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Posts Tagged ‘sisters’

DNA molecule

Only time can tell whether Alzheimer's is transmitted through the gene pool, in the mean time live life to its fullest.

My mother was one of ten children: six girls and four boys.  Mother, Irene, and one sister, Elaine, were victims of Alzheimer’s.  It would appear that two out of the four boys were also stricken,  all developing AD in their later years. Keeping with those same statistics, several of the siblings died at or before they reached 60, with one in her 40s. Whether some of them would have succumbed to Alzheimer’s is pure conjecture.  Yet, the four out of 10 is 40%.

In retrospect, I would say the Alzheimer’s gene came through our grandfather who died in his 50s as a victim of pernicious anemia.  Possibly, AD would have come to him later in his life had he lived, but that, of course, is another guess.  It did not come to our grandmother who died at 84. She could be stubborn, a bit cantankerous, and a little forgetful, but her quirks didn’t seem to fall under the guidelines of anything from the Dementia Umbrella.  In that same search of the past and from the stories and memories my mother told about her early childhood including remembrances of her mother, I do believe my grandmother was afflicted with attention deficit disorder, ADD.  So far, and not to my knowledge, ADD does not fall under the Dementia Umbrella.

My grandmother was proficient, though, in being able to run a somewhat organized farm life.  In addition she had her own system of birth control spacing her babies every two years (having at least one miscarriage following the birth of Irene leaving a four-year space between her and the first son).  My grandmother’s last child, a boy, was born just six months before my older sister, making him more like a cousin than an uncle.

Mama’s sister Elaine seemed to have been a little off center all during her adult life.  It wasn’t as if she lacked intelligence, it was just the fact that she seemed to be what my sisters and I called, “a little bit dingy.”  She and her husband were childless, and, perhaps, that may have influenced her life of self-importance and indulgences.  With no one to be concerned with except Elaine, her world appeared extremely limited to us.  She seemed to skate on the surface of life like the water skitters I remember buzzing over the top of stagnant pools as the creek dried up near our grandparent’s property.  Our aunt was limited in her scope, never venturing beyond where her focus was, paying no heed to anything above or below the surface of her tight, little world.  Signs for actual AD diagnosis began to appear in her 50s suggesting she was a victim of Early Onset Alzheimer’s, and possibly before.

Her husband Ray cared for her at home, with the help of my sister, Janet, for as long as he could manage. When he could no longer cope, they reluctantly found a good full-care facility where Ray hovered over his beloved wife spending every moment possible.  However, during his visits it wasn’t at all unusual for Elaine to dismiss him in favor of the familiarity of other residents which left her devoted husband shattered.  Eventually, even the familiarity of the familiar became illusive for Elaine and little by little she slipped into the nothingness of AD leaving only her shell which seemed to cling to life with the tenacity of a last leaf.  She outlived Ray by most of her 10-year confinement as Janet continued to supervise her care.

As more and more is learned about the diseases falling under the Dementia Umbrella, I see concern looming over the horizon when Ken’s and my adult children speak of the possibility of AD in their years ahead. The knowledge that both sides of their paternal grandparents have victims, and a few of Ken’s first cousins developed full-blown Alzheimer’s the future can appear daunting for the next generation.  There is fear: of course they have fear and the ever-present question, “Will I be a victim?”

As we continue our discussions I mention that the jury is still out on me and my two sisters.  I get the glance and then a possible eye roll.  “Mom!  You’re not going to get Alzheimer’s.  What do you mean the jury is still out?”  Then I remind them that my mother was in her mid-eighties when we saw the first signs.   I also remind them that there is no history whatsoever of AD existing in my father’s family and their longevity also extends into a near century.  “Hello.” I tell them in an effort of reassurance, “The genes which make up the life force in you – my children — include the strong genes of my father’s family as well as all of your other relatives.”  As our p.c. doctor mentioned when I first asked about AD and Ken the wise doctor said, “At conception, there are numbers beyond measure from which to draw the genes for a fetus.  I would say that Ken’s chances are possibly yes, and possibly no.”

The wise part from our doctor’s declaration wasn’t said in exact words, but I see it now.  He meant for me and Ken to live our life together to its fullest and deal with the problem if and when it arrives, which we did.  Even as the disease progressed we lived our lives to their fullest.   My wonder – and worry — about worry is, “Can worry cause more worry – and that worry become a problem – creating an illness through worry — thus triggering AD into a self-fulfilling prophesy?”  How much bombarding of our psyche with negative worries can a psyche endure without succumbing to that worry?  Again, a question without answers.

Statistics tell us that if we live long enough 50% of the population will have Alzheimer’s.  That’s one in every two people.  Presently, there aren’t many options:  testing is the most promising – if you can call it promising – and if you want to know the answer.  If you know, then early treatment is a good thing, and even that’s not without questions.  Perhaps we should all take a deep breath, relax in the moment — and in that moment – those moments – don’t worry, be happy.   Then burst into song with Doris Day as she belts out “Que Sera Sera,” or in other words, “What will be, will be.”

Photo courtesy of  http://www.flickr.com/photos/wheatfields/with/2074121298/

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treadle sewing machine

Alzheimer's took away even the memory of the sound of a sewing machine for a professional seamstress.

I could barely hear it as my mother asked, “What’s that humming sound?” Pointing in the direction of the bedrooms she continued, “It’s coming from over there.” Having just arrived, I paused, and with neither of us saying a word I too wondered what we were hearing.  Following the hum it led us into a bedroom where there were two large oak dressers, a few chairs and an industrial sewing machine from her years of owning a custom-made-fashions shop with my sister, Janet, in San Francisco.

Mama was fast approaching the middle stage of Alzheimer’s with lots of cognitive loss, but she periodically remembered bits and pieces from her past when something familiar triggered her memory.  Apparently, she had passed by the bedroom earlier that morning, and recognized her sewing machine.  Or perhaps it was the small rip in her slacks which needed to be mended that brought her to what had been so familiar. Sitting down in front of her old “friend,” her hand could have automatically reached over and flipped the switch turning on the motor of her outdated, but still efficient, sewing machine.  With the fickleness of Alzheimer’s her reasoning probably vanished no doubt leaving her to wonder why she was sitting there. Puzzled, she got up and walked away – leaving the motor running.

Conjecture for sure, but AD is often guesswork.  I turned the motor off and pulled the plug from the wall knowing that if she had gone further in an effort to mend her slacks, the speed and power of the needle could have seriously damaged her fingers.  With the humming noise stopped my mother returned to be with my father while I lingered.  Nostalgia swept over me as I rubbed my hand over the solid wood “apron” which housed the “beast” as Janet called the powerful machine.  My thoughts were of Mama and the woman she was other than a parent with three grown daughters – the woman she was before AD had ravaged portions of her brain.

My mother, Irene, had been blessed with endless talents: articulate, funny, inventive, tall and beautiful to look upon and delicate in appearance, but strong in every practical sense.  She also had an artistic flair that touched just about every aspect in the field of fine arts.  Phenomenal designs or a painting quickly took shape as her pencil, charcoal stick or pastels skated across a blank sheet of paper.  These natural talents were gifts with which she had been born, and developing them to their utmost had been one of her goals.

While artistic design was her passion sewing came naturally from a long line of women progenitors; each woman teaching her girls the skills and practicality of stitchery in all of its forms. During the Great Depression, my mother supplemented my father’s sporadic and meager income by sewing custom-made clothes for women of means.  Her skills plus a designer’s genius and fitting expertise caused her customer’s to exclaim, “Irene is a wonder.” My sisters and I agreed, and we all looked forward to our 10th birthday when she would begin teaching us dress making and tailoring on her old treadle Singer sewing machine.  My two older sisters had already reached that pinnacle.

Being the youngest, I could hardly wait to be ten.  With small pieces of fabric from Mama’s scrap box I envisioned what dresses I could make for my dolls once I learned to sew.  Every so often when my mother was out of sight I sat in front of the sewing machine with my pieces of cloth and tried stitching them together.  Watching Mama many times as she worked, I knew the steps about putting the pressure foot in place, giving the wheel a pull and coaxing the treadle to move with my feet.  I could never do it right – the treadle thing –back and forth, back and forth so the pulley turned the wheel in the right direction.  I failed each time leaving the threads from the needle and bobbin tangled or broken.  Quietly, I would slip away never telling anyone of my attempt, but I’m sure Mama knew I was the culprit who kept messing up the threads.  I wondered if I would ever master the foot rhythm.

Months before my 10th birthday I came home from school to find Mama removing the contents from the sewing machine’s drawers.  I sensed it was more than just cleaning and asked what she was doing.  “We’re getting a new sewing machine,” she happily informed me, “a new electric Singer.”  With instant tears spilling from my eyes I plopped down in a nearby chair. Feeling betrayed, I could not share in her joy, and tears came because she was trading in the old treadle for some new-fangled electric machine that disappeared into a desk.  I just knew I would never be allowed to touch – much less sew on it until …. I couldn’t even imagine when.  My dolls would be forever naked.  “Now I’ll never learn how to sew,” I sniveled.

Placing the drawer back into its slot, Mama rose from her chair and knelt down beside me.  “Now, what makes you believe that?” she asked.  “The new sewing machine is too good for me to use.   I might break it,” I whimpered.  “How would you like to be the very first one to sew something on the new ‘Singer?’” Mama offered.  My tears turned off like an empty cloud.  “Could I – really?” I questioned, “even if I’m only nine,” not sure of what I was hearing.  “You will be the first,” she promised – and I was.

With my hand still resting on the “beast” I remembered my wedding dress designed and sewn by my mother, and then there was my graduation suit of light-weight pink wool featuring a peplumed jacket trimmed with black cording on the collar, cuffs and the small strip of belting attached at the waist back.  It was exquisite, and when I wore it I was stunning.  My mother had taught me to sew nearly as skillfully as she, but for special garments there was nothing like Irene’s original creations.

Standing there musing I wondered when she had stopped being that fabulous, creative person I had known.  What had been her last sewing project and how long since she had painted a meadow filled with blossoming apple trees or the ocean’s waves pounding the shore?  When was it that Alzheimer’s had stilled her artistic fingers, devouring the brain cells which fed her talents?  What subtle variations about his wife had my father noticed that brought about his decision to change their comfortable life?

My parents had moved from their wonderful retirement home in the country outside of Sebastopol, California in the late 1980s when Dad admitted they could no longer be so far from family because of Mama’s declining mental health.  Finding a house just a few short blocks from me and Ken was the perfect solution to their needs.  My father had always said, “I don’t want to live with you, just near you in our own home.”  With help a few minutes away he was able to care for most of her needs, or call us in an emergency.  Nevertheless, I didn’t wait for a call. Instead I stopped by at least once a day, knowing how lonely he was, and to make sure all was well.  Important too – I doubt my father would have heard the beast’s motor running with his poor hearing.

I was glad to be there for them, and within the next few years it would be more of the little things, the gradual changes made by Alzheimer’s insatiable appetite that Dad and I would observe in caring for my mother. Irene would regress from the woman we fondly remembered, spinning down through the years of her life eventually becoming a sweet-natured child who spent afternoons with her mother who — she insisted — was me.

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From the time I was old enough to remember hearing adults shout “Happy New Year,” I believed there was something magical happening as the clock chimed 12:00 on December 31.  Furthermore, I was missing it all because I was a child and had to be in bed early.  Then one year my parents went out with friends on New Year’s Eve leaving my sister, Janet, and me in the care of our older sister, Polly, who was 16.  At last, Janet and I knew we could stay up until the bewitching hour because Polly was caught up in her own reverie of sadness in not having a boy friend at year’s end. 

The two of us knew there must be noise to welcome in The New Year so Janet fortified us with metal dish pans and heavy spoons.  Polly didn’t care what we were doing, taking to her bed early.  My favorite big sister planned we would march up and down the sidewalk in front of our building (the fourth floor being our home) banging our dish pans at the first sounds of celebration.   At 12:00 we heard horns honking and whistles blowing in the distance, but that was all, so we high stepped our march and drummed our pans more vigorously.  Still nothing.  “Is that all?” I whined with great disappointment.  “Come with me,” ordered Janet.  I followed her up the flights of stairs into the kitchen where she took one of  Mama’s best cooking pots (the heaviest of her hammered aluminum cookware) and ran to the front of the flat overlooking the street.  Throwing up the window and calling, “Look out below,” she tossed the pot into space watching it fall down and down until it hit the sidewalk.  Still no magic.  If San Francisco had no magic, where could it be found?  Janet tried three more times with the same result, “Thud, clunk, clunk, clunk.”  We retrieved the pot (fortunate that it hadn’t taken out a drunk from the corner bar) put it back in the kitchen and we both went to bed still wondering where was the magic —  the celebration — this miraculous thing that changed one year into another — where was the old bearded man carrying the sickle — and the stork delivering the Baby New Year?

The next morning, Mama tried using the pot being puzzled about why the lid didn’t fit.  Among her many talents, the woman of our house was also an excellent detective.  After a few minutes of interrogation, then piecing together the events of the previous night she was less than happy.  Having saved precious dimes and nickles through long Depression years until there were enough dollars to buy a complete set of cookware, she cried over the bent and apparently ruined pot.  My father tried to reshape the damage by clamping one side of the utensil into a vise and pounding the other side with a hammer.  In doing so a two-inch zagged line appeared down one side of the traumatized pot.   The lid fit, but when Mama used it, a thin spray of telling steam escaped through the crack, forever reminding me and Janet that the magic wasn’t found by throwing pots from a four-story window.  That New Year did not begin on a happy note.  Even so I was still convinced that somewhere there must be wonderment — something spectacular — something special — happening at year’s end — and I would continue my search.

As young adults we gathered with friends, tossed confetti and serpentine, put on party hats and blew tiny tin horns.   Marriage and children brought us together with neighbors to celebrate the incoming year, while keeping our little ones close by.   As the children grew older we were free to house hop, visiting other friends wishing them well, ending with Sofia and Don at their home where we watched the ball drop at Times Square in New York.  Instead of confetti we tossed popcorn, exchanged hugs and kisses and wondered what the coming year would bring.   When our nest was empty Ken and I often took BART (Bay Area Rapid Transit) to the city in the late afternoon of December 31.  Getting off at mid-town we walked up Powell Street, through China Town, and over the top of Nob Hill and down to Fisherman’s Wharf which was still sparkling with Christmas decorations.  We wandered the shops of Pier 39, had an early dinner, took the Cable Car back to Market and Powell, caught BART and were home before midnight — usually asleep as the clock struck 12:00.

The last time we celebrated New Year’s Eve was in 2006.  Our daughter, Debbie and her husband Mark, had moved to Ogden, Utah the year before.  Following Christmas, we flew back to spend time with them.  “Come with us,” Debbie urged as the end of the year approached.  “New Year’s Eve in Salt Lake is so much fun.  In a few selected buildings on Temple Square they have great entertainment until about 11:30, and at midnight the city puts on a fireworks display from the rooftop of a downtown building.” 

Ken’s AD was evident with considerable memory loss at the time, but he was aware enough that he still enjoyed life.  He remembered Christmas and its meaning and the Holidays in general — and me — most of the time.   At midnight the four of us stood among the crowd, huddled together, arms around one another as snow flurries melted on our cheeks while watching the sky light up in a spectacular welcoming of another year.

So did I ever find the magic?   I’m not even certain when my “Search” lost its importance, but about magic:  it doesn’t have to come at the end of the year, nor does it come in a puff of smoke, or out of a tall silk hat, or at the wave of a wand, or even with fireworks no matter how beautiful.  It comes in small things and in small ways, appearing so naturally it’s hardly noticed; and  yet it can be wonderment and often spectacular and oh so special, but you have to watch or you might miss it.   And what’s most important; rather than finding it at midnight of December 31, I have found bits and pieces, sometimes big chunks of it on any number of the 365 days that have made up each incredible year of my sojourn here on earth.  It’s life at its best and at its very worst.  It’s love and marriage — or not — love extended to our fellow-man in the way of devotion and service.  It’s also caring, friendship, success and failure, falling down and getting up, faith and hope, family, birth, a baby’s first smile, first word, first step;  it’s fear, anguish, adversity, worry, work, wealth and poverty, abundance and hunger, disappointment, unbearable sorrow and despair, pain so intense you believe you cannot survive, but you do, sickness and, yes, ultimately death.   But there is also magnificent happiness and joy beyond measure to be found.   Yes!   It is magic:  this grand experience of life is magic, and for those of faith, an even greater magic is yet to come.  So, Happy New Year — and during this new beginning of 2010, go out and find the magic for yourself.

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