THE DEMENTIA UMBRELLA

 Several years ago, when the husband of my friend, Madalyn, was well into severe Alzheimer’s and Ken’s disease just beginning, the two of us went to several support group meetings.   The speaker one evening was a health-care professional; the title of her presentation was dementia.  How often both Madalyn and I had heard the word interspersed with Alzheimer’s, making us wonder if our husbands had Alzheimer’s or were they demented, having dementia.  Were the guidelines established enough that we could tell one disease from another?

“Dementia,” the speaker explained, “is the umbrella, and under that umbrella the medical community is placing what they believe to be related diseases, even though some people are diagnosed as having dementia.”  She went on to explain dementia as a group of symptoms caused by changes in brain function, or a decline in cognition.  Though defined, it still left us a bit baffled.  However, with so little known about the actual workings of a diseased brain and other neurological disorders, dementia as an umbrella seemed to make sense, especially when the speaker placed Alzheimer’s, Parkinson’s, Lou Gehrig’s disease (ALS) and MS (multiple sclerosis) under the umbrella.  No doubt she included other diseases lesser known to Madalyn and me totalling more than 75 in all, but the link placing them under one umbrella made good sense.  Whether the dementia symptoms may later change and develop into any of the encompassed diseases wasn’t a part of her topic, nor am I a medical person who could make such a determination, but it would seem reasonable to presume that the answer could be “yes.”

Over these past six years, as I have journeyed with Ken into the fog of Alzheimer’s it seems as if the cases under the umbrella are becoming almost epidemic.  I often hear people say, “It’s because everyone is living longer.”  That observation conjures up another burning question.  Is it inevitable that living longer will bring the majority of four score and younger people into the hopelessness of brain disease?

When Ken and I first married we were best friends with three other couples.  We were not a group, but they were best friends, nonetheless, with us, and we have kept in touch with all of them through the years.  Today, two of the women and two of the men are under the umbrella diagnosed with short-term memory loss, two with Alzheimer’s and one with dementia.  All of the disorders began somewhere in their mid to late 70s.  Yet, with our large circle of friends and acquaintances I have also observed early-onset of Alzheimer’s and Parkinson’s, and one death from ALS.

The mother of Barbara, my friend with short-term memory loss, was sent off to a state mental hospital in her mid 50s with what they diagnosed as brain deterioration.  Was it actually early-onset Alzheimer’s?  Earl, who has dementia, is the son of man who suffered most of his life with severe Parkinson’s.  Our  daughter, Debbie, had a favorite beau during their teen years who tumbled dramatically into full-blown Parkinson’s in his early 30s, as did celebrity Michael J. Fox.

With the power of his celebrity Fox brought world-attention, and hopefully more research, to his disease.  Of course, the 40th president of the United States, Ronald Reagan, brought the same extraordinary attention to Alzheimer’s during his 10-year battle with the disease, as did movie great Charlton Heston.  People no longer talk about a second childhood, senility, brain deterioration or sun-downer’s disease.  These umbrella diseases — with people of all ages becoming victims — are no longer swept under the carpet to be ignored as just some old folks’ ailment.

If there is a question here it would be:  Will there be a breakthrough in finding a cure, or at least management for these dreadful diseases?  If so, when? And, if a reliable treatment for AIDS was found in a relatively short period of time, what’s holding up research for The Dementia Umbrella?   According to a recent paper from Johns Hopkins the future looks alarming for 1 out of 2 people who will get Alzheimer’s if they live long enough.  That’s 50 percent.  Research and solutions are musts for the coming generations.

Presently, there are no real answers, but there are some quiet observations.  In watching my friends and reading about Fox, Reagan, Heston and others, their spouses are incredible as they walk with, sit by, and worry about those they love.  Collectively, they have all remained devoted which is not only inspirational, but encouraging to all of us caregivers traveling that same unfamiliar path.  The battle which goes on under The Dementia Umbrella can bring out the worst in people or it can bring out the best.  I don’t know everyone struggling under this covering, but those I see, read about and know are phenomenal human beings. Kudos to these caregivers everywhere.

Originally posted 2010-08-30 02:10:43.

A GRATEFUL RECEIVER

My mother was the most charitable person I have ever known.  From the time I was a little girl I remember watching unknown strangers standing at our front door while Mother made a sandwich as the stranger waited, or she fed another lunch in exchange for washing our 3rd-floor windows both inside and out.  There was never a thought these men were anything other than what they claimed – down, out and hungry — as she allowed them to work for food during those Great Depression years. 

It wasn’t as though we were much better off with my dad doing piece work for a small steel company.  When the order was filled he was sent home with his few dollars to buy food, pay the rent, and hopefully pay the utilities. 

Yet my mother managed to stretch the meager dollars to care for us and to help the less fortunate.  She and my dad prided themselves on never going on “Relief,” which was the welfare program of the 1930s.  They were fiercely independent, and, perhaps, to a fault proud, but that’s who they were.  They could take care of themselves and they did.

During World War II and the peaceful, economic healthy years which followed, I watched my mother continue her service to mankind through our church and other philanthropic organizations.  Nor did she choose to treat herself to some delicacy at the soda fountain or bake shop.  Rather than be frivolous she would take the money saved and donate the coins to a worthy cause.  Mama always felt fortunate and blessed to be self-sustaining.  This pattern continued for both my parents all of their lives.

One day, late in life, Mama was taking a bundle of newspapers to the garage for recycling.  Stepping down the one step of their entryway, she lost her balance and fell.  Bruised and bleeding she picked herself up from the cement, grateful no bones were broken.  Stalwart that she was, my mother insisted ice packs and a little rest were all she needed.

The next day, John, a representative from our church stopped by their home for his regular monthly visit. Finding her battered and bruised he asked what had happened.  Hearing Mama tell of her fall, he immediately said, “Irene, you need a hand rail at your front door.”

Sounds of a hammer and saw awakened my parents the very next morning.   Investigating they found John building the needed hand rail.  “I can do that,” protested my father.  “Now you won’t have to,” answered John, continuing his project.  “Then let me pay you for the materials,” Dad insisted.  “You can’t afford me,” replied John.   Humbly my parents accepted their gift.

Later my mother told me that she was surprised at her feelings of submission – of allowing someone to fill a need for them.  Being the giver all of her life she didn’t quite understand feeling so good about receiving. 

Then she thought of the triangle of doing God’s work.  “Without people in need, and we were in need,” she explained, “other people might never have the opportunity to serve, to experience being charitable. With God as the director and the third component of the triangle, I became part of this good man’s service.  Instead of feeling embarrassed about accepting John’s offering I felt humble and grateful, and very warm inside.  I guess part of my learning was to be a grateful receiver.”

My mother’s last years took her into the depths of Alzheimer’s.  Slowly she faded from the vibrant woman she was into a child I could only imagine I might have known.  A little temperamental and stubborn at times, caring for her was still relatively easy.  Her walk with the demon of diseases took a little more than four years before she passed on peacefully in her sleep. 

In another dimension in which my mother now lives she is probably musing about the last chapters in her book of life as she continued to grow in her appreciation of being a grateful receiver.  Knowing my mother, however,  she’s also back doing God’s work: charity, which is the pure love of Christ. 

Care giving for a loved one who suffers from Alzheimer’s is of that same charity, but is so often a thankless job.  The thought of being part of God’s triangle somehow escapes as the tedious days and endless months and years continue with no relief in sight.  And gratitude for this horrible disease?  I am at a loss to find any.   Yet, during the time of my accident recovery I have found endless gratitude, especially in finding such capable employees to care for my husband.  Both of Ken’s caregivers, Ben and David, have my utmost appreciation.  At the end of their day, I would imagine they feel downtrodden and exhausted, but they continue caring for Ken with love and kindness.  And while Ken is the recipient of their goodness, I am the one filled with gratitude, making me the grateful receiver.

Originally posted 2010-08-23 06:59:56.

WINDOWS TO THE SOUL

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.

Originally posted 2010-08-16 07:16:34.

MEAN MR. NICE GUY AND GAL

During her recent visit and before Marvalee sang her songs for Ken, she and I talked about the two people we loved, their Alzheimer’s and where it had taken them.  “Mama has become so mean,” Marvalee lamented, saddened by her statement.  “I guess deep down inside, she had a mean streak in her personality.”  I understood why she might reach that conclusion.  It’s hard to watch these people who have led such rich, full, and often charitable lives become less than who they were, eventually becoming virtual strangers.  Strangers we often don’t like.

“Oh Marvalee,” I said, “You mother didn’t have a mean bone in her whole 105 pounds.”  I remembered Eva strumming her ukulele and singing, dressed in a colorful muumuu, a flower decorating her dark hair which flowed free as a girl and as a mother of four was styled into a bun.  Even after the band, led by her talented husband Ed dissolved, she put on her muumuu, placed a flower in her hair, picked up her ukulele and spent the day at rest homes and care facilities entertaining the patients.  “Your mother was a kind, gentle woman,” I told my troubled guest.  “She isn’t a mean person, nor is Ken – at least not in their hearts.”

I recounted an afternoon when I had taken Ken with me to buy a new refrigerator shelf for one of our rentals.   It was a parts store where we had become frequent customers.  Tony, the associate looked up our needed replacement chatting as usual, almost bantering to Ken as he had in the past.  Silence prevailed, and being puzzled Tony glanced at me.  “Alzheimer’s,” I mouthed.  Puzzlement changed into dismay as he said, “I’m so sorry.  He’s the nicest guy in the world.”  I nodded in agreement as Tony wrapped the shelf and volunteered to carry it to our car. 

 “Let me tell you who the mean ones are,” I continued, recalling an accident of many years ago when the four-year-old son of our mutual friends ran between two parked cars and was struck down.  Slammed onto the street by an oncoming car, Robert was seriously hurt.  At the hospital, he lay unconscious, the doctors doing all they could possibly do to stabilize him while his parents hovered nearby wondering if he would even survive.

“Before I finish Robert’s story, let me remind you of my own son ,Kevin, who, at 18, also suffered because of a disastrous automobile accident.  Not like Robert’s accident, but badly injured when he was thrown from a little VW onto a highway in the middle of Idaho.  But like Robert, he too lay unconscious while the doctor in a very small town hospital worked to save his life.

“So what did these two accidents have in common?” I asked.  Marvalee listened while I continued.  “With Robert stabilized, but still unconscious he called out words like, ‘shut up,’ and ‘stupid.’  Words which his parents had told him were not nice words to use.  To a four-year-old, they were profane.

“Years later when my 18-year-old lay unconscious, he too called out profanity.  His naughty words, however, were much more advanced than those of Robert, and typical of a young adult male. As concerned as we were about the seriousness of his condition,” I explained, “Ken and I were a tad embarrassed as Kevin blurted out all the cuss words he knew turning the air in the hospital a bit blue.  ‘Don’t be embarrassed,’ the doctor counseled, ‘that’s base man calling out.  He’s hurt and he’s angry, and he’s venting.’  Robert had done the same thing with his words of ‘stupid,’ and ‘shut up.’  Even though he was just a boy, base boy was angry, hurt and venting.”

Summing it all together as best I could I assured Marvalee that the meanness was not some long-suppressed personality trait of Ken or Eva, but base man and base woman.  There are times when they are not only confused, but angry and no doubt frightened; both of them locked away in a mad world of nothingness.  Their meanness allows them to not only defend themselves, but being mean is also a way to vent.

 “Of course,” I concluded, “the application of base man and base woman as part of the Alzheimer’s disease is only my opinion.  But I take comfort in believing that both Ken and Eva are not fundamentally mean, but have always been two of the nicest people in the world.”

Originally posted 2010-08-11 07:30:26.

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.

IT’S A CONUNDRUM

I was curious about drunk driving in California and wondered what I could find on the internet which might shed some light on this state and national problem. Finding some information, I did feel a little disappointed that statistics on that particular site hadn’t been updated since 2006. Perhaps statistics don’t change that much. What I did notice, however, were pages and pages of attorney’s advertising to defend the drunk driver. I found that interesting and yet a little troubling. I realize that everyone is guaranteed due process, but it was almost as if there was more concern for the intoxicated driver than for the those who might be victim to his/her recklessness, so I surfed a few more sites.

Finding more statistics, but of another nature, the new page calculated that three out of every 10 people will have an encounter with a drunk driver at least once in their lifetime. Nearly one third; that’s a lot of people whose lives can, are and may be altered by the recklessness and selfish act of drinking and driving. Recalling my youth, and another accident, I realized I have had two encounter’s involving the deadly practice.

A boy friend (I’ll call him Hank) of my oldest sister, Polly, had an adorable small car, a very pre-war model coupe with a rumble seat. One evening he invited me, a friend and my other sister, Janet, for a ride. We got to sit in the rumble seat – so exciting – as that was the desire of our hearts. The three of us – I was 11, Janet 14, and my friend 12 – wedged ourselves into the tiny opening located where most cars have trunks. With Polly and Hank in the front, we sped down the hill from where we lived, the wind already blowing our hair in every which direction. Laughing, we soon came to one of San Francisco’s main southern thoroughfares; and at our point of crossing it was a very wide section of Army Street. With the traffic light in our favor, Hank ventured forward only to notice one lone car’s headlights coming straight toward us crashing broadside into the sturdy little car. The three of us in the rumble seat bumped our heads together a few times, our tight fit into the seat no doubt holding us in place. Running the red light, the driver of the other vehicle and his lady friend were both drunk.

Hank called my father and the police from the corner store and we waited for dad on the sidewalk. Hank and Polly dealt with the accident and police report, while my dad took the three of us home. Our adventure was short-lived, and other than a good couple of knots on our heads we were all just fine.

Drunk driving is nothing new and has probably been around since before Henry Ford’s Model A; a timeless problem unresolved.  By comparison, the state is totally on top of people having a disease which might have an affect on their driving, but it seems they can’t get a firm and lasting grip on driving under the influence of mind-altering substances.

Upon the Alzheimer’s diagnosis, Ken’s neurologist told us that by law the DMV must be informed of his condition. That was in January and by March, he received his letter requiring that he be retested. We both felt confident as Ken had renewed his license less than a year before and had passed with flying colors. However in just eight short months deterioration of his memory was becoming evident. Watching him from across the room at the DMV, I could see the puzzled look on his face. Undoubtedly, as he read the multiple choices, he had already forgotten the question.  He failed the written test so miserably they disallowed him taking a driving test. His license was revoked – forever.  He hasn’t driven since March of 2005, and that was a good thing; better the DMV than me concluding he was no longer a responsible driver.

My daughter, Julie, and I talked about the statistics and the many problems of people driving under the influence. The term DUI covers not only alcohol, but drugs, legal or not, or any other substance which might impair one’s driving ability, and yet many driver’s believe they are the exception. “Legislate more laws,” was Julie’s answer. “They don’t obey the ones already on the books,” I answered, adding that I had listened to young and old alike who carried a medical marijuana card and believed it gave them special permission to drive immediately after dragging in a few puffs of pot to dull their pain.

Back on the internet, one site claimed that sobriety checkpoints and other enforcement tactics would help, especially around holidays; and more education. When people know better they do better. “Sometimes,” was my answer.  Another page suggested, “If you want to do something about drunk driving, get involved.” Candice Lightner became involved when her 13-year-old daughter was killed by not only a drunk driver, but a hit-and-run drunk driver (who was eventually caught). He was 47 years old and my drunk driver is in his late 50s. They were both old enough to know better.

Lightner founded Mothers Against Drunk Driving: MADD which has become a national organization. Through legislation, education and enforcing legal age drinking MADD claims to have dramatically reduced drunk driving. Yet, if you happen to be a statistic, it doesn’t matter what the reduction. For me, being a victim is 100 percent. So what can possibly help us as a state and as a nation in ridding our streets of drunk drivers? Being involved, enforcement, education or more legislation – or what? “It’s a conundrum,” concluded Julie, “It’s a conundrum.”

Originally posted 2010-07-11 23:53:44.

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.

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