Alzheimer’s Concerns

NIGHTMARES

“Help, help!  It’s the wolf.”  It was the middle of the night and I leaped from my bed and ran into the bedroom of our little girls.  Snapping on the light to let Debbie, our six-year-old, know that I was there to chase away the fear and to hold her close so she would understand that everything was all right. Patting her small back as she clung to me I couldn’t help but smile a guilty smile at my unwise decision to read “Little Red Riding Hood” as a bedtime story.  It was one of her favorites as was “The Three Little Pigs” who also had issues with a big bad wolf.  “Please, please,” she had coaxed handing me the tattered little book, “please read ‘Little Red Riding Hood.'”  So I relented and read the scary story before turning off the lights.

Harmless fairy tales when the sun shines, but the wolf proved a bit more menacing in the darkness of her room.   A hug and a few kisses and reassurance that it was just a bad dream; that the story was only a fairy tale and there was no wolf in her room soothed my frightened little girl.  Finally, comforted and content she snuggled down in her bed and went back to sleep.  The worrisome wolf with the big teeth “the better to eat you with,” was gone.  Such is the stuff of which bad dreams are made when you are six.

For me, the villain of my first remembered childhood nightmare has vanished, but not the terror I recall as I struggled to free myself from the grip of that frightening dream.  My older sisters had been telling ghost stories to one another and I listened wide-eyed and trembling as an eight-year-old, not wanting to hear what they were saying, yet glued to the edge of the bed as they expanded the gory details of their tale, no doubt giggling inside at their gullible little sister.

Finally awakening from the horror, the real world didn’t feel any better than the nightmare.   Wide awake I was somewhat relieved, but in the blackness of my room, the misty experience lingered, and behind every shadow I imagined some lurking “thing” which could leap out and harm me — or worse.   I buried my head under the covers and closed my eyes ever so tightly, wanting to call out to my mother, but too frightened to make even a sound.  Somehow I must have fallen asleep because the next thing I remembered the room was filled with sunlight washing away shadows and hidden ghosts — and the best part  — I was still alive.  Such is the stuff of which bad dreams are made when you are eight.

Everyone has bad dreams and nightmares for any number of reasons.  My last run of recalled mid-night unpleasantness came about because of a new prescription for high blood pressure.  They were, once again, nightmares with me as the intended victim of any number of horrible characters cloaked in black capes and hoods, demons and even an assassin where I ran and ran and ran with “it” or him close behind wielding a dagger to do the dastardly deed.  The attempt to escape from those dreams was nearly more difficult than escaping from my imagined tormentors.  The dreams finally stopped when the doctor changed the medication.   Such is the stuff of which bad dreams are made when you are a grown up.

But suppose there was a nightmare from which the victim could not awaken?   As Alzheimer’s continues to claim the mind of my husband, I often see him frightened and agitated, and I believe it’s partly fear which, at times, makes him disagreeable, uncooperative, angry, combative and downright mean.  When I see him drop into his agitated mood my heart sinks.  This particular mood, which seems a “must” occurs at least once a day, usually taking place anytime from late afternoon throughout the entire evening, and well into the night and even the wee small hours of the morning, or it can last a comparatively short period.

Introducing that mood, he seems to “mark time” barely lifting one foot then the other from the floor — kind of like a little boy who has to go to the bathroom.   This mood — this personality — this action —  this — whatever it is I dread the most.  Communication with him is at his choice, shutting me out and any of my efforts to reach him.  If he does speak to me his words are insulating or degrading.  Somewhere inside his body there appears to be a mountain of pent-up energy which requires disbursement.  At times he can be subdued with the aid of a tranquilizer* and two or three Tylenol PM tablets* in the evening.  Other times he overrides the medication and cannot be subdued.  I confine his agitation activity to the living/dining room, the hall, bathroom and our bedroom.  Every other room is off-limits to him:  locked.  I lock them not to be mean, but to keep some kind of order in the house and to make life a little easier for me.  He doesn’t need to ransack everything in every room.  During part of these moods he becomes obsessive-compulsive and spends that time rearranging whatever he touches with ritualistic exactness.   It does no good to correct him, to suggest anything to him, or to make an effort to redirect his interest elsewhere.  For most of this time he remains alone  in his nightmare world obsessing and searching endlessly for his elusive home.

I imagine him like a robot where the control panel is out of commission allowing any of the robot’s still-functioning electronics to misfire sending nothing but broken signals of confusion (much like Ken’s diseased brain).  With Ken, the misfiring sparks a jumble of emotions: love, hate, abandonment, suspicion, loss and fear, and it seems as if fear and loss are paramount.  It’s no wonder he’s frightened as he looks around in his own home where we have lived together for more than a half century and recognizes nothing.  And me?  Surrounded by confusion, he sees me as an enemy and is, understandably, even more fearful and defensive.  I am a stranger in his midst and although I am a woman — his wife — he is still afraid of me.  By watching him, I can tell when he feels threatened and as his anger peaks toward rage I know he can become combative.  Until he is able to calm himself I often walk away, locking our bedroom door, which leaves him totally alone until the agitation subsides and the anger dissolves.   It’s during these wild episodes when I think of him as experiencing the most terrible of bad dreams:  ones where no mother can give him comfort, no sun-drenched room chases away the ghosts, and no doctor can write a new prescription.  Ken’s life is held captive in a terrifying dream-like world with no way to escape and no way to wake up from this awful torment.  Such is the stuff of which nightmares are made when you are a victim of Alzheimer’s disease.

*See Blog titled “This’ll either cure ya, or kill ya, or….

Originally posted 2010-02-07 09:41:39.

“MOTHER, MAY I”…… AND ALZHEIMER’S

Growing up in San Francisco, the sidewalk was the gathering place and playground for neighborhood kids on a summer evening.  I would like to say a warm summer evening, but in the City that would be unusual.  More often than not great rolls of billowing fog tumbled over the tops of Twin Peaks cooling what was left of a pleasant day, but we didn’t mind.  Living four blocks east from the base of those famous hills, my sister and I tossed on a sweater as our mother had instructed, which was quickly removed and discarded onto a growing pile of outer wear as the games began:  “Kick The Can,” “Hide and Go Seek,” “Tag, You’re It,” naming only a few, and one of my favorites, “Mother May I?”

I have often wondered if its origin came from a frustrated school teacher in an effort to educate the players about the difference between “may” and “can;” permission and ability.   Wherever it began didn’t really matter, “Mother May I?” was fun and if we learned a bit of correct English along the way, it was a bonus.

With the mother in charge of the action. He or she controlled all of the players who were the mother’s children, all standing 20 or 30 feet apart from the mother.   A line, imaginary or real, was established as start and finish with all the children equally spaced on that line.  One by one the mother would call each player by name giving an instruction, and then wait for a response to her command:  “Take one giant step forward,” “Take three steps back,” “Jump forward on one foot four times and turn around.”  Any instruction mother dictated, the player was obliged to do.  Before setting forth, though, the player had to remember to always ask, “Mother May I?”  The mother then responded to the polite request with, “Yes, you may.”  However, the mother could be mean and say, “No, you may not,” and proceed to the next player.  If the player stepped forward without asking permission, she/he had to go back to the beginning and start all over. The winner, of course, was the one who remembered the magic phrase, resulting in reaching the mother and then returning to the finish line before any one of the other players.  The winner became the new mother.  Kids’ games; silly but fun, and pleasant to remember.

Alzheimer’s patients can be very territorial, not only with the house, their room, the car, the newspaper, the mail, or a worthless used napkin.  The list, actually, is endless.   Their life is extremely guarded as is their space.   After several years of living with Ken’s AD, I have found the relationship we share is seldom that of husband and wife.  If for a brief time, my husband is present, he can disappear in mid-sentence, or in mid-action.  Early on Ken was sweeping the kitchen floor — and it was Ken who took out the broom.   I called to him and asked if, after he finished, he would do something else for me.  I don’t even recall what it was, but in an instant he stopped sweeping and armed with broom and dustpan, he stormed over to where I was and growled, “Stop telling me what to do!”  When he becomes threatening, I matched his threat in no uncertain terms, which usually ended in a standoff.    Had I been more astute at that time I could have, possibly, averted his outburst.

Over the years I have learned to be more sensitive to his personality changes and his territorial domain, which is so much a part of being respectful to him as a person.  I have also rekindled the phrase of the old childhood game.  While I don’t say, “Mother, May I,” I do approach him slowly and ask, “May I….?”  If I approach too quickly and reach out to straighten his collar or close a button on his shirt, I may get my hand shoved away, and through gritted teeth he will warn, “Get away from me.”  I have long since stopped being hurt by these actions and remarks because I know this person is not the man I married.  More than likely, he feels like a trapped and frightened animal, fearful of me and my actions, no matter how well-meant.   But I have noticed that if I approach with caution and gently ask permission, using the magic phrase, “May I help you close the blinds?” “May I straighten your collar?” “May I button that one button on your shirt?” or “May I sit next to you on the couch?” and then wait for him to respond.  At times he says, “No,” or “No, thank you,” but other times, if he’s comfortable and not threatened,  he will say, “Yes, you may,” or a simple “yes” giving me permission.  Moving slowly through his strange world of Alzheimer’s keeps us both more content.

Originally posted 2009-08-29 06:40:27.

VALUE AND RESPECT

“You’ll have to take me out of here in a box,” said my mother many years ago.  She and my dad had retired to a lovely piece of land just a few miles west of Sebastopol, California in beautiful Sonoma County when they were in their early 60s.  My dad, who had worked at Hunter’s Point Naval Shipyard received an early retirement because of his worn-out knees which made it next to impossible for him to continue climbing up and down the ladders of America’s former war ships.  He was also one of the “older” employees so it was easier for the Navy to just retire him rather than to be concerned with Dad’s aches, pains and restricted duty.  Besides, the war had been over for many years and keeping up the fleet was becoming a thing of the past.  In their search, my parents found a small piece of God’s amazing planet, built their dream home and settled in to enjoy the rest of their lives.  We, three daughters and our husbands, could only have hoped that their fabulous retirement years extended into nearly a quarter century.  Little by little, however, Father Time collected his toll from both of them.  Dad developed several conditions including congestive heart failure and Mama had recovered from a broken hip and kidney stones, but was becoming a bit forgetful.

As a family, we would often organize and spend a weekend at their acre and a half, trimming, weeding and trying to keep up with the demands of their little farm — an impossible task — but a fun getaway for us and helpful to them.   All the while, they stubbornly stuck to the earlier declaration of living where they chose until they died.  Even though there was concern from friends, neighbors and their church leaders, we three sisters allowed our parents their own decision.  My two sisters lived in Washington state and so the responsibility of Mom and Dad was, basically, mine.

Mama still picked from her garden, canned fruit from their trees, froze a few vegetables, and the two took care of each other.  My father could still drive during the day so they met their doctor’s appointments, shopped in town for their needs and actually got along quite well.  My one sister and her husband came from Washington for a visit and decided while they were there, she would do some “scudding out.”  With my father’s permission, and while my mother was engaged elsewhere, my well-meaning sister took it upon herself to clear out what she believed to be “older” jars of fruit and canned goods.  Loading half of my mother’s summer efforts into the back of her car, she took it all to the dumps.  Among the loss was Mama’s favorite Raw Tomato Relish.

It wasn’t until my sister and her husband were gone that Mama went to her storage looking for a jar of her favorite relish and found the cupboards half bare.   Puzzled, she asked my father if he knew anything about the missing supply.  Reluctantly, Dad had to confess his part in the vanished jars, explaining my sister meant well and had promised to toss only out-dated storage.  Mama was not only furious, she was crushed at not being consulted; at being treated as less than a thinking, reasonable and responsible adult.   A person without value; a person who, in Mama’s eyes, was no longer respected.  “What are we,” she said, “if we have no value and no respect?”   Feeling betrayed by not only her daughter, but by her husband as well, she fell into a long period of depression.

Eventually, she came out of her sadness, buoyed up by forgiveness, and life resumed for the two of them.  I certainly wouldn’t imply that her forgetfulness escalated because of the incident, but she began to slip further and further away.  To compound her declining health and memory loss, she developed leg ulcers (not successfully treated at the time).   One October day, Ken and I drove up for a visit.  I found her sitting on the patio, enjoying the last bit of an Indian Summer and reading.  Her legs were outstretched on a lawn couch and I noticed she had been self-treating an ulcer on her ankle, but the entire leg was an angry red and swollen.  “Has Greg seen your leg?” I asked.  Greg was a local doctor who lived next door with his wife and two daughters.  The family was devoted to my parents.  While he was not their physician, he watched over them, suggesting at times they see their own PC.  I knocked on his door and asked if he would take a quick look at Mama’s leg.  “She has a bad case of cellulitis,” he said, “and she needs to be in the hospital, now.”

My father declined our invitation to come home with us while Mama was in the hospital claiming he could care for himself and if he needed something he had neighbors.  We made certain she was comfortable and cared for at their HMO in San Rafael before we headed home.  I called my father during the week and visited Mama as often as I could.  At week’s end she was well enough to go home.  As we entered their house my father sobbed like a child proclaiming his loneliness, admitting they needed to give up their wonderful home and move closer to us — not live with us — just be close.  He realized that he could no longer care for his wife without help, especially after acknowledging the fact that her dementia was Alzheimer’s.

We found a nice little house less than a mile from where Ken and I lived, only a telephone call away, a 15 minute walk or a quick ride.  After a time, and with my mother’s advancing AD they required live-in help in addition to what I could provide.  But I still managed their affairs, and understanding the importance of “being master of one’s own ship,” I allowed my father to believe he was the one in charge.  He reviewed the mail and studied the bank statement, a job which had been my mother’s all of their married life.  I doubt he understood what he was perusing, but doing so returned to him his sense of independence.  Dad was still in command — the head of his household.  I never made a decision without consulting him, never took away his authority which allowed him to be a person who stepped up to the plate, taking on the responsibility in providing for the care of his beloved wife until her death, at home in her 90th year.   He died six months later at home — also in his 90th year — a man of honor, a man of value and respect.

Originally posted 2009-08-25 08:26:49.

THE SPARROW

I have found the Internet to be filled with information that goes far and beyond email, but we all know that, so it’s usually the email we go to first.  It’s like long ago when we checked the mailbox for personal mail.  Remember people writing letters?  Now, to receive something with your name handwritten at your front door is unusual — if not downright thrilling.  Most of what the mailman delivers is junk or bills, and email is often like that as well.  No bills, some junk to delete, and at times I’m disappointed to see only forwards.  However, I have come to appreciate even some of those.

There are LOLs (and that’s the new text jargon meaning laugh out loud, and like or not it’s here to stay).  Some I read and delete and others are good enough to forward.  They can be funny, inspirational, nostalgic, political, informative, enlightening, spiritual, sights to see beyond description, travels that can take your breath away, and fabulous photographs from all over the world, under the sea and outer space.  Yes, even those pesky forwards can be worth the time.

A special one, which I recently watched and was drawn to immediately was simply titled “The Sparrow,” and could best be described as a Public Service Announcement (PSA).  It was, however, in a foreign language with English subtitles.  The scene was a garden where two men were sitting on a bench.  The younger man was reading a newspaper, the older man just sitting.  Peace and tranquility prevailed with only the rustle of a newspaper and the sound of a bird.  “What’s that?” asked the old man.  “A sparrow,” replied the young man, probably a son.  Again the old man listened and heard the bird.  “What’s that?” he repeated.  The answer: “A sparrow!”  The young man returned to his paper and one more time the old man asked, “What’s that?”   Rumpling the newspaper in annoyance the younger man said again, his voice resonating with irritation, “A sparrow.  How many times do I have to tell you?”

The old man left the bench, went into the house and returned with a book.  Turning the tattered pages he found a passage handed the book to his son who read it aloud.  It had been the father’s journal from long ago when his own small son sat with him in a garden and the sound of a bird was heard.  The small boy asked his father, “What’s that?” and the father answered, “A sparrow.”  Sparrow: a new word in the boy’s vocabulary which was soon forgotten until he heard the sound again.  “What’s that?” he repeated.  And the father wrote of the experience explaining that the boy asked about the sound over and over.   “Each time,” the father wrote, “I told the boy it was a sparrow and each time I gave him a hug.”  The grown son, no longer holding the newspaper reached over and gave his demented father a hug.

With strong identification, I watched and a tear rolled down my cheek.  But years of living with Alzheimer’s has added a necessary toughness — perhaps a better word is strength — to sentiment, and by putting a hold on sentiment there might be a tendency toward cynicism.  So as a little of the cynic crept into my thoughts I had to conclude that if the old man remembered his journal entry about a sparrow, he should have remembered the word sparrow.  But I also know that cognitive loss is different in every Alzheimer’s patient, and short-term memory is the first to go.  Long-term memory comes and goes and often plays tricks so I put my cynic self to rest and appreciated the message for what it was.  It was loud and clear and didn’t have to be spelled out:  patience.   Alzheimer’s victims deserve patience.

Mike is married to my husband’s sister Loretta (also an AD victim).  He and I have often lamented together about how difficult it is to be continually patient with the forgetfulness and constant repetition.  “That’s the hard part,” he says, “the same questions over and over.”    I couldn’t agree with him more, knowing with certainty that the two of us identify with the irritable son even though we strive our utmost to be patient.

When the father in the PSA wrote of teaching his son about the sparrow, it was easy to be patient for the end result was knowledge for the boy and joy for the father as he watched his son grow to manhood with life stretching before him.  For the grown boy, and for all caregivers of AD patients, there is little joy and even less hope for the future of the ailing victim.  However, there is compensation which comes with a good day, a good evening, a good hour, or even a good moment when the patient is lucid and a spark of memory rushes forth, a moment of tenderness or a familiar smile from the past.  Then the caregiver feels gratitude and patience is rejuvenated — at least for a while.

Originally posted 2009-08-11 06:53:13.

THE PARTNERSHIP

During those first blissful years of early marriage I rarely thought of the state of matrimony as a partnership.  How unromantic was that?  A partnership sounded like some kind of business deal and I thought of “us” as being more than that.   He was the husband and I was the wife.  Husband and wife were the important words as were the titles of Mr. and Mrs. on the outside of most of our addressed mail. 

Before we married I remember how exciting  it was to sit and doodle during spare moments; practicing the best way I was going to write my new name.  Flaring the M for the Mrs. part I then curved the K for Kenneth and looped the R in as many scrolling ways as could be imagined for our shared last name.  I was going to become Mrs. Kenneth Romick as my doodle paper would testify, and it wasn’t going to be some kind of business arrangement.

The “he” part of our marriage was a G.I. student and I was the working wife, but when we were home, it was togetherness.  We moved into our first San Francisco flat where we cleaned and painted the shabby place — together.   We went everywhere together; we played together; we shopped together, we cooked and ate together — then he studied and I cleaned up — not together. 

So, perhaps everything wasn’t meant to be together — but still we weren’t ready for a business partnership. Partnership in marriage, we believed, was like what our parents had: tired and worn, yet pulling together for a common goal; not always at their best with one another, but having it not matter; spending a whole evening together exchanging only a few words and that didn’t matter either.  Yes, they were comfortable partners and Biblically speaking they were  — more or less — equally yoked:  a team.   A team, we noticed, where one member sometimes pulled harder than the other, and then at other times it was the opposite member who pulled the load.

I always believed that our “Honeymoon” lasted longer than most couples we knew.  Even with the birth of our children we had our times of romance.  So, it would be difficult to say when during these past five-plus decades of togetherness we became a partnership, but partnership we became — without sacrificing the “us.”   However, I am certain that the younger generation has long-since viewed our marriage as old and tired and as comfortable as Ken and I once viewed the marriages of our parents.  What I have found most interesting during  these years of coping with Alzheimer’s is how much I miss the partnership. 

I had planned a trip to Washington state  in 2006 to attend the 50th anniversary celebration for long-time friends Julie and Bob.  The couple planned to renew their vows with me as the matron of honor, which I had been, and the best man planned to be in attendance as well.   I explained to Julie that we were planning on coming, but I had to make the decision on a daily basis depending on Ken’s condition.  Yet, I couldn’t wait until the last-minute to make reservations and route our trip. 

One evening I pulled up the Internet punched in motels for our stops and read what was offered.  Several looked good.  I asked Ken to sit with me and help decide where we would stay.  Together we had planned all of our previous vacations.  But with AD he had no idea what I was talking about especially viewing the screen and listening to the information I read to him; it all meant nothing.  I wanted his input — a discussion, to bounce ideas back and forth between one another, to hear what he liked or didn’t like — to help me choose.   He was incapable of helping and in the end, it didn’t matter.  The chosen motel was fine and the trip went well, but I missed my partner — my husband — my team member.

The motel decision wasn’t all that important, but it was an example of what was to come.  The responsibility of “us” is all mine; we are no longer equally yoked, much less a team, and our partnership is in name only.  Our roles have changed.  I am now the caregiver and he is the patient, and I care for him in much the same way as I would care for a child — a very difficult child — who at times is stubborn, explosive and unappreciative.  Although, every so often he is lucid enough to call me sweetheart.  If I’m fast and ask him for a hug, he complies, wrapping his arms around me as in days of old, and for a few moments we are “us.”  We are partners.

Originally posted 2009-08-04 06:20:20.

TO SOOTH THE SAVAGE BEAST

The only way I can find missing “stuff” that Ken hides is to concentrate on one room at a time.  I don’t just search, I clean and sort as I go.  Beginning in one corner, I cover every square inch; moving knickknacks, dusting books, thumbing the pages in search of hidden mail or other pieces of flat stash he might have tucked away.  In our bedroom I always begin in one corner, which seems to be a key area for him to put things in a “safe” place.   Because it is his favorite hiding spot, it is also the cleanest corner in the house.  When I find the thing for which I am searching I usually stop looking — and cleaning.

Presently, I have a long list of missing items, so I will probably cover the entire room including the closet and all of the drawers, and then move on to another room.  Armed with vacuum, old towels, Simple Green, a trash can and a box for donations I begin the task.  Flipping on the TV for company I turn to PBS and find they are doing a funding drive (aren’t they always).  The program is music from mid-century.  Good, I thought — before, after and during the 50s era — that was our kind of music.

As the old familiar tunes played and the cleaning began I found myself drifting back to happier times remembering when people actually went on dates.  Ken was so courteous, never taking it for granted that I would reserve the weekend for him.  Never waiting until the last-minute he would call mid-week to secure an evening.   Of course, we went to movies, enjoyed a snack at a local drive-in afterward, but the popular date was going somewhere to dance.

Dancing under the stars at Larkspur, an open air pavilion in Marin County, was always special.  It could be a little cool, but we were warmed by the romance of it all, or if I felt a chill he would offer his sports coat which I accepted.  Scattered lights twinkled among the surrounding trees and if the fog stayed away the moon shined through adding its own charm.   There was also The Edgewater,  a new dance hall near Playland at San Francisco’s ocean beach just below the Cliff House, but because it was new it was super crowded, so we avoided that one in spite of  missing the band that might be playing.

A really big date was being invited to go dinner dancing at the Claremont Hotel in Berkeley, which we did on occasion.  We danced, ordered dinner, then danced between courses.   The food wasn’t wonderful, but that was all right; music, dancing and a romantic evening out were what was important.  It was all part of what we called courting.

All of the hotels engaged the various Big Bands, but as their popularity began to fade, along with ballroom dancing, the hotels maintained an “in-house” band.  Russ Morgan was the Claremont’s choice for many years.   Ken and I danced mostly to his music and hummed his theme song  “So Tired” which became “our song.”  It was at the Claremont that I first asked myself, “Am I falling in love with this guy?”   I suppose I was — and did.

I had hardly moved on to the next section of the bedroom when Ken found me.   “What are you doing?” he asked.  I’m never sure who he is or what he might say.  Would he feel threatened to find me in “his” room and ask me to leave — to stop touching his stuff?”  I held my breath trying to read his mood.  Accepting my answer as reasonable, he continued.  “Would it be all right if I stayed in here with you,” he asked.  “Of course,” I reassured him.   Looking around for a place to sit, he eyed the bed.  “Is it okay if I sit on the bed?”  My husband was mellow and non-aggressive so I invited him to just make himself comfortable.  Propping up his pillow he settled in.   After a time PBS stopped the program for their long pledge “commercial” before returning to our music of yesteryear.  I continued cleaning and Ken began a conversation.   “Nice music,” he commented.  “Do you remember the songs,” I asked.  “A little,” his answer being more question than fact.   I began to reminisce about our past, cleaning and talking longer than I thought possible, being grateful for this time we were spending together — being almost normal.   Ken listened, adding nothing as he lay there relaxed and enjoying the moments.  I wondered if somewhere in his troubled, clouded mind the sounds from long ago might help him find some peace, at least for a little while.  Wasn’t it Milton who said, “Music hath charms to sooth the savage beast?”  Perhaps he was right.

Originally posted 2009-07-27 01:15:04.

THE HOUSE HOPPER

In many of the old black and white movies the characters did a lot of “night clubbing.”   Apparently, it was the in-thing to do in posh places like New York, Chicago, San Francisco and other sophisticated cities throughout the country.  No one would think of going to a club in blue jeans, much less a tee-shirt.  As a matter of fact, those wearing informal attire would not be admitted.  Patrons were dressed to the hilt; men in tuxedos and women in formal gowns and furs.

Whether it was a gangster movie or one about high society there was at least one night club scene where everyone  knew most everyone else in the establishment.  The male characters (women did not participate in this practice) would leave their own table and meander around the club, stopping at various tables to exchange greetings, business ideas or to schedule a coded mob meeting with the other clientage.  The practice was referred to as table hopping.

With new writers, directors and plots, movies and television moved into a new era with more of a casual flair.  Night clubs and related table hopping went the way of the mobs, taxi dancers, cigarette girls and public dance halls, all fading into oblivion.  But that table-hopping personality trait remained alive and well for more years than I can remember in Ken, my social butterfly husband.

As new home owners moving into one of the cookie-cutter tract houses of the 50s, we found our neighbors to be much the same as we: cookie-cutter people. Most were buying their first home under the G.I. Bill of Rights, they owned one car, had 3.5 children, a dog or cat — perhaps both — struggled to make the mortgage payments, and lived on one income with a very tight budget.   I doubt that any of us were ever a part of, or even considered the social level of night clubbing as seen in those black and white movies.

Once the tract was finished, a whole bunch of people, who were virtual strangers, moved into their homes within the first week.  We greeted one another with a quick “hello” and a casual wave, but strangers quickly became acquaintances as co-op fences sprang up, with costs shared by those owning adjoining properties, and we soon found we had a new group of best friends.

The developer planted one tree on every lot and tossed grass seed on top of the parched earth producing a front lawn.  It was a start and every Saturday, the men pulled out their lawn mowers, cut the grass, pampered the tree and watered the lawn.   Little by little each home began to take on it’s own individuality in spite of the cookie-cutter floor plan, and we found that although we had much in common we were not gingerbread folks straight from the cookie sheet.

We spent evenings on one another’s porches sharing our young lives talking about jobs, careers, our hopes and dreams as our children played on the new grass.  We liked each other and Ken was in his glory with an endless supply of friends to share stories.  Saturdays, with the garage doors up and open, he wandered from house to house to see what new and exciting changes everyone was making, holding boards while John sawed, kibitzing as Fred pondered where to place the gallon cans of young plants, and building a trellis for Herb who couldn’t pound a nail.  Looking outside to see how the mowing was coming along, I would find Ken nowhere in sight.  The mower, however, sat in the middle of the lawn where he had parked it before wandering off to visit.

Coaxing him home to do his own work, I mentioned to him that he couldn’t be accused of table hopping, but he sure was good at house hopping.  Furthermore, I continued, “If we lived in Heaven together, you would no doubt spend eternity cloud hopping.”  I was never certain  if he was deliberately procrastinating  or if his constant visiting was just part of his people-loving personality.  Whatever the reason he soon earned the reputation of the neighborhood house hopper.

Alzheimer’s disease has robbed Ken of most of his abilities and most of his personality.  All of his engineering and building skills have been forgotten and he would be baffled if asked to hold a board while someone else worked the saw.  However,  he can still do putter work — even cutting the grass.  While so much of his physical and mental accomplishments are gone or diminished,  he still enjoys people.

Recently we visited our dear friend, Dorothy, who is confined to bed in a convalescent hospital.  We don’t get there as often as I would like, but when we arrived she was pleased to see us.  Ken doesn’t remember Dorothy at all and when we entered the room with two other patients, he looked around at each person and their visitors.    While I gave Dorothy a hug, he stopped by one of the beds, reached across the patient to shake hands with her visitor and said,  “It’s good to see you again.”  They chatted for a minute and then Ken crossed the room, pulled up a chair and began visiting with Dorothy’s next-bed neighbor.  I whispered to her, asking if she minded chatting with my husband.  “Not at all,” she said, obviously a temporary patient with no visitors, who understood and recognized AD.    Ken made himself comfortable, tossed one leg over the other knee and began, “When I was in the Navy, during World War II……….”     Still a people person, this was table hopping at its best.

Originally posted 2009-07-17 04:57:46.

LITTLE DOG

She was a yappy little thing and had been leaving her calling cards on the lawn at our rental property.  I shooed her away and she ran off with her tail between her legs.  I felt bad because I didn’t want to hurt her feelings, but I didn’t want to clean up after her either.  “Do you know where the little dog lives?” asked one of the neighbors.  I told him I hadn’t seen her before and we both watched as she ran down the street seeming to know where she was going.

Before long we came to realize that she was either badly neglected, lost, abandoned when someone moved or dumped.  Over the next several weeks, I watched as she dodged cars, lapped her water from sprinkler puddles and licked what was left on carelessly tossed food papers.  “If I can catch her, I’ll keep her,” I told the neighbors who had also become sympathetic to the small stray, but no one could catch her.  She knew all the hiding places and all the escape routes in and out of the various yards.  She especially liked the back section of our rentals as most of our tenants were at work and she could spend the day sleeping under a bush with no disturbances — except for me and my helpers — and once we came into view she was gone.

Like Ken, I missed having a pet in the worst way and when old age and a stroke took the last of our beloved dogs, I decided that caring for Ken and our business was all I could manage, but I felt sorry for Little Dog.  So against my better judgement I borrowed an animal carrier from Sabina, my daughter-in-law, and set it near Little Dog’s favorite bush hoping if I put food and water inside she would become accustomed to a “cage” and make trapping her a possibility.  Sabina suggested that I cover the cage with a blanket to make it look like a “den.”  Water in a bowl was the first lure, but I carried a hand full of kibble.  Sure enough, the next day she was there, but viewed me with great suspicion.  I tossed the kibble from a distance, which she accepted.  However, as soon a I stepped forward she was gone.  I examined the cage with its “den” camouflage and decided Little Dog was no dummy.  She had pulled the blanket down and made herself a tidy bed, so I put it in the cage with more kibble and fresh water.   Apparently, she appreciated her new home.  Each day her bed was slept in and the kibble was gone.  After a week or so, if she was there, Little Dog  no longer raced off, often accepting my hand-held treats which she sniffed at until I gently tossed them in her direction.  Closer and closer she came until I could almost touch her, but if I reached out, off she ran.

She was almost like a feral cat and I wondered if there were feral dogs, but that made no sense; dogs liked companionship and people.  So what was her problem?   Perhaps I needed to rethink my intentions.  What if Little Dog was a tramp dog?  Supposing she was happy and wasn’t interested in being retrained?  Maybe she liked her carefree life, especially if she had a benefactor?   What if I trapped her, took her home, worked with her (when?) and Ken forgot, leaving the door open and she ran away?   What then?  Would I hunt her down and try it all again?

Meanwhile our daughter, Julie, called, “Mom, Can you watch our three dogs?  Tim and I would like to get away for a few days.”  It had been a while since her menagerie had come to stay, but I told her it would be all right.  One of their dogs was an escape artist so I knew I would have to be careful with Ken, making sure he never left the front door open; difficult, but manageable.  This would be a test.  If I could manage three dogs and Ken, I could manage Little Dog.

While in the past, Ken whistled at the back door for our dog to come, he wasn’t particularly interested in his three visitors.  Occasionally, he would reach down and pat one of them, but he wondered where they came from and why they were here.   His Alzheimer’s had removed the joyful camaraderie he had once shared with all dogs.  My thoughts these past years that, perhaps, a dog in our house would be good for him were no longer true.  The three canines were just objects to him, and I felt concern when they got excited.  It would be easy for Ken to trip and fall over one of them — if not all of them.   My decision those few years ago had been correct.  We were better off without a dog.  And Little Dog?  I went back to our rentals with kibble and a treat.   Her blanket had not been “nested,” and the kibble was scattered — probably cats.  She was gone.  No one had seen her.   I could have allowed my thoughts to drift to the worst case scenario, but I refused to go there.  Instead, I decided she had been lost, but now she is found.  In my heart, Little Dog was home.

Originally posted 2009-07-11 01:05:40.

THE BEST THING

It was Saturday night and I had hoped to have Ken settled in so I could go to bed early.  I felt unusually tired and he had been beastly all day: very agitated, very angry, very arrogant and argumentative.  He is on medication to cut down on the agitation and it usually works, but not that night.  Suggested dosage is one half pill in the morning and another toward evening.    Nothing seemed to make him happy or subdued, so instead of waiting until evening I gave him the other half in the late afternoon and another half pill (with the doctor’s permission) around 8:00 p.m.  Instead of him becoming calm he became more hyper and more angry.  Even the Tylenol PM at 10:00 o’clock was ineffective as he wandered from room to room ranting and raving and ordering me to leave.

Exasperated beyond description I went into the office and opened the computer thinking I would work for an hour or so.  When he becomes very unreasonable it’s easier to just lock myself in and him out.   I pay no attention to his demands to open the door and eventually he settles down in front of the TV.  Usually, he will sit for a while, get drowsy and I can talk him into getting ready for bed.

After an hour I peeked around the corner and found him ransacking the refrigerator.  “What are you doing?”  I asked.  “I’m hungry,” he replied.   “But we had dinner,” I insisted.  “Maybe you had dinner,” he growled, “but I didn’t.  I’m hungry.”  Perhaps some food would subdue him, I thought, so I made him a peanut butter and jelly sandwich.  He ate half and told me that’s all he wanted.  He went back to sitting in front of the TV.  It was midnight.  “Please go to bed,” I begged.  “No,” he answered.  “I’m going to watch TV all night.” 

Exhausted and sleep deprived I went back into the office.  I couldn’t believe how wired he was — and why?  I returned to the computer.  The letters I typed danced up and down on the monitor and when I tried to proofread I fell asleep at every other line.  How I ached to go to bed and the more sleep deprived I became the more my anger grew.  I raged into the night, cursing that I had ever met him — that we had married — and in my frustration I imagined a simple, uncomplicated life without this deranged man — any man.  Why hadn’t I remained single, opting for a career in New York instead of marriage.  At that moment I saw myself sleeping in the bedroom of a lovely apartment  high above the city.  The room was silent and I was alone — how glorious — then my reverie vanished.  I crossed my arms on the desktop, dropped my head and cried.

It isn’t as though I can’t leave him alone.  At times I do, but only for a while and usually he is sleeping or happily occupied reading junk mail when I run to the bank or do other small errands.  I would be fearful to fall asleep with him in his present frenzied condition.  Even if I pulled the 220 fuse controlling the stove, I would not feel comfortable.   In addition to ransacking the pantry and the refrigerator, he leaves water running and lights on everywhere; and he could hurt himself.   On one of his stubborn nights I found him in the living room on the floor.   Apparently he had fallen getting out of a low chair.   Had I been asleep he would have been there all night. 

Finally, the house seemed quiet as I ventured out to see what he was doing.   Still watching TV, he appeared to be more relaxed.   Softly I asked, “Let’s go to bed.”  He said, “Okay.”  It was 3:00 a.m.

I slept fitfully and awoke at 10:00, staggered into the kitchen/family room and switched on the television.  Through my burning eyes the Palace of Fine Arts in San Francisco appeared on the screen.   I first thought it to be a travelogue, but the scene changed showing two men in a row-boat: one young and the other older.  The younger man spoke briefly; something about not being sure of marriage.  I decided it must be an old movie.  Still recovering from the previous night, I plopped myself  into a chair.  If I watched I didn’t have to do anything else — at least not for a while.  The camera focused to the older man — a Catholic priest — who answered the younger man’s question with reference to marriage, “It’s the best thing I ever did.”  Continuing, he explained that he had been married to a wonderful woman for 26 years.  When she died he entered the priesthood.

I watched this rather silly movie to its end where thousands of young women scurried to the church in response to an ad for marriage to this very wealthy, but reluctant swain.   Following a series of wild chases up and down the hills of San Francisco, he eagerly married his true love with all of the would-be brides as witnesses.   The movie will be easily forgotten, but I’ll remember the most thought-provoking line the writer wrote:  “It’s the best thing I ever did.” 

I remembered the night before; my anger and cursing my own marriage of more than a half century.  It has been a good marriage — not a perfect marriage  — not a perfect man or a perfect woman.  I don’t believe there is that kind of perfection, at least not in this world.   However, I will give my marriage a good solid B — better than average.  Looking back on our youthful beginning I wonder if I thought of “in sickness and in health” as meaning anything more than a cold or the flu.  How naive that would have been, but more likely I don’t believe either of us thought about illness.  After all, isn’t youth invincible?   Healthy young people on the brink of a new life don’t look very far down the road.   And if they did glimpse the ending would it alter their decision to go forward? 

Our life together has brought us our share of adversity and has now thrust upon us this illness of unmeasurable grief and sorrow, but it has also showered us with years of happiness, joy and the blessings of an ever-expanding family.  Our five remarkable children, now showing signs of greying hair and middle-age spread, have bestowed upon us grandchildren and they in turn have given us great-grandchildren, and our posterity will go forth.  Thinking of my imagined single life I had to ask “me” if that’s what I really would have wanted.  Had I chosen not to marry what would that other life be like for me today?  Even without looking down the untaken road I would have to conclude that life without my family, without Ken, would be unbearably lonely and colorless. 

In the bright, warm light of Sunday morning I believe I received something to ponder; perhaps even a Heavenly message through a silly old movie and from an actor portraying a Catholic priest reminding me that, indeed, marriage is the best thing I ever did.

Originally posted 2009-05-15 06:56:12.

CHRISTMAS AND FAMILY

December 26, 2008 — Ken’s Christmas benchmark was noticeable this year.  He has become somewhat frail looking, and moves like an old man with faltering footsteps and waving arms rather than the robust mature person he was before AD.   As we approached the steps to our daughter Julie and husband Tim’s house, where we have spent Christmas Eve for years, I noticed he was fearful of venturing onto the stone-laid walk.  Even though he was supported by two of his sons, he felt along the stones with his feet wanting to be certain they were solid.  Once inside the house he was much more subdued during the evening — almost like a shy, clinging child in new surroundings.   It’s times like this when I say he is like Velcro.

Later on, Ken felt more at ease and decided to get a drink of water in the kitchen.  Carefully, he meandered his way between the glass coffee table and the couch.  He did well, but on his return trip, he took a quick right turn at the middle of the clear table top.  (He has macular degeneration in his right eye and his poor vision is now even worse.)  Blindsided and in the dim lights of Christmas he thought the way was open.   Suddenly, he was falling right onto the glass and into the sofa on the opposite side.  I could see him grimace as he went down.  Immediately, I worried that he might have damaged his hip replacement.  The men who were close leaped to his assistance, but being the stubborn, independent man he still is Ken wouldn’t allow the help.  Instead he struggled to right himself.  Although the glass is about three-quarters of an inch in thickness we were all concerned it might be broken.  If it wasn’t, the possibility of more pressure on its tilted position  against the base might be the final insult causing it to break and really do him injury.   Still refusing help, he managed to climb over the glass and pull himself erect.  The men picked up the top placing it back onto the supporting base.  No damage and no harm done except for Ken’s shin bone, which was pretty well skinned.

Within a few minutes he had forgotten the accident and settled down next to me.  All evening long he asked,  “Whose house is this?”  Repeatedly I answered, “Julie and Tim’s house.”  Not once, but it seemed like a hundred times.    Comparing benchmarks, I could see considerable change during the past 365 days.

We had dinner, opened gifts, exchanged small talk and everyone went home.  As soon as I entered the house I slipped him two Tylenol PM tablets.  He had been sleepy in the car, but by the time we got inside, brushed his teeth and took the pills, I could sense him slipping into one of his other characters.  It could have been 12-year-old Buddy, who guards the house like a stockade with the Indians circling.   Midnight and I was so ready for sleep, but wanted to wrap a few more packages.  He began pacing, rattling the outside doors to make sure they were locked.  After three or four rounds, I lost my temper and he ordered me to leave.  Instead I busied myself finishing small chores and wrapped the waiting gifts behind locked doors.  In between his wanderings I peeked out to make sure he was all right.  Eventually, he  settled down and went to bed.  It was 3:00 a.m.

When I woke on Christmas morning, the day was well underway.  Feeling somewhat refreshed, I quickly got up, dressed and spread out a small morning buffet to munch on for two of our sons, their wives and granddaughter, Jessica.  I wondered if I would feel up to driving to Antioch (some 50 miles away) with the gifts for grandson Sean, his wife Lani and family.  That decision would come later.  The late-morning visit with the others was lovely.  I was glad they came, and Jessica, our youngest granddaughter, being such a sweetheart had made us several gifts.

Approaching 3:00 in the afternoon, my morning family had other places to go and friends to see.  A little late for us to be leaving for Sean’s, but if we left right then, opened the gifts and had a bite to eat, we could be home by 9:00.   In addition, we needed to be back when Tim brought their three dogs for a half week’s stay.  They were off to Atlanta to visit son Pete, his wife Renae and four-year-old Mason, one of their three grandchildren.

It’s been about three  years since we lost our last dog.  Even though I miss not having an animal in the house, I don’t miss having to clean up the piles of hair that seem to float in the air landing on and under everything.  Nor do I miss the compulsory yard-duty clean up brought about by their needs.   It will be interesting to see how Ken does with three spunky dogs.  Meanwhile, hectic though they can be I love the Holidays.

Originally posted 2008-12-26 07:34:56.

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