An Empty Place at the Table

This is the week that will test me.  It will be our first Thanksgiving without my mother.  I am beginning to bake and cook now.  The aromas of cinnamon, apple and sugary pumpkin fill the air.  Suddenly I remember those moments when I stood at my mother's side and stirred bubbling saucepans filled with those same fragrant ingredients. She was in charge.  She lovingly taught me her secrets to timing and technique for the perfect Thanksgiving meal. I think back to holidays past and remember.  I think about the family and friends, the poignant moments, the special feeling, the excitement knowing that soon we would hear the doorbell ring and would gather with grandparents, cousins, aunts and uncles. They are all gone now save a few cousins who are thousands of miles away.

When it was time, when I had a family of my own, I began to make the Thanksgiving meal. Smiling through tears I recall my mother's comments, her teaching, her patience as I attempted my first Thanksgiving dinner.  My mother assisted, taking care not to intrude.  She had passed the baton. It was my turn to become the matriarch and she stood beside me as sous chef.  We invited new people to our table.  There were our own children now.  But always...always there was a place for parents. My mother and father graced our table for each of the holidays.  As the years passed (all too quickly) a place where my father once sat was empty.

My mother's role changed again.  She had Alzheimer's and as the disease progressed she was no longer my assistant. She became an appreciative guest, happy to sit at the table and proclaim that each dish was her favorite. All too soon, the shift occurred as my mother's Alzheimer's Disease erased her memories and decimated her thoughts.  Our final Thanksgiving was devoid of her ability to taste or enjoy the food on her plate.  She ate without tasting.  She sat without seeing.  She heard without understanding.  But still she was with us.  I could look across the table and see her smile, feel her presence, assured that she was still filling a place at the table.

But now, today, as I began to place things, counting out the dishes and the silverware, I shift everything over removing the space where my mother once sat.  I will miss her smile on Thursday.  I will miss filling her plate and helping her with her napkins. I will miss pouring a tiny taste of champagne for her.  I didn't know that it would hurt this much.  I didn't know that the emptiness would be so unbearable. My grief overshadows my memories momentarily and I struggle to regain them, to once again recall the laughter, the jokes, the cheer.

Through blinding tears, I shift my gaze to the window.  It is windy outside.  The dying leaves flutter to the ground and the autumnal colors create an artist's palate that is beautiful to behold.  Everything changes.  Seasons change, people change, lives change.  I am reminded of the beauty of cycles.  Birth, life, death, birth, life, death.  I witness it in the natural things.  Our magnificent oak tree stands as testament to nature's cycles.  Always...there is such joy as after the stark winter, the first leaves emerge: the promise of new life...the fulfillment of nature's promise.  Yes, my mother is gone but there is also a promise of new things, of new experiences, of new life on the horizon.  I dry my tears and return to my work.

I stir a saucepan full of cranberries and smile to myself as I remember my mother's suggestion to add a little more cinnamon. I am so thankful for all that she was and did for me: her little reminders, her teaching, her help and her support. There may be an empty seat at the table this year, but there will never, ever be an empty place in my heart.  It is full of her grace, her beauty, her love, and her presence.  It will be a happy Thanksgiving.

No Time for Tea

She asked me to join them for tea.  My mother and father were seated at the round table in their attached apartment, napkins folded neatly, two plates placed in front of them, two cups ready to be filled with the hot liquid, and a small plate of home-baked cookies placed in the center of the table.
My father was less than enthusiastic about drinking tea, but humored my mother with her daily ritual out of love and devotion to her.  I, however, didn't exhibit the same loyalty to the practice of stopping everything to imbibe in a cup of steaming hot Lipton (my mother's personal favorite.)

"No thanks, not today," I told her.  "I need to get back to work."  I held the borrowed cup of flour in my hand ready to go back downstairs...back to my own kitchen in my own home even though their apartment was merely a doorway away from my kitchen.  I needed to finish the cooking and get the dinner started before I returned to my work projects.  Within 15 minutes I would be back at work, talking to clients, answering emails, adding notes to my files.  There was no time for chit-chat with my parents, no time to spend idly sipping tea, tasting Mom's cookies, and hearing about how she thriftily used the stale grape nuts cereal to add extra crunch.

"Well at least take a taste of my new recipe," she insisted as she held out a cookie on a napkin.

Reluctantly, I took a small nibble already detecting that once again, she had left out a critical ingredient.   The expected sweet taste was missing.  The cookie tasted like a dog biscuit.
Mom was becoming forgetful.  Her baking skills were diminished by her inability to focus.  It was begining to happen too often and I knew that soon, she might have to give up cooking altogether.  For now, my father didn't seem to notice and the two of them continued to dine in their kitchen upstairs, contented with the bland fare, perhaps remembering that Mom used to be a great baker and convincing themselves that she still was.

"Well?" She asked expectantly. "What do you think?"

"They're good," I lied rushing back downstairs.  I knew that a plateful would be delivered to us within a few hours for us to 'enjoy' at our leisure.

I left the door ajar and could hear my parents talking quietly together.  They were planning what they would watch on TV that night.  I heard discussion about eating leftovers from the night before for dinner.  Mom asked if Dad had remembered to take his pills.  There was just simple, every day, unimportant conversation and yet it spoke of the normalcy, the simplicity, the harmony and the beauty of living together so many years.

That was about two months before my father passed away.  He had Alzheimer's, a bad heart, and prostate cancer.  We didn't know at the time that he was terminally ill.  We were told that he still had lots of time left.  He was still cogent, conversant, (almost) self-sufficient, pleasant to be around.  Oh there were tell-tale signs of course!  He began mixing colors...outragious blends of maroon and orange.  He lost things.  He forgot things.  He got confused.  But still he smiled, joked, and lovingly indulged my mother and her need to sweeten each day with her baked confections.

When I think back to those days, my care giving duties were minimal.  They took care of each other in ways I never could. Their 61 years of marriage were enough to sustain them even when they began to need supervision and more care than they could provide themselves. I used to laugh about their antics, their signs of aging that were both frustrating and endearing.  They were both hard of hearing, distracted, slowing in oh so many ways.  But they smiled and laughed, remained positve and upbeat.  They loved each other like no others and set a phenomenal example for all of us to follow and emulate.  To look back at those days, to remember how they were together and with us, I feel the bittersweet lump in my throat.  It isn't regret.  It isn't guilt.  It's something else.  Maybe just a yearning to experience them once more...just for a moment...to go back to that time when I innocently believed they would live forever.

The lost opportunity to sit with my parents, to enjoy 15 minutes of relaxing, talking, remembering, listening and experiencing the activity of doing nothing more than enjoying each other's company weighs more heavily on me today.  I had a dream...a message in my sleep that alerted me to the fact that I am allowing time to slip through my fingers.  How do I stop this?  How do I seize all opportunities to cherish each waking minute.  I thought about my time caring for my parents as a difficulty, a diversion from doing my own work and exploring my own interests.  Yet now I appreciate the richness of the experience. It allowed me the time to spend with them. It gave me irreplaceable memories.

It has been 17 years since my father passed away, and one month since my mother joined him. Today I am free to do as I please without the responsibilities of caregiving.  However, the joy of having them nearby, of reaching out to touch their arms, to trace the lines on their faces, to feel the warmth of their skin, lingers in my mind and heart.  They will always be a part of me. I just wish...OH how I wish I had a chance to sit and have just one more cup of tea at their little kitchen table, hear their laughter, see their smiles, and taste the wonderfully awful grapenuts cookies.

A Mother's Day in Passing

The phone call came around the time we were getting ready to go to bed. "Mrs. Bryan?" The caller identified himself as someone from my mother's hospice service.  "I am very sorry to tell you this..."
I didn't hear much after that.  It was over.  The long journey had come to an end. The finality of it hit me immediately.  My mother was gone and I found myself unable to control my voice or my tears.  I hung up quickly and sat stunned, eyes leaking alligator tears.  Skip, my sweet husband, hugged me and comforted me but he, too was needing comforting and we clutched at each other.  Moments ticked by as we processed the information.  A loved one dies. It happens to everyone.  'We were expecting it.  It is a relief that she is finally at peace.  She's in a better place.' You know? All of the things one says...all of the things we say.

Emotion was soon replaced with rational thought.  We must tell our children, our grandchildren, other family members.  There was no time to grieve.  I called our daughter and opened my mouth to speak the words but found only a small sob.  I gulped it down and tried to speak, hesitating, telling her only the most important words and then hanging up.  Our son, who was visiting from Colorado came downstairs with his girlfriend, Christina and they hugged me, sat with me, talked in quiet monotone telling me all of the things that one says at that moment.  It seemed like a long time but in retrospect I realize that the moment dragged on as it often does when one is overwhelmed. In reality it was maybe only twenty or thirty minutes.  Soon we were reminded of funny things, memories that made me laugh. "Remember how she tried to run over Christina's cat with her walker?"
"Yeah, she hated that cat." I smiled through my tears.

I thought about all of the stories, a lifetime of laughter.  I wrote so much about my mother.  I knew when I wrote, that I would someday re-read my words and gain solace when she was gone.  Now I thought of my writing and was so grateful I had done it, so happy I had pushed myself when my eyelids drooped and I wanted to go to bed.  This was so special now.  I had memories that were permanently chronicled.  In time we'd forget the little details, the small moments.  I felt comforted by the fact that I would have a reminder.  As raw and new as the emotions were just then, I was also reassured by this thought.

I became introspective and quiet, telling myself what I must do next.  I sent everyone to bed and began my announcement which I would send out via email and social media to everyone.  I dispatched my duties quickly without focusing on how bone weary I suddenly felt.  The sadness had crept into my body and had worked its way into every cell.  I stood up and turned off the lights not even aware that my cheeks were wet with tears. I longed for sleep, to dream of happier times, of the mother who used to be.  Instead, I walked outside and looked up toward the heavens.  She was gone. She lived a long, long life (one month shy of 100 years!) but it was as one small star in the sky when one considers eternity. Still, she left an indelible mark on our hearts.

The night was clear and warm.  The stars twinkled brightly.  There were still a few remnants of a meteor shower that had passed through and as I gazed upward a small meteor shot across the sky, it's light extinguished at the end of its journey and in that I saw what I needed to see.  My mother...the bright light filled with joy, smiles, exuberance, energy, kindness, sweetness, talent, creativity, knowledge, beauty, grace, wisdom, enthusiasm, devotion and most of all love, had streaked across the sky and her light was extinguished. It was gone.

I know, I know.  Humans are not forever.  Their names and graves are soon forgotten save a few who have historic recognition. The billions who are here today will be forgotten tomorrow.  And yet, there is something to remind us of our predecessors.  They toil and teach, expand, and build upon the very foundations that created humanity.  Mothers give birth and nurture their young creating a living legacy so that when their light is extinguished there are still others like stars in the sky...billions and billions of stars in the sky.

It has only been a few days to get used to being an orphan.  Now I must face the future as the elderly parent. There has always been the older generation in the past and even as they died off, my mother remained.  Now it is different. I am the older generation.  But it was just yesterday...no...we are all just a streak in the sky.

I look at the calendar and see that it is Mother's Day tomorrow.  I haven't thought about it.  How will I feel?  I pray that I will be a strong matriarch encouraging my children and grandchildren to carry the torch into the future as my light begins to dim.  I'm not ready yet but someday...someday.  For now, I think about the mother I had and I am grateful.  Tomorrow I will pay tribute to her in ways I cannot guess yet.  Perhaps we will tell stories and share memories. We will drink a toast to her life and shed a few tears.  When they leave...when they are all gone, I will permit myself to feel the emptiness of a Mother's Day without my mother.  But that will not last.  My thoughts do not reside in melancholy.  I look around and see her incredible influence on all of our lives, and celebrate that joyous time when her light flashed brightly...brilliantly.  It lit up the room and our lives in ways that I can never truly express. She will forever be my mother...my loving, beautiful mother.  Happy Mother's Day, Mom.

Never

NEVER

I used to think of it from time to time when I was young...

What if.  What if my mother and father died? What if I was all alone?

But those thoughts were cast adrift to the murky waters where I did not set sail.

"Don't worry," my parents told me.  "We won't die."

"Never!" I beseeched.

They wrapped their arms around me and I felt reassured...safe.

The parental lie we tell our children:  innocent, well-meaning.

When it happens, when we catch them in that lie we forget that they told us. 

We forgive them this untruth because we know that there was no other way...not then.

But now.  Just now, I remember.  You promised! 

You said, "We won't die!"

Now what? I feel the glimmer of the small betrayal.

My inner child remembers.

But...I reconcile and move on.

I am an adult.  I am independent, self-sufficient, secure.

My children asked.

My grandchildren ask now.

"Don't worry," I say.  "I will never leave you."

It is not a lie.  I will surround them with memories of me.  

I will give them love that will always remain.

In a hundred ways I will always be with them.

Their thoughts, their actions, their mannerisms,

Their very biology!

I realize how strong an imprint we make,

Even when we don't know it.

I look around and remember.

Here is a photo.  There is a gift.

I smile and see my father's expression in my face.

I blink and see a glimmer of my mother's eyes.
A favorite food, a flower, a painting.

My mother...my father. Everywhere.

And then I know that my parents told the truth.

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.
 

EXHAUSTIPATED

A nod to a fellow writer, Irene Francis Olson who shared a new word she learned after attending an Alzheimer's conference: 'EXHAUSTIPATED'.  The meaning: (as a caregiver to someone with dementia) When you are too tired to give a crap!  I laughed out loud when I read that.  It was so true.  Caregivers are continuously exhausted.  As far as how constipated they might be; well...I can't speak to that.  Suffice it to say, we don't have much time alone for personal care. Of course the double entendre didn't escape me.  I don't seem to care as much any more.  I am really, really tired.  But still I muscle through the days and look for the things I can laugh about.  It's really all we have left--humor.  Beneath it all there is, of course, love. The love is for the woman I used to know, and for the poor soul locked within the withering body and mind of the person who lives with us.

The challenging moments throughout the day create singular events that weave an interesting fabric.  It's...uh...shall I say, colorful?! They offer glimpses into how we do or do not cope depending upon our own current mental state.  When we lack sleep, Skip and I are less patient, more reactionary, and less likely to find the humor in something my mother says or does. Allow me to illustrate with a few examples:

First of all, I think that it might be noteworthy to share that our dog has put in her notice that if things don't change she might consider leaving home; this, over the fact that my mother has now taken a liking to Kira's dog bones.  As my mother scans the floor for fallen objects she picks up the rawhide bones and places them on her walker.  Evidently she has decided that they might make good snacks and so we have now caught Mom nibbling on the rawhide bones that Kira leaves around the family room. Good grief!  Now we have one more thing to supervise.  In the unending string of surprises and departures from normal, we have had to hide all edible and even inedible items that might be construed as potential food sources.  Oh it's not that we are starving Mom.  On the contrary; she is eating more now than ever...VORACIOUSLY!  She treats each meal as though it were her last with lip smacking, slurps, gulps, and industrious shoveling of every crumb.  I have even caught her licking the plate and her placemat.  If we leave the kitchen to escape the noise and bad manners, we run the risk of Mom helping herself to any food that is left out.  If left unattended Mom overeats.  She doesn't remember that she has eaten nor does she employ an inner switch that reduces her appetite. After overeating, Mom suffers from indigestion and we sometimes deal with the occasional eruptions of Mount Etna as Mom spews forth in vomitous explosions.  Our carpet has become one big stain. 

Moving on with my litany of complaints, Mom has taken to leaving her dirty tissues in various inappropriate locations.  I opened the cabinet door to extract a plate for lunch and found a used tissue sitting atop a clean dish.  I have found them in drawers, on top of dish towels, tucked into magazines and books, and always...ALWAYS on the countertop where I cook and prepare food.  Being the fussy germ-a-phobe that I am, I should own stock in Clorox Wipes. I certainly use enough of them to keep them in business.

All of this is enough justification for me to use a word such as exhaustipated, what with Skip and I having to clean up after her, do several loads of laundry each day, clean the floors, the carpet, cook, unclog the toilets, change her diapers, and so on.  But the thing that makes me cringe the most is how my mother's attitude has changed.  She is downright combative when we confront her with her misdeeds. 

Today, I caught Skip telling Mom that leaving her used tissue on the kitchen counter was as bad as pooping on the counter. (He does that for shock value but the result is often a fiery exchange.) Mom took great umbrage as she told him, "You're a disgusting person! 
I would never do that!"  Skip argued that she left her used, wet tissues on the counter all the time.  Of course it was futile to tell her.  Mom insisted that she NEVER did that.  Then, as the argument continued and escalated, Mom began to threaten him saying that she was going to kill him.  (Probably by throwing a wet tissue at him.)  Almost everything we say to Mom these days is fodder for dispute.

"Hey Mom, it's time for bed," we announce.
"No it's not."
"Yes it is."
"Ah baloney!" she huffs in response.  "I'll decide when I want to go to bed."

We have tried to walk away from engaging in any disputes but sometimes our inner child comes out.  That's when we do things like we did this evening. "Okay.  If you don't want to go to bed we'll just leave you in here by yourself."  Then we turned off the lights in the family room and left her sitting in the dark.  (We stayed nearby to observe her.)  After brooding for a while she forgot the argument and was quite ready to toddle off to bed. It doesn't always work like that though.  There was one night that was so bad when I was trying to get her ready for bed that I finally said, "Mom, I am trying to help you.  I am your daughter and I care for you.  But if you continue to act mean and angry..." (she was shoving me and calling me names, telling me that I was terrible to take her clothes off of her and how if her sister were here she's take care of me) "then I will just leave you here and let you stay dressed.  You can put yourself to bed."  Then I turned off the lights and walked out.  She began screaming all kinds of horrible things.  She threw a complete temper tantrum.  It was awful and yet somehow laughable.  I was deeply shaken but was also somewhat amused by the depths to which her behavior had sunk.  You see, Mom was always a sweet woman.  She was happy and loving.  I very seldom saw her cross about anything. She was sensitive and caring. Her nature was to be hurt by others' misspoken comments rather than to hurt others.  These days were so different, with behaviors so unexpected, so unusual, so bizarre.  Living with Mom is rather like riding through a carnival fun house.  There is always a little apprehension over what we might encounter around each turn.  I awaken each morning with dread, my stomach doing flip flops. I wonder what the day will bring.  What new assault will she fire at us? What misguided accusation will she level?  Will there be another mess to clean up in her room? (Most certainly!)  Will she allow me to bathe her? (Probably not without a fight.)  Will she balk about sitting on the chair lift, argue that I am trying to kill her as I take off her nightgown, grab her socks and hide them in her walker as I turn to throw away the wet diapers? Will she remove her pants that I have just put on her, try to put her nightgown back on or pull at the sheets and covers in an attempt to wrap herself up?  She seems to have a million hands and the strength of twenty weight lifters.  I can't subdue her and I can't deal with her but still I must.  I am...oh yes, I am most definitely EXHAUSTIPATED!

Hurricane Madness or Gone With the Wind

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

"Are you okay?" friends texted.

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

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

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

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

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

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

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

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

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

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

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

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

'Naked and Angry' Meets 'Alert and Afraid'

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

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

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

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

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

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

GRAMA-RANG.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Blank Screens and Striptease Sundays

 

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

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

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

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

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

"Mom?  Can you answer me please?"

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

(No answer.  Not even a twitch.)

I could feel the impatience welling up inside.

"Mom!  MOM!  MOM!  M-O-M!!!!"

Still nothing.

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

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

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

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

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

"It's okay," she answered without enthusiasm

.

"What's it about?"

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

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

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

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

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

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

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

"It's too hot!  Stop it!!!"

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

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

"I don't have to."

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

"Why not?" 

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