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."

TRAPPED!

I am still shaking from my ordeal, but at last I have regained my composure and can write about this.  My worst nightmare was realized this morning as I went in to help Mom get up and get dressed.  I walked into a big puddle on the floor as I greeted Mom.  Once again she had removed her diapers during the night and had proceeded to pee on the floor.  That, in and of itself would have been bad enough; but let me back up for a moment to explain:

Skip is out of town.  He left this morning to do some work in South Carolina.  I was awakened by his alarm going off at 5:00 AM.  As he quietly got dressed I remained awake.  When he whispered goodbye to me I sat up and looked at the clock.  5:30 AM!  Oh Joy!  I was awake and couldn't go back to sleep.  I walked out of the bedroom to get a cup of coffee and sit in the family room enjoying the quiet.  It was only for a moment.  Already, Mom was stirring in her room. I listened to her moving items around on her dresser.  It was dark outside and out of principle I would not go get Mom until the sun was up.  She would have to wait.  At least now, with the lock on her door I didn't have to worry that she might become impatient and walk out of her room to try to descend the stairs and go to breakfast, as she had done before.  We had resisted locking her in for a few years, but now, with her worsened condition of late stages Alzheimer's it was necessary for her own safety to keep her contained.

I continued to sip my coffee luxuriating in the the moment of relative quiet.  The dog was still asleep, Skip was gone so the morning news wasn't on.  Mom seemed to have sat back down and was fidgeting with the sheets so all I heard from upstairs coming over the monitor was the sound of fabric being folded. (It is one of Mom's favorite activities--folding her sheets and blanket.)

The clock ticked the minutes away and as I played a few puzzle games on my tablet, checked my email, social media pages, and calendar, I also watched the sunrise.  It promised to be a pleasant morning.  I reminded myself of the early morning call I was making to two new agents who needed some advice before beginning to work with clients.  I wanted to allow enough time to get my mother dressed, fed and "settled" before accessing my conference call. I decided at 7 AM that I would go up to get Mom.  That takes me back to where I started.

I opened the door and entered.   Mom was eager to get dressed and we did so quickly.  I scouted around to find where she had hidden her diapers.  They were in her walker and as I removed them I remembered to spray the interior storage compartment with Lysol. I was determined to not let anything bother me today.  Then I walked her to the door.  I moved the wet mop I had used to clean her floor back out of the way, held the wet diaper in the plastic bag gagging just a little over the foul odor, and pushed on the door lever.  The door didn't open!  I pushed harder and then realized that the lock was still engaged from the outside.  There was no way to open the door.  We were locked in.  I began to panic but then thought that I could find something to open the door through the small hole I could access to disengage the lock.  Then I remembered that this was the only door in the house that had a one-way lock with no hole on the other side.  My heart sank.  There was no way out.  Skip was gone.  Our dog, Kira was not the kind of 'hero' dog to come to our rescue.  Our son was no longer living in the apartment, having left for Colorado.  His girlfriend, Christina was now the only occupant and she was still asleep.  Nevertheless I began knocking on the door and yelling for her.  There was no response. I continued knocking and yelling.  Now Mom joined in as well.  It must have been fun for her because she was really getting into it!
"Help!"  she yelled with gusto.
"Christina!" I bellowed.  "Save me!"
The house remained quiet.  I looked around wildly hoping that I could find some means to help me escape.  The smell was nauseating and I envisioned dying of asphyxiation. (Could the smell of Old Lady Pee kill me?) "HELP!" I shouted in earnest.  "HELP, HELP, HELLLLLLLLLLLLPPPPP!"
I was now panicking and pounded on the door.  It shook the walls as I continued to pound and scream.  I stopped and listened assuring myself that I would hear the sounds of footsteps on the other side of the door coming to my aid.  Sadly, the house remained silent.  I rested a moment and then began my pounding and shouting again.My level of panic rose to new heights. Maybe Christina was already up and out the door on her way to work, possibly running an errand first which would explain an early departure. What if she didn't get home until late tonight.  I tried to remember if she had mentioned anything to me about being gone for the weekend. 

"Oh no, oh no!" I cried to myself.  "I could be stuck here for two days!"  I wondered f Skip would call when he arrived in South Carolina.  If I didn't answer would he assume that I was taking our dog out and not call back?  It might take him until the evening to call me again as was often the case when he was working.  When would he begin to worry?  Would his concern cause him to take action?  What would he do?  Who would he call next to check on me?  Whose phone number did he have on his phone?  All of these thoughts were running through my brain at lightening speed knowing that Skip was the king of not memorizing anyone's phone numbers and even if he had a person to call, how would they get into the house?  Now the reality of the impossible situation sank in.  Mom and I were unlikely roommates for the duration until someone returned home and discovered that I wasn't there.  By then, I might be lying unconscious on the floor (from the aforementioned asphyxiation or from an stress produced embolism, or from a conniption fit!)  Whimpering helplessly I collapsed on a chair and looked at my mother who was pacing like a caged animal. It was only a matter of minutes before she would realize that she was not being fed her breakfast; and for those who know my mother or who have read previous blog posts they will realize that nothing...NOTHING stands in the way her food.  She has an appetite of a hungry bear and a disposition to accompany that. 

"Why can't we go?" Mom asked.
"The door is locked. Just go sit down on your bed."
Mom nodded and proceeded to pace in circles.
"Why can't we go?" she asked again.
"The door is locked." I repeated.
"Oh."  She paced in a circle then asked one more time, "Why can't we go?"
"AURGH!  Christina!!!" I shouted desperately.  I began pounding on the wall.  "CHRISTINA...HELP ME, HELP ME...HELLLLLPPPPPP!"

The minutes ticked away.  I thought of people trapped in a building collapse, an earthquake, a mine disaster, an avalanche.  I thought of their futile cries for help as rescue teams searched for them.  I thought of them running out of oxygen and becoming weaker and weaker until their cries became inaudible.  My hand hurt from pounding.  My throat was scratchy from my screaming.  My voice was hoarse.  My rescuers would never find me.

My imagination was now running wild and still, my will to survive kept me pounding and yelling.  Hours passed (or at least it seemed that way to me.)  I knew that there wasn't much time left. (Okay...perhaps a bit dramatic of me but I was thinking that I was going to miss my conference call!) I was certain of it now.  I gave one last pound on the door, yelling my head off.  Suddenly there was a small voice on the other side of the door.  Oh miracle of miracles!
"Jessica?  Is that you?" 
"OH MY GOD...YES!  It's me.  Let me out.  I'm locked in!"
Christina opened the door and I practically fell on top of her scrambling to get some fresh air.  I know that I looked like a mad woman as I hastened to explain, between gasps what had happened.  Christina told me that she hadn't heard a thing until just then when she thought that she heard construction noise from the home that is being built next door.  Then as she awakened she thought that she heard a voice and thought that it didn't sound like construction workers.  That's when she decided to go check and see where the noise was coming from. Oh how fortunate.  I was so happy to be free that I almost forgot to get Mom. As an afterthought I went back to extract her from her room.  Then I gave one long blast of Lysol room deodorizer, sprayed the sheets with Fabreze extra strength leaving the room in a cloud of chemical neutralizers and went downstairs. 

Sadly, there will be no news reporters, no book deals, no survivor stories.  In fact, the entire incident would go completely unnoticed if not for this account. Christina was laughing so hard I knew that she would never support my claims of a near death experience. Alas, I stood on the precipice of disaster and no one even noticed.  When at last I stumbled to the phone to call Skip to report that I was safe, he hadn't even missed me.  He was still driving and was more concerned about telling me that he had received a speeding ticket.
"A speeding ticket?!  Oh no.  I am so sorry!" I told him, almost forgetting about my ordeal. My crisis was overshadowed. 

Darn it!  How could he trump me with a speeding ticket?!  Life is just soooo unfair.
 

Grilled Grandma

It has been a while since I have posted a blog.  Perhaps it is because I didn't have anything to say that was fit for publishing.  We hit the 'Dog Days of Summer' early this year, and it has put everyone in a grumpy mood.  Mom has been worse than usual (if there is such a thing as usual).  Certainly, the slow progression of her Alzheimer's makes EVERYTHING worse.  Mom has become more and more apt to act out negatively when she 'perceives' that we are out to get her.  From asking her to sit down on the automated chair lift, to putting on her nightgown at bedtime she is just as likely to scream and pound her fists in derision as to comply.  I feel like we are always walking on eggshells.  If there can possibly be anything uglier than what we have experienced thus far, this is it!  She has hit me, yelled at me, thrown things, and threatened me in violent outbursts.  Five minutes later she is docile and sweet. As I experience these changes I am also noticing some physical changes.  While the elderly tend to be cold all of the time and require a sweater or heat when the rest of us are uncomfortably warm, my mother has graduated to FREEZING.  So, back to the earlier comment about 'Dog Days of Summer' that implies that the heat and humidity have hit us; we have been hiding inside during the day because of the unusually high heat indexes.  The other day the thermometer registered 101 degrees and that wasn't even taking into account the humidity factor that made it feel a great deal hotter.  The Meteorologists on the local news stations warned of taking care of our pets and children and to check on the elderly. Clearly they don't know my mother!  From 8:30 AM Mom insisted on sitting outside on the screened porch which we let her do since it was only a mere 82 degrees at the time.  However, as the sun began to rise higher in the sky and the temperatures began to soar, we urged her to come inside.  She had no interest in complying with our wishes and when we insisted she became belligerent.   I tempted her with food and that moved her inside momentarily but soon she was headed back to the door.
"No, Mom.  It's too hot outside," I told her.  "Why don't you come sit in the family room and watch TV?  Within five minutes of sitting in the slightly cooler family room she announced, "It's FREEZING in here!"  Mom walked back outside to bake in the hot mid-day temperatures. I glanced at the thermometer.  It was 92 degrees and climbing.  By 1:00 I insisted that she come inside but that's when Mom decided to take a nap and there was no waking her.  I watched from inside the family room as she alternated cat-napping and rocking.  I tried again to coax her inside but she was adamant that she wanted to remain outside.  I checked her for heat stroke and decided that she was still okay so I left her for another half hour.  It was somewhat like cooking chicken on the grill.  She wasn't quite done yet so I left her on the grill for another few minutes.  When I came back a few minutes later and poked her, she was well done and grilled to perfection.  "It's time you come inside," I told her with a no-nonsense voice.  When she protested loudly I told her that she couldn't stay outside any longer...."People are dying in this heat!"  She looked around as if to spot others who were sitting outside and then back at me like I was crazy.
"It's not hot," she announced.
"It's a thousand degrees!" I corrected while silently excusing myself for embellishing the facts.
"Oh," she said not terribly impressed with this new information.
She stood up, grabbed her walker, and followed me inside.  I watched her take a full turn around the house.  Her walking path went from back door to kitchen to hallway, to front of entry, then looped back to the back door.  Mom had one hand on the back door when I called out, "NOOOOOO!  Stay inside."
Mom ignored me and tugged on the door.  "You're gonna kill yourself!" I warned.  Mom blinked at me in confusion.  "It's too hot," I clarified.
"Oh." She said, and then without understanding , she walked back outside.
I followed her out and turned the overhead fan up a notch to High.  Mom immediately shouted, "It's FREEZING" and I turned it back to low.

A little later I tried another approach.  I took some ice cream outside to help her cool off.  She ate it up greedily. I thought that put her in a good enough mood to get her inside but when I attempted to help her get up she pushed me away.  "I'm fine," she said with a slight slur.  "Just put the white ryan."  She gestured towards the screen.  Her aphasia had kicked in and so there was no telling what she was saying. I wondered if the heat was worsening the problem.  Maybe her brains were baking. I pictured the last few functioning brain cells sizzling in the heat. This was not healthy and I told her so.  That was too much for her and she told me to "Shut up!'  That was Alzheimer's Brain for sure.  She had never told me that in my entire life!  I walked back inside with a heavy sigh.

Right now, as I write this, the temperature on the screened porch is 100 degrees.  Mom is rocking lazily and staring at the trees.  She has been sitting out there for hours.  I have brought her water, which she refuses to drink. I have tried to physically remove her from her chair and she has protested loudly.  I have tried to bribe her with sweet treats inside. "Maybe later," she has told me.  I have even offered to take her upstairs to her room (something she always wants but never gets during the day, since it will only encourage her to stay up there and sleep all day and then not sleep at night.)

Perhaps I will go back outside now and offer a basting brush with some bar-b-que sauce since she is clearly going for Grilled Grandma of the Year.  While I'm at it I might as well don a prison suit since I will undoubtedly be arrested for elder abuse.

Sharing Caring

I really don't know where to begin.  This is so horrible and yet, weirdly funny.  I have told similar stories before that were equally, ehem...'difficult' but this one...oh this is so much more!

I began my morning checking my email while it was still quiet.  Mom was still asleep and that allowed me some precious minutes of undisturbed personal time.  My laptop remains permanently on the coffee table next to my mother's chair.  I realize that bending to type is a bad position for one's back and have suffered back strains when working that way; but with my caregiving duties I find that it is really the only way I can work and still keep an eye on Mom.

As I bent to answer an email I noticed that my back became tight and I rectified this by sitting back on the sofa and placing my laptop on my lap to finish typing.  With hips thrust unnaturally forward and tilted, my body staged a revolt. I didn't realize this until I heard Mom walking about upstairs and rose from the sofa whereupon my back locked stubbornly refusing to move or allow my legs to propel me forward.  I howled in pain sending Skip running to see what was wrong.

"I can't move," I told him as he helped me maneuver myself back to the sofa.
"What can I do?" Skip asked with concern.
"I dunno...just...um...get me a pillow."
Skip grabbed two pillows and pushed them behind me.  "Can you lift your legs?  Can you twist? Can you bend?" he asked trying to assess my injuries.
I answered with moans and groans.
Meanwhile Mom continued to pace upstairs growing impatient that no one was coming to get her. This was the moment we had dreaded -- the reason that I never left home overnight because I didn't want Skip to have to help Mom get into her clothes.  I wanted to spare him the sight that could never be forgotten. A naked 98 year old is not something one normally sees and frankly, it's just not the way I wanted my husband to remember my mother. But...As the saying goes; desperate times call for desperate measures; and Skip looked pretty desperate when he walked towards the door saying that he would take care of dressing Mom for the day.  I listened on the monitor as Skip greeted my mother.  Then I heard him explaining what was going to happen.
"Here are your clothes.  First put on your undergarments and then your sweater and pants.  I'll wait at the door and when you are ready, just call to me and I will help you with your shoes and socks."
For most people that would be sufficient, but with my mother the instructions might as well have been in Latin!  After a sufficient amount of time, Skip walked back into the room and I heard him exclaim in an agitated voice, "No Mom!  You need to put your bra on...no wait...NO!  NOOOOOO!!!  It was too late.  I knew exactly what had happened.  Mom couldn't dress herself anymore. She had whipped her nightgown off so that Skip could assist her.  Later, when Skip came downstairs looking like he had just smelled something terribly disagreeable I asked if what I thought he saw he had actually seen.  "Oh yes!" he told me with utmost displeasure.  His eyes rolled so many times I thought for sure they would get stuck in a permanent 'up' position.

The day progressed without any change in my condition and that night Skip helped Mom back into her nightgown and to bed.  I had hopes that I would feel better the next day or the next, but alas, the condition remained the same and Skip grew used to assisting with dressing Mom.  I felt awful about it but Mom was oblivious.  Then yesterday when we thought it couldn't get any worse, the perfect storm struck.

I was feeling a little better and decided that I could make lunch for the three of us if I stood in one position, no bending, allowing Skip to fetch ingredients and dishes. 
"Can you get Mom something to drink?" I asked as I flipped the omelet.
Skip must have thought that an omelet meant it was more like breakfast and poured my mother a glass of orange juice.  I didn't notice this however, until she had finished almost half of it.  I reminded Skip that orange juice usually caused my mother huge digestive distress.  Skip argued that it would be fine and ignored my protests.

I felt the familiar tightness in my back and realized that I needed to return to my lying-flat position on the sofa. Skip assured me that he had everything under control.  When Mom finished lunch Skip washed some grapes and gave some to Mom.  Mom, being oblivious to how much she had eaten or how she felt, readily downed the grapes and sat down to watch some TV while I (upon discovering what she had eaten) told Skip that she was going to be sick.  No sooner did I make this proclamation than my mother gave a gulping cough and got up quickly.  "Hurry!" I yelled.  "Skip!  Mom's going to throw up!"  Skip rounded the corner waiving his arms and rushing behind her as she slammed the door to the bathroom.  We heard the loud heaves from the other side of the door.
"Not in the sink!" Skip reminded her but knew already that it was exactly what she was doing.  Mom had forgotten where to throw up and it wouldn't be the first time we would gaze at a sink full of vomit. (This is the nasty part but I just have to go into the dreadful details.)  I could hear Skip almost gagging as he told Mom to go wait outside.  He was cursing quietly as he recounted to me what had happened.

"I told you," I reminded him.  I didn't like being right this time.  It was just too awful and I felt so sorry for Skip who was the one who had to clean up the sink.  There was no washing down a full lunch that had not even been digested.  Skip left to get a scooping bucket, some Lysol and latex gloves.  Before he could begin his disgusting task, Mom was already headed back to the bathroom looking panicked.

"Wait, wait," he yelled hastily rushing her to the toilet.  It was only the last minute that he noticed that the toilet was not flushed and when he went to flush it, it began to overflow.  "Hold on!  Wait...here's a bucket.  Use this." He practically threw the bucket at my mother as he lifted the back of the toilet lid to stop the flow of water.

"What's going on in there?" I called.  When Skip told me of the emergency I tried to get up off the sofa but quickly discovered that my back had locked up again.  I began flopping around like a dying mackerel while Skip ran back and forth from the bathroom to the garage and back with mop, bucket, and paper towels.There was more retching and then came Mom's announcement, "I have to go to the bathroom.  I'm gonna be sick".

Skip managed to get the toilet flushing in the nick of time and ran out of the bathroom to await the outcome.  He didn't wait long (and frankly would have gladly waited longer -- like for the rest of his life).  Mom had managed to make a mess of things (I won't elaborate). Skip could be heard saying, "Don't move.  Where are your panties?  Oh no!  Um...just wait.  I need to get you some clean clothes."  Then he ran out of the bathroom to the laundry room where a clean load of Mom's clothes awaited folding.  I saw him flash past me to the bathroom and heard him instructing Mom what to do.  Take off your shoes and socks.  No, your shoes...your SHOES.  No those are not your shoes.  UGH.  Okay.  That's okay.  Your socks need changing too.  No...keep your pants on until I leave.  NO...NOOOO.  Oh well.  Okay then.  Here.  Take these."  About 5 minutes later Mom emerged in a whole new outfit.  There was much clanging and banging in the bathroom; then the door opened and Skip handed Mom the bucket.  "If you need to throw up use this bucket."  Mom gratefully took the bucket and retched loudly.  "What can I give her?" He asked me.

I was tempted to reply 'No orange juice,' but helpfully told him where some anti-diarrheal medicine was.  Mom swallowed the medicine with a chaser of water and promptly threw it up in the bucket.  The whole 'event' lasted for about an hour. She was miserable, Skip was miserable and I was miserable. When Mom began to feel better, as is the way with Alzheimer's, she soon forgot the entire episode.  Skip, however, was still cleaning up. When at last Skip emerged from the bathroom after another hour, having cleaned and polished everything, I hugged him tightly.  Feeling around his shoulder blades I asked, "Does your back itch?"
"What?"
"Does your back itch where your angel wings are growing in?"  We both laughed.  Yes, my wonderful husband had done what most people would never do.  At that moment I realized that our wedding vows that we recited 49 years ago were being strongly tested -- that 'Through sickness and in health' part.  I doubt that either of us thought about a package deal that included in-laws as well.  Both of us promised to share our lives with each other (and evidently with others too).  Skip demonstrates his love and devotion to me every day, but this...THIS is the ultimate affirmation of both sharing and caring.  How amazing this man is!  I am so grateful to him for getting us through the day.

As I write about this my emotions are mixed.  The most unpleasant things provide us with positive insights, and lessons learned. I am also reminded that I find humor in the strangest things for as I recount this I begin to laugh out loud. The image of Skip almost airborne flying from garage to bathroom while I could do nothing more than observe and yell instructions is worthy of a sitcom. The bonus is to find the gratitude, and the gifts these experiences bring.  Skip is my gift (and my mother's as well.)  He dug deep and did what he needed to do.  For me, I found compassion for both my mother who was suffering and for Skip who was also suffering.  The greatest gift is to know that we are all three sharing the journey.  It is the caring that bonds us and binds us to each other.  I do not want to minimize this for as we continue on we see this every day and in every way. 

Undercover Scones

I was baking some scones yesterday.  My mother was very interested in what I was doing.  She sat at the counter watching, waiting and salivating.  For her, the best thing in life is sugar; yes, sugar in any form, served in any way and at any time.  If I want her to smile all I have to do is provide her with a never-ending supply of cookies, cakes, chocolates, and creamy, sugary delights. I have tried to cook healthy foods for her but  alas, she rejects all things nutritious.  In fact, I have found her picking and eating only the craisins out of a chicken almond salad and then flattening the rest of the salad with her fork in a show of derision.  "I will not eat this!" she complains.  If I were to give her a piece of broccoli covered in chocolate then rolled in sugar crystals, she would remark, "This is DEEELICIOUS!"

The more her Alzheimer's Disease progresses, the more displays of avarice for confections I see.  Okay, okay.  She's 98 years old and in good health (other than being in late stages of Alzheimer's) so why do I insist she eat her veggies?  Why do I peddle protein like a wicked Nutritionist?  In my defense, I am not alone.  My husband scolds her for ignoring her protein in favor of a syrupy morsel.  She scowls and complains.  She pushes her food around her plate like a petulant two year old.

But I digress.  Back to the scones I was baking: they were lovely little bite-sized treats that were coated with a sugar glaze guaranteed to send her blood sugar levels soaring.  I finished dipping and glazing the last scone when I looked at the clock and realized that I needed to leave for an appointment.  About the same time, my husband, Skip went outside to meet with a man from Critter Control about our problem with voles and moles.  (Yes, we have pests running rampant among our plants chewing roots and digging tunnels in the grass.  To be clear, the moles dig the tunnels and eat insects and worms while the voles borrow the tunnels to find their way to the roots of plants.  Their penchant for devouring all edible greens is truly legendary.  I wish that they could teach Mom to enjoy greens as much as these small rodents!)  Anyway, as I was saying, I had just finished my job of baking the scones and realized that the drying rack was too tempting to leave out.  As soon as I might exit the kitchen my mother was sure to be all over these morsels like  flies on flypaper.  I began to look around for how to hide the drying rack.  It was too large to place in a cupboard.  Skip suggested I put it on the washer in the laundry room and close the door.  I laughed sardonically.  Mom had not met a door she couldn't open.  In fact, she was a known escape artist.  She even managed to figure out how to get baby locks off of cabinets.  A closed door was certainly not going to keep her away from the scones.  I decided to place them in the cooling oven even though I risked a slight drying or melting and compromise of texture.  I couldn't risk leaving my mother alone with the scones.  So under cover they went.  Hidden from my mother's search and discovery I could safely leave home to make my appointment.

One might think that this is quite petty of me. If Mom wants a scone why not let her have a scone?  I hasten to remind the reader that a person with advanced Alzheimer's doesn't remember things from moment to moment; so as soon as Mom eats a scone she will reach for another thinking it to be the first one she has sampled.  This will continue until she gets sick to her stomach often resulting in what I delicately refer to as tossing her cookies!  So I control the amount of food intake and sugar she has.  Oh, and one more little fact; sugar gives my mother horrible indigestion.  We are constantly administering antacid tablets.  (We buy them in bulk!) I really do try to keep some semblance of balance while still giving Mom what she loves.

Over the years I have received supportive comments from friends who tell me I am a good daughter.  I am always happy to hear this when I am struggling with the issues that I have as Mom's caregiver.  This week, for example, I yelled at her when she blew her nose in her sweater.  I had the option of responding the right way or the way I wanted to respond.  My two mini selves (the good mini-me and the bad mini-me) sat upon my two shoulders.  One cautioned me to think carefully how to react. "Just hand her a tissue and then take her sweater off and replace with a clean one."  The other told me "Go ahead.  Tell her how you feel! You know you want to.  It's not good to suppress your feelings!"  Guess who won?  I shouted, "MOM!  What are you doing?  Why did you blow your nose in your sweater?!"
Mom replied, "It wasn't a big blow.  It was just a little blow."
I felt steam coming out of my ears as I bellowed, "I don't care about the amount of blowing.  I still have to wash the sweater now!"  (I said a few other things too and Mom turned around to face me indigently complaining that she did not like me yelling at her.)  I continued for another few seconds until my anger subsided and then left the room.  To those dear friends who think that I am a saint; I confess I am most definitely not!

So, here I sit with the knowledge that it is nearing my mother's tea time.   The angelic side of me says, give Mom as many scones as she likes while the devilish side of me says to give her one bite-sized sample and remove the rest.  What to do, what to do. I am still ruminating over the nose-blowing incident.  I am also reminded that my mother (who never ever goes into our inner sanctum -- the master bedroom) found her way to our bathroom instead of using the one which is designated as hers and which has her toilet chair and easy access.  I looked up from my work and saw that she was M.I.A, called for her, walked around the house looking for her, becoming increasingly worried as to her whereabouts, and then finding her wandering out of the bathroom. She had not flushed the toilet.  She had not used the toilet paper.  She had been less than careful.  (I will not go into details.)  I was livid.  My mini-me's were both screaming in my ears. When confronted she was defensive and irritated with me for being upset.  Yes, I was thinking of the other incidents and how difficult things were becoming. Mom's attitude was far more argumentative after tea-time. Suddenly, I had an epiphany and at that moment I made the decision.  Sugar makes Mom happy but too much sugar makes her cranky. What I did was obvious. The answer could be read as a news headline: Scones Stashed in Effort to Save Survivors! 

Hallucinations

I have witnessed my mother's hallucinations over a period of time but they are increasing to the point of being alarming, sad, disconcerting and yet, absolutely hilarious.  Last night at around 1 AM she shouted out several "Hellos".  I ran into her room to see what was going on.  Evidently she was hosting a party in her room but when I walked in she wasn't clear who was in attendance.  A few days ago she began talking to someone who supposedly gave her something to taste.  She was chewing on the imaginary tidbit saying, "Mmm.  It's so sweet!"  Today she walked into the kitchen and began talking to someone who wasn't there but refused to tell me who it was.  (Does she have a secret pal?)

This evening, Mom walked to the back door, opened it and shouted out to the empty screened porch.  "There's a light on in the kitchen and no one is in there.  Someone should turn it off."  Then she stood at the door for a moment and repeated her message.  At this point I decided to ask her who she was talking to.
"Those people out there," she replied.
"What people?" I asked.
"Them," she told me pointing at an empty porch.  "That whole gang out there."
"Okay," I said.  "So you see a whole gang of people?"
"Yes, she insisted.
Now, to be clear, I lecture others about how we shouldn't correct those with dementia.  We should enter their world instead of trying to pull them into our world. Normally I do that too.  It is crazy and totally counter-intuitive for me.  My responsible and logical self wants to point out the errors in my mother's thinking and perception but  I overcome my strong desire to be the one in control and play along...usually.  Today, was not that day.  It was the end of the day.  I had spent the entire day dealing with stressful things.  My brother was in the hospital; a brother who also has Alzheimer's and who is living out of state without a family member to help with medical decisions.  I was also dealing with a few caregiver issues that arose from a couple of the caregiver support groups. I was trying to help or find help.  In addition, my Mother-in-law on the other side of the country was injured and in acute pain. Both my husband and I were in contact with his sister, his mother and trying to assist long distance.  I will avoid listing all of the other things that were of concern other than the approaching hurricane that was threatening our area and for which we were preparing just in case it changed course and blew this way.

So, to get back to Mom's hallucination; well, I guess I was not feeling mentally equipped to handle it as well as I should have.  Instead of telling her to invite everyone inside I asked her what the people to whom she spoke looked like.  She peered intently.  Then, shaking her head she replied that she couldn't describe them.  "There are too many people out there.  They just look like a group of people."
"Yes, but can you describe them?  Are they men? Are they women?  What color is their hair?"
"Oh, you know," she answered.  "I can't tell you everything."
"Well show me one person," I insisted.
She walked out and pointed to an empty chair.  "There," she told me.  "Right there.  See?  That woman right there."
"What color is that woman's hair?"
"Green."
I looked at the empty green chair.  "Touch her," I commanded. Mom obediently touched the chair.  "So are you touching a person?" I continued.
"Yes.  Of course I am."
"Grab her hand and hold it."
"I can't," she replied.  "She just got up."
Still I couldn't let it go.  "Show me someone else," I pushed on.
"There," she pointed.  "That man over there."
I shook my head and said, "Okay.  Well let's go inside now."  I resigned myself to the fact that Mom was not going to admit that there was no one there.   

It had been that kind of day.  Mom had begun the day angry because she was sitting and waiting for someone to come get her and without calling out to us, I simply went up to help her at the usual waking time.  I found her standing in the middle of her room, naked and trying to wrap herself in a blanket.  She was tripping over it and had it stuck under the wheels of her walker.  I asked her what she was doing and why she had taken her nightgown off.  She replied that she wanted to put her clothes on but someone had to help her and she was waiting for them to come.  I reminded her that I was that 'someone.' Getting her dressed was an ordeal because she couldn't perform even the most simple tasks and I had to assist with every single thing.  (It was a new low.)

All day long, Mom walked around and around aimlessly.  When I tried engaging her in conversation her aphasia wouldn't allow for discernible conversation or answers. But this...this massive hallucination was more than I could bare.  I felt myself shaking inside.  My stomach was knotted. I tried to calm myself, to count to ten, to do some deep breathing but Mom was pacing again and finally I asked her what she was doing.  She couldn't answer.  When she sat down in the place that I usually sit, I asked her why she was sitting there and she gave a muddled response that was unintelligible.  She glared at me when I tried to provide some assistance.  Something was bothering her but she couldn't express herself.  There were two more incidents that required answers she couldn't provide.  Once more she was on the move and I asked where she was going.  She grew angry and petulant.
"I'm going to bed!" she scowled angrily.
"You can't.  It's not time."
"Well I want to," she yelled at me.  (I had pushed her over the edge.)
"Why?"
"Because I am tired of you asking me questions!"  (Hmmm...even though she had dementia and aphasia she managed to express how angry she was.  Yup!  I got the message loud and clear.)
Now it was my turn.  I'm not proud of these moments, but I lost my temper.  I told her, "Okay, go to bed...because I don't want to see your snarky expression anymore."  I stormed over to the door to open it to her room. I took her upstairs. I decided that I would get one more 'dig' in.  "Can I help you with your nightgown or is that a question you don't want to answer either?"  Suddenly I was the injured child.  My mother became the mature one. with a kind tone she replied, "I didn't mean that you couldn't ask me questions...I wasn't really mad at you. I'm just mad at the situation," she told me with a lucidity that I hadn't heard in over two years.  I was amazed.  It was like a slap in the face.  It calmed me right down and now I was apologizing to her.  I explained myself telling her that I loved her and as her daughter who cared for her I sometimes might push a little too hard.  I felt terrible.  Reminding myself that I shouldn't lose my temper, that I was dealing with someone who couldn't help herself, I had to allow for my mother's temper just as I might do with a small child who found that the only means of expressing frustration was through an emotional outburst.  I told Mom that it was okay for her to get angry once in a while.  "Neither of us is perfect," I reminded her with a smile and a wink.
Mom smiled back and nodded.  "I'm sorry," she told me with eyes filling with tears.  "Sometimes when when you ask me questions I get confused.  It's upsetting."
"I know," I told her consolingly.
My heart was full. I was so very sorry I had been angry.  How could I have lost my temper?  I berated myself.  My eyes also filled with tears as I gave her a hug.  "I love you Mom."  I turned and walked away before she could see me crying.  I stood at the door and shed my guilty tears but then slowly remembered my own words I had just spoken to her.  "Neither of us is perfect."  I could forgive myself for my lapse.  It was alright.  I walked back to her bed, straightened the covers and pulled the sheet up under her chin.  "Goodnight.  Sweet dreams," I told her softly.  She was already rolling over to fall asleep smiling sweetly.
"Thank you," she mumbled back in a sleepy voice.
I turned off the light and walked away grateful that the day ended on a good note.  There was no real resolution. However, there was solace in knowing that beneath the high emotion there was still a profound love.  The love that we shared was sometimes battered, sometimes abused, and even sometimes ignored, but still there, still in tact.

It is a strong reminder that the memories might be gone, the mind might be failing, but as long as there is a breath to breathe my mother will always know deep down inside that she is loved.  Love speaks to the part of her protected by some unseen force.  Her being...her soul will always be the part of her that time and the ravages of Alzheimer's will never touch.  That is what I speak to...it's what I will fiercely protect, treasure, and address when my words have lost all meaning, when her awareness is gone, and when her thoughts have dried up.  When her own words fail and the smile fades, she will still know I love her.

Therapy Pet? Nope.

I might have mentioned that my mother has become a warrior when it comes to our son's girlfriend's cat, Sydney.  Mom sees that cat and panics.  "Get that cat away!" she yells.  "Don't let it into my room!"  She, who is usually a sweet and mild mannered woman turns into a vigilante saying things like, "I'm gonna shoot that cat!"  Whoa...Mom!  What's the deal with that?!

Well...now our dog, Kira has taken up the cry.  She and my mother have united on their mission to rid our house of Christina's cat. (Mind you, Sydney has historically remained in her apartment behind closed doors and honors the house rules.)

Mom loves Kira.  Mom and Kira bond in some unspoken way and when Kira hears Sydney meow on the other side of the door she runs to Grandma for attention.  Mom complies with a scratch behind the ears while Kira gives a satisfied smile.

I don't want to make it seem like the poor little kitty is a saint though.  There are reasons that Kira is terrorized by the cat and who knows, maybe there are reasons for my mother's dislike of Sydney as well.  I know that Sydney, upon meeting Kira, attacked her with hisses and slaps to the snout.  Kira, who is at least four times larger was offended by this behavior and ran from Sydney back downstairs finding a sympathetic adult who might protect her from the psychopath upstairs.  Grandma placed her hand on Kira's head and scratched softly thus calming and reassuring Kira that today she would not be eaten by the 'Clawed Aggressor'.

The other night, Christina and Bill were visiting from their apartment and accidentally left the door open.  It was late.  Mom was asleep in her room.  Skip had also gone to sleep.  Bill and Christina were sitting with me on the screened porch when Kira came running outside in a panic.  She looked around wildly to see who might assist.  "What's the matter, Kira?" I asked.  I ignored her.  She left.  A few minutes later she returned; this time Skip was following.  He looked sleepy and announced that she woke him up jamming her snout in his face and pushing on him until he got out of bed.
"I guess she needs to go out," he told us.

Kira refused to go out and Skip grew impatient, yelled at her and returned to bed.  A few minutes later Kira repeated the same behavior. This time Skip was angry.  He insisted that she go out with him and 'do her thing' but when they returned he reported that she had not done anything but pull at him to return to the porch where she remained pushed up against me.  Skip was about to return to the bedroom when he heard the unmistakable meow.  It was coming from our dining room.  Sydney had escaped and was in our house!  THAT'S what Kira was trying to tell us.  There was no Grandma to provide loving support and the rest of us were ignoring her!

They say that animals are great therapy for the elderly but I submit that it is the other way around in our home.  Furthermore, certain animals (such as cats who obviously visit my mother at night and threaten to sleep in her bed no doubt) are the antithesis of therapy pets.  Just ask my mother and my dog.  According to them we are under siege and there's no one paying any attention.  In fact, if my mother awoke at night calling that there was something in her room we might ignore her assuming that it was her dementia.  (It causes hallucinations.)

I have a feeling that if given an opportunity my mother would take care of this, ehem, 'problem' Mobster style.  Yep, Sydney, if left to my mother and with complete support of our dog, you could be taking a long walk on a short pier!

Mint Juleps for Grandma

I am a writer.  I write constantly.  Right now I am working on a supernatural thriller.  Oh...and taking care of Mom.  So here I sit writing away with Mom sitting next to me in her Alzheimer's stupor (as I so disrespectfully call it) watching Dr. Phil.  I am distracted by a teen runaway being confronted by her parents.  Dr. Phil dispenses his advice as my mother stares. I try to return to my writing but must now recreate the mood.  Okay, I'm back into it again. Suddenly Mom comes alive remarking that the girl's hair is a mess.  "Someone should talk to her about how she appears on TV."

"She's a runaway, Mom.  She's been living on the streets," I explain.

"Well if she fixed her hair she would look better!"

ARGH!  I go back to my writing trying to ignore what is happening on TV and my mother's comments.

Mom continues to talk.  "She should be embarrassed." Later she adds that people have no common sense.  I don't even ask what that particular comment means.

When Dr. Phil finishes, Mom is up like a shot and practically running to the kitchen counter like Pavlov's dogs.  The closing music is a signal that lunch is ready; only, it isn't.  I look up and abandon my writing.  I go to the counter to tell her, "Mom, it's not time to eat yet.  I haven't even started lunch."

"What?  I can't hear you," she replies.

"I SAID LUNCH ISN'T READY."

Mom's selective hearing kicks in.   "Lunch?  Yes thank you."

"No lunch.  Not yet. I haven't even started it yet."

"Huh?"  She cups her hand to her ear in that universal gesture that says, 'speak louder.'

"NO LUNCH!  GO AWAY!"

"What?"

I throw my arms up in the air and begin making her lunch.  It's no use telling her anything else.  She sits practically panting and waiting for the sandwich.  I decide to make her favorite -- peanut butter and jelly.  She has no idea what she's eating when I serve it to her.  I ask her if she likes it and she replies, "It's delicious!"

"What is it?" I ask her.

"Um...uh...it's a sandwich."

"Yes, but what kind of sandwich?"

She thinks for a long time and takes two more bites.  She has now forgotten the question but like a Pit Bull I hang on and won't let go.  "What is it?" I ask again.  Mom doesn't respond. I finally give up and tell her.  "It's peanut butter and jelly."

"Ohhh," she says.  "I've never had that before."

The other night I made her a chicken pot pie, some asparagus, and put cottage cheese on the plate.  She didn't know (or like) what she was tasting, got up and walked away.  "Aren't you hungry?" I asked.

"No.  I'm full."

"But you only had a couple of bites."

"Oh?"  She looked down at the plate and shook her head.  "I'm really full."

I insisted that she have a couple more bites before leaving.  She complied taking a taste of the pie but then turned her nose up to the other stuff.  I went and got some sweet apricot preserves, mixed them into the cottage cheese and suddenly she devoured it with gusto.  Sadly she also mixed the asparagus and the chicken pot pie in with the cottage cheese and apricot preserves.  I walked away unable to watch.

* * * *

It is Kentucky Derby Day and Skip and I are making Mint Juleps.  "Hey Mom," I yell from three feet away (she's really hard of hearing.)  "Do you want a Mint Julep?" I joke.

"SURE!"  she answers enthusiastically.

I ask her if she knows what that is and she reports, "It's some kind of drink.  I love them!"

Hmmm.  Dare I?  She takes no medication so what's the harm?  I fix one for her.  I dilute hers with a little water and give it to her with a straw.  She sucks it down like a Hoover before I have finished pouring Skip's and mine.  We nurse ours along for 45 minutes.  Mom sits quietly watching the Derby licking her lips and smiling.  

EXCELSIOR! I think that I have discovered the secret of writing uninterrupted.  Just kidding of course but oh how tempting.

Congrat-u-burstans! And Many More

We have noticed that Mom's aphasia has become more of a regular occurrence.  It used to be an occasional anomaly but now, with regularity we hear strange words and outrageous sentences on a daily basis.  A couple of days ago, Mom got up and walked out of the room then returned within thirty seconds.  I asked what she was doing and she answered, "I was reading the...uh...regular people."

I didn't know what she meant.  I asked for a clarification.

"I...er...I was counting the...place-ter."

"What?"

"The plates," she corrected.

"What plates?" I was looking around wondering what she meant.

"You know!  For the people."  (Okay, I was beginning to catch on.  It was close to dinner time.  Perhaps she thought that she would set the table.  Who knows?)

I tried to get more from her and she provided some unintelligible words that meant nothing.  There would be no understanding and I finally gave up trying to understand the 'coded' message.

Just then Skip walked in the room.  He mentioned that his birthday was going to be the next day and Mom immediately brightened up.  With a broad smile she told him, "Congratuburstans!  And many more."  I couldn't help it.  I began to laugh.  The word just tickled my funny bone.  The more I laughed the more it repeated itself in my brain.  'Congratuburstans' .  Ahhahahahahahaha.  I had to get up and leave before Mom noticed that I was laughing.  I didn't want to laugh at her but I couldn't help myself.  There are moments of hilarity that make me feel guilty.  However, I quickly recover reminding myself that laughing is helpful...laughing is therapeutic.  These days I definitely seek anything that I consider therapeutic to help me through some of the rough patches.  The rough patches are becoming more and more numerous though. While laughing over a funny word is something noteworthy, I often must seek the opinions and reactions of others to find the humor in a situation, action or incident.

An example occurred today when I discussed the events of Skip's birthday party with a fellow caregiver.  I recounted the frustration I had felt over the  bizarre behavior Mom exhibited during the party.  I had worked hard to keep it a surprise and even fed Mom lunch ahead of time so I wouldn't give any indication that within 1 hour there would be food at the party.  Skip was surprised when guests arrived with potluck dishes and abundant amounts of food and snacks.  Unfortunately, so was Mom.  She was thrilled to see every manner of snack, appetizers and tasty morsel present itself on the dining room table for her munching pleasure.  I reminded her that she had eaten lunch earlier.  I told her to 'go light' on the snacks because it would be easy to overeat and then become sick to her stomach (something she does with regularity).  I immediately realized that this was a futile conversation.  Mom was glued to the table.  She waited until I turned my back.  Then, her hands flew to the chips, the dips, the cookies, the sausage balls.  She grabbed anything and everything her fingers could reach with the agility of a professional pilferer.  Squirreling her delectable treasure away in her walker or within the folds of her shawl, she would exit to enjoy her 'booty' privately and without risk of detection.  At one point I looked up from my seat in the living room where I was enjoying a conversation with our daughter in time to see her rushing out of the dining room into the foyer where she removed something from her mouth and threw it into a potted plant.

"What are you doing?" I yelled.  She ignored me.  Skip was right behind her though and looked into the planter to find a shrimp tail.  Mom was still chewing the piece of shrimp while saying that she wasn't eating anything.  My daughter got up and suggested that she make a small plate of food for my mother to keep her busy and out of the dining room where there were too many choices and certainly foods that she shouldn't eat.  We sat Mom down at the kitchen table with her spread which she dispensed with quickly and efficiently.  Before I turned around she was back in the dining room.  I found shrimp tails deposited in various hiding places and became quite cross with her.  While tempted to say that she didn't know any better, it was clear that she was a woman on a mission each time I told her that she had probably had enough to eat.  She either ignored me or would circle around the other way to avoid me and then enter the dining room from the other side.

Our son, Bill finally closed the dining room door as Mom was headed in for her eighth or ninth visit to the table.  I watched as she stopped for a moment, then rapidly turned her walker mowing down a couple of guests as she rushed to the other door before our son could get to that side.  Who says that 97 year olds can't be agile?

Later, after the guests had left and the food had been put away, I noticed that Mom was eating something as she sat watching TV.  "What did you find, Mom?" I called to her.  She hastily hid the morsel inside her walker as I approached.  "Mom?  What is that?" I repeated.

"What?" she asked innocently.  I began explaining how she couldn't sneak food into her walker, her shawl and myriad other hiding places.  She gave a blank stare and in total exasperation I walked away deciding that it wasn't worth my energy to deal with it.  I was tired and ready for the time when I could tuck Mom into her bed for the night.  A little while later, as I was helping Mom into her nightgown I asked her to hand me her hearing aid.  She reached up to her ear and gave me a confused look.

"ARGH", I thought. "Now she doesn't know how to remove her hearing aid!"  Then I noticed that her hearing aid was not in her ear.  "Where is it?" I asked her knowing full-well that she wouldn't be able to tell me.  I shouted for Skip to look downstairs and I continued to help her into bed.  When I returned to the family room Skip was holding the hearing aid and telling me that he found it.  "Where was it?" I asked.

"In the trash."  We both sighed

My friend listened sympathetically but also laughed loudly as I described the events that left me frustrated and exhausted. I began to realize how ridiculous and crazy everything sounded to the outsider.  Thinking about it, I began to laugh as well.  Soon my mood lightened as I considered the funny side...the jokes that could be made.  Unwittingly my mother was providing lots and lots of material for our stories, our memories, our reminders of family gatherings, occasions, and times that we will recount in years to come not with anger, exhaustion and frustration but with smiles, laughter. and perhaps a few reminiscing tears.

The Last Christmas Cookie

The Last Christmas Cookie

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I finished washing the dishes and putting the crystal away.  I wiped away the spills and crumbs from our New Year's Day celebration and thought about the holiday season.  There was a bittersweet quality to my memories.  It had been a busy, chaotic season.  So often I had thought about my mother's condition as I kept striving to create a memorable holiday.  I had cooked, baked, decorated, planned, wrapped, shopped and cleaned.  I had cared for Mom, saw to her needs, and adhered to her schedule.  It was incredibly stressful.  Her Alzheimer's disease was progressing to the point that I often had to stop what I was doing to take care of issues I had not even imagined earlier.  She required constant supervision while awake. I called it the 'Shiny Object Syndrome'.  Mom was attracted to anything new and different.  She touched, tasted, and took anything that interested her.  If I turned my back something might go missing or worse; something might end up with a thumbprint in the middle or a nibbled corner.  It didn't matter how many cookies she sampled, she would forget and look for more.  Trying to put together holiday treats, gifts, and preparing for parties and entertaining was beyond difficult.  As I thought back about the events of the past month my eye caught a plate I had missed.  It held one cookie.  I was about to toss it in the trash, filled with resolve to remove sugar from my diet when I stopped myself.  It was the last of the Christmas cookies and the symbolic meaning didn't escape my notice.  To me the cookie represented the joy of the season, the memories created, the laughter, camaraderie,  cheer.  Within its tiny circumference was a world of emotions: the happiness and the reminder that the Holidays were over. 

 I thought back to Christmas Day.  We had gathered at my daughter and son-in-law's home to enjoy another wonderful Christmas. I looked around the room filled with loving, smiling faces.  There were our two children, our two grandchildren, our son's girlfriend, our son-in-law, our family dog, and my mother.  It had been difficult thinking about how to get Mom there.  How would we pack all the food, the presents, the dog and five people in one car?  We decided that we would take two cars.  Problem solved!  Now another issue: could Mom navigate her walker around the house?  Could she manage to last the entire day and evening?  Would she be safe?  How would she deal with the car ride?  I was glad that it all worked out regardless of how closely I watched Mom, how I fretted about her dropping something, breaking something, doing something socially unacceptable.  I carefully regarded her choices of foods knowing full-well that she was incapable of making choices and might easily overeat, become sick, and end a lovely day with a quick exit for home.  I monitored her movements, her needs, her facial expressions to determine what she might require, what she wanted, and where she was thinking of going.  I was reminded of those days long gone when the children were babies and visiting was a chore as I supervised, disciplined, corrected, and worried over each action and reaction.  Once again I was thrown in the roll of mother to my own mother.  Yes, she was now a child -- a two-year-old.  

At the end of the day, as I helped Mom into her nightgown and under the covers, I asked her if she had enjoyed the day.  "Oh yes!" she replied.  I reminded her of who she had visited, what she had eaten, and the gifts she was given.  She smiled happily and burrowed beneath the blankets already closing her eyes.  I could see that she was tired.  Her mind had fallen asleep hours earlier.  Now it was time for her body to catch up.  I sat down with my husband, Skip and talked about the day.  I remembered to text our daughter to let her know that we had gotten home safely.  She replied that they were watching movies of old Christmas celebrations from other years when my father was still alive.  Part of me was unhappy to miss that but another was relieved.  I knew that watching old videos would only serve to remind me of how quickly things change...how soon our lives move from child, to adult, to elderly, then (all too often) back to child.  I immediately grew sad.  I thought about those fun times when my parents (even younger than Skip and I were now) would drive to our home to be with us and the children on Christmas Day.  Now, my father was no longer with us and hadn't been for some time.  Soon, Mom would also be gone.  She was still healthy and physically doing well but I had been warned that as Alzheimer's progressed her body would begin to shut down.  Was this her last year with us?  Was this the last family gathering with her?  I wondered how many bonus days we could enjoy.  I found myself thinking forward.  In June, Mom would turn 98 years old.  Would she still be with us?  I grew more and more saddened as I thought of the events that were so important to us...those events that brought us together in celebration.  Now, even if we still had Mom with us, it would be stressful, less satisfying, more work, riskier to take Mom out. 

People have often remarked when they see me with Mom that they wish that their parents were still with them.  I  think of that now.  How I wish that my mother...the mother who once was, could still be 'with' us.  The following  morning as I greeted Mom upon her awakening, I asked her if she had enjoyed herself the previous day.  She gave a blank expression.  I reminded her of the gathering for Christmas.  She replied that she didn't remember.  We talked about the food and the gifts and still there was no spark of memory.  I felt a lump growing in my throat.  I suppressed the tears.  Mom was not 'with' us on Christmas Day.  Sadly, Mom would not be with us for our birthdays, for holidays, for family celebrations, for events.  She would never be 'with' us again.  Yet, we could see her, touch her, hear her voice for now...for another day, another, week, month, year.  There was no telling how long.  I  told myself to cherish each second regardless of the stress, the worry, the bother.  

It is now the beginning of the new year.  I used to look forward with excitement and high expectations, but now I dread it for it brings forth a silent testament of how quickly things are changing...moving towards yet another change, another loss, another sadness.  I thought about this.  My attitude had definitely shifted.  It was like looking at the crumbs from the last Christmas cookie.  A season had ended and for the moment there seemed  little to anticipate with optimism. In fact, I noticed an insidious pessimism creeping and permeating my emotional well-being..  I realized that if not checked immediately it would soon become a debilitating depression.  

It was time to shift my focus.  That last Christmas cookie didn't only represent the end of a year and a wonderful, fun-filled season but the promise of more to follow. I would be baking more cookies before I knew it.  There would be more parties, more gatherings, more fun.  I thought about the saying, "When one door closes another opens" and felt a growing curiosity.  What might it be?  What did the new year hold for all of us?  I made a promise to myself that I would remember to celebrate the minutes and hours of the day, enjoying the moments and not miss a thing.  Even as I was thinking this, I noticed my mother walking over to the counter for the third time in ten minutes.  She had forgotten she had already eaten her lunch and now she was sitting down looking for something edible.  She picked up an unlit holiday candle encased in a decorative glass.  It had been left within her reach and now she tilted it to her lips trying  to drink the contents.  When nothing came out she took her fingers and poked at it aggressively.  I watched in amazement.  I almost corrected her but thought that I would let it play itself out.  She tried again and again to taste the contents of the glass.  Finally, I called to her.  "It's a candle,  Mom.  You don't drink it."

"I know," she answered a little indignantly. 

 I could be angry and frustrated by this or I could find the beauty of the moment because it became something memorable...perversely funny.  Perhaps because I didn't want to cry, I managed to find the humor.  I made the choice.  I couldn't help myself.  Her indignant expression made me laugh. I took the candle from her and placed it back on the counter.  There was no question; she would try it again.  There was so much to fret about...or to cherish and remember.  Just like a Christmas cookie, I would consume it and enjoy it.  It was a fleeting moment but just like the myriad little things that occurred day after day,  I would dutifully record this and hold it as a part of my Christmas memories.