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Is it Thanksgiving that kicks off the Holiday Season, or is it Halloween?  While the “they” forces are debating the question I’ll take a quick sentimental journey back to my own childhood remembering Christmas decorations lurking on the high shelves of our local “5 and 10 Cents” stores waiting for the Halloween masks and costumes to disappear.  No different from merchants of today, they couldn’t wait to push an early start for Santa’s helpers to swing into action.  My sister Janet and I used to ask one another, “What happened to Thanksgiving?”  Even at 9 and 12 we were aware that every holiday had its own tradition, and it wasn’t Christmas, but Turkey Day that arrived in November.   In school we had learned of the pilgrims sharing their harvest with the local Indians and giving thanks to the Almighty.  Nice beginning.   America’s first Thanksgiving has long since been tradition, and we continue to celebrate as the first gusts of cold air remind us that winter (and Christmas) is, indeed, on its way, but first let’s have our day of gratitude.

When we were children both Ken and I spent Thanksgiving day with family — not friends — family; unless the friends joined us for dinner.  As youngsters we were yet to meet, but family traditions were pretty much the same.  Dinner was either at home, or everyone gathered at someone else’s house; that house belonging to anyone on the long list of the aunts and uncles.

After we were married we continued to share with one another the Thanksgiving traditions of our parents, aunts and uncles. It was a little more difficult because we now had his family and my family from which to choose.  It was also noticed that our cousins were  growing up, getting married and having children, as were we.   With so many invitations and so many relatives, the older generation soon realized that traditions needed to change — not disappear — just become less rigid,  less cumbersome, evolving — even morphing — into a family solidarity of  love  and genuine affection for one another — which they did —  all the while respecting the new chosen Thanksgiving traditions of the younger generation.

We settled on Grandmother’s house – either one.  When Ken’s parents, Rose and Nick, began to have health problems we brought our brood, their brood and Rose and Nick, health permitting, to the home of my parents; a country setting located in Northern California’s Sonoma County.  For years my personal tradition was to arrive on Monday to help my mother prepare; making pies, cooking ahead and cleaning – getting ready for family on Turkey Day.

It was during dinner that last year when I noticed my mother seemed to be talking endlessly about not much of anything.  Her dinner plate was untouched as she droned on and on until my father said, “Irene will you stop talking and eat your dinner.”   She paused, took a few bites and began her filibuster once again.  I had noticed her being inattentive the previous three days, losing concentration and not listening.   Later, much later, we realized she was slipping away into Alzheimer’s.

Nick and Rose had already journeyed into the disease.  It was more than 35 years ago when doctors weren’t even certain what was wrong;  “Just old age,” was the usual diagnosis, “or senility – maybe dementia.”  The medical community groped and we did too.  Uncertain about what to do, we did the best we knew finally placing them in full care facilities when we could no longer cope.

My parents moved back to the Bay Area to be near us so we could supervise and be a part of their care, and life continued.  So did tradition, but once again a new one:  Thanksgiving dinner was at our house just as I had promised Mama.

Years before when I could see my mother was growing tired, not so much because of the work involved with family gatherings, but more of the house being filled with company; the laughter and chatter of adults, the clamor and joyful sounds of children, the cry of a new baby seemed to tire her.  Interesting, no matter how much we might love family and parties there comes a time when a little peace and quiet is better.  My parents were ready for love and devotion to be served in small portions.  I suppose we can compare the often overwhelming joy of family to a lifetime of being stuffed with Thanksgiving dinners – some better than others – but appreciated none the less.  When age finally dictates after such a life-long feast, and we are filled to the brim, all that is wanted is a very thin slice of pumpkin pie.  I understood what she meant; enough was enough.

Nevertheless, she worried about letting go of the reins of her tradition, “If I don’t have the family come to our home, then where would they go?”  Smiling a sad smile I reassured her, “Then they will come to my house, and when I’m not able someone else will have the family Thanksgiving at their home.  There will always be someone to hold it together because family tradition is so precious.  Just let me know when you and dad are ready to let it go.  I’ll be there.”

We took photos after dinner that year: family photos, group photos, candid photos, couples photos and Mom and Dad photos.  With everyone being in a jovial mood, Dad made the announcement, “This is the last Thanksgiving here at the farm.  Mama just isn’t up to it any longer.”  The invisible baton of tradition was handed to me and for all of these years I have held it close.  It has changed, been reshaped, gotten smaller – and larger – depending on the number of guests.  The door of Ken’s and my home swings wide, and there was/is always  room for one more.

Since Ken’s AD Thanksgiving is always the holiday which hangs precariously in limbo until November.  By then I know whether we can do it one more time — or not.  In October we had a small family gathering.  Ken was very good.  Somewhere in his damaged mind there remains a spark of social.  He did so well that evening I decided yes; we would have Thankgiving dinner at our house once again.  Our daughter Julie and her daughter-in-law Marisol did the cooking last year, and what a wonderful gift it was.  This year I will have Ben to help when he isn’t watching Ken, and those coming will all bring a dish of something fabulous for the table, as usual.  What a bounty of blessings abides in my home.  I am forever filled with gratitude.

Last Thanksgiving I wrote about “Fiddler On The Roof,” Tevya and his ever-changing tradition and reluctantly accepting what he could not change when his daughters began their own traditions.  I see my battered baton fragmenting as did Tevya’s; bits and pieces scattering in many directions as members of our family move to various locations throughout our great land, but that’s okay even though we will miss them.   I think of tradition as a lighted candle –  like love.  It’s by sharing, giving it away,  allowing it to spread that  it becomes bigger, better and brighter.

Following the “tradition” of Tevya and his humble friends I decided last year to place a metaphoric fiddler on my roof as a reminder that in spite of the adversities we all have, life is good.  As far as I know my fiddler remains.  Listen, once again I do believe I hear the lilting strains of music.

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Our first visit to the neurologist was January of 2004.  He examined Ken, talked with me, and then both of us together. His findings were inconclusive and I mentioned that I would like to avoid the “A” word even though there was a high probability Ken’s future was headed in that direction.  The doctor prescribed Aricept advising it might help.

Near summer’s end we decided to take a road trip through the southwest seeing people and places we would doubtfully visit again.  Ken drove having just renewed his driver’s license in June passing the tests with flying colors.  His reflexes were still good and he was an alert and safe driver.

Our trip was wonderful as we managed to see everyone and everything we had on our agenda.  But twice as we drove along some of the older, more scenic highways Ken would say, “I don’t have the slightest idea where we are or where we are going – where am I?”  I told him not to worry.  “We’re on vacation heading west on the old Highway 40 and it’s okay because I’m the navigator and know exactly where we are and where we’re going”  When in doubt, I would give him directions.  Furthermore, I drove through the cities to eliminate any confusion.  He trusted and believed me.

The following year in early spring he was requested to retest at the DMV.  He failed the written test so badly they disallowed any further testing.  Regardless of how well he had done the year before new tests were required following January’s firm diagnosis of Alzheimer’s.  Conclusion: driver’s license revoked.  More and more obvious signs of memory loss and confusion were beginning to appear even though most of the time; he was “so” Ken.

Over Labor Day weekend in 2006 our daughter Deborah and her husband Mark joined us on our property located in the Sierra-Nevada foothills, where we kept our trailer.  They also brought a group of young women from our church to enjoy the splendor of fall’s beginning and some outdoor camping experience.

We had purchased the land in the mid 90s with a country-retirement home in mind.  The site overlooked a valley of greenery and lakes, and in the evening we could sit where the house would be and watch the sun set.  With a septic tank, well, graded site and roads most everything was ready and waiting for the building to begin. The trailer was intended to be a weekend vacation place, a mini home where we could stay during construction, and for family to enjoy when we weren’t there.

We added an attached screened porch, doubling the floor space, and a deck under the trees.  It was our getaway while the county offices insisted on plan revisions, PG&E scheduled us for the 12th of never, and we encountered enough red tape to outfit the local high school’s marching band.  Then, once again, we began to notice the ever-increasing signs of Alzheimer’s.

That Labor Day with Debbie, Mark and the young women was the last weekend we spent in the trailer.  As the sun dipped out of sight and the merriment from the group of girls reminded me of other times and other campouts with own family, twilight brought further confusion to Ken.  After dark he became extremely disoriented.  “Let’s go,” he urged.  “We’re here,” I told him, “we’ll be spending the night right here in our trailer.”  I reminded him of all we had done to make it comfy and cozy, and how our sons Keith and Kenney had enclosed the area with split-rail fencing to keep the cattle away.  Nothing I said sparked a memory.

We unfolded the built-in beds and covered the mattresses with sleeping bags.  “I don’t want to sleep here,” he complained.  I made every effort to assure him that we had spent many nights in the trailer, our home away from home, but he remained unconvinced.  Finally, he accepted the fact that I was going to stay and, unhappily, he climbed into bed.  I could see in his face he was worried and a little frightened with his accommodations saying, “I don’t even know where I am.”  “You’re with me in our trailer,” I told him.

His disorientation had been a night thing.  The next morning he arose finding himself very much at home enjoying the group of young women, the country and our children, but I was certain the previous evening’s experience must have been terrifying – to be lost and not know how to be found.  Time in the country used to be invigorating and restful, but no more.  I guess it wasn’t/isn’t always a good idea to bring such an unfamiliar change to an already confused mind.

Up until recently any confusion about where he was could be easily set aside with a few comforting comments, but as his Alzheimer’s worsens familiar things and places seem to be vanishing before our eyes.  “Where’s the bathroom?” he will ask. “Is this my house? My backyard?  Where am I?” he questions getting out of bed.  I reassure him, “You are home.  This is your bedroom, your backyard.”

Ken’s decline since February has been dramatic which I measure from month to month while others who don’t see him as often are surprised at how quickly he has digressed down from one plateau to another.  Alzheimer’s takes its victims to that place of no return one step at a time.  Even though it’s his journey, I walk beside him, and there are times when even I ask myself, “Where are we on this road that leads him to nothing?”

As unsure and as slow as he is, his health is fairly good; his upper body is especially strong.  Still, with Alzheimer’s there is no way of calculating life expectancy.  Former President Reagan suffered with the disease for 10 years, and according to an Alzheimer’s research letter, people can live with it up to 20 or more years.  Without being maudlin I sometimes think about the “Where” question with application to another venue, “Where are we?” as we drift aimlessly along life’s conveyor belt asking yet an additional question, “What’s next?” For some questions there appears to be no answers.

In the beginning when Ken and I talked of his disease, it was with a lot of trepidation, but he said, “We can get through this together.”  At the time, I agreed with him asking if he would promise me just one thing, “Always believe and trust me.”  Eagerly and with the same true sincerity as his wedding vow he answered, “I promise.”  It was, however, a promise he is no longer capable of keeping.  Sometimes, I will extend my hand asking if I can help.   Usually, he waves me aside wanting no interference from a stranger. But occasionally I am surprised when he reaches out accepting me and my help.  Holding tightly he pulls and pushes himself from a chair, continuing to hold my hand.  Briefly, he is kind and grateful.  For me, in those moments, it’s a promise kept.  My husband believes and trusts me even if it’s only a fragment of time.  If he were to ask, “Where am I?”  I would answer, “With me.”

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Was it Cicero, a Roman statesman, Matthew in the New Testament, Shakespeare or that wonderful poet anonymous who said, “The eyes are the windows to the soul?”  It doesn’t matter who said it, nor does it really matter that each quote is a little different.  They all say the same thing, and each is so true: the eyes are definitely the windows to our heart, our soul and often a glimpse into who we are.

Our eyes have many gestures, if gesture is the right word to use in reference to eyes.  Or do they have a language of their own?  They sparkle, flirt, look bewildered, shocked, frightened, askance, and we mustn’t forget the eye roll, accomplished best by teens.  Of course the list is almost endless.  Interrogators watch the eyes for guilt, hidden answers, avoidance or any other clues which might lead to solving a  mystery.  Psychologists search deeply through the windows seeking answers into the troubles and mental health of a patient, and parents learn early on that the puzzling situations of family life are often solved by looking a child straight in the eyes and asking the leading question.

“Who’s been eating the Easter candy?” my mother asked glancing at my two older sisters and me.  “It wasn’t me,” they both cried in unison.  “I didn’t eat any,” I answered, the guilt building.  I was 9 and thought my pure statement would get me through.  However, my mother-turned-detective was relentless.  “Look at me,” she commanded, the word guilty no doubt flashing across my eyes like blinking lights on a theater marquee.  “Tell me the truth.”  There I was – caught with my hand in the cookie jar – or rather in a candy bag — with nothing left but confession.

Better at eye reading than all the professionals in the world are parents, especially mothers, and I learned from the master.  “Have you been smoking?” I demanded from one of my barley teen children, the barely-teen scrubbing the teeth in the middle of the afternoon while the clothes reeked of tobacco.  Even without the smell, brushing of teeth without a reminder was out of order and a bit suspicious.  Barely-teen mumbled through the tooth paste, “I dod ‘moke,” and while the reeking was helpful, the eyes told the truth, followed, finally, by the guilty voice admitting puffing one or two — but never inhaling.

“Where did you go this afternoon instead of classes?” I asked another of my teenagers. Eye puzzlement was a dead giveaway, even though the guilt was on his smile.  He didn’t care that he was caught, but marveled at my detective work and network of spies.

And when they were younger, it was their eyes telling of sickness before they spoke.  “Mommy, I don’t feel good,” mumbled Debbie, my six-year-old.  “I know Sweetheart,” I replied holding my palm against her forehead.  “I can see it in your eyes.”  “Are my eyes sick too?” she had asked.  Many people look a little glassy eyed when they are sick, but Debbie possessed the sickest eyes of anyone I knew; sparkling and deep brown in color during well times, but with illness they turned into dull, hazy marbles.

As parents we observe a troubled marriage and see pain in the sad eyes of our adult children.  We so want to share their burden, but wisely allow what is not working to end in its own natural way so they can pick up the pieces and begin anew.  Hopefully,  happiness will come again, and we will know without words of its arrival because of gleaming eyes telling of love’s return.

So as parents, wives, husbands, friends and relatives we look past what’s up front to peer inside of another’s soul or heart when there is a need; not to intrude, but to help, guide and comfort.

I have noticed with Alzheimer’s the eyes often reflect different messages:  With Rose and Nick (Ken’s parents), their eyes became vacant as the disease neared its end.  It was if no one lived inside.  Yet, my mother’s eyes danced with the wonderment of a little girl during her journey through Alzheimer’s, and flamed with excitement at  being offered ice cream in the middle of the night.  I don’t ever remember her soft blue eyes looking as if she were no longer there.

“My mother’s eyes have that vacant look,” said Marvalee, as we talked about Eva during the music-filled afternoon we all enjoyed.  “That’s something new,” I answered.  “When Ken and I saw her in January her eyes were still bright, still showing some life, some bit of recognition.”   Now that was gone.  Are the eyes saying that Eva doesn’t live there anymore?  When we can no longer find expression and answers through the eyes, when the windows to the soul become closed, what does that say? 

Often I look into Ken’s eyes, and they still tell me a lot.  Some days they appear dull, and during the dull look I find him more combative, more uncooperative than when they are bright.  Those moments when he remembers me I even see a sparkle coming from deep inside his heart.  He seems relaxed and softens as I sit with him on the couch holding his hand.  Most of the time, however, I see a jumble of ever-changing expressions and emotions:  anger, despair, bewilderment, fury, fear, seething, frustration, confusion, recognition, ridicule, revenge, hostility, and every so often love.

Yes, no matter where we are in life, our eyes are the windows to our soul, our heart, and our health.  Fortunately, or unfortunately, we learn to read one another like the best of books.  For me it’s been a priceless gift.

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“Hi.  This is Marvalee.”  “How good it is to hear from you,” I replied, “and what a nice surprise.  How long will you be here?”  Her voice always sounded bright and chipper with a touch of breathiness; the breathy part was that of a singer, and Marvalee was not only a singer, but a dancer as well, and had been most of her life. “I’m here from Maui visiting my mom,” she explained. “It’s her birthday you know.”  Yes, I knew, and I remembered the gala birthday parties Ken and I attended celebrating with Eva as her friends and family gathered to sing and dance away the previous year.  Marvaleee continued, “If you are free, I would love to come over and sing a few songs for Ken.” “That would be just lovely,” I answered.

The daughter of Ed and Eva, who were also entertainers – musicians —  and I use the past tense because they no longer perform.  Ed has long since passed on, a victim of Alzheimer’s, and following his inability to continue as their leader, members of the colorful band dispersed and retired.   Soon after Ed’s death, Mother Eva was stricken with the same dreaded disease, and has been with a caregiver for nearly ten years. 

The family, all from Hawaii, came to the Mainland to entertain in the best way they knew: songs and dancing Hawaiian style.   During the heyday of luaus, fire dances, flowing muumuus and island shirts, the band was very successful.  Natural musicians, most played by ear providing what Ken and I called the most danceable music in town.

Attending a luau whenever we could get tickets, Ken soon became known as a good sport.  Catching the eye of one of the gorgeous dancers, he was soon invited on stage to learn the hula or some other exotic dance.  My husband could be such a clown,and loved being in the limelight.  Wrapped in a grass skirt and wearing a lei he swayed back and forth as if he knew what he was doing.  He didn’t.  When the music stopped, Ken and the chosen others, bowed to a cheering round of applause, and returned to their tables – laughing.  He was, as always, a fun, if not an embarrassing, date.  And Marvalee, whose beauty and dancing rivaled no one, could always find him no matter where we were sitting.

 Soon after she called, the bell rang.  My door opened wide welcoming Marvalee and her friend, Mary.  The two burst into song, “Oh you beautiful doll……..”  My spirits were lifted even with my considerable hair loss and scar across my forehead.   Entering, we exchanged hugs and Alohas.  Approaching Ken for the same hug, he stiffened and drew back as I warned them not to get too close, he needed time to be comfortable with newcomers.  He was no longer a good sport, nor was he a fun date, and he didn’t remember Marvalee.

 Living most of her time away from the Mainland, she had no way of knowing how much Ken had regressed.  The fun-loving man she had remembered was gone.  Rather he sat down in a chair and glared at her, his lips drawn in a tight, straight line.  “At times Mama looks at me with those same tight lips,” Marvalee commented, Mary agreeing.  We compared notes.  We hadn’t seen Eva since January, but at the time she smiled at us and while she didn’t know exactly who we were, she knew we were important in her life.  “Probably not any more,” said Marvalee with sadness’.  “Most of the time Mama’s eyes are vacant and she doesn’t remember me – nor any of the family.”

Later Marvalee opened her music case and brought out a polished ukulele.  Strumming a few cords, she adjusted the strings and began.  Lilting strains of Island music filled the room and she began to sing.  They were newer songs than what her father and mother had played, and unfamiliar to Ken.  He sat in his chair, his lips still drawn in a tight, straight line.  Transitioning one song into another, the two women harmonized away the afternoon.  Ken hardly moved a muscle.

Her fingers moved across the strings once again and suddenly familiar music filled the air followed by the memorable lyrics from long ago, “You are my sunshine, my only sunshine.  You make me happy……..”  It was if the very sun had broken through the clouds.  Ken’s face came alive and he looked over at me, a broad smile erupting on his mouth.  Her words continued, somehow finding a path through the fog of tangled and forgotten memory.  Lovingly he looked at me, just me, and then he winked and pursed his lips as if to blow a quick kiss.   We were two souls locked in a moment of warmth by yesteryear’s melody and words.  A tear or two of happiness spilled down my cheeks, and I felt gratitude for Marvalee’s thoughtfulness and music, and for my brief flash of joy.

Marvalee played a bit longer; songs from the past and Ken continued to smile, but not in the same way and not at me.  Music had reached him, and he must have experienced a spark of reality and realized that something pleasant had taken place. For a time he was social and polite. “Thank you,” he called as the two women left.  I walked them to the door and gave each another hug and another “Aloah, thank you.”  “It was my pleasure,” Marvalee whispered.  “I got to see Ken smile — just at you.”

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A few months ago while still healing from major injuries, I browsed through a stack of magazines, mostly untouched. However, as I shuffled through the pile, I noticed my church magazine, the pages already dog-eared, was opened to an article intended to be the next read. Interesting, I thought picking it up and noting the eye-catching title, “GRATITUDE,” then asking, “Was this a message for me?” Certainly, I felt gratitude. After all I was alive and recovering, and yet I was nudged at times with, “Poor me.  Angry me.  Why me?”  Perhaps I needed to ponder about gratitude a bit more deeply.

Written by a practicing psychologist who had researched the use of gratitude interventions in promoting well-being, he found that by interceding at appropriate times during counseling, thoughts of gratitude were helpful in treating depression and other problems. The doctor also advised that acknowledging thankfulness would be helpful to everyone’s mental health no matter how grave their situation. As a result of being grateful, we could all lead richer, fuller lives.

He also defined gratitude: a positive experience when we recognize gifts or blessings and feel thankful.  It sounded so overly simplistic, yet I continued reading.  Soon I began to reflect on this later portion of my life concentrating on the positive rather than the negative.

In my own defense I counceled me that I have always been prayerful.  As a child, my teachers of faith described prayer as like a sandwich:  a top and bottom piece of bread, or better known in addressing Diety as a beginning and an ending.  Inside of the prayer sandwich we were to express our thankfulness first.   “Before we ask our Heavenly Father for anything,” he explained, “we must always remember to thank Him for what He has given us.”  That could be the peanut butter portion of the sandwich.  The teacher followed giving thanks with permission to ask — the jam or jelly.   As an adult I have wondered if this pattern for prayer was a bit irreverent, but it is such a good pattern, one which I have followed all of my life, and long ago I put aside any thoughts of peanut butter and jelly when making supplication.  Perhaps now, I needed to be more outreaching in my gratitude. 

I recalled from the past that Oprah devoted the better part of a year’s programming to gratitude and journal writing. At the time, I too was caught up in the thought process of making myself more aware of blessings, but never kept a specific journal. Recently, in her magazine, Oprah admitted that through the years she had become so consumed with work there was no time left to write about the good happenings of each day. Reading from an old journal she recognized those great years from before, and commented on how happy she had been.

 The author of the “GRATITUDE” article encourages keeping a Gratitude Journal as well, with the purpose of recording several remembrances each week, but not just in list form. He suggested describing the experience, recording thoughts and emotions for the purpose of savoring and reliving what you had experienced.

In reviewing the past six years of struggling with Alzheimer’s, battling the war which is never won, I remember my friend, Madalyn, who had also battled the same war, until her husband, Darwin, died three years ago. “It wasn’t all bad,” she would tell me, and we often laughed about some of the funny things Alzheimer’s victims do and say. She reminisced about trips they had taken, visits with family which brought joy to her and momentary pleasantries to him. Her happier times with Darwin were similar to mine with Ken. These were all positive experiences: gifts and blessings recognized and thankfulness felt: gratitude.

When I came to the paragraph titled “Express Prayers of Gratitude,” I decided that would be my new beginning. As I continued my recovery in the quietness of my daughter’s home I reflected on being grateful for little things:   One at a time I could lift each foot, place it on the opposite knee and tie my own shoes, I could shower alone and I was beginning to feel confident once more. I wasn’t searching for big, dramatic epiphanies.   Deliberately, I looked for small things to appreciate because there are so many, and small blessings are often overlooked.  Every morning before I struggled out of bed I would look up at the ceiling — still wearing my neck brace and unable to kneel in formal address to Diety — close my eyes and offer a prayer of gratitude without pleading for any favors. (The favors could be requested in later prayers.) My morning prayers would be only of gratitude. I was amazed by the multitude of gifts taken for granted  for which I had to be grateful.

I have been home now for more than two months and my gratitude list grows each day. Ken’s Alzheimer’s is getting worse, but because of his caregiver, Ben, I have a sense of freedom. If I write for a few hours during the day, I know Ken is all right. Ben is with him, and I can nap undisturbed because Ben is here. I am grateful for Ben and for his relief, David. I am grateful for each new day, and my growing ability to actually help Ben with Ken. I am eternally grateful for family and friends. I won’t say I’m grateful for Ken’s illness, because I am not.  I detest this dehumanizing disease and how it has robbed us of so many good years. However, I am grateful for my coping mechanism, my compassion and awareness of others who suffer from Alzheimer’s and other devastating illnesses. I am grateful that through my writing I may help someone else; letting them know they are not alone in their struggle. I am grateful for Ken and the wonderful years we have spent together. Every so often, I see a spark in his eye and a smile. For a moment he is the man I married. Feeling gratitude and offering thanks each morning for all of this and more gives me strength.  Each day I can and will go forward into our daily battle, beginning with a prayer of gratitude.

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Remember watching the PBS special series which took place during the 1800s where the rich European noblemen and their wives had dozens of servants scattered throughout the castle: butlers, upstairs and downstairs maids, a seamstress or two, cooks and bakers plus scads of additional kitchen help.  Outside there were gardeners, stable boys, coachmen and countless others to keep the grounds manicured and trimmed, and the carriages polished.  It took a lot of people to keep those palaces functioning and presentable. To head up the staff was the prim and proper housekeeper who, with help from the butler, supervised the staff making sure their work was always done; accomplished quickly, quietly and out of sight from the manor’s lord and lady; except possibly, for his groom, her personal maids and the children’s nanny.  The “upper crust” did not fraternize with the help. 

Even in America the mansions of the early 19th century boasted servants quarters in their elegant three and four story mansions where it was normal for the help to “live in.”   Economics, career opportunities and life styles have changed the previous opulent society from normal to unusual.  However, it isn’t unusual for busy people in all walks of life to enlist cleaning services and gardeners on a weekly schedule, or occasionally to help catch up on the often dreary tasks of home maintenance, but for the most part, most people do everything themselves

Ken and I were always do-it-yourselfers, learning early on that by doing you got more bang from your buck, plus the satisfaction of a job well done.  Whether it was adding an extra room, painting the house – inside and out — bricking in a patio, building fences, landscaping the front yard, caring for the children or keeping the house clean we did it ourselves.  Consequently, I found coming home after my three months of recovery and recuperation a bit disconcerting to have “help” in my house on a permanent basis.   What’s more, it made me wonder who’s the boss?

I knew, without a doubt, that my family had made the very best of decisions in my absence, yet to find Ben (Ken’s caregiver and a person I didn’t know) busy in my kitchen preparing food for my husband  — and me — felt very odd.  Not only does Ben care for Ken, he cooks, keeps up with the houseswork and laundry (which he folds to perfection) and polishes the furniture when company is coming.   However, I still wasn’t sure if I was at ease with this new arrangement, feeling at first as if I didn’t quiet fit anywhere in my own home.  But doing a reality check I also knew that I would have to change; caring for Ken as I had done before the accident was a thing of the past — something I could no longer do —  especially considering all of his new needs.  Even though I was capable of taking care of myself, it was, perhaps, a good thing to still require rest and a nap when my energy level plunged, and appreciate Ben’s presence.  I was the one who still had months of therapy for my neck and knees, and I was the one who needed time to make an attitude adjustment.

Unlike the gentry of long ago who didn’t fraternize with the help, a few months have passed allowing me to become comfortable with Ben and I believe him with me.  In addition, there is David who is Ben’s relief (granddaughter Kristina, who was living with us, takes the night shift).  Having other adults in the house has been a surprise bonus – someone else to talk with.  I have also met and admire the wives of both men, finding the four new treasures in my life.  They are all career caregivers – a noble calling – kind and gentle, but firm when need be with the childlike adults whom they assist.

An auto accident wasn’t a path I would have chosen, nor would I have pressed the “select” button for a six-year continuing assignment with Alzheimer’s, but I have learned to accept those things I cannot change.  Life has taken me to this point where help is required and it is with gratitude and growing affection that I give thanks for Ben and David.  Their hard work and devotion continually touches my heart.  But even more, I am grateful that I am not stayed by some silly tradition from generations past.  I can, and do, enjoy and appreciate their friendship.

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When I’m thirsty there is nothing more refreshing and satisfying than a tall glass of water with lots of ice, but after the accident both were temporarily denied, and for good reason.

Once stablized I asked for two things: a few extra blankets for warmth and some water.  “I am so thirsty,” I pleaded.  The blankets came immediately, but not the water.  Someone explained that I shouldn’t have anything to eat or drink until further examination to make sure I wouldn’t choke.  Nevertheless, I was still thirsty and begged for water.  Finally, Nurse Keven relented saying, “Try giving her a little ice.”  The droplets trickled down my throat like fresh summer rain on a hot afternoon; cool and gratifying.  I felt rejuvenated — until the next thirst — requesting more ice.

Care couldn’t have been better than in ICU, but the family decided one of them would be with me 24/7 despite the assurance of staff that my needs would be met.  All the same, it was agreed there would be a schedule of six-hour shifts so I was never alone:  My caregivers main function:   watching me sleep and feeding me ice.  Looking back I must agree with staff:  My physical needs were taken care of very well.  However, without Ken sitting near my bedside, there is nothing that fills the vacancy or heals the spirit more than family.  Kevin, our first boy and third child is big and burly like my father, and like his brothers is very good looking.  Casual, laid-back, and a bit detached; at 18 he too had experienced a life-threatening automobile accident.  “Mom,” he asked, “Are you trying to outdo me?” all the while trying to make light of a serious situation.  Kevin’s shift was taken from part of his work day and busy political life.

Kenney, our youngest, is the comic, covering the hurts of life with something amusing or a joke.  He made me laugh even with broken ribs, and despite the pain it felt good to laugh reminding me that life could still be funny.  Yet, my son can be serious and thinks deeply, philosophizing about everything from work to our messed-up world.  He and Keith are in business together.  Kenney came in the evening and stayed until Keith arrived.

Keith is a no-nonsence kind of guy, the middle son, the fixer, the silent one who steps forward to calm the storm.  His shift finished the night and as soon as his wife, Sabina, dropped off their daughter at school, she relieved him.

I slept most of the time, awakened periodically by staff or by thirst.  “Ice,” I would ask, and before me one of my caregivers appeared, a cup of ice in one hand and a spoon in the other.  Gently, the crushed refreshment was placed into my open mouth.  Usually, three spoonfuls were enough and I would  return to sleep.

In my dreams I could see a nest in a tree and in the nest was the most pitiful looking bird imaginable.  It remained seated in a half-broken shell, looking upward; the feathers — lots of feathers — were still wet and stuck together forming a scattering of points sticking out from its skinny body.  The head was round with human eyes and a demanding beak-mouth which was always open.  I thought of the creature as me, constantly calling for ice, and constantly fed.  In retrospect my sons and daughter-in-law would have made wonderful bird parents.

In the darkness I was aware the shift had changed.  Kenney was on his way home for a few hours of sleep before beginning the day.  Keith was the papa bird feeding me ice.  “Mom,” he said, making sure I was awake and listening.  I mumured a soft acknowledgement.  “Mom,” he said once again.  “You need to know that everyone here is working extremely hard to make you better and you’re not cooperating.”   I looked up at him silhouetted against the light from the hall; not even seeing his handsome, troubled face I could hear the worry.  Recognizing that he was scolding me as if I were a naughty child, I still didn’t understand why.  A touch of irritation in his voice caught my attention as he whispered, “You’re not breathing the way you should.  Breathe, mom, breathe — really deep.”  “Hurts,” I burbled.  “That’s why you’ve  got to take the pain medication then it won’t hurt so much.  Now take a deep breath.”  “Okay,” I mumbled.  “Tomorrow.”

With my thirst quenched and the scolding over, I drifted back to sleep; the needy, pitiful bird with its enormopus mouth once again filling my mind.  Yet, another thought continued to nag, and somewhere in that misty place between conscious and unconscious I reasoned that I had better cooperate and begin to breathe deeply because if I didn’t there remained a strong possibility that Keith might not give me any more ice.

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I can’t imagine what it must have been like to receive the kind of phone call my children received the night our car was hit by a drunk driver; when life, as we all knew it, suddenly came to a screeching halt leaving dinners uneaten, appointments canceled, meetings unattended, young children bewildered and our adult children and their spouses gathered in disbelief.  In retrospect I realize how naive humanity really is, all of us thinking we are so in control — masters of our very existence — when in reality we are not.  Life pulls the rug from under our feet every so often, perhaps to remind us of how frail and vulnerable we really are, and how dependent we are on one another.

Now what?  I suppose that was the paramount question.  Suddenly, the responsibility of mom and dad fell upon the shoulders of the next generation with absolutely no warning.  Even with Ken’s Alzheimer’s, he and I are the generational buffer zone between them and the great beyond.  You know, the older generation that keeps those of middle age somewhat “young” because their parents are still alive; grandparents to their children and like a rock we have always been there.

Then, unexpectedly things change and major decisions must be made by five adult children.  Five different opinions need to be considered, and five solutions weighed for the dozens of problems which lay ahead.  Could they work together or would they pull in opposite directions?  Could they get past “personalities” and agree even if it was agreeing to disagree, and be able to get on with the tasks at hand which included health-care decisions based on existing Advance Directives.  Who could and would handle the varying components and who would be accountable for mom and dad’s finances?  What about dad?  What would they do with their dependent father once he was released from the hospital:  caregivers at home or a care facility — or what?

I now refer to Keith as my CEO.  It seems that someone in the family steps forward and takes over.  Not that there isn’t that same capability of leadership in all of our children, it’s just that this time it was Keith who took charge — delegating and assigning what needed to be done.  Whether the others grumbled or disagreed I don’t know, nor do I want to know.  What I do know is that my children — with families of their own, business and work schedules to attend — set aside their own priorities to care for our needs.  Together, perhaps prodded and encouraged by the CEO, they worked like a finely-tuned machine; each doing what was assigned in the best way they knew.

As I recovered, I was able to spend a good amount of time with each one of my adult children: three men and two women, and their families.  It was quality time, relaxed time, alone time, intimate time, and stolen time from their busy lives, but I treasured those hours with them, rediscovering who they were, finding them to be the kind of people Ken and I had hoped they would become.  I also realized how very different they are, which I found rather amazing.  Coming from the same parents they are not carbon copies of me and Ken.  They have, however, grown into their own diverse persons while embracing the same values and qualities they had been taught: they are vigilant and hard working; and they are good, kind, loving and giving people.  I understand they don’t always agree with one another, nor do they always agree with us, and that’s all right.  The important thing is they are there for each other, and they are there for us.  Not only do I love them, but I like them; could a parent ask for anything more?

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I couldn’t agree more.  After six years of watching the cruel disease destroy my husband’s mind and the life we had together there is nothing funny about Alzheimer’s, but death isn’t funny either.  Yet, we all make jokes about death and think nothing of it. 

 Recalling a scenario of two golfers at the 18th hole:  The one golfer took off his hat in respect as a funeral procession drove by on an outer highway.  Bowing his head and standing silent for a few moments, his partner commented on his thoughtfulness.  “It’s the least I could do,” stated the now-attentive golfer, “we were married nearly 50 years.” 

Obviously, his dedication to golf was more important than paying a last tribute to his deceased wife.  It is so improbable, it makes good humor.  It’s a joke.  Certainly, someone from Comedy Central doing stand-up about dying  at a funeral would be totally inappropriate, but then again at the reception following a burial we gather as a grieving family and friends and relate remembrances of the departed with laughter and with tears streaming down our faces about their life and living as we recall numerous funny moments.  There is a parallel between happiness and sorrow, sweet and bitter,  joy and grief, and it’s through that parallel that we find humor and often a release for pent-up saddness.

It’s true, I’ve never heard cancer jokes, nor have I heard jokes about many other devastating diseases which ravage so many, but there is something about being forgetful and confused that lends itself to humor, especially in the beginning. 

When my father-in-law was given his last driving test, the examiner told him to make a left turn at the next corner.   He did exactly as instructed.  However, it was during morning commute hours and the next street was a main thoroughfare.  Nick made his left turn as the sounds of cursing, horns blaring and brakes squealing filled the air.  The examiner turned white and instructed my father-in-law to stop the car and get out.  Driving back to the DMV, the shaking man removed himself from the driver’s seat and told my husband, “Your father’s license is permanently revoked.  He is never to drive again.” 

All the way home Nick complained that the examiner had tricked him, failing him after he had followed instructions.  “But Dad,”  Ken told his confused father, “You must obey the traffic signals first.  You drove through a red light.”   No accident followed his error and no one was hurt.  Did we laugh?  Yes, and we have laughed for years.  Is it an AD joke.  Yes, and I laugh, even now at some of my husband’s confusion.

Midway through our marriage, we invested in rental property as retirement income, and for years have dealt with tenants, maintenance, rents, rental agreements, and collecting rents.   Every business has its own jargon with which the owners become very familiar and those terms become part of our everyday conversation. 

Early on in Ken’s AD, there was an evening when he looked at me and knew me not.  Suddenly a stranger in his home, he ordered me to leave, firmly saying, “You don’t belong here, get out of my house.”   I replied with equal firmness, “I am not going anywhere, this is where I live.”  Flustered that I would not leave, he looked at me and with all the authority of an irate landlord demanded, “Show me your rental agreement.”  I burst out laughing.  I was his straight man and he was the comic.  Whenever I tell the story, people laugh.  It is a funny Alzheimer’s story.  Is Alzheimer’s funny?  No, but there are times when what the victim does or says is funny, and why shouldn’t it be all right to laugh?

Granted, there must be parameters guiding what is a cruel and in bad taste, and what is okay.  Admittedly, humor walks a very precarious line when making jokes about such sensitive subjects as illness, disorders and even death.   Remember Tim Conway doing his shuffling old man?  Offensive?  No, but it could have been.  But Conway did it in such a sweet sensitive way, that even the elderly, shuffling old people could laugh at the truism.  That same kind of sensitivity is what opens the door so we can laugh away a portion of the pain of some of the terrible challenges which life gives us. 

A few years back I read a letter to the editor of an AARP publication in which the writer stated that she would never again see or listen to Bob Newhart.  Continuing her complaint she said, “Alzheimer’s isn’t funny,” citing  a Newhart  joke about his dog having Alzheimer’s, which she considered poor taste.  However, the audience roared — she was greatly offended — and no doubt overly sensitive because of a close loved one having the disease.  For me, being able to laugh — even about this terrible monster — is part of the armor I wear in my day-to-day battle of living with its life-sucking destruction.

Recently on the sidebar of my Blog there was a reference to “Onion News Network.”  The htt://wwww etc. that I zapped didn’t define where I was going until I got there.   Nor did I notice the clever onion graphic because of the slick professional and serious look of the mast-head.  Intrigued by the blurb which said something about laughing a lot or you cry a lot, which has been my motto since the mid 70s when I began caring for my AD in-laws, I clicked to the web.  Popping up on the screen was a very serious-looking newscaster commenting on the results of a study by a “well-qualified” doctor who stated that over 80% of Alzheimer’s patients were  misdiagnosed. 

So sincere was the broadcaster I believed I had clicked on to the wrong website, but I listened because of the stunning announcement.  He continued, stating that an 88-year-old woman had been held for months against her will, but was released when she convinced authorities her small children were left at home unattended.  Excuse me? I thought.  An 88-year-old having small children at home — finally realizing that I was, indeed, at the right website.  Continuing with the “newscast,” and a few more startling (and funny) interviews the last clip showed attendants guiding and wheeling elderly, confused and often decrypt men and women out of a care facility into the sunshine, supposedly on their way home.  One agile old man, still in his bathrobe was running across the lawn shouting, “I’m free, free at last.”  I watched the clip a few more times to catch the full humor and it did give me my giggle for the day.  It was funny.

Is Alzheimer’s funny.  No, definitely not funny, but we can laugh at some of the situations produced by its presence.   It isn’t being calloused to see humor in life’s journey even when it’s sorrowful, remembering that laughter is the best medicine in becoming strong.   As caregivers, family and friends of the stricken, we must fortify ourselves with all the strength and energy we can muster in order to continue fighting the discouragement, the frustration, the anger, the depression, despair and the futility of battling this monster of a disease which ultimately will triumph.  Until then, and long afterward, I will hang my banner high for all to see, “If you don’t laugh a lot, you will cry a lot.”

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THE HIGHEST OF HONORS

Most of the people with whom Ken and I have shared our adult lives made the choice, following marriage, to have children — lots of them.   The trend, which was very popular after World War II and the Korean Conflict was to have large families.  As part of that trend, we are the parents of five offspring:  two girls and three boys — stragglers of the “Baby Boomer Generation.”   Our years of rearing children were the best years of our lives, nothing out of the ordinary: normal, I would say.  We did PTA, Dads’ Club, Little League, Scouts — boy and girl — church with all of its youth programs and activities, enjoyed their friends: good and tolerated the bad; we endured sick days, happy days, school days, vacation days, holidays and rebel days.  We angst through the 60s and worried about drugs, hippies and all the ramifications that went with young people coming of age during such a tramatic period of history and being faced with choices where their lives could have been damaged, ruined or even claimed by death, but they survived and so did we.

The growing years went by in a blur as if we had pushed the fast-forward button of a VCR.  Some of our brood went to college, others did not, but in any event, they all did the same — and the normal thing — as young adults they picked up their lives and went their chosen way.  Normal — and happy:  that’s what we wanted, yet as each one left the nest they left an empty spot in our hearts.  For most of the years which followed, they have lived close by with their growing families, and we consider that a blessing.  While we are no longer the strong beacon of influence we hope to have been, we treasure  the grown-up relationship we have with all of them.

Parenting, however, is still such a constant, and while Ken and I had rediscovered “us” and had moved on into our retirement years, we wanted that safety net to remain for these grown children: the knowledge that we were and are still “there” for them — in every way.   It isn’t because they really “needed” us, it’s their knowing that counts.  I’ve often compared us, “mom and dad,” (other moms and dads as well) to the stove and refrigerator — even the washer and dryer — the house, the car — home; “there,” we’re just “there.”   We are part of that security, that solidarity which they have known “always,” and will, hopefully, remember in a good and loving and “normal” way.

So what do we, as parents, expect in return?   Actually nothing, but cards and perhaps a few flowers, or some other small token of love on birthdays, Mothers’ and Fathers’ Day; love and respect and occasional phone calls — and visits.  But accolades?  I don’t think so, believing myself and Ken to be ordinary people. Yet, to my surprise my daughter, Debbie, nominated me for “Caregiver of The Year” through a website out of Chicago: http://www.caregiving.com with Diane Brown as the host of the site, and her own internet/radio program.  I am one of the five recipients to receive the award and I am honored and humbled.  When I read Debbie’s letter of nomination, and her description of what she has observed over the years, I cried.   Such a high compliment to receive:  for her to see me not only as her mother, but as a wife, a person — an individual in my own right — someone who has had a life and has, posssibly, made some kind of contribution to mankind and the world in which we all live, and for her to want me honored is an honor in itself.  The following is her letter of nomination:

“I am writing about my father’s caregiver, my mother.  Given all the other service-oriented activities she has been part of:  PTA, Scouts, Little League, and church, this would not be out of the ordinary, but my father is the fourth family member with Alzheimer’s that she has given or directly supervised their in-home care.

“Her first experience with the disease came with my father’s parents.  I cannot remember when they were stricken, or what their ages were.  I remember their 50th wedding anniversary; my grandmother was 68, and my grandfather 12 years older.  They both seemed fine at the event, but shortly after the celebration, my mother began to make more and more visits to their home.  They lived about 40 miles away and my mother made several trips a month to take them to the doctor, for haircuts, or to make sure they had food in their cupboard and refrigerator.  My father’s sister lived a few blocks away from them, but because she was a single mother and worked full-time, she had little time left to spare. 

“My mother was truly the sandwich generation, as I had three younger brother’s still living at home.  I know that she was devoted to home and child care, but she was also realizing some success as a freelance writer.  However,  by unspoken agreement between my father, his sister and herself  it was a given, because she didn’t “work,” the responsibility of caring for my father’s aging parents would belong to her.  Even though the current social climate touted women’s rights, liberation and the importance of career, my mother’s dreams of being a writer were squeezed between appointments, errands and all the other aspects of her busy life and giving nature.  She had no time to think about whether she was liberated. 

“With the death of my paternal grandparents, the needs of her own parents soon crept in and once again began to take over her life.  When her own mother developed the same symptoms that her in-laws had shown, she moved them from their country home, which was two hours away, to another home just a mile from her own.  Her older sisters lived two states away, and the burden of care for their mother fell on mom’s shoulders.  Once again her time was spent in the busyness, stress and exhaustion of caring for an Alzheimer’s patient.  As her mother’s condition worsened, they tried a care facility.  Its effects were devastating not only to her mother, but also to her father who could not handle the toll the confusion and foreign surroundings brought on his wife which only added to his own despair.  Luckily my mother found a dear friend who took over much of the burden of caring for the older couple the last few years of their lives.  Despite the help, mom was very much involved in their care.  She was continually at their home doing what she could and again, the sole driver for appointments and outings, which continued until the elderly couple passed.

“Following a few years respite, the ugly signs of Alzheimer’s appeared in our family once again, this time afflicting my father.  After her experience with her mother and in-laws, one might think she would be an expert, but not so.  Everyone is different and seeing your parents change into people you no longer knew, cannot be the same as having your beloved spouse of almost 60 years, not only not recognize you, but demand that you leave your own home.

“My mother has risen to this challenge with fortitude, determination and a sense of humor.  She has become somewhat of an expert on the holistic treatment of this disease, and in a sense, she has won.  Whether it is the day-to-day battle or the full war, only time will tell.  After six years my father continues to live at home.  Each day he takes a handful of pills and vitamins that may have allowed him to retain enough of his personality to care for his physical needs, and for the most part functions as a young boy in their home, with small moments of time as my father.  The war will be over when he is taken to his Heavenly home.  Hopefully that will happen sometime in his sleep and then my mother will be victorious, as she has finished this last act of marital service and love.  I cannot imagine the emotional pain this has wrought on her, and the torture she has felt as she has lost her soul mate, bit by bit.  Her perseverance and optimism are amazing.  Her example reminds me that we are never given more than we can handle.  And through this all, she has developed her talents and her career.  The disease and her life have given her a story which she shares in a blog.  Eventually there will be a book — an example of courage and service for other caregivers and her legacy of service and love to her family.”

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