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Alzheimer's is like a one-way sign to nowhere.

Alzheimer's is like a one-way street to nowhere.

When he didn’t remember the water gurgling from the ground on our dream property, I was stunned. Purchased in the late 90s with thoughts of building a country home,  Ken seemed to be without further confusion regarding our future. He still talked about drawing plans as soon as he found someone who could give him the structural details he needed for trusses.  The building site overlooked rolling hills covered with heritage oaks and pine trees extending to a distant lake, and then blending into more misty greens and rolling hills eventually vanishing into the skyline beyond.  Whether we were watching the sunset or just drinking in the magnificence spread before us it was everything we had wanted for our retirement years.  His life-long goal:  to design and build our own home in the country.  Would it still be practical knowing what I suspected?  Only time would tell.

The difficult part about Alzheimer’s is that when you don’t remember something, you don’t remember that you don’t remember. Years ago, Ken vowed he was not going to have the end of his life be like that of his parents.  I have since wondered if he was aware of his forgetfulness – his confusion — aware of how often he had seen the gurgling water which fed the pond.  If he suspected, in the least little way, was he concerned about what might lay ahead for the two of us?  Or could it have been his procrastinating nature, or, as he claimed, was it the difficulty in finding someone to build trusses which caused several years delay in his settling down and actually drawing the house plans.  These kinds of questions can never be answered.

Ken was of the old school of engineering where everyone still used a slide rule, tee squares and a bulky drafting machine. With the computer age looming over the horizon, his firm was just getting acquainted with the practicality of introducing this new “intelligence” into the business.  Desk-size models they were not; their first computer purchase was the size of a king-size freezer chest.  Furthermore, computer-assisted drawings (CADs) to replace the drafting department would be a thing for the up-and-coming generation of engineers, and Ken would be retired before computers became a “must have” in many businesses. No matter; whatever it was that motivated him to get started on the project, his finally doing so came as a pleasant surprise. Could the possibility of finding a truss builder just 60 miles away have given him a jump start?  A new resolve to stop procrastinating, or did he feel a sense of urgency that time was running out?  Nevertheless, he finished the drawings for our proposed building even though it was several years after the water gurgling incident.  His ability to pick up his tools of the trade and accomplish the tedious work of creating accurate drawings was a bit of a reprieve for me (and a novelty to the planning department who were used to seeing only CADs).  Nevertheless, I was more than pleased.  Perhaps we could go forward after all. Yet, I had to acknowledge my observations.   It wasn’t as if there were no more memory-loss incidents.  There were many which I doubt he noticed – or did he?  Troubled, I once said to him, “I worry when you forget things.”  His usual answer was flippant, “I only remember what’s important.”

He made an appointment with our insurance agent whose office was on a familiar street, yet Ken couldn’t find it.  Even parking the car and walking to follow a sequence of numbers he couldn’t find the address.  It was my guess the number he was looking for was across the street and he had forgotten about odd and even numbering, so he returned home.  I also began drawing maps for him to visit friends who lived nearby.  He missed luncheon dates with volunteer committees because he couldn’t find the restaurant although I reminded him we had been there. “There are too many places to eat in that shopping center,” he complained, “so I gave up.”

I felt stymied, and what was there for me to say?  Should I remind him that it appeared he was heading down the same path his parents had traveled?  Was he aware of his own forgetting – his confusion – or was he in denial?  I recognized the signs and most of the time I chose not to remind him and we didn’t talk about it – at least not in depth.  I just continued to allow it to happen.  Isn’t that’s a silly statement?  I wasn’t allowing anything.  There was nothing I could do to stop it.

In January of 2004 we paid our first visit to the neurologist.  I explained what I had observed and added I was trying to avoid the “A” word.  He prescribed Aricept and agreed that, for a while, we could avoid the “A” word and see what happened during the next 12 months.  The following January the doctor told us that Ken did, indeed, have Alzheimer’s. Slowly, our life began to move in another direction, one we never would have chosen: a turbulent, unchartered one-way street to nowhere.

Photo courtesy of http://www.flickr.com/photos/cbroders/5632294511/.

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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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The first week of November is a different time of the year for a 40th Class Reunion, but for whatever the reason, I was really looking forward to having our oldest daughter, Deborah, travel from Utah for the event and spend a few days with us, as well as her children and grandchildren.  She and husband, Mark, moved to Utah when he was downsized from his graphic arts job, located just south of San Francisco, with a package deal for an early retirement.

Wisely, they took their California money, retirement from her school teaching job and settled in Ogden.  The good part for them is they have several children who also live in Ogden; hence, grandchildren.  So wherever they are — Bay Area or Utah — there is family, but we miss them.

Our other four children, three boys and a girl (correctly put, it should read three men and one woman) live no more than an hour away from us, and that’s a good thing.  In the event of an emergency for either Ken or me, someone is only moments away.

Interesting, though, whether they live a mile away or 800 miles away, Ken doesn’t know any of them.  When Debbie arrived she greeted her father with a non-threatening hug and, “Hi Dad.  I’m your daughter, Debbie.”  He viewed her with suspicion and replied, “I don’t know about that,” which is similar to the same response he gives the others, even me.  His very brief moments of knowing me are sandwiched in between his mood swings amounting to not more than 10 to 15 minutes each day.

Even if the visit is lengthy it doesn’t matter; further recognition of his children does not take place as the hours move on.  All of us are just “someone” to him, as I was only “someone” to my mother as she slipped away into the more advanced stages of AD.  It was the same way with Ken’s parents, Rose and Nick; we were nobody, welcome nobodies, a few middle-aged people who kept showing up for a visit.  Their memory of family was and is gone.

I’m not sure if acceptance is an instant thing or if it’s gradual — probably a little of both.  When those first tears stop is that total acceptance?  Or is it when the patients look at the beautiful faces of family and sees them not?  I’m also certain that the timing is different for each family member.  Furthermore, acceptance isn’t just about the disease, there is always something new to accept as the victim spirals down the bottomless staircase.

In a recent response to my Blog, a follower mentioned that when the family fully accepts that Alzheimer’s is terminal, they could better come together in determining what is best for the victim.  That’s true, but, again, each case is very different and must be carefully evaluated.

For Ken’s parents and their particular situation and condition, we found it best to place them, at different times, in full-care facilities.  My mother, however, remained in the family home which included my father (with a live-in caregiver) until she took her last breath.  These decisions even in retrospect, for all of us, were what we believed to be best, not only for the AD patient, but for all concerned.

Never meaning to undermine the wrenching decision of children being called upon to put their parent or parents in a care facility, that relationship doesn’t compare to decades of intimacy and oneness shared by a husband and a wife.  Nor does anything compare to the agonizing decision reached by the well spouse who finally must declare, “Now is the time.”  And then, it is with support of family, all agreeing, that placement is necessary, which includes that which has already been declared and accepted:  Yes!  Alzheimer’s is terminal.

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It’s the 22rd of December and, as always, there are a few things I needed to buy.  Early evenings are a perfect time to shop.  Everyone — at least a lot of people go home for dinner.  We shopped, stopped for a quick bite to eat and were home before 8:00.

It didn’t work that well on December 23.  The parking lot was packed, the stores crowded and the lines long, but we endured.   Another man standing behind us in line, much younger than Ken, began a conversation asking what he did before retirement.   In no time at all, Ken was telling him about his former work — high rise construction — then moving to a company that made locking devices for jails.  Our in-line time passed quickly and our fellow shopper was totally impressed by Ken’s career;  “so interesting and diversified,” Ken’s new friend had commented.

I was absolutely amazed that my husband remembered so much.  Is there a magic door to memory which can be triggered to open with certain words, certain times or places, questions?  I don’t have the secret key which periodically unlocks that mysterious entrance. It just happens with no explanation.  More often than not Ken glances at me when asked about his life’s work pausing at the stranger’s question and looking a little bewildered.  When that’s the case I fill in a few of the important spots hoping to jump start some recall from Ken, adding jibs of encouragement such as, “You remember that, Hon.”  At times it worked, but other conversations ended with me explaining that he had Alzheimer’s.  “Sorry,” was the usual reply.  But not this night.  It’s been such a long time since he was able to speak of his career, to tell his own story, talk about himself and what he had accomplished with his life.  I was not only amazed, I was delighted.  For a small space in time I had my husband back.

We didn’t stop for dinner this night, but broke away from the crowds and came home to eat.  As we neared the house Ken said, “This is where I live.  I wonder if my wife is at home?”  Memory vanished just as quickly as it had appeared.

I felt it wise to leave our packages in the car and he didn’t notice in the dark which is good.  If I bring in several purchases, some of them disappear.   One night I noticed he looked into a bag containing several battery-operated candles.  “These are mine,” he stated.  I didn’t challenge him, wondering if he had plans for them or even if he knew what they were.  Quietly I followed him down the hall as he went into our bedroom.  Peeking around the corner I watched where he hid them; up on a shelf in his closet.  I would get them later.  Possession for Ken means ownership.  In the confusion of his AD Ken seems to believe everything we buy is for him.  We play hide-and-seek — he hides and I seek — searching for my son’s shirt and books for the grandchildren.   We play this game often, but AD isn’t a game, searching has become a necessity.  So it’s just easier to leave as much in the car as possible until I’m ready to wrap and put them under the tree. Interesting that he doesn’t bother a wrapped gift.

I’m grateful for moments like standing in line, when he’s lucid, even if it’s only for a little while.  During that time we are a couple — a husband and wife — out buying Christmas presents for those we love, and it feels so good — almost like being “normal.”

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