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.

Recovery

Yesterday, someone told me that I looked and even sounded different.
"Really?" I asked incredulously.
"Yes," my friend replied.  "It's like  you're lighter. You're facial expression has changed and your voice is bouncier."

I thought about it for a minute.  Had I been weighted down by my caregiving duties to the point that it had actually changed me; I who told others that the only way to care for our loved ones was to first care for ourselves; I who spoke publicly about how to nurture ourselves through stress-reducing activities and who fervently reminded others that they should be vigilant about their own mental state, had overlooked mine?

I retreated to my car and took a mental inventory.  I felt the same.  I was still caring for my mother albeit long distance.  I was still running to the nursing home to check on her, to visit, to make sure that the nurses were doing their job.  But there was something different.  That stress--that ENORMOUS responsibility had been lifted from my shoulders.  Over the past few weeks, Skip and I had managed to actually have a couple of date nights and even a spur-of-the-moment drive to get milkshakes. (Something that we considered reckless and wild.)

I love the sense of wild abandon I feel when I announce, "I'm going to run an errand." I don't have to check if it is okay with Skip that he has to stop doing whatever it is that he is doing to go into the family room and sit with Mom.  Suddenly those little things, the things we used to take for granted, the simple freedoms we had lost during the four years we cared for my mother in our home, are restored but now with a new-found appreciation.  Can I go to the grocery store? Yes...YES I CAN!  Can I sleep until 9 AM?  Yes.  Can I be gone until after dinner without worrying about a schedule or food preparation? Yes.  YES. YES!!!

Before you think me too jubilant, let me hastily remind the reader that my heart is still heavy as I worry about my mother every day when I awaken and before I fall asleep.  Being the control fanatic that I am it is extremely difficult to face the fact the my mother's well-being is in the hands of others now.  I dread each phone call hoping and praying that it isn't a nurse calling to tell me that my mother has fallen, is injured, isn't eating, has misbehaved, is sick, or has gone missing.

I think about my visits to see my mother. I am frightened.  Old memories flood into my consciousness...childhood memories of visiting my grandmother in that horrible nursing home. I was so fearful of the old people.  They reached out to me and touched me as I walked by--the wordless, wrinkled, wild-eyed or zombie-eyed strangers who followed me down the halls.  Here too they sit in the halls and await my approach. I avert my eyes when I walk into the building to see Mom, careful not to look into the blank and vacant faces of other patients.  I find my mother slumped on a bench and for a moment I only see a frail and tiny woman with deep wrinkles and wild hair. When I touch her shoulder she opens her eyes and smiles the smile she reserves for strangers. There is no recognition and my heart shatters into a million pieces.

I notice that her cheeks are sunken and her toothpick ankles do not look like they could support her.  It has only been a few days!  How could she have changed so much?!  Perhaps I didn't notice before.Suddenly I reach out to her wanting to hold this nearly helpless human and to protect her, to love her, to care for her.  I forget my fears as I stroke her head, her back and her arms.

Mom has three months to go before she is 100 years old.  I never thought that she would make it to 100 but now I am cheering for her.  "Please dear God, let her remain healthy and safe," I beseech.  Why do I pray for this milestone when just a few weeks ago I cried and carried on that this was no way to live, that she wouldn't have wanted to be this way?  Before...just a few weeks ago I cried over the unruly appearance, the lack of grooming. Now, I am amused by clothes that the nurses dress her in. They are clothes that don't belong to her.  I resign myself to the fact that she is wearing someone else's socks, that her hair is uncombed and that she shuffles around like all of the residents. Still, I sadden over her purple mottled skin that tells me her heart isn't pumping strongly enough to oxygenate her extremities.  I worry over each bruise.  I fret over her weight loss.  "It's out of my control," I remind myself.  Can others do it better (this caregiving) than I? 

Another few days go by.  I visit with heart in mouth until I see her sitting alone on a bench...the oldest resident, the ancient wizened face looks up and smiles that same sweet smile she has always smiled from the time I was too young to remember.  Only now it is not about anything in particular and maybe everything at once.  Maybe it isn't so bad after all.  Maybe she is okay.

I watch two old ladies follow each other from room to room weaving their way in and out of the doorways like a two-car choo-choo train.  They shuffle mindlessly nearly colliding with the man who comes out of one room and enters another.  There is perpetual motion and the nurses follow along guiding the patients out of the rooms.  "No Miss Emma, this isn't your room.  Mr. Smith, let's go this way," they patiently shift their trajectory to another doorway. I watch and observe them stopped at a wall like the battery-operated robot toys that move until there is an obstruction. They bump into it over and over until the nurse turns them once again.  I am fascinated by this and watch with a kind of sick curiosity no longer experiencing the shock (and yes, even a little revulsion).  I begin to find the humor in this.  I refer to this sad drama in more comforting terms and laugh at the antics.  One patient wanders from room to room picking up others' personal items and leaving them in other rooms.  It is now clear to me why my mother is now sitting in a garish pair of fuchsia and orange pants with yellow striped socks and a blue top none of which belong to her.  They were in her room and so they become hers for the moment. They were gifts from the shufflers, the choo-choo trains, the wanderers, the hunters and gatherers.

As I sit with Mom who is silent but awake on her bench, a man walks up to her and she looks at him smiling coquettishly.  He touches her knee and she signals for him to draw nearer.  The nurse tells me that she is going to kiss him if he comes closer.  He makes no move but then as I get up to leave, he quickly grabs my seat next to her and as I turn to say goodbye I see the two of them smiling at each other.  They are perhaps joined in their silence and somehow content with each other's company.  My need and desire for control evaporates in a bittersweet moment as the door closes and locks behind me.  My mother is safe for now.  She is cared for.  I am free to go home and make dinner for my waiting husband who deserves my full attention and an unburdened evening.

There is some sort of comfort in all of this.  My sadness is healthy.  There is symmetry in my emotions.  Obligation, stress, discomfort, worry are balanced with a sense of letting go, of relief, and a rediscovery of who I was before I was a caregiver. I see that this is the circle of life--my circle of life and I revel in my recovery.

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.