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YOU ARE MY SUNSHINE

“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 years.  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 had been 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.”

Originally posted 2010-08-01 00:42:16.

GRATITUDE PRAYERS

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.

Originally posted 2010-07-25 07:18:33.

AN ATTITUDE ADJUSTMENT

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 cook, does light housekeeping 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, Ben’s relief (granddaughter Kristina, who has been living with us, takes the night shift).  One of the surprise bonuses of having other adults in the house has been 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.

Originally posted 2010-07-17 21:39:56.

THIEVES IN OUR LIFE: THEY SUCK

“It sucks.”  That was the concluding comment on Facebook from my younger friend, Frank, after hearing one of his good friends had terminal cancer.  Both of them, still in their middle years, most likely had not experienced many incurable health issues among their age group.  Now, when one of them was stricken, it was a shock – and it sucked.  I couldn’t agree more.  Feeling compassion for all concerned, I replied, “Whatever it is that steals your health and time sucks.”

Steals:  That was the operative word.  Thinking about the countless thieves intertwining through our lives I couldn’t help but reflect on the time stolen from me and Ken by Alzheimer’s, not even to mention the time lost between my own mother and father, Ken’s parents, and his sister, Loretta, and her devoted husband, Mike.  Five of them victims of Alzheimer’s, and all of those good years, those productive years are gone – destroyed by this mind-boggling disease.  Alzheimer’s is a thief and quoting Frank, “it sucks.”

My focus is Alzheimer’s, but I certainly don’t mean to overlook the countless other diseases with their variations from which the world suffers, such as the aforementioned cancer.  To the list we can add heart disease, crippling arthritis, Parkinson’s, diabetes, lung diseases and a countless list which, undoubtedly, can fill pages.  No matter what the malady, all of them have a connecting factor: they steal one’s time, health and often life; thieves and they suck.

Let’s face it, though, thieves are not limited to illness; thieves — people, things or circumstances — are in and out of our lives constantly.  Remember the poem, “He who steals my purse steals trash, but he who robs me of my good name……….etc.”  Gossips are thieves, and he who took the purse is a thief.  So is the cat burglar who breaks into your house and steals your jewelry, TV and computer, and it’s a thief who stole your car.  (And at times that computer steals your time.)  Don’t forget the slacker at work who steals company time.  They who owe money and don’t pay it back are thieves.  Vandals are thieves, so are graffiti artists and litter bugs.  Their selfish acts cost someone else money, and taking or causing others to pay without consent is stealing.  How about the driver who steals your right-of-way or your parking space?  True, a small theft, but a theft nonetheless.  On a personal level the drunk driver whose thoughtless actions totaled my car is a thief removing from me and Ken our vehicle, our precious time, health, strength, stamina, causing endless costs and no telling what else is to come; they are all thieves and once again they suck.    

But that’s life, and being philosophical our sojourn here on earth does not come with a no-problem guarantee.  Life is sometimes the pits; it’s also wonderful and dangerous, carefree and burdensome, happy and miserable, sick and healthy, good and bad, lovable and hateful, joyful and sad.  Life is opposition in all things and even without a roadmap we choose to continue.  So yes Frank, even as we stand up and face the thieves in our life mustering every ounce of strength, energy and courage within us, there are times when it just sucks.

Originally posted 2010-07-07 22:10:04.

HOME — AND STUFF — IS WHERE THE HEART IS

Sabina drove me to and from my doctor appointments, and it was during one of my follow-up visits they discovered I had a blood clot in the groin area.  Discouragement must have shown on my face as my sympathetic doctor counseled, “It’s not unusual with injuries as serious as yours for things to keep going wrong.  It won’t be long before your body will regain its balance, and you will get better.  Meanwhile, you do need to be taking coumadin to keep your blood thin.  Hopefully the clot will dissolve.”  Good grief, I thought, another pill.  I wanted to cry, wondering if I would ever be well.

Returning to daughter Julie’s house I settled into a big leather chair and propped up my feet.  That too had to find balance.  With the clot, the doctor didn’t want my legs too high, nor did he want them too low.  He didn’t want the clot to travel, so it was difficult to know just what to do.  During the days that followed I kept my legs and feet level, watched TV, read, listened to a book on my I-Pod, and grew restless.

Following another visit to the doctor, I asked Sabina to drop by the house – my house.    Still covered with scabs and bruises, and wearing my neck brace I must have looked terrible – even a bit scary – to Ken.  It was my first visit home and the first time we had seen one another since the night of the accident.  He looked very old and frail, and somewhat gaunt, having lost several pounds which he really couldn’t spare. Apparently, his current glasses had been lost in the wreck and he was wearing a pair of old, huge horn-rims from long ago: spares kept in the back of the drawer in case of loss.  I hated them back when they were in style, thinking of them as “fly eyes,” and I hated them even more now.  If  I looked awful, he looked worse.

Showing no signs of recognition he boldly warned, “This is my house and you can leave right now.”  Dismissals were nothing new; nor were his personality changes and mood swings.  Had this rejection been a jolt I would have burst into tears, but I had coped with the ramifications of Alzheimer’s for the most part of six years.

What I found troublesome was having someone else in “charge” of my house.  Ken’s primary caregiver, Ben, a dear, loving and efficient man had made a lot of necessary changes for Ken’s safety and well being, as he was now a recovering patient.  I did understand that “need” outweighed my decorating preferences, and yet I wanted my house to be just as I had left it.

We didn’t stay long.  I got some stuff from our bedroom and returned to Julie’s.  I felt a little like a displaced person.

Settling back into the big leather chair, I propped up my feet and opened a magazine.  Flipping the pages my mind drifted back to home.  Days passed and as I began to feel stronger and not so fearful of the clot moving, my restlessness turned to boredom and thoughts of getting my life back became constant.  I mulled over things I could do without jeopardizing my recuperation, and I thought about my “stuff.”  Every so often I wanted to get something, or do something  – play my piano, which I do poorly, start some needle work, which I do well, read once again a favorite book, pull out photo albums representing a life time of living, get a few curlers for my hair or wear a different pair of shoes.   I realized that I was missing my stuff.   Totally unimportant belongings; material things — just stuff –yet important, and I thought about how important stuff is in making up a home.  First you need people, devotion, love, caring, and stuff; like the hook on the wall of your house, apartment, flat, tent or penthouse where you hang your hat.  Besides the hat  home is where you keep the rest of your stuff.  It doesn’t matter if stuff is Ikea, antiques, thrift store or yard sale junk; stuff is you, your likes, your personality and it’s part of the mix in making a house a home.

I had come a long way from Rehab where I cared about very little except wanting to leave.  I suppose my homesickness was returning because I was beginning to care, but this time the caring and the longings were actually for home  — my home.

At first I stayed overnight, then a couple of nights, and then several nights and finally I felt ready to stay permanently.  I packed the few things I had taken to Julie’s house, gave both her and Tim a hug and an inadequate thank you, cut the imaginary umbilical cord and came home.

Little by little I began to feel comfortable in my own house.  Upon leaving Rehab I did request a hospital bed, which Ben had set up in the family room after moving a few pieces of furniture into the garage.  With so many injuries still healing, and being very vulnerable I didn’t want to chance sleeping with Ken no matter how big the bed.

Ben was wonderful as he went about the business of caring for Ken and I realized I could relax, and it was okay.  No longer was I the sole provider of his needs and wants.  I could visit with or sit next to him and if he became mean and cranky I could go into another room, and not be concerned.  Ben was with him.  I rested when I felt tired with no interruptions.  Ben prepared meals, washed dishes, kept up the laundry, did light housekeeping and made sure everything looked neat and clean relieving me of my normal responsibilities as I continued to heal.  Meanwhile, I zapped through 300 emails, wrote thank you notes, reclaimed my financial books from Sabina (with another inadequate thank you) and returned to writing my blog and my books.

In June I picked blackberries from my own backyard and sat on the steps while berry juice ran down my fingers staining them a deep purplish red.  I didn’t care, they were my blackberries, my hands and my stains.  Inside my house I could sew, bake a cake, and give Ken a quick kiss if he happened to be Ken, pull a familiar plate from the cabinet, shower in my own bathroom or wear a different pair of shoes.  I was home, and finally it was where I wanted to be — with Ken — for however long this chaper of our life together lasts; home with him, the caregiver, and all of my stuff.

Originally posted 2010-07-04 00:42:19.

ICE AND THE PITIFUL BIRD

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 one’s children.  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, this 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 well into the night until Keith arrived.  Watching the night turn to day his shift was finished when Sabina, his wife, arrived to relieve him as soon as she dropped their daughter off at school.

Keith is a no-nonsence kind of guy, the middle son, a fixer, the organizer, the silent one who steps forward to calm the storm. Using the same organizational skills he uses in his business he scheduled the shifts and balances all else that falls to pieces when one’s world  tips upside down, advising his business associates he was taking a two-month leave.  He then focused on his dad, our home and finding a cregiver for Ken.  With my husband still in the hospital that chore could wait until Deborah arrived from Utah. Then, without hesitation, Keith said to his sister, “Your job is to find a caregiver for dad.”

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.

Originally posted 2010-05-24 05:19:40.

KUDOS FOR MY KIDS

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 as 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 all of 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 Keith, 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 them: 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 mom and dad.  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?

Originally posted 2010-05-13 19:55:14.

SOME KIND OF ACCIDENT?

“Ow!  That hurts my back,” I groaned, not knowing where I was, who was moving me or why.  Aware of bright lights, sirens and men’s voices, I heard someone say, while enclosing my neck in a brace, “Broken neck, possible broken leg.”  I thought, “Are they talking about me?  I don’t want a broken leg, much less a broken neck.”  I had no way of knowing what had happened, but suddenly the thought ran through my mind that I had been in some kind of accident.

Across the inside of my head stretched a blackboard which appeared to be blank.  Slowly, printed in white, as if someone were writing with chalk, there flashed a phone number.  Call my son,” I mumbled, repeating the numbers before me.  Then, as surely as I knew Keith’s phone number, I repeated both Ken’s and my HMO medical numbers.   “I have a pacemaker and my husband has severe Alzheimer’s.  Don’t let him wander away,” I added, somehow knowing he would need all of the important information.  “Can you tell me your name and birth date?” another voice asked.  I answered his question and gave him Ken’s name and birth date as well, then faded into an unconscious place.

Obviously, the driver of the maverick car did not correct as I had assumed.  Instead, his vehicle must have remained in the diagonal line aimed in my direction.  I was like a sitting duck in a shooting gallery, the trajectory of his set course was fixed on me.  He couldn’t miss.  In retrospect, who could have known he had spent the afternoon drinking and was drunk out of his mind?   Authorities could only calculate the speed of his car as it broadsided my SUV just behind the driver’s seat.  Out of control, the maverick bounced off before slamming once again into the rear of my vehicle, spinning it wildly before coming to a stop — facing in a southerly direction.

Inside, I had been unaware of  impact, the first blow no doubt knowking me out cold.  I can only speculate on what followed.  The seat belt, which I had buckled, failed.  I believe it retracted on impact, and in so doing snapped the metal-locking end into my lip, cutting it just left of my nose at the same time knocking out one bottom tooth.  The air bag deployed, but without the seat belt holding me in place it was ineffective.  Lacking any restraint, I became air born and was somehow hurled through the driver’s side window onto the street where I lay until paramedics arrived.  (By comparison, Ken’s injuries were minor, but still required several days of observation in the hospital.  Restrained, confused, combative and unhappy, our concerned children insisted he be released for better care at home).

While my family waited and worried outside the trauma unit, I was finally stablized by a group of dedicated and extraordinarily skilled doctors following an hour and a half  of intense effort.  Medically, I was a mess.  The team of professionals battled shut-down kidneys, stabilization worries; there were cuts, contusions, blood loss, massive bruising, broken ribs, a broken neck, head fracture with concussion and I had inhaled glass shards while exiting through the closed window  They worried I could suffer a stroke or be paralyzed as the neck fracture was a top vertebrae protecting vital areas and nerves which commanded life itself.

During a moment of consciousness I requested a blessing of healing from the clergy of my church.  Their anointing words of comfort, hope and promise fell upon me like a warm blanket on a cold night.  Finding peace among the turmoil I also found rest, allowingy myself to let go and let God further work His  miracles.  When awareness allowed me to ponder, I reviewed my broken and bruised body and while I will never dismiss the seriousness of my many and varied injuries, I am still amazed that I only suffered a broken neck, head fracture and broken ribs.  In actuality, I should be dead.  I can only believe there must be some part of my life’s mission which has not been completed.  Why else would Heavenly guided unseen hands cushion my descent to the pavement?

Originally posted 2010-05-09 00:35:36.

A WINTER’S EVE — FEBRUARY 15, 2010

A WINTER’S EVE — FEBRUARY 15, 2010

It was still daylight when Ken and I left our house to do a bit of shopping on that brisk Monday.  Daylight, yes, but darkness comes quickly in winter.  I had hardly parked the car in front of Radio Shack as dusk fell.  I needed only two small items: a new cord for one phone and an extension line for another, and then we were off to enjoy dinner with our friend, Jayne, at 6:30.

Getting Ken ready and out of the house to go anywhere was becoming more and more difficult as he slipped further into Alzheimer’s.  Nevertheless, he always liked getting out once he was dressed.  I believe winter is often a problem with dementia and related illnesses, the season having so much gloom — so few blue skies and sunshine.  The world had been very gray this season with lots of rain, which California has so badly needed, but the storms came one following another, often without a break.  Ken does better when the days are long, light and bright.  Each year, it has become more of a struggle getting through the dark months.  I’ve often said December 21, is my favorite day of the year because the sun begins its return journey “home” to our house.

I looked at the time — a little before six — time enough to stop a few doors from Radio Shack and pick up a few more items at CVS Drugs.  While we were out, we might as well get everything on my list, I thought to myself, and no crowds.  I’ve always liked to shop during the dinner hour; it seems that everyone is either at home cooking or eating.  With no one in line, we moved along quickly, and then headed back to the car.

Inside our older 1995 Ford Explorer I buckled my seat belt.  “Do you have your seat belt on?” I asked Ken.  “Yes,” he answered, pointing to the belt around his waist.  When his focus is on the belt holding his pants in place, I know I can’t change his thinking.  I don’t even try.  Unbuckling my own seat belt, I leaned over with one arm around his back and the other in front of him, I handed my left hand his seat belt, guiding the locking piece into its slot.  Then, I rebuckled my own seat belt.

I made ready to exit the parking lot, waiting until traffic from both directions had cleared, and then began my left turn, crossing the clear west-bound lane, flowing easily into the medium strip, and then turning and merging into the inner east-bound lane.

Glancing to my left I noticed the solid double line of cars coming from the direction of the freeway.  How odd they looked in the blackness — almost surreal.  Blending together, the moving vehicles appeared to be a horde of great prowling beasts with enormous yellow eyes, appearing almost liquid in their pack-like movement.  Suddenly one of the automobiles — a maverick of sorts — pulled out from the mass of cars, crossing into the medium lane.  I wondered if the fool planned to pass the unyielding line of west-bound vehicles using what was an illegal passing lane for him, but also noted he hadn’t made the necessary hard-right turn which would have placed him parallel with that line of traffic.  Rather, he was pointed in a diagonal path toward me.  I was not concerned as he was a distance from me, with time and space to correct his direction.  Convinced he would make the adjustment, I turned my eyes to my own traffic lane.  Within mere moments my world went black.

Originally posted 2010-05-06 20:15:29.

Sometimes It Just Takes A Good Cry

This should have posted previously. (March 10, 2010) I wrote it just before I left, over a month ago. I post it now, so that others will know caregiving, like life has many different kinds of moments. None last very long. You just have to go with the flow. – Debbie Schultz

This morning the sun shines gloriously after a hard rain. Surrounding me the world is bright green, and sparkling blue, with sun glinting on the delta from my son’s backyard.  All seems right with the world. I will be on my way home in a few days; back to Utah and my mountains. The snow is gone from the streets and spring is peeking through, or so my husband says. These last few days I have really been homesick and it feels good to say that Utah is my home, an ambiguous phrase that I couldn’t say before I left a month ago.

Taking care of my Dad has been one of the most challenging experiences I have had in my life.  I did the best I could, and I could not have done anything else. Whether the systems I have set up work remains to be seen.  He has good, kind people caring for him in his home. They may not be able to meet his needs if he continues to get more combative and difficult to keep clean. Unfortunately another one of the evils of this disease is the patient is often his own worst enemy.

Before I cared for my Dad, I thought families who put loved ones with Alzheimer’s in institutions were somehow copping out. Now I know that each family makes their decision based on their own resources and abilities. For some it is an easier decision to make than others. I don’t know what my father was like right before the accident, I just know that caring for him has been really difficult. I cannot, however, excuse the treatment of turning people into vegetables, hoping they die quickly. I feel he was treated that way in the hospital: sedation, catheterization, tube feeding or no feeding. The will to live is given up very easily in those circumstances.

What the answer is, I don’t know. I feel a huge responsibility in leaving. I know when I get home I will worry about how he is getting on. On how both of my parents are coping. If the caregivers work out and can handle both of my parents? Will my mom be able to heal while still worrying about my father? I know I will be back soon, but I am not independently wealthy and I have a family and business to run in other places.

So yesterday among all of these conflicting feelings, and burdened by the enormity of everything, and the difficulties continually surfacing regarding my father’s care, I had a good, hard sobbing cry. And then I watched some tender movies and cried even more. Like this morning’s early rain I now feel cleansed, and I’m ready to continue forward doing the best I can, while trusting in a God who sees the whole situation and will someday answer all of  my questions.

Originally posted 2010-04-28 03:54:10.

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