person escaping

Many caregivers would like to escape from Alzheimer's, but it's really not possible.


When the article I was reading mentioned feeling restless, antsy and wanting to escape, I knew exactly what the writers from meant.  I felt that way when Ken was first diagnosed with Alzheimer’s – not so much antsy – but restless and I did want to escape.  Maybe it was the fight or flight syndrome, but in my fantasy of running away I would never have left without Ken.  Disease and all I wanted to put us both in the car and go; to escape the impending sorrow looming ahead in our future. In my vision I saw us driving endlessly – never stopping – the two of us together.  What was I planning? There were no plans. That wasn’t part of my pretend, but in my quest I wanted to find a safe place where disease was forbidden and tranquility prevailed.  I suppose in my imagined, melancholy make-believe I was looking for a release from reality — a kind of peace.


Rridiculous I know.  I knew it then, but I suppose my base-woman felt threatened.  Something deep within me, perhaps reaching back into the primeval, couldn’t grasp anything to fight, so those same primitive instincts dealt with the problem by wanting to flee.  In my logical mind, running away was never a consideration, but the feelings were there and they were very real. Interestingly, as part of being a caregiver those same feelings are still there – subdued – but there; coming and going at will, and it’s all right because I believe it’s normal.  After all – I’m human – all of us who have this assignment are subject to being human.  The challenge is dealing with the negatives by concentrating on the need to keep an element of balance in this topsy-turvy world of Alzheimer’s.

So on a down day, when life seems dreary and overwhelming, the old question pops up.  How to get out of the funk – the blue mood – the doldrums?  I’ve written about caregiver rejuvenation on previous blogs and I do practice what I preach, but as caregivers we can’t have too much information. suggests playing games with you:  daydreams, reinventing oneself, traveling that road not taken – mentally.


My friend Dorothy and I often talked about those roads not taken and we both agree that not finishing our education has been a regret.  The question is can it be done now.  Are there enough free hours in the day to attend classes?  Is there time to study and do the required work?  Can you take the needed classes on-line?  What is available locally?  How about enhancing your computer skills?  We can learn a new language or even something less demanding through continuing adult education; perhaps an art class, or sewing, quilting or cooking if you’re a chef in the making.  Much of our time is, unavoidably, spent in the Alzheimer’s world, but there is still the world outside of AD, outside of caregiving, and it’s there and open for exploration.


Presently, my daydreams of things to do with my free hours are much closer to home: home itself.  It’s been more years than I like to think since the living room was painted – the whole interior as a matter of fact needs fresh paint and a makeover. I find myself thumbing through home-improvement magazines looking for decorating ideas and changes I can make and do by myself.  Planning and doing will keep both mind and body busy for a good while.

Although Ken and I were a great team in maintaining our home and the rental units, I would never allow him to paint inside.  He was more than capable with plumbing, wiring, building a room and scrubbing down the walls, but give him a paint brush and he was like a first grader splattering tempera on a paper-covered easel; dripping runs of paint down the wall, onto the floor and more on himself than in the can.  He wasn’t even a good spectator as he placed a casual hand or shoulder against freshly painted wood trim.  Or he would walk into the room where I was painting and accidentally kick holes in my plastic drop clothes after he had stepped in a few drops of paint, tracking the spots onto the exposed carpet.  About that time I found myself quoting Shakespeare’s Lady Macbeth, “Out damn’d spot! Out, I say!” I suppose I was hoping the words would magically remove the paint spots from the carpet while nicknaming Ken “Spot” in the same breath.  Nevertheless, I long ago banished him from any paint work in progress. Consequently, I became the self-appointed family painter.

As I think about needing an escape from my caregiving duties, I won’t have to go far.  I’ll be in the bedroom, or the living room, or the hall giving the place a new coat of freshness.  That’s the good thing about daydreams.  They can become reality, and the best part is you can create your own schedule.

Possibly I was premature way back in our beginning Alzheimer’s journey, and even now when I am feeling antsy I do a reality check.  Running away – even thinking about it — in a physical sense is never the answer.  But by allowing the mind to fly there are many avenues of escape no matter how restrictive the role as caregiver.


With fleeing no longer an option there is no other choice but to stay and fight.  Picking up arms against Alzheimer’s is a heroic battle and it will rage on.  Ultimately, we know that in the end we will lose the war.  Nevertheless, as loved ones and caregivers we must forge ahead in every way possible, never allowing us, as the front-line warriors, to become another casualty.  Wearing the full armor, our best line of defense is something our Alzheimer’s patients do not have: a clear, healthy and adventurous mind.  Now, let it soar.





Originally posted 2012-03-10 01:07:03.


steam train engine

The whistle of an old steam train is a pleasant memory, but it's also a reminder of roads not taken.


When I met Ken he was making plans to work for the railroad.   More than a century ago it was a good, solid and exciting career. Shipping and travel by train had been the way of the future.   For nearly a hundred years beginning with the driving of the golden spike at Promontory Point, Utah in 1869, the U.S. of A. was connected by a silver ribbon of tracks stretching from coast to coast.  From then on rails crisscrossed the vast country heading in every which direction. Even before you heard the clickety clack you knew those early steam engines were comin’ ‘round the bend as the engineer announced its arrival with the sound of a long and lonely whistle.

For a single man railroading was an adventure, and Ken was single.  Moving from one assignment to another by way of bidding on the next job was the way to advance within the company.  Seniority played a major factor though.  The tiny, isolated spots in the mountains, or way out in no-man’s land were usually available to the new guys, with a job opening in San Diego’s downtown depot going to someone with years of dedicated service.


When we became engaged the ramifications of constant moving became a major consideration even if it meant Ken would be working his way up the ladder.  Frequent disruptions in family life would be less than ideal if we planned on having children, which we did.  That’s when we agreed he should go back to school and study engineering – using a slide rule rather than a telegraph key.  Certainly, it was the right decision, but there always remained the distant call of a steam whistle that periodically caught his ear reminding him of the road not taken — the escapade, the new journey and wanderlust into parts unknown — and the very romance of the railroad.

Pfffftt!  Who knew that the shipping and freight industry would be taken over by trucks, and people in a hurry would jump on a plane instead of a passenger train.  Railroading slipped by the wayside and hardly anyone noticed.  Of course, freight trains still travel the tracks often laden with cargo to be piggy-backed elsewhere by trucks delivering to places where trains couldn’t go.  Amtrak evolved more as sight-seeing excursions and commuter trains, and the many modes of transportation changed.  Diesel fuel replaced coal and steam, and the haunting sound of the steam whistle was exchanged for a sudden, disquieting blast from the new engine’s horn.

When we moved into our home, more than five decades ago, we were closer to railroad tracks than we calculated by looking over the master plan displayed by the contractor.  The builders assured us that it was only one freight train during the day.  Wrong!  It was a main line for Union Pacific and we would have sworn on the Good Book that the middle-of-the-night engine ran straight down the hallway of our new house.  For a while even Ken, with his love of trains, threw himself boldly upright in bed that first week with the rattle of each passing train.  The bonus part: they were still steam-driven and the lone whistle was music to his ears, and after a while I too became enchanted with its melancholy wail.


Never regretting exchanging trains for a career in civil engineering (it had its own adventure and excitement); Ken still held dear his love for the railroad.  Before Alzheimer’s took hold, he and I, his sister Loretta and her husband Mike boarded Amtrak for a day trip to Sacramento’s Old town and the Railroad Museum where we wandered in and out of the classics of all trains.  Mesmerized, Ken chatted with some of the old-time-RR-retirees-turned docents still dedicated to the history of yesteryear’s iron horses and the streamliners of railroading’s heyday.  Making for a perfect outing we listened to enough horns and whistles to last a lifetime.

However, somewhere in that lifetime those memories of the past are lost or hidden in the tangled nerves and mystery of Ken’s illness.  His life, as well as the lives of all Alzheimer’s victims, has been dramatically altered by this devil disease, and each year he becomes more diminished than the year before.  Meanwhile, with the help of Ben or Crizaldo, we routinely go through each day of his schedule guiding him through the simplest of requirements that used to be automatic.

We still live in the same house with a main line for Union Pacific not very far away.  Only on occasion am I aware of railroad sounds.  I suppose it’s human to wonder about the road not taken, but with surety I know the ending would be the same. Ken would have AD no matter what his career and no matter where we lived.  Our life has had its struggles, its highs and lows, its good and bad times. Even though I once entertained the “Why me? Why us?” questions, I have long ago accepted that nothing in life lasts forever, not even the haunting whistle of a train.


A journalist from the past, an Oklahoma newspaper owner, editor and syndicated columnist Jenkins Lloyd Jones once wrote about life and our sometimes unrealistic and, perhaps, selfish expectations which appeared in the Deseret News in June of 1973.  The last paragraph could have been a summary, and is often quoted because it provides actual answers to so many questions about life in general.  Jones told it the way it was – the way it still is — and reminds us of how wonderfully ordinary we really are.

*“Anyone who imagines that bliss is normal is going to waste a lot of time running around shouting that he has been robbed.  The fact is that most putts don’t drop, most beef is tough, most children grow up to be just like people, most successful marriages require a high degree of mutual toleration, and most jobs are more often dull than otherwise.  Life is just like an old-time rail journey – delays, sidetracks, smoke, dust, cinders, and jolts interspersed only occasionally by beautiful vistas and thrilling bursts of speed.  The trick is to thank the Lord for letting you have the ride.”   JLJ

*Used with permission, Deseret News, Salt Lake City, Utah

Originally posted 2012-03-03 20:04:35.


When I was a little girl we lived in a fourth-floor flat located in the Noe Valley District of San Francisco.  On the corner, just down the street from our building, was “Dan’s,” a sparkling new soda fountain which served the best hamburgers and milk shakes in town, and ice cream — the likes of which we kids had never seen.  Long before Baskin had ever heard of Robbins “Dan’s” served at least eight flavors.  I had discovered maple nut, so for me there was no question as to what flavor I chose; three scoops of maple nut for a nickel.  Some of my little friends, though, had not settled on a favorite flavor and would wander back and forth in front of the counter changing their minds with every step.  Finally, the nice man in charge (it might even have been Dan himself) would say, “What would you like, vanilla or vanilla?”  “Vanilla,” was the immediate reply — problem solved.  Sometimes there are just too many choices.

Today, we’re confronted with even more choices.  Not only B & R with their 36 flavors of ice cream, but how many channels do we need on TV — and menus?  When Ken and I go out to eat, if only for a quick bite, he studies the menu board, or the menu, then hands it to me saying, “You can order.”  I know all of those choices are confusing to him, as they were to his mom and dad and my own mother, all three victims of Alzheimer’s.  So, as we did for them and as I now do for Ken, I order.  It’s like vanilla or vanilla.

At home, choosing has become almost problematic as  Ken’s AD continues its advance.  Perhaps it’s not so much the choosing, but forgetting that a choice has been made.  I had arranged his razor and shaving cream in a plastic glass, the comb and brush in another, and his toothbrush and toothpaste in a third.  With all three side by side on a shelf, it was easy for him to do his morning routine before taking a shower.  This method has been successful for the past several years, but not any more.  A shave and shower for a younger, healthier Ken was 10 minutes.  Now it stretches from 30 minutes up to an hour.

After a period of time I peek into the bathroom to see how he’s doing.  “Good,” I  say to me, “He’s shaving.”  Then he’s brushing his teeth; five minutes later he’s shaving again.  I worried one morning that he would injure his face after a third shave.  Had I intruded, suggesting he move on to the shower, he would have been furious.  Furthermore, during the day when he brushed his teeth, he felt he should shave again and wanted to shave before going to bed as well.  Shaving and brushing his teeth had become “one.”  For sure, I needed to rethink his entire routine.

Solution:  reduce the choices.  The comb and brush stayed, but as soon as he finished shaving, the razor and shaving cream vanished.  It was replaced with the toothbrush and toothpaste which remained all day until he went to bed, then the shaving gear went back on the shelf and the toothbrush and toothpaste vanished.  At times I see him searching for the missing “set,” but a change of subject brings him out of the bathroom or into the shower.  The new arrangement is working.

However, there are times when Ken makes decisions because he still has an understanding of what he wants and what he likes.  Planning on doing some yard work I laid out an older pair of jeans — mended and faded.  Dutifully, he put them on and was ready for breakfast, but before sitting down he returned to the bedroom.  Coming back to eat 10 minutes later he was wearing his good jeans.  The shabby pair ended up in the back of the closet.  Surprised, I had to laugh, and I felt good for him because he made a choice by himself.   In addition, when I ask what kind of ice cream he wants for dessert, chocolate or vanilla, he says without hesitation, “Chocolate.”

Originally posted 2009-06-28 07:15:33.

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