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?"

Dom P, Ancestry, and Me

They were gathered in the kitchen, each with a special task.  I was told to sit outside on our porch and await my birthday surprise.  Yes, this was my birthday weekend.  I was so happy to have the family here even though I was stressed and tired.  Caring for my mother had worn me out. More than anything, I just wanted to sleep undisturbed and unfettered by my caregiving duties.  While I waited, entertained by my two delightful granddaughters, Mom wandered in and out, banging her walker against the door jam and table.  She was hungry.  Dinner was taking too long to prepare.  My son mixed a cocktail for me...the best Long Island Iced Tea ever!  Mom eyed my drink jealously.  "Oh no," I thought.  "You mustn't have this."  I sneaked inside avoiding the bustle of activity as plates and forks clanked on the counter, buzzers sounded, pots bubbled, and meats sizzled.  My daughter and son-in-law were busy elves preparing a feast of flavors in the kitchen.  I found some rum and Coke and mixed a drink for Mom, careful to go heavy on the Coke and light on the rum.  My son and his girlfriend were encouraging me to add more rum but I didn't think it wise to get someone with Alzheimer's tipsy. I laughed to myself devilishly thinking "What difference would it make?"
"This is delicious," she announced as she gripped the glass in both hands and downed the drink with a rare gusto.  Knowing how difficult it was to keep Mom hydrated, I mused that this was obviously the way to get her to drink more fluids.  Wait...she was drinking on an empty stomach!  The Responsible Me kicked in; "Have some chips," I suggested, hoping that they would absorb the alcohol.

When at last the meal was ready, my daughter appeared at the door smiling broadly.  She and the rest of the family had pulled it off.  They had brought a birthday to me since Skip and I couldn't do much in the way of celebrating my birthday elsewhere; not with my mother's condition.  I had said it.  I told them that we couldn't leave Mom alone now.  No...not now.  She was too confused, too easily agitated. Surprisingly, she proved me wrong.  She was in fine form.  She remembered who we were, little facts about the family, and even managed some quick repartee.  Was it the rum?  Maybe it was helping.

We dined on wonderful food as we crowded around the table in merriment and celebration.  Then came the birthday toast.  A bottle of Dom Perignon (provided by my son-in-law and daughter) was brought to the table.  Okay, I've got to admit that this was really special.  I waited with growing excitement as they popped the cork and handed it to Skip to pour. I watched the bubbles (the tiniest ones) floating to the top of the liquid and remembered that the finer the Champagne the tinier the bubbles.  "Savor this," I reminded myself. Skip lifted his glass to wish me a happy birthday in a clever and loving toast.  We all sipped from the fine Champagne.  I took a small taste feeling the sparkling liquid gold tickle my throat and tried to decide if it lived up to its reputation. Yes, I decided.  It definitely did!  It wasn't so much the flavor but the aftertaste.  There was a certain smoothness, an elegance of flavor, a quiet assertion that fine grapes and warm sun had joined together to make an intoxicating refreshment that was to be relished. 
Even Mom was given a small glass."This is strong!" she remarked.  "It's gone right down to my garters," she quipped and then beamed as we all laughed boisterously at her joke. It was a rare moment to cherish -- a 98 year old still able to engage in the merriment.

Cake, Champagne, flowers, and then presents filled the night.  My daughter announced that we would be attending the ballet. Our son and his girlfriend gave me a kit to check my ancestry with a quick saliva test -- something that was non-existent when I was born. (My how times have changed!)  I was thrilled with the prospect of finding out about my ancestry even though I was already certain that I was a confusion of myriad countries and races.  

The party had moved outside to the fire pit.  The granddaughters had been promised this traditional end to our cooler evenings but slowly they began to hang their heads sleepily. With Mom tucked in for the night, I returned to the dwindling numbers around the fire.  I was determined to party into the wee hours but I too became drowsy.  I struggled to make these fading moments last for just a little while longer. The light-hearted chatter almost masked the depth of emotion I felt.  I looked at their faces...each of them so special, so dear.  I listened to their voices; I watched the firelight  reflected in their eyes, and wanted to capture each smiling face in a memory.  This night, this celebration, this shared love; how special and yet how fleeting it felt to me.  I wanted to hug each of them to my heart and cling fiercely.  I suppose when one reaches a certain age sentimentality dominates all family gatherings.  Our numbers are not so large, and we are separated by miles but it is always the same.  We gather for occasions and enjoy.  We laugh, we talk, we share, we support one another.  This enduring bond of love is ever-so-important to me now more than ever.  I am so deeply embroiled in caregiving and finding that stress has become a way of life; and yet I know that my family will rally round and help when help is needed.  It is the best birthday gift of all! 

When the last dish was dried, the last glass placed back in the cabinet, the last surface freed of crumbs and spills, all without my assistance, I thanked everyone and went to bed.  I thought that I would go right to sleep but instead I reviewed the day, the comments, the moments.  Was it possible that my heart was actually glowing?  It certainly felt that way.  Then I remembered the Ancestry Kit.  What would it reveal?  I already knew that it would report in a clinical fashion and would satisfy the question of familial backgrounds but it would not tell me what my ancestors thought.  It would not show how they felt about each other, what emotions were when they gathered together, how they laughed and cried together.  The births, the illnesses, the inevitable passings of one generation after another; this would be understood but not explained; yet here I was, the embodiment of all of this history, all this love.  Now, on my birthday I reviewed this and smiled with a deep satisfaction. They slept -- the whole family...the eldest to the youngest, oblivious to my overwhelming gratitude and affection.