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The Romick family, long before anyone thought of Alzheimer’s.

August 11, 2012 — So much has been written about family participation in helping with an Alzheimer’spatient. From what I have read the percentage of those willing to help and those willing to watch is way out of balance. I don’t have the statistics; furthermore I doubt there are any truly accurate stats because involvement in caregiving is such a personal family issue. However, I would venture to say that the numbers

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My granddaughter Katie and her new husband Brian

July 20, 2012 — Alzheimer’s is a prison for the victim and often for the caregiver. As caregivers, especially those of us who care for our loved one at home, we struggle against the confinement. Keeping our head above water in the never-ending stream of responsibilities and duties we must fight diligently to give ourselves the needed breaks we not only deserve, but desperately need. I periodically write about “breaks” for

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Showers can be difficult for Alzheimer’s caregivers.

SHOWER: I CAN DO IT MYSELF

July 27, 2012 — Today was a good day with Ken even though Alzheimer’s has taken him very deep into self. I have often wondered about the deep dark pit of self and what parts of personality might be fragmented in this lonely place. I wonder if it’s terribly crowded there because every so often a glimmer of self slips out and pays us a brief visit. Identifiable only that it was Ken.

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2011 in review

The WordPress.com stats helper monkeys prepared a 2011 annual report for this blog.

Here’s an excerpt:

The concert hall at the Syndey Opera House holds 2,700 people. This blog was viewed about 8,500 times in 2011. If it were a concert at Sydney Opera House, it would take about 3 sold-out performances for that many people to see it.

Click here to see the complete report.

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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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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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Granddaughter Liz, following her yachting experience as a crew member, is taking time to really see the world by living abroad for a while.  An exciting time for her.  Presently, she resides in Montenegro in a small apartment all her own.  She keeps in touch with family and friends through the internet, especially Facebook.  Liz is also a budding writer.

Recently she posted a question asking, “What’s it like to be in love.”  Talk about opening Pandora’s Box – but instead of problems pouring forth to trouble mankind butterflies of vibrantly colored messages soon filled an almost endless column of wonderful responses – and wise – all about love.   Amazing how pushing a certain “button” in people can open the floodgates of thought.  Facebookers not only wrote about what it’s like to be in love, they mentioned the many facets of love, the different kinds of love, degrees of love, receiving and giving love, the highs and lows of love, the ecstasy and agony – with one referring to love as positive rage – and they even touched on the ultimate:  God’s love.

Possibly believing that their friend had met some wonderfully handsome, dark-eyed and brooding foreigner her friends might have been giving her their very best advice, as were her mother and I. Yet, we stood our distance – no personal questions.  Near the end of everyone’s comments Liz interjected, “This, by the way, is for a book I’m working on.  Thanks everyone for your posts.”

Grateful that my granddaughter, on the other side of the world, is still thinking clearly I went about the day’s business.

The long list of “Honey do” chores which I now do or assign to a handyman still plagues my daily life.  Home and rental maintenance is a constant.   Today, I decided to sand some drawers which had been waiting for the final touches for years. With the weather mild I chose to work in the backyard.  The drawers were one of those things my procrastinating husband had put off without realizing how precious little time he had left to be my “Honey Doer.”  Alzheimer’s does that.  It would seem that even I didn’t fully grasp how the disease quickly robs the victims of just about everything they knew and understood: relationships, years of acquired knowledge, skills, talents and even love.  That’s the hard one for me to accept:  love.

Does he love me?  And at times I wonder if I love him even though I am duty bound?  I know I am devoted to the man.  On the other hand there are times when I am afraid of him.  His strength is still amazing and when he is angry I try to stay out of what could be harm’s way as he can become combative.  Nevertheless, I truly care about him and I’m constantly concerned about his health and well being. Fearful that he might fall and seriously hurt himself, Ben, David or I watch his every move. Each night before I go to bed I check him, as I did our children, making sure he is safely in bed, covered, seeing that all is well before I retire.  The thought of placing Ken in a full-care facility rips my heart out, and if he passes on before I leave Planet Earth I know my loneliness will be beyond measure. Does all of this add up to love?

Working on my project my back was to the house.  Ken was inside with Ben content to sit and rest as he does most of the time.  However, this afternoon he must have noticed me doing something out of doors.  Did he know it was me or did he presume I was an intruder on his property?  I was unaware of even the door opening.  Suddenly I heard, “Boo.”  My first though was that we had unexpected company yet I recognized the voice as that of my husband.   “Boo?”   Turning, I saw that it was Ken and he was smiling.  His eyes were bright as he continued to recognize me.   Apparently, he had known that I was the one working outside, and came out to surprise me with a gentle “Boo” to get my attention.

It was as if years had been swept away.  I said, “Hi Honey,” the same way I would have greeted him long ago when he came home from work and found me immersed in a project.  He leaned over and I gave him a welcoming kiss as I had always done in the past.  I almost expected my husband to ask, “What’s for dinner?”  He didn’t, but he did continue to talk about his day — as if he really had one.  However, he made no sense, but it was the way he continued to talk – as if the scene was taken from yesteryear.  During those moments my heart jumped, and I was filled with love for the man I had married: my husband who was standing with me as the sun began to dip.  What I felt wasn’t the love/devotion of a care-giving spouse, but the love of a long-married wife — love — like a comfortable pair of old, favorite shoes — soft and warm.  The moments didn’t last long before Ken complained of being cold, and we all went back into the house where he sat down — soon drifting back into the fog.

Fragments of time such as this still make me wonder about the disease, and I’m sure I sound like a broken record as the thought surfaces over and over again in my mind.  Is memory destroyed because of the plaque, or is it so buried under all of that gook it can’t come forth except at certain times when the fog seems to momentarily lift?  If it is destroyed then why does he, at times, get these sudden bursts of remembering?  I have no answers, but whatever it is that allows me a glimpse of who Ken was, who we were as a couple is a gift, and I am reminded that, yes indeed, I do love this man.

Samuel Butler, a writer of long ago once wrote, “To live is to remember and to remember is to live.”  Today I am alive and I remembered love — so did Ken — if only for  a moment.

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Carved pumpkin

Pumpkin carving, a Halloween tradition.

When my kids were at home it was their job to carve the scary faces on the pumpkins.  I also had them scoop out the “flesh” of fall’s bright orange squash so I could make pumpkin pies.

Now I cheat.  A couple of ceramic pumpkins already wearing carved faces and placed on a plate with a candle inside does the trick.  What’s more they look every bit as Halloweenish as did the real thing.  Well, maybe not quite so much.  As my in-house experts advanced in years their talents increased exceedingly.    Using the most humble of kitchen knives and scoops with utmost proficiency the more ghostly the carved pumpkins became as the artists scraped out more and more of the pumpkin flesh making the shell creepily translucent.  While I do miss the activity and the main fresh ingredient for pies I get along very nicely using the old standard:  Libby’s pumpkin in a can.

Meanwhile, I find I enjoy this holiday more now than when the house was filled with our children.  There was always so much hubbub in getting costumes ready – not only for the big night – but for school and other celebrations:  costumes on – costumes off, this party that party, costumes on – costumes off.  Then it seemed, in the past, that day-light-savings time never cooperated, switching back to standard time the week before Halloween making it really dark at dinnertime (even when eating was bumped up to 5:00 p.m.).  Chaos reigned trying to feed kids a bit of real food before they hit the neighborhood for candy while we ran back and forth answering the constant demand of the bell as early trick and treaters opened their pillow cases for the required ransom.

Kristina, the granddaughter who lives with us, loves Halloween.  At 22 her sites are no longer on dressing up for treats.  It’s been fun for me watching her get ready for this bedecked and bejeweled holiday.  She found a saloon girl dress at a vintage shop in Santa Curz and spent the last few weeks acquiring the accessories to make her costume complete.  Her young man, also Chris, found chaps transforming him into the needed cowboy to escort his “Lady in red” to various parties.  A really fun holiday and I didn’t have to do anything but watch, although I did help her with a minor alteration.  And I am totally prepared with a cauldron full of candy for the night visitors.

Living with Alzheimer’s I am determined that life will be as normal as possible, so I continue our celebration of All Saints Eve.  Decorating is simple, but effective.  I like the orange candy lights which I scatter over one specific juniper bush.  Towering above, is a ghost made from two sheets ruffled over a couple of pieces of wood stuck behind the lights in the same bush, and for the head a very large,  round light globe salvaged when an outdoor fixture was replaced.  Easy up, easy down.

For a few years, even with his disease, Ken helped, but often took down the decorations each morning not remembering the holiday was yet to come, so together we would put everything back in its place. This year there isn’t much notice from my husband.  It’s almost as if he looks, but doesn’t see.  A tall ghost surrounded with small orange lights means nothing to him as he gazes out of the front window, but I continue with tradition not only for me but for our numerous great grandchildren and Jessica, our youngest granddaughter who is 11 and blends right in with her cousins of another generation.

This morning as Ben and I were getting Ken ready for the day he looked at me with disdain as I held his restrained hands while Ben did the cleaning.  “You don’t know anything,” he growled giving me a “duh” expression.  His contorted face made me laugh out loud.  Ben looked over and laughed as well.  Ken continued making faces finally sticking out his tongue like a naughty five-year-old boy.  “Why are you making those funny and scary faces?” I asked, still laughing.  Ben looked again and said, “Faces he probably made as a young boy.”  Stopping my giggles I asked my husband, “Are you getting ready for Halloween?”

On Halloween night, later in the evening, Jess will pay us a visit with her mom and dad.  She will be wearing a surprise costume which her mother made especially for her.  Perhaps Ken will show her his little-boy faces even sticking out his tongue, and then add a few scary ones – or not.  More than likely he will be unresponsive.  However, in a pretend perfect world he would be just Grandpa looking at her with love in his eyes – remembering who she is, who she was and anticipating, with all of us, who she will become – saying something like, “You are a beautiful fairy princess, Jess (or an awesome Darth Vader — whatever the costume) and  I love you.”

So this Halloween when unseen visitors from the past make their presence known, when witches fly through the air on  broomsticks, or  ghosts and goblins dash about the streets disappearing over the hills and unexplained apparitions appear from no where, perhaps the real Ken will be allowed to sneak away from the prison of Alzheimer’s and be just plain Grandpa – for a time.  Stranger things have happened.

We can only wish.   Maybe someday we can catch that very first magical evening star to wish upon.  If it’s the right one, wishes are  supposed to come true.

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