Wrapping it Up

'Some images just can't be erased...or can they?'  

That's  what I wrote on the gift tag attached to my husband's Christmas present.  Inside the box was a pair of sunglasses with holiday-themed pencil erasers glued to them.  Skip knew immediately what it meant.
"Oh how perfect," he exclaimed with a chuckle. Then he put them on and we all had a good laugh; all of us except Mom of course.  She remained oblivious to her surroundings and the conversation.  Mom sat off to the side working to unwrap a Christmas mug.  The tissue paper was nearly off when she began re-wrapping and placing the mug back in the gift bag.
"What did you get?" I asked her.
"I don't know," she answered placing the bag back on the floor beside her.
"Well aren't you planning to unwrap it?" I questioned encouragingly.
"Yes," she answered looking at the wrapped gift like she had not seen it before.  Then she lifted the bag, read the name tag and began the process all over again.  Halfway through (before she removed the protective tissue to uncover the mug) she began stuffing it back in the gift bag, once again placing it on the floor.  It took three attempts before I stepped in to assist her.  Together we unwrapped the mug.  She looked at it, took it in her hands, and without comment placed it back in the bag.
My jaw dropped open in disbelief.  I fought back the growing frustration and impatience.  "Do you like it?" I asked.
"What?"
"Your gift.  Do you like it?" I repeated.
"Yes," she answered without enthusiasm.
I could tell she didn't know what 'IT' was.  I asked her and she seemed confused.  She had forgotten what she had opened.  I lifted the mug from the bag to show her.
"Oh!  It's a mug," she told me.  It was as if she were seeing it for the first time.
I shook my head and went back to the gift opening.  It was futile to get my mother to pay attention, to react, and to understand what was happening around her.  There was simply no way to engage her.
Skip was still amused about the sunglasses remembering the event that triggered the creation of this gift.  The reader might recall my earlier account of how I had protected Skip from seeing...um... 'certain things'  until a few weeks earlier when he had to step in and help Mom get dressed while I was lying flat on my back with a painful pinched sacral nerve.  At the time I felt horrible about Skip  seeing my mother undressed, and while, in retrospect,  I thought it was funny, I wasn't sure that Skip found  it  humorous.  I was glad to see that he could now laugh as we sat opening our Christmas presents.

When we finished and cleaned away the assortment of ribbons and torn bits of paper, I looked over at my mother.  She was tying a ribbon to her walker.  She knotted and twisted it, twirled it around the handle and untied it.  Over and over, she fiddled with the ribbon that was soon to provide her with hours of fun.  At last!  This was a present she enjoyed.  The soaps, candles, mug, the assorted small gifts she might use meant nothing to her.  In fact, she didn't know it was Christmas.

I went to work making our holiday dinner.  I set the table in a festive display with special Christmas colors and my beautiful holiday china.  We sat down at the table and tried to engage Mom in conversation but her aphasia limited her words.  Her palate limited her enjoyment of the meal.  Her diminished understanding of words limited her enjoyment of the table talk. After several attempts to draw her in, I gave up.  Gone was the woman who relished the specialty foods that used to elicit her exclamations of approval; gone was the woman who laughed and joked; gone was the woman who was more excited about Christmas than the children.

That night when the dishes were put away, and the remnants of Christmas celebration were removed, I thought about how this Christmas was probably Mom's last one.  (Of course, I thought that same thing last year too and was happily surprised that she was still with us.)  This year though, I evaluated the situation and decided that in fact, Mom was not with us.  In essence, she had celebrated her last Christmas about four years ago.  Looking back I realized that since then she has not really appreciated the holiday, didn't remember any of the things that happened, could not report where we went, who we saw, what was said, what gifts were received.  It was heartbreaking!  How could we have known then, on that visit to our daughter and son-in-law's home that she would forget everything from that point on; that she would never again be the person she was that day; that she would continue going downhill...sinking slowly into oblivion?  My thoughts made me so sad that the magic of the day was soon replaced with an overwhelming gloom.  I began to think about all of the negative things that we experienced as we cared for Mom.  I remembered her outbursts, her frowns, her compulsive behavior, her lack of manners.  It was easy to become depressed and bitter.

I walked into the hallway to turn off the Christmas lights when a thought occurred to me.  Christmas, to me was about love.  I turned to look at the tree thinking about how each special ornament symbolized the love of friends and family.  I sought out those ornaments that had been given to us by my parents.  I smiled as I remembered the many years when Mom and Dad joined us to share in the joy and togetherness that we experienced as a family opening gifts, laughing, and loving. So many years of memories...such wonderful recollections!  There...right in the middle of the tree was the ornament of the cute little white-haired couple snuggled together in a green and red felt bed.  It represented  Mom and Dad.  Oh...and there was the fisherman ornament. (Dad loved to fish).  There was the ornament of a boy and girl that they bought for us when our children were small.  It was engraved with our children's names.  Suddenly I was awash in sentimentality.  I was remembering so much about the family times, the good times, the years and years that I thought I had forgotten.  I especially thought about my father who was forever clowning around much to our enjoyment. My wonderful parents were always with us, always smiling their sweet smiles, joking, playful, filled with mirth, merriment, and most of all, radiating love.  I missed Dad and yet I knew that the memory of him would never fade away, so in a sense he was there with me just at that moment. I heard his voice, felt his warmth, smelled his cologne.

As I reminisced, I found myself growing happier.  I thought about how we live our lives with all of the good times and some bad times too.  But ultimately our memories seem to reflect more of the good times than the bad -- at least they did for me. I took one last look at the tree filled with those reminders and then turned off the lights.  The magic of Christmases past hung in the air as I tiptoed off to bed.  As I closed my eyes I thought once again about Mom and her gradual detachment from the family festivities.  Then I thought about the fact that even though she was not all here, she would always be with us in our hearts.  Now was not the time to bemoan her fading away but to celebrate the years she was fully present. My last thought before I drifted off to sleep was of my mother painstakingly sewing felt animal ornaments for our tree when our son and daughter were young.  Now they hung on our daughter's tree in their children's playroom; and so, the memories were alive...her presence continuing on into a new generation.

In the words of Dylan Thomas: 'Do Not Go Gentle...'

I cannot believe that it is December again.  I am not ready for another holiday season and yet, before I know it, it will be over.  I feel like if I blink it will be Spring.  It speaks to the importance I MUST place on each moment.  I have allowed the moments to slip by.  How else can I explain this year?  The days...often filled with frustration, stress, worry and exhaustion have raced by.  Wasn't it Easter just yesterday?  Wasn't I celebrating the arrival of 2017 a moment ago?

Ah, sadly, my mother is slipping away all too quickly.  How do I slow the days down?  How do I hold her last moments (so infrequent) of lucid thought?  I looked back to a year ago.  I wrote about the hectic days, the craziness that precedes Christmas.  At that time my mother was receiving hospice care.  We thought that she was experiencing her last days.  Suddenly, she bounced back -- a full recovery!  It was a Christmas miracle of sorts.  I worried that at any moment she could take a turn for the worse and lapse back into the comatose state she was in that prompted a call to hospice in the first place. But days and weeks turned into months.  My productivity slackened as I spent more time with her, watching, caring, administering, but mostly just sitting.  Her interest in everything had waned.  Her communication was minimized and her comprehension was severely limited. So why didn't the days drag?  Why is it that the less I did the faster the days seemed to fly by?  Isn't that counter-intuitive?

I have gone over and over this past year's events; the conversations with friends, the dinners with family members, the laughter and good times, the deep discussions, and playful moments with my spouse.  I thought about the entertaining we did, the tea parties, the small dinner parties, the funny moments with Mom and the not-so-funny moments that Alzheimer's brings as well.  None of it...NONE of it was more than a moment ago, I tell you.  What a nasty trick the Universe plays on us.  The older we get and the less time we have, the less time it takes to get there.  I am suddenly reminded of the poem by Dylan Thomas which made no sense to me when I was a young girl studying famous poets. The lines resonate with me now: 'Do not go gentle into that good night. Rage, rage against the dying of the light.'  Well, I am raging indeed!  I am raging for my mother who cannot speak to it herself.  I am raging for myself as I witness the limited time ticking away.  I am raging for all of those people who helplessly witness lost time with loved ones and wish that they could harness the minutes to hold them for just a while longer.  

Tonight as I go to sleep I will focus on the minutes.  I will treasure each second, each breath with a new-found appreciation.  And tomorrow, as I awaken to a new day, I will promise myself to enjoy the time that I sit with my mother doing absolutely nothing but sharing space and air together.  She may not think about it, nor remember it, but I will do so for both of us.  I will look at her gnarled arthritic hands, her face lined with years of expression, from love, disapproval, smiles and frowns, joy and sorrow. I will look at her silky white hair lying limp and thin on her pink scalp.  I will apply lotion to her wrinkled skin hanging with uncertain direction off of delicate bones. I will marvel that a person of 98 years is still able to be as mobile, as agile while she lifts her legs to assist me in putting on her socks.  Her questions, her comments, as limited as they may be will register in my brain and store in my memory.  "Who am I?" I will ask her.  She will answer one of her many ways.  "Are you my neighbor?  Are you my mother? Are you my friend?"  I will smile. "Yes, I am," I will agree to whatever she chooses to define me.  I will take it in, all of it, because it will be a day from now or a year from now that I will look back and rage against the diminishing moments..."Where did the time go?"

The Last Christmas Cookie

The Last Christmas Cookie

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

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

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

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

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

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

"I know," she answered a little indignantly. 

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

Deck the Halls

Deck the Halls

With Mom and All 

 

I thought of skipping the Christmas craziness this year.  I thought that it would be too much for me to handle.   

A month ago I remember crying sadly at the thought that I would forego the joy that the sight of a decorated house brings to me.  I thought that I would skip the annual event we always hold at our home.  This year would be different.  This year, the halls would not be decked, the stockings would not be hung, the packages would not be wrapped, the cookies would not be baked.  No cards, no letters, no phone calls, no parties.  I looked around.  There was so much to do, so much to think about, so much effort and energy to expend just to bring this tradition to life. "I'm getting too old for this!" I told myself.  I can't handle another thing; not with all that I have to do caring for my mother.  I had almost convinced myself that I was right not to enjoy the spirit of the Season.  But then...  Skip said something to me about the tree, the decorations, the family gathering, the holiday guests and entertaining that we do.  He wasn't going to push it and I knew that he would support whatever decision I made regarding the next few weeks.  I looked within myself.  There was a sadness.  We would be missing so much.  We had already sacrificed and missed out.  I looked at my mother who knew nothing of what time of year it was.  I reminded her that it was the Holiday Season.  She nodded her head without comprehension or memory of Christmases past.  My sadness grew into depression.  The emptiness deepened.  The darkness was about to swallow me up.  I was resigned.  My misery was all-consuming.  I rationalized: being a care giver is draining both physically and emotionally.  It would be easily understood if I explained to everyone that this year...just this once I would not be able to 'do' Christmas, that our annual family party could not take place, that I couldn't bake the Christmas bread, that I wouldn't make the sausage dip or the pine cone cheese balls.  They would kindly accept that the home would be undecorated and that I would not have time to shop for presents. Yes, they would accept it, but...  

I began to realize that I couldn't... I wouldn't accept it myself!

I made the decision.  

"Let the lights be hung, the wreath be placed on the door, the candles lit, the presents wrapped, the cards written, the cookies baked, the tree trimmed.  Let the ornaments, the decorations, the special reminders of the season be placed around each room.  Yes!  Deck the Halls."  Immediately my mood changed.  I was excited, pleased, and exhilarated.  Suddenly I felt youthful and energetic. 

It was the day after Thanksgiving.  I sat down in front of my computer and shopped for Christmas gifts.  Immediately I felt better.  I baked some cookies and called a friend who offered to help us decorate the house.  Arrangements were made.  Within a week Christmas preparations were underway and the house was brimming with Christmas spirit.  What a joy!  

Now with just two weeks to go before Christmas day, I make lists and check off the things I have done and the things left to do.  It takes more organizations than usual.  There is no time to spare.  My mother requires more and more of my time as I watch her closely, trying to protect and run interference. She paces like a caged animal, fingering touching, tasting everything.  I stop her from tumbling down a step as she is oblivious to height changes. I catch her before she touches the hot pot, trips over the dog bone, runs into the table with her walker.  I admonish her for blowing her nose in her shawl or for throwing her panties in the trash can. Safety, cleanliness, humanness...they are things I strive to preserve at great emotional and physical sacrifice and cost.  I am torn between decorating the cookies, and watching Mom, providing her with a distraction, an activity, something that will fill the time.  I compromise.  I will forego the special chocolate bars that everyone expects me to bake.  I will not wrap the packages with elaborate decorations and will use more gift bags.  But there will be no compromise on the traditions -- family traditions will be celebrated regardless.  This is my treat to me, for me, and by me.  

I put Mom to bed singing some Christmas carols as I help her get undressed.  She sings along smiling broadly.  It has been a long exhausting day but as I close her door my spirit is lighter.  I walk back downstairs, pour myself a nightcap and sit down in front of the Christmas tree.  A calmness spreads over me.  There is no negativity.  There is no darkness, sadness, despair.  For a minute I am a child thrilling at the twinkling lights.  I forget everything I have left to do to simply enjoy the moment and the lights...and the joy...and the season...and the knowledge that we are all together.  It is the magic of the season; and it heals, cures, reassures, stabilizes, and reminds me of just how grateful I am to have this time, this moment, this love, this joy, this life.