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."

Why I'm Not Laughing

A friend saw me today and inquired as to why she hadn't seen any funny blogs from me lately.  I grimaced as I told her that there was nothing funny to write about.  My friend's sympathy was immediate.   I hated the fact that what I said evoked a sympathetic response.  Yes, my mother is going downhill quickly, and, yes, it is incredibly difficult for both my husband Skip and for me to deal with the changes, the outrageous anger, the screaming and the dangers that accompany her manic episodes.  However, I am seeing the light at the end of the tunnel and humor will soon creep back into my life.  We have been told by everyone--all of the nurses, CNAs, hospice workers, and social workers that Mom should be in a skilled nursing facility.  She is a danger to herself and to us.  So I set aside any guilt that I might have had surrounding placing her in a nursing home and began calling to see who could take her. We found a home that was recommended by another friend and began the paperwork.  There were forms to fill out...lots of forms. Navigating my way through the process was, and still is, a learn-as-you-go feat.  The most difficult part is leaving messages for people and then waiting for them to call back (usually when I am in the shower, walking out the door, or on the road without ability to make notes.)

So, what I am saying is this; I have spent 20 years observing my mother's slow descent into oblivion.  It began a a few cognitive slips that caused me to raise my eyebrows.  Then there were some memory issues that crept into conversations and again, I took note.  After Dad died it was apparent that Mom had a brain dysfunction that prompted me to take her for tests and that was when she was officially diagnosed.  As time slipped away Mom grew more and more confused, forgetful, and childlike.  Four years ago, when we took her into our home to care for her because she was no longer capable of living independently, I began my journey as caregiver in earnest.  But it was not without humor and love.  Always, there has been laughter, playfulness, and joking that cheers us. Always...always...always.  Until now.  The past six months have been unbearably difficult--a nightmare from which we do not awaken.  I have described things in other blogs or at least alluded to incidents.  They are daily, even hourly now.  Hospice was called in because, well, she's dying. (We just don't know when.)  Hospice prescribed medication to control her unfounded anger, her hysteria.  We tried different pills, different amounts, different ways to administer medication to no avail.  She is drugged, she can't speak, she can't hear, she is fearful of everything, and now she is completely dependent on two strangers (us) whom she thinks are trying to kill her every time we gently assist her by touching her.  She sits in wet diapers not allowing us near her to change her.  She punches, kicks and slaps me when I try to help her into her nightgown.  She flails about when we are on the stairs and I fear that one or more of us might take a tumble.

This leads me to my original point.  There is light at the end of the tunnel because with as bad as things are, I cannot see any reason to continue to try to care for her at home any longer.  She had a good run but I know that if she were cognizant she would tell me to put her somewhere so she could spare us any more heartache.  Oh...but there IS heartache.  It is the knowledge that my mother's last years are providing an indelible memory of the hiddeous nature of Alzheimer's, of the images of a broken woman reduced to immodesty, all dignity removed by the situation of having her diapers changed, of being fed, of being bathed, dressed and toileted.

The thing is, before I celebrate my newfound freedom, I am already beginning to wonder how it will feel having our home back.  How will I adjust to my new role as non-caregiver?  I know that when she enters the nursing home she will never return to us.  Her last time at the kitchen counter, the last tissue I will remove from her breakfast dishes and throw in the trash, the last diaper I dispose of, the last time we change the sheets on her bed--it will all hit me and I know that for a while I will feel like something has been torn out of me.

I sit here evaluating.  Is it true that the stress and daily turmoil has become so much a part of me that I will miss it when it is gone?  I remind myself that just like any other form of grieving, I must take time to allow for the adjustment, the tears and the loss. I take a deep breath and go to bed wondering if tomorrow will be the day that all of the paperwork is ready, that Mom is admitted to her new
home--her last home before she is called to her eternal home.  I said my 'Good-byes' many years ago, but now, with this final decision I want to hold her for just one more minute, one more day because when she leaves us she takes a lifetime with her, a bond, a mother-daughter relationship, a presence.  I know that I will live the next few weeks on tenterhooks waiting for that phone call.  It will come sooner rather than later.  It will be from her nursing home, some kind soul will deliver the news and I will cry regardless of how I have prepared myself, how I have hated these past few months.  A loving child always cries.  We cry for our mothers who used to be, for the child within us, and for our own mortality.  So today, if you ask me why I am not laughing, you will know.

Manaleega

My mother has been driving me crazy saying non-sensical things that I can't understand and then getting angry at me when I don't respond.  The other day she yelled at me (just because I said, "Mom, I can't help you because I can't understand you."  Then I asked her to point at what she wanted and she got frustrated and threw her arms up in the air like I was an idiot.  She stormed off yelling that I was mean and mumbled something about "Just you wait...mumble, mumble...you're gonna get yours!" Implying that someone was going to rub me out or at least do some act of violence.)

Mom is always threatening violence these days.  If we gently take her hand to assist her getting up she yells, "Take your hands off me!" Then she yells "HELP, HELP!  Momma...they're killing me.  Help me Momma--M-O-M-M-A!!!!"  (Yup; THAT comes out loud and clear.)

I feel like I am living in a loony bin. (Have I said this before?)  So, when Mom walked into the kitchen and pointed at the counter saying "Manaleega," you can imagine my confusion.  I shrugged.  "What's manaleega?" I asked.  Mom looked at me with a blank expression.  "WHAT'S MANALEEGA?" I asked loudly thinking that she didn't hear me.  Still, she looked at me blankly.  Finally I screamed, "Manaleega...what is it?"

"Yes," she answered.

I could feel my veins popping out on my temples.  "NO...not 'yes'...I mean, I don't know what Manaleega is!"

Mom looked at me like I was speaking Latin. "Neither do I," she answered.

That's how our communication is these days.  There are moments, snippets of intelligible speech and then it lapses into gibberish.  One day, Mom sought me out and asked, "Can I sit here?" pointing at her usual perch next to me.

"Of course," I answered.

Then Mom started talking gibberish and when I answered 'yes' to something that evidently I wasn't supposed to answer 'yes' to, she got angry and stood up grabbed her walker
and stormed out of the room saying very clearly, "HRMPH!  Some companion you are!!!"

I'm getting used to this abuse, but still, every once in a while I react inappropriately.  I utter things under my breath.  Okay, I'll admit it.  I am not an angel.  When Mom told me "Go to Hell!" I uttered quietly, "I'm already there!"  It's childish but somehow satisfying.  Look, even if Mom didn't have Alzheimer's I would get angry every once in a while.  So, there is not any guilt about my reactions.  I'm okay with the fact that I find this person objectionable.  She screams and demands, shouts and insists.  She curses, and spews bile at us while we perform our caregiving duties trying to protect her, feed her, keep her clothed and clean.  I hope that somehow, somewhere inside that dying brain there is knowledge that we love the woman she was and made a commitment to care for her.

Sometimes...just sometimes though, we feel like pinning a note on her shirt saying 'Please take me,' and leaving her at a local fire station.

Into 2019

We end each year looking forward to new beginnings, choosing to make changes, improvements, and goals. We sometimes try to forget our mistakes and ask forgiveness of ourselves and others. The moment the clock chimes midnight, we sing and celebrate to herald in the new beginnings. I know already what 2019 will bring without being a prophet, without a crystal ball, and without seeing a fortune teller. In my life, in my house every day is the same. 2018 went out the same way 2019 came in. There was nothing more than a whimper. My mother, for whom we care, slept through the toasts, the celebrations and the partying of others. She slept through the proclamations that this next year would be better. She snored softly as revelers looked forward to good health and good fortune. When she awoke she called to unseen and long dead relatives. She was confused and babbling as we entered her room. She couldn't communicate nor could she understand the simple words we used to tell her to go to sleep. It was still too early. On New Year's Day, she walked in a fog, slept, ate without knowing what she consumed, and sat in her chair gazing at nothing. By evening she was angry and stubborn, just like every night. We gave her medication to calm her, to quiet her. It didn't work and once more she fought us as we attempted to help her to her room, to help her undress and ready herself for fitful sleep. She railed against us, cursed at us, threatened to kill us. She slammed her fists down and screamed as loudly as she could using every bit of air in her lungs. This is what the new year brings. This is the final stage of Alzheimer's disease.

Still, there is hope that this year will bring solutions, cures, pills, medical breakthroughs. It will be too late for my mother but for others...maybe, just maybe there will be something that will help them. There is hope that soon, my mother's journey will be over and this nightmare that locks her unwillingly into this reality releases her. Does that sound harsh? Does it sound unfeeling that I would wish that my mother's soul be released? I defend my attitude as I stand witness to this obscenity we call Alzheimer's disease, helpless to do anything but keep her comfortable and in absence of that, to keep her drugged. There is nothing to be done but wait, service her needs, endure the pain. For those who know nothing of caring for someone such as this, I counsel that it happens to too many. Everyone knows someone. It is happening more and more and unless we find a cause, or a cure, it WILL affect almost everyone.

So...2019: I begin with a promise to do my utmost to be compassionate, loving, and caring, already knowing that I will fail miserably. My personal goals to care for myself, to get more exercise, to eat right, to share more time with loved ones and dear friends will not be met. Even though it seems like a bleak future, there is optimism that I will find great strength and joy somehow and somewhere. This I know--that each and every year I look back and evaluate what I have learned and how I have grown; and among the ups and downs there is a sense of accomplishment. I cannot see too far forward--it's murky what will happen and when it will happen, but seeing the past is crystal clear. Instead of leaving it behind me and making resolutions I will build upon everything I have learned and how I am growing with each new challenge. This is something to look forward to in 2019.

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.
 

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

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

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

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

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

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

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.

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!

The Memory Keeper

Available Now on Amazon and Kindle

I am a writer.  That's difficult to say when I'm so busy being a caregiver for my mother who is 99 years old and has had Alzheimer's for 15 years. Mom lives with us.  She is in advanced stages now but was exhibiting signs of Alzheimer's even while my husband and I cared for my father who also had Alzheimer's.  No one...NO ONE is prepared for this!  There's no caregiver's manual that tells us how to do this job.  I decided that as a writer it might help others  to write about caregiving in the non-clinical, in the trenches, personal experience, kind of way.  I have found ways to help myself out of my depression, anger, denial, impatience, sadness, and frustration.  I've discovered so many things to help me through the most difficult job I have ever experienced.  How could I do anything BUT write about this to help others? My latest book, The Memory Keeper, is the fourth in a the series of our journey and experience  dealing with the devastating disease and condition. It was a cathartic process to share my words, my thoughts, my emotions.  They are sometimes raw, sometimes irreverent, often loving.  I am resolved and accepting of what is to be, in a philosophical kind of way; but I also see the humor in some of the events that lead us there.  Because of my writing style and the way I deal with the often taboo subjects (that one simply doesn't discuss in polite society!) many others have written to me thanking me for my candid discussion of these difficult issues.  One reader who attended a book signing proclaimed that my books were like her own personal therapy sessions.  Many have thanked me for giving them permission to laugh through their tears.

In my book, The Memory Keeper, I take it upon myself to record and retain the legacy that my mother leaves as I grapple with my own emotions and difficulties of caring for her.  Her memories are lost...imprisoned in the disease-ridden brain that doesn't allow for thoughts, speech or even physical control.  I alone must pass down the family stories.  I alone must chronicle the life of the wonderful, beautiful, elegant, vibrant woman who used to reside in the body that sits quietly now in our family room staring at the television without understanding.  The weighty responsibility of caregiving reminds me that while we are still able we must make the most of each moment.  We must embrace the opportunities when we can to share stories, to ask questions, to spend time with each other, and to cherish life while we can.  I am resolved...yes.  It is too late for tears.  It is time to smile about my mother's  life well-lived.

MAN Flu...It's a Real Thing!

My husband, Skip, rarely gets sick.  He has a strong constitution.  However, the few times he has been 'taken down' by a virus he is sicker than a dog (according to him). MAN flu!  It's that condition that men get when they are sicker--in fact, at death's door with the first sneeze, the first cough, and (Heaven forbid) a fever! Skip knew that he could only push it so far since I am caring for Mom too, but I certainly heard about how sick he was!

Being that we are caring for Mom, we have to be very careful to keep his germs contained. That is no small task.  Skip is the keeper of the TV remote, opens the refrigerator, makes the coffee (because he is a 'Coffee Nazi' and no one can make it as well as he.) He opens cabinet doors, flushes the toilet, picks up the phone, turns on the water at the sink, and handles the mail.  All in all he touches things...lots of things, being unaware or perhaps just forgetful of the fact that those nasty little germs remain on all the surfaces he contacts.  Now, I don't want to appear to be a know-it-all, but when I get sick, I carry anti-bacterial hand cleaners around and whenever I touch anything I wipe it afterwards.  Even when there is no illness in the house, I am a germ-a-phobe!  Skip, on the other hand, only seems to be aware that he has germs when it is convenient for him to be.

"Hey, honey," I say.  "Can you get Mom's dinner started?"
"Nope.  Sorry.  Got germs.  Can't handle food."
A minute later he is pouring water for himself having handled the water pitcher, and fingered the refrigerator door.
"Hey, Honey, can you take the dog out?"
"Nope...don't want to touch the leash.  Germs."
A moment later he is petting the dog's fur.  He forgets that we ALL pet the dog.  She is carrying all of Skip's flu bugs right there on her soft fur coat.
I am the queen of Lysol.  I follow him around spraying and wiping surfaces.  Just when I think I have managed things well my mother reaches over and grabs his coffee cup thinking it is hers.
"NoooOOOOoooo!" I bellow.  I lunge for the cup and wrestle it from her fingers, then grab the wipes and scrub at her hands.

I am caregiving at its most difficult moments.  Mom doesn't understand that she cannot put anything in her mouth (especially now) unless I give it to her.
Skip doesn't understand that he must be extra careful and think about everything he touches.
Our dog Kira doesn't understand that she must not go to her Daddy to get petted and then go to Grandma for more attention.

Skip has been walking around groaning and moaning.  He has been describing each sneeze, each cough, each twinge of muscle aches.  He describes how much mucous has collected in his throat and how his head aches.  Last night he ran a fever and slept for hours and hours in response.  I looked at his listless body and worried that he might have to go to the emergency room.  Yet this morning he was nearly normal again.  It's a miracle!  I wonder if Mom and I will escape without catching his dreaded 'crud'.

Meanwhile,torn between my sick husband and my demented mother, I continue my care for Mom while seeing her gradual decline.  She is unresponsive to simple instructions.  I place a cup of hot tea on the table. I turn to butter her toast and tell her, "Mom, I am buttering your toast.  Please wait and don't drink your tea yet. It'll just be a minute."  Mom nods her head in response and then takes a big slurp of her tea.  I repeat my instruction and she says, "Oh.  Okay."  Then she takes another slurp.  She continues until it is finished at which point I hand her the toast and she asks if she can have some tea.  Why am I surprised by this?  It happens with regularity.

This past weekend we were babysitting our granddaughter and I decided to mix up a batch of modeling dough.  It is a simple form of playdough made with flour, salt and water.  Mom came to the counter thinking that it was time for lunch.  To divert her interest in food I told her what we were doing and showed her how to model a small dog or other creature out of the dough.  Giving her a lump of the 'clay' she took it and begin rubbing it on her arms.  I decided that perhaps she thought it was soap so I demonstrated how to roll it on the counter to form a ball.  I showed her how to fashion ears, nose and mouth, then turned away to help with my granddaughter's efforts.  When I turned back, Mom was eating the dough. Skip was the one who lunged across the counter acting as though she were eating poison and yelling "Spit it out!"  Unphased by his reaction she took another bite.  She seemed to resent his intervention.  Oh, but that is just the tip of the iceberg!  Mom has now entered the belligerent stage of her illness. She has become argumentative and petulant.  The other night, when Skip corrected her at the table telling her to stop slurping her stew (because she often inhales and chokes)  she very defensively told him that she wasn't slurping.  We both laughed and I told her that not only was she slurping but that it was so loud I could hear it from across the room.  She picked up her bowl of stew and yelled, "Well maybe I should just throw this at you instead of eating it!"
Wow!  What happened to my mother?  Where is the sweet woman who would never have dreamed of responding this way?  I actually struggled to keep my anger from surfacing.  I stepped back and saw the humor.  She was frustrated (as were we) and reacted as a child.  A moment later she left the table and sat down to watch TV.  I told Skip that she would return to the table as soon as she forgot  which would probably be in less than a minute.  I was right.  In fact, I asked her if she was ready to have dinner and she replied, "Oh?  Is it time for dinner?" Then she hurried to the table and sat down like she had never seen the bowl of stew before.

The incidents are plentiful. I laugh, I cry, I complain, I yell, and then I feel the compassion.  I am sad...so very, very sad.  But then, I know that these fleeting moments will pass and I cherish even the bad ones.  The memories, the good the bad the ugly are all we will have someday.  So, I keep swiping at the germs, run interference, endure her outbursts, collect the things that present a danger, taking defensive measures to keep Mom safe and healthy while her conscious world slowly disintegrates.

Thank Goodness my partner, my dear husband is feeling better and among the living today.  I can once again count on him to handle things when I am at my wit's end.  This is not easy and it is a lot more difficult when my guy has MAN flu.  It's a real thing.