humor.  It's there.  Oh yes it is!  She will undoubtedly blame that other person--'THEY' will do something that makes me cross, and when I admonish her or scold her she will offer to punch 'THEM'.  I expect to see her tussling with an unseen combatant hoping that she doesn't injure herself but all-the-while cheering her on as the victor!

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!

What is Love?

When people say, "I love you," it can mean oh so many things.  Today, we learned what one kind of love means.  Our children and their loved ones demonstrated a love that enveloped compassion, consideration, generosity,  and overwhelming thoughtfulness.  We gathered together to celebrate my mother's 99th birthday, and Father's Day.  We even threw in my girlfriend's birthday for good measure.  We had dinner, laughed, loved, enjoyed each other. We had cake and exchanged cards.  At the end of the celebrations, we sat down in the living room to visit and continue enjoying the after-dinner moments before everyone had to leave.  But there was one more surprise...one more act of generosity.  The family handed us a card that said, 'To Mom and Dad.'  What?  It wasn't MY birthday.  Why was I getting this?  I opened the card with Skip sitting next to me, looking over my shoulder.  How could I have forgotten another occasion soon to be celebrated by us?  Skip and I were going to celebrate our 50th wedding anniversary in less than two months.  We had no plans to go anywhere or do anything.  We knew that we would have to put the celebration on hold or at least minimize what we might do to mark the occasion.  There was simply no money to spend of frivolity.  We were budgeting carefully these days.  Caring for Mom had taken its toll on our expenditures and our earning ability.  Even a night out was sometimes prohibitively expensive when one considered the cost of hiring a professional to be with Mom while we attended a dinner or another event.

The card held a surprise that we hadn't expected.  A roll of bills sat inside the card with the most lovely note one could ever get.  It wished us a happy anniversary and held an early anniversary present urging us to think about going somewhere together--to get away and just enjoy each other. The money was to help defray the cost of a sitter for Mom, to take the stress and worry out of being able to get away even if for just a couple of days.

I couldn't read the note out loud.  Tears filled my eyes.  Both Skip and I were so moved by the gift, the amazing thoughtfulness and understanding that we really, REALLY needed this. The note went on to thank us for exhibiting the meaning of commitment. The love they exhibited assured me that we have done a good job with our children.

Cussing is Cathartic

How quickly my mother's condition is deteriorating now!  She is extremely reactive to anything we do, flying into angry fits and threatening us.  Some of it is actually laughable but most is just sad, patience-testing, and anger-provoking.  I knew about various mood changing drugs that would help but was opposed to using them.  I worried about side-effects and hated to administer something artificial; but after putting up with her little outbursts for several weeks,--each one being a bit more violent, I finally contacted her doctor and received a prescription for anti-anxiety, anti-agitation drugs.  "A few drops will calm her down," I was told.  So off I went to the pharmacy to pick up a tiny bottle that cost $55 (our portion of the payment AFTER insurance had paid over half of the total!)  I couldn't wait to administer the dosage and see if she would become a calmer version of herself.  

The first day, there was no change but the second day it seemed like Mom was more of a Zombie than usual. At least there were no emotional outbursts though.  Then day three hit. I walked into her room to help her get up and get dressed.  Her Depends were off (she removes them at night) and there was a large puddle on the floor of her bedroom. As I walked in narrowly missing stepping in the puddle, I saw that Mom's nightgown was on backwards indicating that she had removed it at least once during the night.  Well, at least it was back on her and she hadn't been running through the house naked!  I removed her clothes from the locked closet with Mom standing next to me practically panting with anticipation and pointing her finger at the shoes on the floor.  
"I need the...the...those!" she reminded me. (Mom couldn't remember what the shoes were called but she most certainly remembered that they were in the closet.)  As she sat down she was more focused on the shoes than on getting dressed, freeing herself to grab at them every few seconds.  (I should note that dressing Mom is like dressing an octopus. Her hands grab at everything and she is unfocused on the job at hand.  If left alone, she would wear nothing but her shoes and be perfectly fine with that!)

When I finally managed to get Mom downstairs I was already in a lather since her room was hot and I was working fast and furiously to get her dressed quickly.  I took several minutes sitting under the ceiling fan rotating on the 'high' setting to recover and cool off.  Then I began my day.  Mom sat at the counter eating her breakfast and blowing her nose in her napkin.  As usual, the napkin was then placed on the counter where she took her mug and ran over the top of it 'ironing' it flat.  

"Please don't do that, Mom."  I told her like I had never told her that before,when in fact Skip and I tell her that at least five times per meal.  "The napkin is dirty. You blew your nose in it.  Throw it in the trash."  

Mom argued that the napkin was clean.  As always, I showed her the wet spots and told her again to throw it in the trash.  I would have done it for her but was handling food and didn't want to personally touch the napkin.  Mom sat stubbornly refusing to throw the napkin away and eventually, I reached over and tossed the napkin in the trash.  Problem solved!  Mom shot me a look of defiance grabbed another napkin and blew her nose.  Then she place that napkin on the counter flattening it with her hands.  I turned my back on her and walked away counting silently to 10. When I turned back, Mom was headed for the screened porch and  I was able to retrieve her breakfast dishes, dirty napkin, and coffee mug that was covered in sticky jelly. (It is always a risk handling Mom's dishes!)

All morning Mom walked in and out every couple of minutes.  She was agitated and yet, stupidly, I thought that I could handle it.  By noon, when I fixed her lunch I was so tired of being patient and understanding I could barely wait to feed her and get her back outside.  Again, I dealt with the napkin-turned-tissue that Mom refused to throw away and instead turning it into some sort of origami project.  

"Stop handling that!  It's dirty."

Mom scowled at me and continued to run her fingers across the mucous-soaked napkin.

"Ugh!" I gagged.  I opened the cabinet to show her the trash can.  "Put your napkin in here."

Mom lifted her plate and started to throw it away.

"No!  No!  Not your plate.  Your napkin!  Throw your napkin in the trash."

"I don't have to and you can't make me!"

"Oh yes I can!" I had reached my breaking point.  "Now do it!"  (Mom sat stubbornly, refusing to cooperate.  She mumbled something that was unintelligible.)  I shook the trash can at her and coaxed her a little impatiently.  

She looked away and said, "Stop it!" 

"These are my rules," I told her.  "You have to follow them."

Mom screamed loudly saying that she didn't have to follow my rules.  Now we were in a full-out battle of wills.  I was not going to back down even though I knew that I was dealing with a temper tantrum from a two-year-old. Instead of being the adult though, I countered with my own display of temper and need to control.  "You do this now!" I bellowed in my authoritarian voice that implied the words, "YOU WILL OBEY!!!"  At this point, Skip, who had been working in his office, came running to see what was going on and to keep the two warring factions from killing each other.  When he approached, instead of becoming 'Peacemaker' he entered into the fray.  He told my mother to listen to us and do what she was asked. When she refused, he took her napkin, threw it in the trash and told her to get down from her stool and go sit down in the family room.  When she refused, he guided her taking her by the hands and placing her hands on the walker, then pointing the walker in the direction of the family room.  I could see Mom's face.  She was furious.  By the time she sat down next to me I decided to take the high road and talk to her with a rational and calm voice.  "I can see that you are angry.  Why?"

"Because," she sputtered, "Those people over there think that they are such big shots and they're nobody!  I'm going to get my husband to take care of them. They'll be sorry!" She threatened this in a voice filled with malice.  

(It was definitely time for a dose of the medicine.)  I reached over and administered the dropper-full smiling sardonically.  Within minutes my mother was calm and cooperative.  So much so, that when it was bedtime I didn't think that any more medicine was needed.  Oh how wrong I was!  All night, Mom remained agitated and walking around her room, refusing to go to sleep.  I was too sleepy to responsibly administer any medication and endured the noise and commotion coming over the monitor.  By 1:30 Mom had opened the door a couple of times and Skip got up to put her back in bed.  Mom refused to lie down so Skip assisted her guiding her backwards with his hand on her arm.

"Don't touch me!" she shouted.  "Don't you dare touch me!"

"I'm just trying to help you lie down," Skip told her patiently.

"Get your hands off of me, you Son-of-a-Bitch!" She fumed.  (Mom never, ever said that.  I never heard her use that expression nor did she ever use bad words.  She was always the picture of decorum and propriety.  In all my life I had never heard those words coming out of my mother's mouth. But here she was at 2 AM cussing at my husband.)  There was a long pause and then I heard the door open and close.  Skip returned to bed trying to control his breathing.  I could tell he was upset.  

"What happened?" I asked.

"She called me a Son-of-a-Bitch!" he repeated with disbelief.

I laughed out loud.  What next? I wondered.  Would she drop an 'F' bomb?   For someone with Alzheimer's when there is little control over one's life, one's words, one's actions and even one's thoughts, maybe cussing is cathartic.  Maybe that was the one way my mother could express herself when all other words escaped her, when cognition was limited, and when more than anything, she wanted to be at peace. It was as if we kept poking her with a hot poker until she reacted.  She didn't understand, didn't know why, didn't care.  She wanted to be left alone.  Sadly, I fell asleep understanding this and yet feeling helpless to do anything about it.  I am Mom's caregiver, but felt overwhelmed and more than a little over my head, incompetent, and exhausted. Recognizing this, I was immediately grateful for the answer that came in a small amber bottle with a dropper dispenser.  
Just before drifting off to sleep two things struck me: first I thought of Charlton Heston screaming, in Planet of the Apes; "It's a madhouse, A M-A-D-H-O-U-S-E!" Immediately my mind switched to One Flew Over the Cuckoo's Nest when the patients were given their daily dose of medication to keep them compliant, drugged, and docile.  Was I turning into Nurse Ratched? A small nagging guilt grew inside of me and yet...and yet...I knew that there was no way I could or would be that calm, composed caregiver that could tolerate the cussing and violence.  Yes, it's a madhouse and I have the means to make things better.  I fell asleep with the knowledge that I was doing the very best I could do.