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Archive for the ‘Alzheimer's’ Category

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of her old “friend,” her hand could have automatically reached over and flipped the switch turning on the motor of her outdated, but still efficient, sewing machine.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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lost shoe

Like a long lost shoe, Alzheimer's patients often feel lonely, lost and abandoned.

“Good grief,” confessed my neighbor Ruth many years ago,  “I forgot Laurie at Mayfair’s.”  It was a few days after the fact that she mustered up enough courage to tell me she had forgotten her child while shopping at one of those supermarkets where there was a built-in Kiddie Korral, a special fenced-in corner of the store where you could leave your children for a few minutes, withour worry, while picking up groceries.  More often than not Ruth went shopping by herself, leaving the younger children with her oldest daughter, who was more than capable of keeping an eye on her younger siblings.  All of the little ones had enjoyed a few stays in the Korral, and if they caught mom heading out to buy groceries, they pleaded to go along.

“Oh please,” Laurie had begged, “Can I come with you – pleeeeease?”  How could Ruth resist such coaxing?   Laurie climbed into the car with her mother and off they went, the little girl being more excited about her visit to the Kiddie Korral than spending some one-on-one time with her mother.  Absorbed in the picture books and surrounding toys,  Laurie didn’t notice the time passing, nor did she notice her mother push the grocery cart past the fun-filled corner and out through the open glass doors of the supermarket.  Nor did Ruth remember she had brought one of her children.

“Where’s Laurie?” asked Jackie, helping her mother carry in the groceries. “Did you forget her at the store?” she joked.  That was the moment of truth.  Ruth leaped into the car and raced back to Mayfair’s. There was Laurie still looking at pictures from the pile of selected books next to her chair.  “Time to go,” said Ruth, relieved to find the little girl safe and sound just where she had left her.  For Laurie there was no trauma and no feeling she had been forgotten, much less abandoned, nor would she be scarred for life from the experience. However, Ruth wasn’t alone is losing a child.

One year we lost our three-year-old son, Kevin, at the county fair.  He didn’t want to be in the stroller, so I pushed his empty vehicle while he held his father’s hand.  Feeling independent, he soon insisted on walking alone, and when his sisters, Ken and I turned to go into an exhibit, Kevin kept going straight.  Within seconds we realized he was gone, and he was – disappeared from sight – and so quickly.  After minutes of searching and not finding any trace of him in the crowd, terrible visions began entering our minds.  Immediately we found the sheriff’s office and reported our missing son. “Wait here,” the deputy suggested, “We’ll find him.”

It wasn’t like Ruth leaving Laurie, she was pretty certain she knew where to find her little girl. We did not.  Our child was lost in a world filled with strangers – and they could be dangerous strangers.  My little boy was alone and frightened somewhere out there.  We were near panic.  It seemed like forever before another deputy appeared before us holding our crying and frightened child, his precious face streaked with smudged tears, his small arms stretching forward to me as we both sobbed; Kevin’s tears from being lost, my tears because he was found and safe in my arms.  “No need for positive identification,” said the sergeant in charge. “Looks like she’s the mother.”

Ruth, nor I, nor Ken, were bad parents, neither were the number of other friends we knew who had misplaced, lost or forgotten one of their children during those years of transition from toddler to an independent human being, especially in a large family. Fortunately, all of our lost children were found.

One couple we know drove 50 miles before they realized their small son was not in Uncle John’s car, but back at the dam.  The return trip was a little frantic, but Steven was safe  in the capable care of the park rangers even though he probably felt lost, abandoned and fearful.  Another family outing involving multiple cars arrived home, hours away from their excursion site, before they realized one little boy was still at the aquarium in San Francisco’s Golden Gate Park.  A quick phone call and Uncle Gene who lived in the City came to his rescue, once again finding the lost child safe with aquarium staff.

Those desperate emotions are always within us and rise to the surface when we feel threatened; possibly in preparation for our own defense.   I suppose they belong to the “Fear Family,” often made worse when fear itself is mixed with believing you are alone and lost.  However, with a diseased mind, those same fears of emptiness and desperation can be a constant in addition to other instinctive feelings that bring unimagined misery to the mindless.  Is it any wonder they can rage, become angry and combative?  Occasionally, I look into Ken’s eyes and see fear and entrapment.  I understand how frightening life can be for AD victims when there is no reasoning power to comfort their own confused state.  Reassurance, however, can come from someone else or something: a familiar voice, a caring touch, pleasant music, soft words, company and many other soothing actions or words.

A few weeks ago I walked through our living room on my way to do a few quick errands.  Ken was sitting comfortably in a chair with Ben beside him.

“Where are you going,” Ken asked.

“I have to go to the bank, I’ll be back soon.”

“No, you won’t” he retorted.

Once again I pled my case, “I’ll be right back – really I will.”

“You’re just saying that,” he insisted.  “You won’t ever come back.”

I looked into his handsome face.  Written clearly was that look of abandonment.  Incredible sadness filled his eyes and demeanor.   I felt astonished to read him so well.  I could see the disappointment, the sorrow, the acceptance of my leaving forever as I moved toward the door.  He was convinced that I wouldn’t be coming back.  I was leaving him alone – abandoning him – in his immediate need for comfort and assurance.

“I can do this tomorrow,” I said to Ben, removing my coat and putting my purse aside.  Ken said nothing more as I sat down, but his face showed relief.  Did he know me?  Was he having a Ken moment?  I don’t know the answers.  What I do know is that for a brief period of time he wanted me nearby.  He wanted that feeling of security — to be with someone familiar — even vaguely familiar.  In much the same way as my three-year-old son had buried his wet face in my shoulder, his arms desperately clinging to my neck Ken too wanted to feel safe, knowing that he was found.  This I could give him with my presence.  Even if it lasted for only a little while, I wanted him to be comforted in that moment knowing he had not been abandoned.

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Valentine's Day is a celebration of love, remembered or not.

There it was, much to everyone’s excitement, in all of its gaudy decorated glory: the Valentine’s Box sitting proudly in the back of the classroom.  Covered in finger-scalloped crepe paper and shiny hearts of red, white and pink by a few of the teacher’s artistically talented students, its message was clear.  The ordinary, newly transformed cardboard carton became a treasure trove  for valentines: small tokens of affection from one student to another.

At home you either made cards, or your mother bought a couple of books filled with “punch-out” valentines printed on both sides, or a package filled with 36 cards and envelopes for all your little friends – plus one for the teacher.  The day before the 14 of February, as you walked out of the classroom door with your lunchbox, books, papers and coat, the teacher stuck one more printed paper into your outstretched hand which included names of every single boy and girl in the class.  That was her way of saying, “Make sure you give everyone a card.  We don’t want any student to be forgotten.”  That was Valentine’s Day in elementary school.

In high school, they dispensed with such childish frivolities as elaborate Valentine’s Boxes, the day being just another school day, except that everyone was looking forward to the coming Friday night Valentine’s Day dance held in the boy’s gym.  The other exception was the special cards stuffed through the vent slots of certain lockers by handsome young swains and adorable girls, most being part of the popular group — the cliques – the in-kids; then there was everyone else.  That was my group: everyone else.

However, that exclusivity didn’t stop “the-everyone-else group” from having crushes on certain members of the opposite sex with whom no one outside of the cliques had a screaming chance.  For many of us, we took our non-couple status and dared to pursue the unsuspecting hunks on this special day of love by stuffing our own cards through the vent slots of their locker.  

My carefully chosen small token of affection for the dark-haired quarterback, which I signed with a question mark, was a sad-looking street urchin sitting on the curb.  The cover caption read, “Gee, Valentine’s Day ain’t no fun……,” continuing inside with, “…… ‘specially if you don’t got cha one.”  Other than having my English teacher suffer with an acute anxiety attack had I permitted her to read the grammar, the card was a total bust.  Mr. Football Star never knew I existed, and certainly didn’t much care who the unfortunate one might be with a name like question mark.  And that about summed up Valentine’s Day in high school.

Then I grew up, got married and in the doing I acquired my very own permanent and forever Valentine:  Ken.  We continued the romance of Cupid’s work with small tokens of affection on February 14: cards to one another, and cards slipped under everyone’s plate at dinner time when the children were small – and not so small — or a handful of candy hearts in their lunch box – just to say “I love you.” In return, their handmade cards for us were taped to the living room window for all to see.  And then the children grew up, married their own Valentines and moved away leaving just the two of us once again.

One year, while driving in the car I heard a radio DJ announce a Valentine’s Day contest with first prize being a get-away weekend for two at a romantic resort up the coast from San Francisco.  To win, all the contestants had to do was be the maker of the most original Valentine.  “Just mail your entry to the radio station where it will be judged, and the decision of the judges is final.”  “Simple enough, I can do that,” I said to me. Based on a childhood poem about a tin whistle, I cut up some tin cans, fashioned them into a greeting card with my own original “tin” verse and sent it to the radio station.

Did I win the weekend for two at the quaint romantic inn on the coast?  No.  But I did win 3rd prize:  A champagne basket and a dozen long-stemmed red roses would be delivered to my Valentine at his work the Friday before February 14, which was Saturday.

Wouldn’t Ken be pleased to have such a surprise Valentine delivered to his office?  I was excited.  However, on that very Friday, February 13, I received a second call from the radio station telling me they were soooo sorry, but deliveries were limited to San Francisco only.  No deliveries to the East Bay where we lived and Ken worked.  My surprise bubble had been popped. “But you can come over and pick up the basket yourself,” encouraged the DJ, still apologizing.  I agreed that we would do that.

It stormed 24 hours straight on Valentine’s Day.  Nevertheless, we sloshed across the Bay Bridge, meandered up and down Market Street through sheets of torrential rain finally spotting the florist where the prizes were displayed in the window.  Ken pulled into a vacant place next to a flooding curb – into which I could not avoid stepping.  He waited patiently in the car while I dashed through the rain into the shop where I picked up my prize – his small token of affection from me.  “Happy Valentine’s Day,” I crooned, handing him the beautifully filled basket — me and the prize dripping wet.  I’m still not sure if he felt the water-drenched trip was worth the Valentine, but he gave me a quick kiss adding – almost grumbling — “Thank You,” as we began the soggy trip home.

He gave the champagne to our neighbor while I rearranged the long-stemmed roses.  They were lovely on our intimate table in front of the fireplace where I finally surprised him with a cozy dinner for two.

There have been many other days celebrating St. Valentine, other dinners and other roses –with  none quite as memorable.  Never, have I made a more supreme effort to say “I love you” than with that small token of affection.  Nor, do I suppose, has he ever ventured out in such miserable weather just to make me happy while I was striving so hard to make him happy.  A paradox, you might say?  Probably — but such are the Valentine’s Days of devotion to someone you love — and to long-term married life.

Presently, I do believe Cupid’s quiver is empty at our house, but the cute cherub still hangs out here reminding me that small — and large — tokens of affection aren’t always tangible.  Nor do I need to get shot with one of his tiny pointed arrows to remind me that I do love this man.  I don’t love the strangeness that makes him who he is not — stealing him from me —  or the demons who keep him imprisoned within himself.  It’s Ken, who is losing his battle with AD — who has fought so hard for so long, that I love — and such is Valentine’s Day when you live with Alzheimer’s disease.

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Remember years ago when you heard that catchy little ditty insisting you needed a break. Not just needed, but you deserved a break today….…..at McDonaldssssssss……..  Did you know the bouncy little singer was none other than Reba McEntire working her way up the ladder of success?  Such a perky voice, and the ad was presented so favorably the words and music soon became one of those songs that remained in your head for days – then you heard it again and again – so often, in fact, that it never left your mind.  You either hummed it day after day, or you put words to the music – just like Reba.  Eventually, McDonalds ran a new slogan and Reba went on to bigger and better things, but still — those words and music linger.

Lately – and it’s been years — I’ve found myself singing the silly little song once again.  Actually, only the first five words which were prompted by a dear friend who believed that I did – need a break – deserved a break – and today — and often.  However, it wasn’t that day and we didn’t go to McDonald’s.  Instead I met Sandy, Shirleen and about eight other women a few days later at the Olive Garden for lunch.  Wow for me!

During the day, when caregivers are here for Ken, I do get out – really I do — all by myself.  I’ve been doing that a lot lately: the bank, the post office, doctor visits, knee therapy at the gym’s swimming pool, grocery shopping (last year’s Christmas gifts for everyone done in one crazy afternoon in November – of course everyone got the same thing — slippers), and if the timing is right I have even attended church.  Are those breaks?  It is getting out, or is it a bunch of stuff on my “To Do” list?  Doing the “To Do” list — is that the same as taking a break?

 Before last February’s accident, Ken and I went everywhere together.  When I wanted a break, I said to him, “Let’s go to the movies,” or “Let’s go shopping.”  We also dropped by for short visits with friends, and on occasion we stopped for a quick bite to eat where we didn’t have to wait for service or the check.  He was too impatient for that kind of waiting. We also went to Jayne’s house every Monday evening for dinner.

I didn’t have caregivers BTA, so, admittedly, I didn’t have lunch with the girls, but that was all right. While we weren’t blazing a trail into high society, we did get out, and I have always enjoyed Ken’s company, despite his Alzheimer’s.

So when Sandy said, “Join us for lunch on Tuesday, and maybe a movie and lunch again on Wednesday,” I said, “Okay.”  A little overwhelmed by so much all at one time, I decided I’d go slow beginning with lunch on Tuesday.

In many ways I’m still a “working woman.”  I’m one of the three caregivers at this house, and a manager: managing Ken’s care, our finances, our rental property’s finances, supervising the maintenance of that property and our own, plus “whatever else” there is, and it seems as if there is always something — and I write.  Nevertheless, Sandy and Shirleen are on target; even a working person needs – and deserves — a break.

I knew all of the women at lunch, but together they were a group.  I found it was just a bit intimidating to be a new kid on the block.  However, they couldn’t have been more welcoming.  Sandy sat next to me and Shirleen sat across which made me feel comfortable.  We ordered and while we waited, the conversations began.  “You’re grandson just had a birthday,” quipped Anitra to me.  For a minute I was lost and it took me a few seconds to remember that Mike and her son were good friends with their birthdays just a day apart.  “Oh, oh, you mean Mike,” I finally answered, feeling a little dismayed that it appeared I had no idea what she was talking about, and worse, that I hadn’t remembered my oldest grandchild’s birthday.  (I did remember and had already sent greetings.)  Obviously though, I was still feeling a bit off balance.  Was I losing my social skills?  “All work and no play….” Was it making me a “dull” person?

Surrounded by conversations I found myself nodding in the affirmative, because, for the most part, I’m used to being with Ken.  When we eat together he jabbers on and on and on.  For my own peace of mind, I tune him out responding periodically with a head nod, or “Really,” or “Is that right,” or “Gee — I didn’t know that,” all in an effort to give him the feedback his often senseless “remarks” need. 

Lunch with the girls was over and it was truly a refreshing afternoon, and then we would all go our separate ways.  I had those errands on my “To Do” list to finish, but before we left the table I told my group of friends that I wasn’t used to a “break,” and if they noticed me nodding in agreement to them or replying with “Really,” or “Is that right,” or “I didn’t know that,” they were to snap their fingers and tell me to “wake up and tune in.”  Yes, not only do I deserve a break, I really need one, and often.

So, in summing up my “break” day, I would advise the caregivers of America to schedule you some social time.  Not just time alone, time when you run those errands, but time with other people, and not only family. I know it isn’t easy, especially if you are the full-time caregiver.  Have you ever had someone ask what they can do to help?  Probably a lot of neighbors, friends and family have volunteered to “sit” while you go.  They mean it, accept the help and go have a little fun.  Beyond being a caregiver, you are still you and you NEED to be kind to you.  Remember, I’m not some disinterested person.  I’m someone like you – one of you — another caregiver advising you that you really do need – and deserve a break.  Just to make sure, write it down – in ink — on your “To Do” list.

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My adult children were relieved when they were told that Ken and I would, ultimately, with time, rest and therapy; recover physically following our automobile accident last February.  There were no guarantees, but the prognosis was good. While I remained in intensive care for a week, and then was transferred to our HMO facility, Ken was released from the hospital in five days. Weakened and changed by the accident and his stay, the volunteer wheeled him from the hospital to the waiting car while Debbie took photos of him each step of the way as he struggled from hospital care, to car, to walker and up our driveway.

“I don’t want those pictures all over Face Book,” instructed our son, Keith, who had stepped into the role of CEO for the family during my absence.  Needing to do what needed to be done, he outlined a course of duties, assignments and restrictions for each of our five grown children.  “Dad’s been through enough without having him look less than who he is, less of the man than who he was.  There is no need for the entire world to see him on the Internet as he looks right now.  My father deserves better.”

I doubt if it was the intent of Debbie to display Ken for everyone to see.  She knew her already disease-stricken father had received a double whammy with the accident piling more traumas on top of his already debilitating problems.  The photos were for family.

Not only is Keith a fixer of whatever is broken he is also a fiercely private person: kind, compassionate, sympathetic, and more – empathetic and beyond – as he often steps quietly out of his comfort zone to “lift up” his fellow man.  At the same time, don’t cross him, because he can draw a line in the sand which is not to be crossed or treaded upon.

He also has a motto, “Never put anything in writing unless you don’t care who sees it or reads it.” That goes for photos as well. I agree with him totally.  Many times those feathers – words, photos — which have been cast carelessly into the wind, may at times, manage to flutter back and “bite you in the butt.”

I read a lot about Alzheimer’s from many sources, always looking for how others are managing, new ways and encouragement on how to be a better caregiver – a better person — even though life becomes more and more difficult as the disease progresses.  I also read various blogs about many of the diseases under the Dementia Umbrella.  They all touch my heart, some deeper than others bringing tears to my eyes, especially those who are victims of Early-Onset Alzheimer’s:  Young people, some still in their 30s, who have a lifetime before them with growing families, goals to accomplish and careers to fulfill; their lives — never to reach full realization; their minds — never to reach full potential, and through it all I read of a devoted spouse, adult child or relative, any of whom is often the author of the work.

When I was younger, one of my neighbors called and asked if I could help with her husband.  Stan was in the last stages of cancer and she was caring for him at home.  Other than medical people helping with showers, Val was his sole caregiver except when she might need aid from a friend or neighbor.  “I just need some help turning him,” she explained.  I was glad to be of service.  I could see she was quite capable of caring for him by herself as his disease had ravaged his emaciated body to where nothing was left except skin and bones.  He greeted me, even managed to mumble, “Thank you,” as Val and I carefully shifted him from one side to the other.  Her work with him was such an act of love.   Watching them together, I marveled as she chattered in answer to his bits of labored conversation.  She continued fussing over him, with Stan thanking her profusely for doing for him those things which he could no longer do for himself.

Looking around I noticed the house was immaculate, as always.  I used to tell Ken that Val was so clean she even swept the dust from the dirt in the backyard.  Keeping it all up, she must have been exhausted, yet, never did I hear her complain or tell about some of the dreadfully unpleasant duties her care giving demanded.

Stan was her third husband – the third one she would bury – nursing all of them through their various ills until death led them away and Val was able to pick up the pieces and move on.  Even when she spoke of the first two men in her life and their illnesses, it was without complaint – and no details.  She never mentioned what it was that took each of them only that she was the caregiver.  While Ken and I were filled with admiration, we were much too young to be totally appreciative of her efforts, neither of us having experienced the overwhelming and extensive effort she had performed.  Val chose that those years of caring were to be her memories – unshared – unspoken.

No matter what the illness, there are aspects of caring for the infirmed which are, to say the least, extremely difficult – private – and, perhaps better left unsaid – unwritten.   That’s been my decision whenever I write anything about Ken and our shared journey through this disease; I always ask myself this question, “If I were the one who was ill, would I want him to share each and every facet of my failing health on his blog, with society and all of the neighbors?” My answer would be, “No.  Please — be discrete.”  Discretion is the word I keep in mind.

Someday, after it’s all over, and Ken has been laid to rest – the Lord willing as often the caregiver goes first — I want him remembered for who he was, not for what the monster AD has done to him. Long ago I decided that everything – every labor of this journey – every detail of caregiving — will not be posted on my watch.  As Keith has said, “My father deserves better.”  So does my husband.

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rollercoaster

The ups and downs of Alzheimer's can be worse than any roller coaster ride.

I dislike roller coasters. From the first time I visited Play Land At The Beach, which was   a very long time ago, I was wary of the ride – intrigued – but wary.  The ancient granddaddy of fun loomed over the rest of the concessions like the skeletal mid-section of a mythical dragon; a grayish monstrosity of what appeared to be old pieces of weathering wood which I believed to be untrustworthy even when I was young.

The amusement park was located right across from the Pacific Ocean at the end of the Great Highway and just a short walk south from San Francisco’s famous Cliff House.  Even as a pre-teen I could hear the rickety structure clickety-clack and rattle as each line of speeding cars roared up and down the  mountains of lumber and track finally screeching to a jolting halt at the end of the line. Frightening, yet I was fascinated.  “Oh come on you big baby,” badgered one of my older sisters.  “You’ll love it.”  Scary though it was, I wanted to love it like everyone else.

The three of us climbed into the seat, the attendant dropped the safety bar as my sisters warned, “Now hang on and never let go or you might fall out.”  Fear griped me and we were off. Climbing up was all right, but the descent was horrific. I hated every blood-chilling moment.  Furthermore, with each threat of death I repented of all my sins – however many sins a pre-teen could accumulate – I was penitent.

Time and time again, whenever I visited Play Land with my sisters and friends I was coaxed back onto the roller coaster with the promise from someone, “Oh, you’ll like it this time.  You just have to get used to it.”  Fear-stricken, I repented once again promising to be ever so good.   Still, I hated my skinny little body getting bruised, slammed and thrown around with each jerking turn.  Minutes later and facing the last invisible decline over what seemed to be the edge of the world, terror froze deep in my throat while other passengers screamed and shouted with glee.

As an adult and the mother of five grown children not much has changed regarding roller coasters except they’re bigger, better and faster as they race over the modern, steel-supported network of tracks.  Ken loves them, and always has.  He was probably one of those smart-alecky kids who laughed, yelled and held his hands straight up in the air on every downward dive.

At Great America, where we went for a family day, that roller coaster not only did the up-and-down thing, the tube-like car also spun in circles.  “You’ll like this one,” Ken had insisted.  “Come with me.  It’ll be fun.”  It wasn’t.  I repented again — and then found the ladies room where I lost my lunch.

Feeling sorry for me we had a 7-UP to settle my still-pitching stomach and found my kind of ride: those cute little boats that carry you through a maze of tracks onto an intermediate slope sending the passenger-filled boat into a boxed-in lake where, for thrills, you get a good splashing of water.

With roller coasters, Ferris wheels, merry-go-rounds, and even little boats now a part of our past, Alzheimer’s has brought us a new kind of roller coaster.  I don’t like this one either, and if Ken had his wits about him, he would be on my side.  Nevertheless, we’re both along for the ride whether we like it or not.  Unfortunately, there is no jolting stop where either one of us can get off – save it be death – or somehow a miraculous cure.  So we endure.

There are times when I see him fearful, as I was on that very first ride.  I know he is plunging into a down mood. “No!” he shouts.  “I’m not going.”  Going could be anywhere he’s doesn’t believe he wants to go, or it could be just his way of being independent.  Nevertheless, he means no — no to showers, to eating, to bed, for a ride, for a walk or to visit the doctor.  We might as well take him into the House of Horrors because he has that same expression of unknown fear in his eyes.

Later, when his mood changes to up, and he sees me not only as someone he recognizes, but as his wife, who he invites to sit beside him on the sofa.  I do and he puts his arm around my shoulders saying, “I love you.”  I sit closer and rest my head against his chest — snuggling in — and for a while it feels like old times – good.  His face is relaxed and he smiles when he looks at me.  For a while he is calm and quiet.  We just sit for as long as he’s willing — for as long as the up mood lasts.

His face begins to puzzle and I move away to prepare a simple dinner, hoping to have it finished before he becomes hostile.  Cleaning his plate with a crust of bread, his eyes begin shooting daggers at me.  “You don’t belong here,” he hisses, “get out of my house.”  I pretend to be accommodating and when he gets up to make certain I’m leaving, I close and lock the kitchen door behind him.  It’s good for Ken – and me – to take a break.

Quietly I watch him from around corners, and through a slit as I barely open the door.  He seems more peaceful sitting in a living room chair all by himself.  His mood is changing once again. “It’s cold in here,” I remind him knowing the ride is taking him up.  “Do you want to go where it’s warmer?”  He ponders my question, and then makes an excuse about why he can’t abandon his post or adjourn his imagined meeting.  I leave and try again minutes later – hoping he has forgotten my earlier attempt to get him into bed.

“Okay,” he finally agrees, his eyes groggy, and he follows me into the bedroom.  The covers turned back, he sits on the edge of the bed.   “You can put your feet up,” I suggest.  “With my shoes on?” he asks.  “Whatever you want,” I reply.  He still likes to make his own decisions, and then kicks off the moccasins, pulling his feet up onto the bed.

I place one of the blankets over him in much the same way I covered his children all those many years ago. “There,” I ask, “doesn’t that feel gooood?  Sooo nice and warm!  He is smiling, his eyes inviting.  “Do I get a kiss?” he asks.  “Of course,” I answer leaning over kissing him softly, gently; one more time as he whispers, “Goodnight.  I love you,”   “I love you too,” I reply, turning out the light.

The switch also closes the lights on the day’s roller coaster.  We’ve traveled through the gamut, which included Ken spitting in my face during the morning clean-up time with Ben, gouging my arm even though his fingernails are closely clipped, to the lovingness of a goodnight kiss.  Today is done, and I sigh with relief.  Some days the ride is more stressful than others, but no matter, we are forced to continue.  I hate the Alzheimer’s roller coaster more than all of the other electronic ones combined.

A few years ago, when his illness was milder, my sister asked, “How can you stand this day after day?”   I answered, “You just learn to live in the moment.  Don’t lament about losing the good times, or even begrudge the bad.  What we know for sure is that no matter where we are in any moment of our life it will change,” reminding her of our youthful pleasures and how happy those days could be, but they didn’t last and when they were gone we felt so wretched.  “Remember what Mama used to say to us during those down times — when we believed that life was the pits – she would remind us, ‘And this too shall pass away.’”

We all know that we can beat our chests and cry into the wilderness about how unfair life is, but it doesn’t change anything.  We can ask, “Why me?”  But there is no answer to that question.  We can be miserable and sad — or accepting – and in the accepting we can enjoy the small fragments of happiness which still come into our lives. Using the prayer of serenity you change those things you can, accept those things you cannot, and ask that God grant you the wisdom to know the difference.

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Ken fell the other night about an hour after Ben left, and it’s not the first time.  I have the evening/night shift, and usually it goes very well, but Alzheimer’s and its ramifications are most always unpredictable.

We had been watching TV and I went into the kitchen (not 12’ feet away, but around a snack bar and out of sight) to prepare a light dinner.  I looked back in a few minutes to where we had been sitting on the couch and he was on the floor.  He didn’t cry out or make any noise as he fell, nor did he appear to be hurt.  I asked him if he was all right.  Growling at me, he intimated it was my fault, but then everything is my fault.  I encouraged him to turn around and get up on his knees.  If he could do that I could help him get back onto the couch.  After making several attempts he was still in the same position on the floor with him becoming exceedingly agitated.

Knowing Ken wasn’t going anywhere, I stepped out to the front porch surveying the nearby houses to see which of the men might be at home.  Three houses down and across the street I could see Robert working in the garage.  “Sure,” he said, “I’ll be glad to help you with Ken.”

Entering the family room with Robert we found Ken sitting back on the couch.  “I have no idea how he got himself up,” I explained to my neighbor, “but he’s fine.  Thank you so much.”  Robert went back to his work and I continued with dinner.

The fact is evident: older people often fall, and people with AD often fall, which Ken has done many times.  But the full fact is that just about everyone has taken a tumble or two – or more – over their lifetime, and, usually, it’s no one’s fault no matter what the age.

I recently read an article written by a Minnesota journalist regarding the number of deaths from falling in various care facilities throughout that state.  The article was republished on the “Alzheimer’s Reading Room” blog. There were various comments below with many contributors “blaming” the inadequate care, the inadequate number of employees, and the incompetence of care facilities in general.  In my humble opinion, those kinds of all-encompassing comments are unfair.

While I have my own 20-year-old horror stories about care facilities with this one topping my list:  We found my AD mother, restrained in a chair with a fitted Snap-On lunch tray holding her in place.  Her sweaty face had turned a deep red as she sobbed tears of desperation while sitting in her own waste.  We calculated she had been ignored for at least four hours on Christmas Day while the staff partied; a perfect example of blatant neglect.  However, I don’t believe that every incident, accident or fall means total disregard of a patient, or that every care facility is filled with incompetent and uncaring workers. 

Nor do I believe that the aged or infirmed, once they reach that point of no return, have much of a choice regarding their physical condition.  Obviously, aging, in and of itself, is a journey of deterioration.  I do believe, though, that many older citizens, who are otherwise free from illness, can engage themselves in some kind of preventative action.

We are all aware that as both men and women grow older, they are less active and less likely to be involved in an exercise regimen where they can improve muscle quality and practice balance movements; thus preparing for what might come down the line at a later date.  Dedication to such a practice is known to also improve bone density, which can help in many health areas including the possibility of osteoporosis prevention.

Before my mother succumbed to AD, she tripped over the spread while making up the bed.  The unexpected fall broke her hip.  Following hip replacement, she breezed through therapy at 80, and then devoted herself to an exercise program which not only strengthened the muscles around the artificial hip, but greatly improved her general wellbeing – and balance.

On the other hand my father, a tall man with large bones, surrendered to painfully arthritic knees.  Laxed in thigh and leg strength exercises, his legs could not compensate when, without warning, a knee would buckle resulting in numerous falls.  For days afterward he complained that he ached all over – of course!

One day as he watched one of our toddling grandchildren tumble to the floor after taking a few steps, then step and tumble again and again, Dad said, “If I fell like that I’d be in bed for a week.”  “Dad,” I answered, “She weighs 22 pounds and fell six inches.  When you fall, it’s about 3-1/2 feet.  That’s a long way down for 200-plus pounds to hit the floor.

My point here is that from the time we begin walking we begin falling.  Throughout our lifetime, we have all taken a number of spills: some resulting in skinned knees, elbows and hands; embarrassment and injured vanity; broken arms and legs, or worse: broken hips, and if the fall is from a good distance it might break every bone in our body – or – sadly — result in death.  But more often than not falling down isn’t always someone’s fault, but rather it can be caused by any number of reasons, even slipping on a tiny patch of ice, or the well-known banana peel.  Falling is just the nature of the beast: homo sapiens – mankind – who walks on two spindly legs can be, at times, a clumsy lot. 

Certainly, I’m not referring to the infirmed, ill or elderly whose every step is often an act of heroic courage; victims suffering from pain, or any disorder, including those categorized under the Dementia umbrella.  The utmost care, concern, love and compassion must be given to these tender and fading sparks of humanity of whom we have charge with the same care, concern, love and compassion that we bestow upon the babies and children who bless, or have blessed, our lives.

Admittedly, the falling of our oldest citizens is of top priority whether care is given in the home or at a care facility.  However, even at home when care is a one-on-one ratio or better, falls happen.  Statistically, we know that in a care facility a one-on-one ratio is non-existent.  For that luxury, the cost would be prohibitive.

Unfortunately, there is no sure solution to the problem of falling other than restraints placed upon the patient.  Do we want that?  I don’t think so.  I would recommend, though, that families be selective in choosing a care facility for their loved-one.  Also, be a responsible visitor.  It is a known fact that the often-visited resident in a home gets the best care, and those getting the best of care are less likely to be victims of falling.

My main concern with this issue, though, is blame.  As a nation we are so quick to point a finger, to blame, to accuse, and, at times, to take legal action.  Terminal illness is a no-win situation marked with guilt — agonizing guilt — not only for the family believing if only they had done better……, done more……, whatever……; so it is with caregivers who also experience those same self-deprecating feelings of guilt.  

It has often been said that death is a blessing relieving man from endless pain or allowing freedom from a lost and tortured mind.  Accordingly, whatever happens after a fall, circumstances need to be the first point  weighed and considered. Furthermore, we should be prudent about finger-pointing; striving first to be forgiving and kind to one another, and ourselves.  If we remember to do that, to be kind and forgiving, then once the sadness mellows and everyone involved finds their own peace, we’ll all be able to sleep just a little better.

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A block print by Irene Weeks, the mother of Ann Romick who also suffered from Alzheimer's

Last year, a week or so before Christmas, I flipped through our church magazine stopping at an article titled, “Be The Answer To Someone’s Prayer.”  Captivated by the thought I read the article through.

As a woman of faith and active in my church I have always striven to do those requests asked of me, but never have I through of my acts as being an answer to someone’s prayer.  I believe in prayer, that prayers are answered, and yes, I believe “angels” help many people.  My favorite Christmas movie is “It’s A Wonderful Life,” but “me” as an answer to a prayer – it’s never even been a consideration.  So my answer would have to be – I’m not sure.

Please don’t misunderstand.  I believe I am, for the most part, a charitable person donating to many worthy causes, dropping money into the Salvation Army’s kettle, helping others, and I loved all of the old TV angel programs often to the point of shedding a few tears at the happy endings.  I have also been known to hand money to a guy carrying a gas can who asks for help in getting his car filled and the family back home.  “It’s a scam, Mom,” I was repeatedly told by any one of my adult sons.  “That’s all right,” I have answered.  “If it is a scam, then he has a problem, but I did the right thing in helping.”  Is that an answer to someone’s prayer – again I’m not sure – or am I a sucker for a scam?

I also received an email about a hospice physician living in Colorado who was forced out of a rainy evening’s traffic into a gas station because his car kept stalling. (I’m not sure if the writer was a man or woman as it was written in first person, and it really doesn’t matter.  However, for the sake of clarity I’ll refer to the person as male.)

Somewhat exasperated he looked around only to find himself stalled near a very troubled woman who appeared to have fallen down next to a gas pump.  Asking if she needed help, the tearful, haggard woman said she didn’t want her children to see her cry.  Our Good Samaritan noticed the older car filled with stuff and three kids in the back – one in a car seat.  Summing up the situation he took his credit card and sliced it through the machine nearest her gas pump saying, “I’m the answer to your prayer.”  She looked at him with surprise, and he followed with, “You were praying, weren’t you?”

As the car filled he went next door to a McDonald’s coming back with two large bags of food for the kids and a cup of coffee for her.  The kids tore into the burgers and fries like young wolves.  The woman shared her story of being abandoned by a worthless boy friend, and was now hoping to make a new start by returning home to her parents with whom she had been estranged for more than five years. They were looking forward to her and the children with open arms, and offered to help until she got back on her feet.

Feeling much better, she thanked her benefactor, and then asked, “What are you – some kind of angel?”  “No,” he chuckled.  “This time of year the angels have a lot to do, so sometimes God has to use regular people.”

He was the answer to her prayers.  And by the way, when he tried to start his car the motor turned over immediately and purred like a kitten.

Christmas: the time of year when we begin to think about being kinder, more charitable, more aware of mankind and their problems, and thoughtfully wonder, “How can I help others?”  And then we get busy writing cards, shopping, wrapping, getting presents ready for mailing so loved ones will receive their packages on time.  In a whirlwind of doing good, we often find excuses for not taking the time to think of doing “more good.”  Such was the case one blustery evening a week before Christmas last year.

It was near dusk, but light enough outside to see the wind blowing the never-ending rain of leaves from our trees when the door bell rang.  Before me stood a man in his 30s holding a rake; he spoke with an accent, but his English was good.  “May I remove the leaves from your lawn for a donation?” he asked.  My thoughts were not kind. Ken was in a bad mood, and I was busy trying to prepare dinner, needing to get back into the kitchen before something burned.  “Oh bother” I thought, “I just raked them yesterday, and I’m busy, and my husband has Alzheimer’s, and I need to see if he’s getting into something, and you’re here to rake leaves?  Why now?”

I all but said, “No thank you,” just to have him gone, and then I remembered the magazine article and the email tale of the physician and the down-trodden woman – whether it was fact or fiction – it didn’t matter — it was a beautiful story.  Before I could speak my uncaring thoughts, sending him away with his rake, a kinder, gentler thought raced into my mind.  “Perhaps you can be an answer to his prayer.”

“Sure,” I said. “Go ahead. There’s a recycle can next to the house.  Put the leaves in that.”  Suddenly, I felt better, less harried – less annoyed – a little more in tune with the season.

From my purse I took two matching bills placing each in a front pocket of my jeans.  If he did a sloppy job I would give him one, I decided.  For a good job he’d get both.  Returning to the kitchen it wasn’t long before the bell rang once again.  It was darker now, but still with enough light to see the lawn was perfectly clear except for the still-fluttering leaves falling to the ground.  With both hands I reached into my pockets and handed him the two bills.  “Good job,” I added.  “Thank you,” he said with a broad smile, “and have a Merry Christmas.”

In the realm of Sister Teresa’s life it certainly wasn’t a big deal, but maybe he didn’t need a big deal.  Perhaps he needed just a few more dollars – for whatever.  Was I an answer to his prayer?  I don’t know, but I felt good.

This year of 2010 has not been my favorite year.  There has been illness and death among our friends and family.  Ken’s Alzheimer’s has continued to plateau downward making his care increasing difficult, and the automobile accident in February which nearly took my life are not experiences I would like to repeat  Yet from the ashes of sadness and disaster I have found blessings.  And yes, I must acknowledge the abundant answers to my prayers through – not only God’s angels – but through the human angels He has sent to answer not only my prayers, but the prayers of those near and dear to me.

What better example is there about being the answer to the prayers of others than words from the Lord Himself as he reminds his disciples in the Bible (King James) —  Matthew 25:35-40 when he says, “For I was hungred, and ye gave me meat; I was thirsty, and ye gave me drink; I was a stranger, and ye took me in; Naked and ye clothed me; I was sick, and ye visited me; I was in prison, and ye came unto me.

“Then shall the righteous answer him, saying, ‘Lord, when saw we thee hungered, and fed thee? Or thirsty, and gave thee drink?  When saw we thee a stranger, and took thee in? or naked, and clothed thee?  Or when saw we thee sick, or in prison, and came unto thee?

“And the King shall answer and say unto them, ‘Verily I say unto you, Inasmuch as ye have done it unto one of the least of these my brethren, ye have done it unto me.'”

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

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

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

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

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

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

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

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

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

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

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

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

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

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Early on with Ken’s Alzheimer’s I joined a support group sponsored by our HMO.  My friend Madalyn, whose husband was also an AD victim, picked me up for my first meeting, and for a time it was a good thing.  I would hate to use the term “Misery loves company,” but I’m going to use it anyway.  Perhaps it was the motivating force for going — at least in the beginning.   Finding others who share the same burdens, the same dilemmas, and the same problems is often comforting as well as educational and helpful.  After all, it is this miserable disease in common that links us together.

However, circumstances change: Madalyn’s husband passed on, the timing no longer fit into my schedule, and eventually Ken couldn’t be left alone for such a long period of time.  No matter how beneficial the guidance and help had been, plus the medical information obtained, attendance for me became impossible, yet I needed something.

Other sources:  Books for starters, Madalyn gave me her copy of “The 36 Hour Day.”  Another friend began sending me scientific updates on the disease, and I continued searching the internet for any new developments.  Johns Hopkins puts out a weekly newsletter covering many facets of many illnesses, including Alzheimer’s.  I subscribed and it arrives quite often in my inbox.  Printed under the headings of any one of the issues are diseases of interest.  Each mini article allows the reader a glimpse of what’s contained in the full paper.  For more solid information you must download the rest of the paper or book for a fee. It’s good to know an abundance of helpful information is available if and when needed.

After reading and more reading plus watching PBS’s specials on Alzheimer’s I found I wasn’t necessarily looking for any further brain scans or definitive breakdowns on the disease.  I felt thoroughly informed as to what was happening to Ken’s brain.  Okay, I understand what it is – now what?  It was hands-on information I needed:  like an in-house support group where I could glean and share tips on how-to skills, in polishing up my own acceptance, increasing my strengths, my endurance, coping methods and picking up on dozens of ideas not even thought of.  Back to the internet – and what a wealth of support group information exists — mostly from people just like me.

The first post of my Blog, nearly two years ago, had an immediate response from Dr. David, a middle-aged psychiatrist who appeared to be much too young for any of this, but was stricken with Lewy Body Dementia (LBD).  I know next to nothing about LBD (which is no doubt lumped under the Dementia Umbrella and is a close relative of Alzheimer’s) Despite my LBD ignorance David was warm and welcoming, inviting me to join his link.  That evening I read several entries from his blog as well as entries from others as far away as Australia, all of them coping with LBD.  I ached for where they were – physically and emotionally — and what they were going through: the victims as well as the caregivers.

Dr. David’s wife Pam is his caregiver, and I’ve noticed, now, when I go to his site and read his entries I find his battlefield has become strewn with his many losses, but he struggles forward enduring as the valiant fighter he has proven to be.  His posts are dotted with what we all feel: anger, frustration, humor, incredible sorrow, and acceptance, but also with lots of information, hope for a breakthrough and some positive signs for more research funding from Congress.  A breakthrough in any of these mind deterioration diseases will benefit us all.

I also find encouragement from writing my blog when I receive comments from people I don’t even know.  Most, if not all, have had experience as caregivers for AD or other related diseases.  For many their battle is over, but for some it’s just beginning such as one woman who was caring for her AD mother and had just been diagnosed with early-onset Alzheimer’s herself.  She was pleased to find my posts are driven by my faith and my personal relationship with God, and took comfort in my writings about what we shared.

From as far away as South Africa I was advised that there is life after Alzheimer’s.

Another message stated simply, “Thank you for sharing your journey with us.”

Writing to me about my post a young woman wrote, “How sweet, and how sad at the same time.  Whenever I read your blog I am blessed.”

“Best of luck to you.  I know how difficult it is.”

From another who wrote, “The hardest thing to deal with is feeling alone, but you are not alone.  We are here and through this blog we can share in your very difficult battle.”

There are many out there who believe the internet is a bad thing filled with perverts, child molesters and ugliness.  It can be.  We do hear, see and read stories of its abuse, and lives ruined because of misguided and inappropriate use.  Simply put, it’s a tool.  Any tool can be used for evil – or for good.

Writing about my journey has brought me peace and has kept me focused.  I often refer to my computer – especially the far-reaching internet — as my electronic therapist, which I may have stated in previous posts.  Not only can I tell my readers of the good moments in our battle against AD, I can vent.  And during the tough times if I need some encouragement all I have to do is go to my pages of comments and read all of the supportive words from those of you who have taken the time to leave me your loving, caring messages.   I know that I am not alone in this frightful journey.  Thank you.

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