Sunday, February 18, 2018

Jury Duty or Jail?

You know how you get things in the mail that require your attention but you just don't have the time to deal with it at that moment; so you stack it on the desk to attend to later?  Well, for me, pretty soon (and much to my dismay) those bits of mail build up to a large stack and I begin to feel overwhelmed.  Yesterday I began to wade through the most pressing of these 'to do's' and whittled down the pile.  I registered for classes, RSVP'd to events, and sent payments that were needed on bills that were almost due.  At the bottom of the pile, I found the piece of mail that came last week.  At the time I remember shaking my head, laughing, and saying to myself, "I have got to write a full explanation on this form; but I don't have time right now."  Today, I finally got around to writing it.  I'd like to add that I have been accused of being irreverent and sarcastic in my writing.  Sarcasm is my form of humor and I don't want the reader to think that I am actually serious...okay?  With that disclaimer, I hope you will enjoy the letter I sent to the Clerk of the Superior Court:

To Clerk of Superior Court:

We received the Jury Summons for my mother last week and my first reaction was laughter.  I had to share this with you since clearly, she will be excused from jury duty; but I felt a NEED to explain further.  Whoever reads this, I hope that you laugh along with me.

My mother is 98 1/2 years old.  I would have to say first and foremost, at that age one would hope that she is not driving!  That alone is enough of a reason not to report for jury duty unless of course there were some sort of transportation that would take her to and from the courthouse.  The fact that there was (in bold numbers) a note of her date of birth on the upper right hand corner of the summons gave me a moment's pause, since there are probably other potential jurors of a certain advanced age being summoned to serve who may not be of sound mind.  Why oh why would these elderly folks be summoned to serve as jurors?

That brings me to my second point: statistics show that approximately one out of every two people in America today who are over the age of 85 years old have Alzheimer's or some other form of dementia.  So I can safely assume that when a summons goes out to an individual over 85, the person is most likely not capable of serving on a jury, nor would we want them to!  My mother is no exception.  She has advanced Alzheimer's. I am caring for her full time; and that brings me to my third point: the stress and frustration, the exhaustion and the mixed emotions of a caregiver providing care for someone with cognitive dysfunction is extremely high.  There are days when I dream of respite...somewhere I could send my mother to give me a break.  Unfortunately, most respite care is not affordable for us right now and so day after day, I must maintain a cheerful disposition in spite of the overwhelmingly sad situation.   

At the risk of sounding a bit irreverent, I began to muse humorously and with an ample amount of sarcasm.  (I have found that humor is a great coping mechanism.)  How tempting it was when I saw this summons to say to myself with a wry smile, "Hmmm...maybe I will drive Mom to jury duty every day and let them babysit her for a week or two. "  Then I had another darkly comical thought.  "If I don't reply on Mom's behalf, I wonder what would happen?  Perhaps they would send someone for her.  Maybe they would cart her off to jail for ignoring her civic duty. "  I could see myself waiving good-bye calling to the Sheriff  "My mother goes to bed at 8 PM.  Oh, and don't forget, she takes her tea with sweetener and a cookie at 3:00!"  That made me laugh out loud and so I want to thank you for indirectly providing a little levity in my otherwise difficult day.  I truly wish I could share this summons with my mother who would have also had a good laugh over the situation if she still had a healthy mind.  (She always found humor in irony.) 

Wednesday, January 10, 2018

A Bitter Pill to Swallow

I have not been talking about it...I prefer not to think about it. My mother's condition has been steadily deteriorating and while I have written about the myriad incidents that send me into a tailspin, I have spared the reader the ugly details.  There are things about which one does not (politely) write or discuss.  I edit my writing and my conversation.  I even try to edit my memories.  I search for the humor and when it doesn't present itself I try to erase the memory.  It is too ugly, too difficult.  It is the most bitter  pill to swallow.  Memory loss and lack of cognitive ability, lack of recognition, lack of understanding is all part of the process -- the brain-killing disease that has stolen my mother from me.  I have accepted this as our fate.  I have strengthened myself and grown as a result.  I have done things I never thought I could do. I have dealt with certain tasks in order to spare others as well as to protect my mother's last shred of modesty.  I would like to think that part of her, deep down in her being, in her soul, knows that I am doing this for the woman she used to be.  I still respect that person who had dignity, who had manners, standards and decorum,  modesty, cared for her appearance and never ever left the house without lipstick on and every hair in place.  She was the mother who wanted to raise her daughter to do the same and so she scraped together enough money to send me to finishing school to learn etiquette, comportment, elocution,  and any number of other skills long since forgotten.  For my mother, it was important. So, how can I abandon her now as she has forgotten these practices herself?  

Within the past several months many of my friends have lost loved ones.  It is always difficult news, but particularly right now as I prepare for my own mother's inevitable demise. I think that it is not too long from now.  A dear friend whose mother had dementia and was closely  following the process in my mother told me that since her mother was about three years behind my mother she would learn from me.  We talked often and shared stories.  This past week her mother passed away and when I spoke with my friend offering comforting words, she told me that she had thought that she would be the one (first) to be offering comforting words to me.  How could this be?  How is it that my mother is still hanging on?, I am not wishing her gone!  I am not complaining; not really.  Except...well, I wonder about the quality of life, the degradation, the humiliation of the body giving out, losing control, no longer a useful vessel but a trap -- imprisoning the eternal soul.  I want to protect that beautiful and loving part of her -- that part that saw a need to send me to finishing school.  Instead I am dealing with reality, with the ugliness that dementia creates.  In an infant, these things are not considered ugly but in an adult it is so different.  When an infant spits up we tsk, tsk and swipe at the mouth casually.  In an adult we are repulsed, avert our eyes and pray that someone else will clean up the mess. Human excrement is a necessary mess to clean in a baby but disgusting in the elderly. Bathing a little one is a joy but a detestable job with an old person.  Why?  Why are our standards so different?  I grapple with this knowing that logic dictates that there should be no difference but finding that my emotions disagree.  The things I must do, I do; but, yes,  it is indeed a bitter pill to swallow.

Wednesday, December 27, 2017

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.
"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 '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.

Wednesday, December 20, 2017

Christmas Memories

I was watching one of the old movies that was the standard go-to for Christmas and found myself misty-eyed at the end.  The saccharine sentimentality got to me and I asked myself, "What is it about this time of year that makes me so emotional? "  As I thought about it, I realized that all of the best recollections from childhood were centered around Christmas.  It was the time of year when both of my parents stopped working hard and took time with us.  We  (my brother and I)  were more important than work, or cooking, or cleaning, appointments, and meetings.  We were the center of their attention.  We were the excitement, the playfulness, the love, the joy wrapped up in their arms and their hearts.  It was reassuring, reaffirming, and re-energizing in a family that was always busy, always going, always striving to achieve. But at Christmas, it wasn't about the classroom grades, the awards, the accomplishments;  it was about the core values of love, of togetherness, of being a family...a caring and sharing nucleus. 
Christmas memories evoked visions of baked cookies and sweet treats, colorful packages wrapped in curled ribbons, and the all-important tinsel-covered tree that stood proudly in the center window of our living room.  My mother was a frugal woman who could stretch a dollar in ways I couldn't even comprehend.  As a child of the Great Depression, she learned the value of economizing and living conservatively.  She couldn't and wouldn't overindulge nor buy us too many presents.  My brother and I knew that there would be a homemade garment under the tree (sometimes pajamas, a shirt for him, or a skirt for me).  We knew that there would be socks, or underwear.  We also knew that there would be one toy for each of us.  We didn't know which package held that surprise but among the socks and underwear, there was one special gift.  For me, the best of these was the year I received my Betsy McCall doll in a red corduroy coat.  How my mother must have saved and stretched her grocery money to afford this was something I didn't appreciate at the time.  All I knew was that I wanted that doll from the moment I saw her on the pages of McCall's magazine.  My mother kept telling me that the doll was too expensive and not to get my hopes up, but on Christmas morning I still felt the excitement and hope that Betsy was sitting under the tree in one of the green and red wrapped boxes.  My father and mother took their places on the sofa facing the tree while my brother and I sat on the floor reading the labels on the packages.  I don't remember anything else about that year.  I couldn't tell you what other gifts I received.  I must have opened everything else first at the direction of both of my parents.  "No, no," they'd call.  "Open that one next." Coaxing us they would point and direct us to the less popular gifts before the 'main' gift was opened...the piece de resistance...the Big One...the special gift that they had debated, saved, and budgeted for.  Looking back now I realize what sacrifices they made for us.  I wonder now, if we showed them the appreciation and the gratitude they deserved.  It is more likely that we whined about wanting something that we didn't get, not fully understanding the financial situation and circumstances.
Today, I think about those days...the simplicity of the festivities of years past is a sharp contrast to the sumptuous celebrations of more affluent times and circumstances and yet they still pull at my heartstrings perhaps even more than those days of elaborate gift-giving and merriment.  
I look at my mother who sits quietly watching the Christmas specials; who might sing along with the assorted carols, and who exclaims how beautiful the Holiday decorations are.  I know that her memories are diminished by the years as well as her dementia.  I know that she has forgotten the excitement, the anticipation of the holiday, the cooking, the parties, and the frenzy that every mother faced when trying to do it all before the special day arrived.  In fact, she isn't sure what time of year it is, what holiday we are celebrating, where she is, or who we are.  Maybe that's  why I have been so sentimental lately...shedding tears at the drop of a hat.  Maybe the fact that I feel like the keeper of the family memories -- the custodian of our history,  places the emotional burden on me that pushes me over the edge.  I am, after all, the last one who remains cogent.  My father  (who had Alzheimer's) is long departed, my brother is suffering from Alzheimer's and of course Mom.   The other day, while wrapping presents, I took out the recorder and began questioning Mom.  

 "Do you remember when we were young and you used to wrap presents for us?" I asked.  
"No," she answered. I reminded her of the Christmases past but it was like I was telling her a story about someone else.  Something I said sparked a memory though.  She began to tell  me about her childhood and how important she felt being given the responsibility of wrapping the family gifts.  She was very young at the time and I am sure that she didn't remember it too accurately, but at least she could speak about the holidays.  She remembered her mother cooking at the stove, and the sights and smells of the holiday dinner. She began smiling broadly and feeling those feelings she had experienced over 90 years ago. It occurred to me that she, too, was the custodian of the memories; for she was the last one in her nuclear family still alive.  Maybe it was that responsibility that forced her to remember even if the memories were minimal.  I was grateful to have the recorder going as she spoke.  Perhaps years from now, we will listen to her recorded voice and feel her nostalgia, enjoy her words, and remember through her eyes the childlike wonder of the holidays.  In her family, there weren't many gifts;  but the small coloring books, the crayons, the little porcelain doll, and the hand sewn aprons were enough to bring joy and lasting memories even in the haze of late stages of Alzheimer's.  Holiday recollections are strong, enduring, and important to all of us regardless of the lavishness or the simplicity of the celebration.  It is the anticipation, the excitement and most of all the togetherness and love that imprints and survives through the years.  That thought makes me smile.  Beyond the emotional sentimentality, there is a deep and joyous gratitude, a legacy of loving families that remains in all of our hearts.  Even if and when memories fade, we still respond with sentimental smiles and happy tears.