Adaptation

I have no idea who said it, but somebody did.  “The job of a writer is not to chronicle gigantic events - but to make small ones interesting.”  I’d like to believe it is true.  The art, of course, is to make something small...well...seem interesting.  

Someone else supposedly said, “Write what you know.”  And yet another person allegedly stated, “Always write to your audience - have a conversation with them.”  

So, let’s see here.  Something small. Something I know about.  And, something that my audience would like to hear.  That last one is a little tricky.  Hopefully, anyone reading this will want to keep reading.

Each spring and fall, I make a snowbird trip with my parents.  Basically, I help Dad get Mom to and from Wisconsin and Florida.  Mom is living in the advanced stages of Alzheimer’s Disease and therefore is helpless by every definition of the word.  Chewing and swallowing are really about all that she is able to do for herself.  Dad is her twenty-four-seven caregiver.  Traveling fifteen hundred miles with her is more than he would be able to handle by himself.  My brother and I feel it is important for him to continue to spend the winters in Florida, away from the harsh Wisconsin weather, like they’ve been doing since 1983.  

Therefore, Dad and I load Mom into a bed of sorts in their van and two and a half days later arrive at their small trailer in Florida.  The twenty-four hours we spend in the van are definitely material for a story on its own, however I’ll leave most details of that adventure up to your imagination.   

Closing-up the Wisconsin house, draining all its water pipes and then squirting antifreeze into them is perhaps another story that could be told in detail, too.  Equally challenging is opening the trailer in Florida whose only occupants between the end of April and first of November is bugs - hundreds of them.  But I am going to focus on what happens after I get the trailer clean enough for us to eat and sleep in it.  

Actually, the story begins back home in California.  It is in my office that I plan what will happen after I’ve done the preliminary cleaning of the trailer.  It involves a menu and creating a shopping list.  I’ve been doing these trips since 2005.  Therefore I feel as if I have the routine down to a science where I simply follow a plan.  In the fall of 2005, I didn’t have an elaborate plan yet and it was on that trip that Mom had two seizures in the same day between Kentucky and Georgia.  Little did we know that morning when she walked with us out to the van, that she would never walk again.  Every detail of any plan is subject to change.  That’s life in the real world.  Mom was still talking at that point and at times could follow and participate in a conversation.   But everything changed quickly on that, my first snowbird, trip.  That, too, could be a story, but for this one, is only backstory information.

For thirty years I worked in several different positions in nursing homes, hospitals, and assisted living communities.  It is ironic that eventually when I became a licensed administrator it was in communities exclusive for elders living with Alzheimer’s Disease and related dementias.  Again, there are thirty years of stand alone stories to be told.  Maybe even a book.  The most interesting stories are the ones that were unexpected of course.   Surprises do make life interesting.  Or, challenging, to say the least.

Perhaps yet another detail that could be mentioned, is the permanent-wave and hair cut day.  That is the day after I fly, which is the day before we leave on the road trip in either direction.  It has evolved over the years, becoming more and more difficult as Mom has declined.  We now lift her onto the shower bench for the three minute clear water rinse, the neutralizer application, the ten minute wait, the removal of the rollers and the final rinse.  In the meantime I’ve been practically standing on my head for the initial roll up that ends twenty-five minutes before the hoist into the shower and when the permanent solution is applied.  But, that too is not the focus of this story.

No, this story is about cooking and freezing enough meals to last them for six months.  Typically it is too hot inside the trailer to do the cooking, so I make use of an electric dutch oven and a deep-dish electric fry-pan.  I set up one on a table in the screen room which is attached to the little trailer and the other on a folding table outside on the stoop - next to the clothes line.  Of course the kitchen itself is inside the trailer, so all day long and I am up and down, in and out, going to the water source as needed.  I get the job accomplished over two to three days.  They stay in both Florida and Wisconsin for six-months so that means between one hundred seventy and one hundred and eighty days in each place.  

The meals I cook need to freeze well.  And, most importantly they need to be meals that Mom can eat.  As her abilities have declined, I’ve adapted.  I still don’t ever use recipe measurements, but my shopping list indicates all dishes that that item will be used in.  Therefore I know to buy at least three whole chickens because I need chicken in five different dishes, for example.  I bake all three chickens at once and then after pulling them apart and dicing their meat, I divide them into five zippered bags and toss them into the refrigerator.   This fall, I needed ground beef in three dishes, so I purchased about five pounds, fried it up and put three bags of equal portions away to be pulled out when needed.  They will eat each dish twelve times over the course of six months.

These days, every meal is a mock of something else.  Lasagna Marinara Casserole, for example, has the same flavors as a classic lasagna.  However, its pasta is elbow macaroni and its ingredients have been diced to minute pieces.  Fortunately Dad will eat anything.  Every dish is tasty, but the texture is adapted for Mom.  

“What did you eat for dinner this noon?” is a typical question I’ll ask Dad during a phone conversation.  Nine times out of ten, he’ll have to go look at the label on the empty container.  “Baked Potato Casserole, maybe?”  I’ll prompt.

“Nope.  It say’s, Chicken Stroganoff Casserole.”

“How did Mom do with that?”
“Oh she eats that one really good.  That seems to be one of her favorites.”

“Do you like that one?”

“Sure.”

Of course there are some items that I’ve had to drop from my menu.

“I can’t get Ma to eat that Strata Casserole.  I don’t think she likes it.”

“Did you try an alternative to see if it is the strata or that she just wouldn’t open her mouth today?”

“Yeah, I gave her some yogurt instead and she ate that good.”

“It will be interesting in a couple of weeks when you try strata again to see if she eats it then.”

One thing I should mention is that it often takes a full hour to feed Mom one meal.  Getting more than a half-teaspoon of something into her mouth is tricky.  The exception is something sweet.  The other day I was feeding her lemon pudding cake with a sugary glaze and  she opened her mouth wide enough for me to shove pieces nearly the size of half a marshmallow in at at time.   

Their breakfast meal is the same every day of the week.  By choice, Dad offers no variety to what either of them eat, but the main entree, if you can call it that, for Mom’s breakfast is a can of Ensure.  He also feeds her a mashed banana, a slice of cinnamon raisin bread and a glass of orange juice.   He, on the other hand, has a slice of toasted whole wheat topped with peanut butter and raspberry freezer-jam (made from their bushes in Wisconsin) along with a banana and a glass of orange juice.  Dad learned how to make freezer jam when Mom’s dementia was preventing her from doing it alone, and then of course he took over completely and now does it solo. 

The meal that they call supper, the one he feeds her around four o’clock in the afternoon, is light.  It may be oatmeal, or yogurt but almost always ends with a dish of ice cream and a cookie.  Once in a while, he’ll scramble an egg or make pancakes for them.  He was very proud of himself the first time he fixed scrambled eggs.  He called me to tell me he found the recipe in the Betty Crocker cookbook.  

When I began this story, I had every intention of it being about the process of cooking and freezing one hundred and fifty meals.  But, like most conversations I have, it drifted away from my plan.  And it really is, in a nutshell, what life is all about.  Someone has said, “Life is what happens when you’re busy making plans.”  

Living really is about adapting to change.  I would not be able to accomplish what I set out to do on these snowbird trips without a plan.  However, what is key is being willing to adapt and putting plan B or C or D or even E or F into action at a moment’s notice.  I remember one year dropping the bottle of black pepper into a potato soup I was making and freezing for my folks.  It was still pretty strong, but edible after I basically doubled every other ingredient.  When labeling each container for the freezer, I simply wrote:  Peppery Potato Soup.  Adaptation.

 

  

Proverbs 3: 5-6  Trust in the Lord with all your heart and lean not on your own understanding, and He will direct your path.

Inventing the Truth

What is that old saying, 'those who can't - teach.'  I can relate to that - to a degree at least.  It is easier for me to teach concepts to other people than apply them to my own personal writing.   But every writing session that I teach, I find nuggets to apply to my own work too. 

Currently I have 13 casual writers who meet with me twice a month at the San Leandro Senior Center.  I've been with a handful of them for two years - and every last one of them has improved in their writing skills.  More recently I started a group out at the Pleasanton Senior Center, where I have 14 enrolled.  It is very new and some of them appear very accomplished and I must admit are a bit intimidating.  However, I am more excited than ever to facilitate another group of people who have the desire to write. 

In most cases these are memoir type of stories and I find it such a privilege to sit among them and read and listen to them read about episodes from their lives.   I've spent the better part of today taking notes from authors of Memoir-Writing books, creating a lesson around the concepts presented.  "Inventing the Truth" which may sound like an oxymoron, explains that the details of life are often very boring and so as a writer one has to preserve the truth and write creatively to create the story.  It is also sometimes called Creative Non-Fiction, the writer may not have been present to have overheard a conversation that took place, but in order to truthfully convey the story, he or she has to recreate it or invent the truth.  But most importantly, a memoir writer has to write with love.

William Zinsser, author, as well as editor of Inventing the Truth: The Art and Craft of Memoir explains that  Pete Hamill’s A Drinking Life, Mary Karr’s The Liars’ Club, Tobias Wolff’s This Boy’s Life and Frank McCourt’s Angela’s Ashes,  all look back at troubled childhoods - with compassion.  They were all written with love.  There’s no self-pity, no whining, no hunger for revenge; the authors are as honest about their own young selves as they are about the sins of their elders.  Readers will connect with your memoir if it is about the journey and humanity.  What they won’t connect with is whining.  Dispose of that anger and rage somewhere else.  Get your intention clear before you start and then tell your story with integrity.

In 1883, Daniel W Whittle wrote the words to a song based on Ezekiel 34:26:  There shall be showers of blessings.  In 1897,  Johnson Oatman, Jr. wrote the lyrics based on Proverbs 10:6: Blessings crown the head of the righteous, to a hymn known as Count Your Blessings.   I grew up with these hymns being sung quite often, as I recall.  It took years for their meaning to fully sink in and for me to understand why they were such cherished hymns.   Regardless of what is going on in our daily lives, God is raining down blessings on us.  Count your many blessings, name the one by one and it will surprise you what the Lord has done.

Inventing the truth isn't about wearing rose colored glasses  - it is putting everything into perspective and telling the truth about your life without leaving out the many blessings you've received.  

It truly is a blessing to be sitting in my chair these days!!

June 16, 2012
This is the day that the Lord has made; let us rejoice and be glad in it!

The CVA in 69

    I lifted the metal lid to discover that the plate of food had three mounds on it.  I scooped a spoonful from the green pile and lifted it toward his mouth as he deliberately turned his head away from me.  I then made a split second decision – a risky one: 
     Glancing around in hopes that none of my co-workers could hear me, I whispered, “Hmmmm this smells a little like cat food to me.” 
    He laughed out loud but I don’t think he wanted to. 
    “Have you ever tasted cat food before?” I teased. 
    He turned to me, made eye contact, grinned and then opened his mouth to accept a spoon filled with mashed peas.   That was the first day I met Mr. Andrew Michael Johnson, Jr. – the new patient in the middle bed in room 69. 
    Three hours earlier at the three o’clock shift change report, I was briefed about this newest addition to the ninety-nine patients who resided in the Chippewa Lake Nursing Home - a sixty-two year old male.  His name is Andrew Michael Johnson, Jr., but he preferred to be called Mike - “an uncooperative, Aphasic, Cerebral Vascular Accident (CVA) patient with a Right Hemi Paresis and Dysphasia,” the day nurse read aloud from the gray metal spring-loaded chart.  “He is a farmer who didn’t come in for supper one night.  His wife found him in the barn, unconscious.”  He had suffered a stroke, specifically a blocked vein that burst open and bled into the left side of his brain, and as a result he woke up unable to walk, use his right arm, swallow properly or talk.
    “The hospital therapists determined he was a candidate for rehab, but he refused to cooperate and they closed his case,”  She concluded and then added that reportedly, he’d kicked at a nurse while still in the hospital earlier in the day.    Mike was described as very angry, stubborn and uncooperative.
    “Be careful around this one,” she warned.
    “Okay.” I acknowledged. 
    His name was added to my roster for the afternoon shift that was to end thirty minutes before midnight. 
    I entered his room to introduce myself and observed that he would not look at me.  In fact, he totally ignored me.  No mention was made of him being hard of hearing, so I proceeded as if he was hearing my every word.  Some stroke patients who lose their ability to speak are also unable to understand or interpret words spoken to them.  I then accidentally tripped over my own feet. Catching my balance, I noticed a smirk form on his face and a small involuntary snort of air blew out his nose.  Unintentionally I had discovered that he was aware of all that was going on - visually speaking, at least. 
    I quipped, “Yesterday I ripped the seat of my pants open when I slipped on a puddle of pee in the hall.” 
    He laughed out loud.  Aha, he did understand.  My silly little impromptu joke worked.  Perhaps this Mike character could be distracted from his world of anger after all, I thought to myself. 
    A couple of hours later, the meal trays had arrived in the Two-East wing.  I looked for Mike’s specifically because I wanted to be the one to feed him. No Added Salt – No Thin Liquids - Ground Solids. 
    As I carried the supper tray over to his wheelchair I asked, “Mr. Johnson, are you hungry, sir?” 
    No eye contact.  No response. 
    I sat down next to him and uncovered a plate of three ice-cream scoop sized piles of  brown meat, green vegetables and white mashed potatoes.  Mike had swallowing problems so his food had to be ground to help avoid choking as it passed through his partially paralyzed throat.  That condition confirmed his inability to speak, as well.  Coaxing him to eat, I learned that humor was an attention getter with Mike, my new-found buddy in 69B.
    Mike continued to be very stubborn and took his anger out on those who tried to help him.  This can be typical of people who suddenly wake up disabled; every task performed for him by someone else was a reminder of his sudden acute losses.  I could make him laugh and I could get a smile out of him.  In his stubbornness he would often try not to laugh at my attempts to humor him, but since the part of his brain that is the keeper of emotions was damaged by the stroke, he had little control over them. He’d shake his head and roll his eyes at my silliness.  As the months passed, Mike began communicating with me more and more.  He remained silent and would clumsily make gestures with his left, only functional, arm. He would make and maintain eye contact and at times we communicated only through our eyes.  His look could encourage me to continue or warn me to stop.  He would attempt to take a few steps with me and an ankle brace supporting him – something he refused to do with my peers.  Many days he refused to eat unless I was the attendant feeding him.  He would only allow me to be the one who gave him a shower.  An Occupational Therapist brought a communication board into his room – a patient can simply point to a picture or phrase to indicate what he needs.  Mike would have no part of it.  In fact, he threw it across the room.  But, he had me, with whom he chose to communicate.  I think he trusted me to be genuine.
    I learned from his wife, Gladys, that they had married young and that he and his new bride moved in with his parents on the family farm.  Shortly thereafter, his father passed away and he became the primary breadwinner.  Over the years they had a daughter and a son of their own who had each grown up, married and moved several miles away. Like me, neither child was interested in keeping the farm in the family.   Mike worked hard farming the land and milking Guernsey cows.  He didn’t have a lot of free time, but when he did, he enjoyed driving around the countryside exploring back roads in the part of the county known as the Red Hills.   At the time of his stroke, he owned a brand-new pickup truck.  “It was his pride and joy,”. Gladys sighed, fighting back tears.  Gladys sold the herd to help pay the pickup off and eventually took a job at the Onion-Ring Factory.  She would visit Mike for a few minutes several days a week after a tedious shift spent sorting out bad onions from the good ones on a conveyor belt.  She would drive his cherished truck up Main Street still donned in her soiled white apron, black hair net and skin reeking of onions.  She’d say good night to her husband before heading home, exhausted.  Gladys ruefully confided that Mike was angry with her because she sold his cattle and took a job at the factory.  Knowing how much he loved riding through the country she wished that she could afford to trade his beloved pickup-truck in for a car because she couldn’t possibly get him in and out of the truck’s high cab.  But she also knew selling his truck would be another devastating blow. She said that she even contemplated selling the farm but again was afraid of his reaction.
    “It would kill him. The farm has been in his family for three generations,” she choked. 
    I attempted to console her saying, “I don’t think he is angry at you, I think it is the circumstances.”
    “I’m not so sure.  Not so sure...I never got along well with his mother who became very difficult in her old age.  I used to say we should sell the farm and put her in a home,” she sobbed, “Now I’ve put him in a home.”  
    Apparently, Mike had gone deeply in debt building an expensive, state-of-the-art silo and buying his dream-come-true midnight blue Chevrolet.  The meager rent Gladys received from renting out the fields, barn and silo to a neighbor barely made the loan payments.  I am convinced that he felt guilty putting her in a financial bind.  Mike had a lot to feel frustrated and angry about; and to feel guilty about too. 
    When winter was clearly over and the days began to warm, I made the necessary arrangements to take Mike for a joy-ride, in my car. The Director of Nursing Services was reluctant to go along with my plan, giving me a lecture on professionalism and warning me of the risks. 
    “I wouldn’t advise it – it isn’t professional to become too friendly with patients - they start expecting preferential treatment.  But you are off duty y’know.  If anything happens, it is your responsibility.  But, I also can’t tell you that you cannot do this.”  She cautioned. 
    Mike sobbed non-stop the first few minutes of our drive.  Then he began moaning and clumsily pointing with his left arm showing me where to turn.  We were driving in the country when he suddenly pointed and mumbled quite clearly, “farm” and then immediately burst into tears.  He had taken me to his farm.  That was the first of many trips and adventures we would take with Mike navigating – he was my back-roads GPS.  Eventually Gladys planned a family reunion at the farm.      “I’ll pay you to escort him - what do you think?”
    “I think it is a great idea.  You don’t need to pay me.”  
    His son and I carried his wheelchair up the steps into the screen-porch and rolled him through the kitchen door.  Tears streaming down his face, Mike was home. 
    Mike detested life in the nursing home.  He refused to participate in any therapy modalities or activity programs.  However, secretly, in the early afternoon before I came on duty, he would agree to go to the recreation studio where he built a bird-house from a kit using his awkward non-dominant left hand and a vice to hold the wood in place. Later the activity therapist told me of his frustration and outbursts of anger while attempting to complete the project.  After sanding, staining and gluing it together, he sobbingly presented the birdhouse to me.  Mike had made a gift.  A gift for me. 
    He continued to refuse to use a communication board, but he would clumsily write messages in the air with his left arm.  I was the sole person with whom he chose to communicate.  When I would finally get something figured out, his emotions would get the best of him.  It is amazing how well we communicated without him uttering a word.  He had a life-long friend named Joe, who would occasionally come to visit.  One day, being a bit forceful with him, I was attempting to get Mike to say the name Joe.  Typically, he kept refusing to try and he was growing angry with me for pushing him to do so. 
    Finally I said, “Listen Mike, I know you can do it, tell me who your best friend is.” 
    He turned, looked me in the eyes as his filled with tears, and as clearly as I ever heard anyone speak, he responded, “You.”   

“Be devoted to one another in love. Honor one another above yourselves.” Romans 12:10 “And Jonathan made a covenant with David because he loved him as himself.” I Samuel 18:3

The Stranger

    “Help Wanted – Will Train” caught my eye.  Upon closer investigation of the smaller ad font, I discovered that it was for a Nurses Aide position at the nursing home uptown.  “No experience necessary.”  I hadn’t been in the habit of reading the Chippewa Lake Tribune, nor was I seriously looking for a job. After all, I was farming with Dad, but we all knew that was only temporary - at least I knew that.  The words ‘Will Train’ intrigued me enough to pick up the phone and schedule an interview.  Tomorrow at 1:15.

    “It pays a dollar sixty per hour and isn’t glamorous,” the Director of Nursing Services warned.   “It involves wiping a lot of butts,” she said peering over her readers just before taking a deep drag off the cigarette pursed between her ruby lips.  She continued, talking fast while holding her breath, placing the smoldering stick in her desk-top ashtray. “If you think you’ve got what it takes – the job is yours,” she managed to get out before resembling a radiator releasing steam as she exhaled a cloud of smoke forced over her shoulder.

    “You must know my daughter Sally.”

    “Yes, I think she was a grade ahead of me.”

    “How old are you?”

    “Eighteen.”

    “You aren’t in college, Keith.  What are your goals?”

    Goals - do I have any goals?

    Her five-line phone rang and I was spared from answering the difficult question.

    My palms were still sweaty as I slipped a dime into the lobby telephone to make an appointment for a physical examination at the clinic next door. 

    “Dr. Troyer has an opening at ten minutes to four this afternoon, can you make it?” 

    “Sure, I’ll be there.” My voice trembled in response.

    As instructed, I purchased a pair of pants, a smock with pockets and a brand new pair of squeaky-clean tennis shoes at Sears and Roebuck.   Seeing my reflection in the dressing-room mirror made me proud - I looked like a professional dressed in white head to toe.  By the time I got home from the interview, I had my uniform, physician clearance and a job. Someone had actually hired me.  Me!

    Just before five o’clock, I called the Director of Nursing Services declaring, “I can start tomorrow. . .I mean, if that’s okay...”

    “Come in at two-thirty and we’ll get your paperwork started - bring your physical and wear your uniform.  You’ll start at three.  I’m counting on you to show up now.” 

    “Good bye.  See you tomorrow.”

    I tried not to take the negativity personally.  But it did make me nervous that already she was assuming I might be not be up for the job or be some kind of flake.  I was going to have to prove myself to her.

    The following day, I arrived at ten minutes after two.  I met with the Office Manager who promised that I’d net fifty dollars a week.  My hands were shaking as I signed the new-employee documents.  The Office Manager introduced me to the evening Charge Nurse and I listened to the change of shift report, trying my best not to sweat too much.  I was assigned to shadow Betsy, a girl who had been a couple of years behind me at Land-O-Lakes High where On Wisconsin was sung at every pep rally.  I would later learn that Betsy, who was between her junior and senior years, had only been there for four weeks herself.  As she was introducing me to the Two-East Wing, I heard someone scream what sounded like, “Jimmy, Carl, Franny, Annannanananaananaananananananan-anana. . .”

    “What was that?”  I asked a bit startled.

    “What was what?” Betsy answered with a bewildered look on her face.

    “That screaming...”

    “Oh that’s Leona, don’t pay any attention to her. . .”

    I am not sure if it was because I had specifically asked about her or not, but Miss Leona Johnson was the first patient assigned to me.  I read her History and Physical discovering that she had been living in the nursing home for more than five years and was admitted with a diagnosis of Organic Brain Syndrome. I hadn’t a clue as to what that meant, but it sounded serious.  When I met Miss Johnson, the disease had progressed through most of her brain, leaving her extremely impaired.  It had affected her language skills to the point that she was incoherent often making sounds that weren’t words.  She was incontinent of her urine and bowels. She had forgotten how to feed herself or perform any of the self-care tasks and daily routines that we all take for granted. 

    “She’s like a newborn baby,” Besty explained.  I remember thinking, but she’s not a baby - she has lived for over seventy years.

    I read in the Social Services section of her Medical Record that Leona had been a grade school teacher.  She had taught in several one-room country schools in the county; perhaps even Walt Whitman, the one I had attended.  I loved my teacher, Mrs. Olson, who taught me for the first four years in the room that housed grades one through four.  I could not imagine Miss Johnson being a school teacher.  In fact, my first impression upon meeting Miss Johnson was that I wondered if she had been impaired like this her whole life.  There would be times when she would yell out what sounded like they might be names that I imagine could have been a roll call but would soon turn to gibberish.  “Johnny, Frannyannyannyannyannyannyannyanny. . .” she would loudly yell before drifting off to a barely audible whisper.  It would take all the strength she could muster and physically wear her out.  Miss Johnson lived in a haze.  Deep in a space that no one could reach into.  Buried alive in a grave so deep that she couldn’t reach out.  A woman who taught dozens, if not hundreds, of children the three-R’s, no longer responded to her own name.  

    No matter how loving and caring I was, as a member of the team who tended to her, I remained a stranger.  I was the stranger who would give her a gentle kiss on her wrinkled brow as I would awaken her from sleep. 

    “Good morning Leona.  Leona, can you open your eyes?  I am going to help you get ready for breakfast, Leona.  Leona, are you hungry this morning?”

    I was a stranger who knew that no matter what I said, perhaps the only word that struck any kind of familiar chord with her was ‘Leona.’ My awkward communication attempt and repeating her name in every sentence made about as much sense as her unintelligible roll-call.  At first I struggled with if I should call this school teacher by her first name as my peers all did, or address her as Miss Johnson like she was accustomed to hearing from her students.  I then learned that one of her roommates was named Mabel Johnson who would answer to Miss Johnson upon hearing it spoken.   So it was settled, I’d call her Leona.  

    But, I remained a stranger to her.

    A stranger who removed her soiled diaper and gave her a bed bath every morning. 

    A stranger who took dentures from a cup filled with tap water and gingerly slipped them into her dry mouth trying not to gag her. 

    A stranger who lifted her from bed to wheelchair. 

    A stranger who gently combed her snow-white, wispy hair into a ponytail, twisted it into a bun, and secured it with pins to the back of her head.

    A stranger who rubbed a moisturizing cream into her winkled face.

    A stranger who slipped a borrowed sweater atop a fresh hospital gown and tucked a hand-crocheted robe over her bare legs.

    A stranger who pulled a pair of socks on her cold, blue feet trying to pass over her yellow brittle toenails without them snagging. 

    A stranger who laid a pair of glasses on the bridge of her petite nose and rested the bent bows on her ears. 

    A stranger who wheeled her out to the eating area in the Two-East lobby. 

    A stranger who tried to make conversation with a stranger as if this stranger was not stricken by disease.

    Leona had a brother,  a retired dentist from Chicago, who would make the drive with his wife up to Wisconsin’s north woods once or twice a summer.  I can only imagine how difficult it must have been for Dr. Johnson to see his baby sister in this condition.  He would sit in front of her and loudly beg, “Leona, who made your teeth?”  Of course Miss Johnson could not answer, so he would repeat it again, a little louder. “Leona, who made your teeth?”  After several futile attempts he would retreat and brush the tears from his reddened cheeks.  He and his wife would sit there mostly in silence for approximately twenty to thirty long and presumably awkward minutes before heading back to their cabin on the lake.  Strangers saying so-long to the stranger that they once knew.

    Leona was the owner of only a few possessions.  She owned an old pair of scratched lenses in melon-colored frames that probably felt strange to her eyes which she rarely opened.  She owned a set of false teeth, uppers and lowers, that did not fit her shrunken mouth and often dropped out of place.  And, one dress.  This dress was the sole personal item that hung on the lone wire hanger in her closet, all the rest of her daily attire was borrowed from the central-stock of used clothing donated by the families of patients who had died.  The lap-robe came from the bin known as the Mennonite Bin; it housed dozens of handmade lap-robes donated by women from the Mennonite Church.  Leona’s dress was black with black sequins and obviously several sizes too large for her small frail frame of bones and hanging flesh.  It was a gown that gave a clue to the past.  A clue to the stranger who once wore this fancy outfit.  There was a wrinkled note pinned to it.  The note read, “4-1-1969  This dress is only to be worn by Miss Leona Johnson in the event of her death.  Dr. A. H. Johnson, DDS - Chicago, Ill.” 

    I would love to have known the Leona who lived in her body before disease ravaged through her brain destroying her intrinsic awareness of self.  It turned her into a stranger to herself and everyone she would encounter.  There was a clue that this stranger named Leona gave about her former self; on very rare occasions she would pat my arm when I sat feeding her.  I would like to believe she was showing affection and gratitude to me, a stranger, for helping her. My assumption was accolade enough.  But as intimate as our contact was, we remained strangers. 

    The former schoolmarm never grasped the impact that she had on me.  Even with all of her impairments bared, she was my teacher.  I practiced my skills on her.  She helped me realize that I did have a talent and passion for caregiving.  She taught me that I could make a difference.  I’d never engineer a plan to build a bridge to span the Golden Gate – but I could have an impact on people, one person at a time.    She helped me realize my mission and purpose. She gave me a goal.  I believe that there are no accidents in life.  Leona and I were supposed to meet at that specific time in our individual lives.  We were destined to remain strangers. 

    Our modern-day culture values and celebrates the vitality of youth.  We pay young athletes millions of dollars to entertain us.  The same goes for actors who get nipped,  tucked and plumped in order to stay youthful and make millions of dollars for doing so.  They represent our society’s role models - who we are supposed to long to be like.  The rich and famous, often notorious. Teachers, caregivers and human-service workers receive little praise, appreciation or encouragement.  Our efforts are not valued.  We work at the bottom of the pay scales and are often asked to volunteer our time and talents.  But, folks like Leona and me receive gratification from knowing we are in the soul-touching business.  We are blessed with opportunities to make a difference.  Despite more than a fifty-year age gap, Leona and I were peers. 

    Peers who never really met.

    Eventually Leona’s heart beat its last beat.  A black sequined dress, a set of upper and lower porcelain teeth and melon-colored frames with scratched lenses accompanied this pale, lifeless stranger to the Beaver Falls Mortuary.  Leona never knew me, and I never knew her.    But I’d like to believe that we were both better off because our paths crossed and our souls connected. 

    So there you have it, Miss Leona Johnson was the stranger I never knew, who changed my life.

“Each of you should use whatever gift you have received to serve others, as faithful stewards of God’s grace in its various forms.” I Peter 4:10

Whenever I write anything about patients I've known from a senior living community such as "Leona" in the story above, I've changed names and a few circumstances to protect the identity and privacy of all involved. 

Successful Transfer?

It would appear that I've successfully transferred a few items over to this blog.  There may be hope for me yet!  :-)

The DWP

   

    It had seen better days. 

    A few neatly folded Kleenexes;

    a white porcelain jar with a yellow metal cap that read Carmex Lip Balm;

    a worn Emory file; 

    a brown leather wallet empty except for an expired Wisconsin Driver’s License, a Medicare card and two photos revealing towheaded, blue-eyed girls were housed together in the main compartment. 

    The side pocket with a broken zipper closure held a rattail comb;

    a shimmery-white tube of Vaseline Intensive Care hand-cream;

    and, a clear plastic container filled with green Tic Tac Candies. 

    A small, more secure inner pouch was home to an empty keyring with a General Motors emblem etched into it. 

    These items were the sole contents of a cheap, dirty, obviously once white purse.

    By 2001 Mom was living in what is clinically and coldly referred to as the middle stage of Alzheimer’s Disease.  That statement still makes me cringe to look at in print.  It is about as prejudiced as a sentiment can be – suggesting that a group of individuals who lived full and diverse lives are now so identical because of disease that they all fit into a descriptive box simply labeled “middle stage.”   Of course the reality was that she indeed had all of the symptoms and often desperate behaviors accompanied by dementia that predictably happen when someone is living in the middle stage of this affliction. 

    Mom was desperately clinging to a prop – a security blanket, as it were.  If that dirty-white-purse was out of her sight, it caused  her panic. 

    That DWP represented an era of when life made sense.  

    The ability to reason and focus,

    to recall episodic memories,

    recognize a face and match it with a name,

    to plan and dream had all been a vital part of her life for over sixty-years before disease struck. 

    The only thing familiar in a world filled with unrecognized faces, confusion coupled with myriad opportunities to make mistakes and fail, was that DWP.   She clutched and protected her DWP with all the strength and courage she could muster as she would secure the worn strap into its cradle atop her left shoulder.  She tucked the DWP under her arm, tight against her breast, like a mother hen does with her endangered chicks.     

    I recognized her vacant stare – it was like an omen signaling that the day was drawing near when I, as an unrecognized strange man, would probably frighten her.  My intimate approach of calling her Mom would cause her to divert her fear-filled eyes away from contact with me and embrace that familiar DWP;  grasping it tightly would promote calm when a unknown man was calling to her in a threatening and in an all too inappropriate way by naming her Mom.  “Mom, it’s me!”  Oh how I dreaded that inevitable phase when she would forget giving birth to and raising me.   “Where is my purse?!?!?”

    As a professional who had studied Alzheimer’s Disease and as one who had met literally dozens of people living with the affliction that cruelly and determinedly destroys the brain, like a Pac-Man icon, cell by cell – region by region, I knew firsthand of the importance of props.  Props that promote a perception of safety, calm and familiarity in a nightmarish existence consumed with confusion and panic.  I had trained staff and counseled families on the merits of a familiar object always kept within sight for a person living with dementia.  However, as a son – the unprofessional, I was embarrassed by the DWP.

    Perhaps the DWP could be replaced and she would learn to recognize a new and improved, better-suited purse, I foolishly tried to convince myself.  A purse that would reflect the good taste of the meticulous person, that she used to be, would be so much more appropriate.   It would make me feel more comfortable.  I knew it was an idea created by pride and faulty logic, but emotionally I wanted to get rid of it.  Totally destroy it.  The DWP’s presence was telling.  That purse alerted complete strangers to the fact that all might not be well.  It may as well have been a sandwich-board hanging from her neck by a noose advertising in bold red letters “something’s run amok with me!” 

    I am the master of keeping secrets hidden away in my closet.  That little DWP was revealing one of them.  And it was a big one.  I couldn’t, for the life of me, keep that door shut.  “Something has gone terribly wrong – Mom is missing!” screamed the DWP merely by its presence. 

    It represented security to Mom;

    but to me the DWP indicated that she was losing battle after battle.     

    Alzheimer’s was winning the war. 

    There was nothing that I could do. 

    No one could do a thing. 

    The consequences were imminent. 

    That closet door was blown wide open – hinges broken and its key lost forever. 

    I detested that truth-revealing, loud-mouthed so and so;  that little dirty-white-purse!

Ten years later:  2011   

    Oh how I miss that DWP.  I savor the era when Mom would hold eye contact, talk and had the cognition to look for her purse.  In 2001 she often recognized me.  At times she knew that I was her son and that she gave me my name.  There were moments when she could stand up tall on her own two feet, focus her eyes onto a connection between our souls, walk toward me, hug me and clearly enunciate in a confident voice “I love you Keith.” 

    This disease has taken Mom away.  We have her fetal-positioned body – the keeper of her beating heart, wheezing lungs and withering brain.  On rare occasions, upon hearing her name called, she will raise her eyebrows; with eyelids remaining closed.  Usually Dad’s voice is the only stimuli that will induce a response or reaction. When she does open her once green eyes, they reveal that they are no longer windows.  They are empty like an abandoned store’s plate glass display – clouded over with cobwebs and dust; useless.  They don’t focus on still or moving objects, but will blink if something gets too close.  Instincts are about all that she has in tact these days.

    Back in 2006, on a road trip, Mom had an unusually alert day.  She was stringing words into sentences and some even made sense.

    “Mom, do you know who I am?”

    “Sure I know you.” She grinned.

    “What’s my name?”

    “Lois.” She answered proud as can be.

    “That’s right, Mom.  I love you.”

 I knew that Aunt Lois, the person Mom was closest to her entire life was, in her world of confusion, her way of saying I know you, you’re family.  I’m fairly certain that Mom had forgotten that she had two sons and that I was one of them.  Lois.  The name that represented someone who loved her and someone that she loved in return.  I was Lois.  And, that was close enough for me! 

   

Mom is missing, but all search and rescue efforts were called off sixteen years ago when we heard the prognosis:  a life sentence of ten to twenty years.

    Solitary confinement.  

    No early parole.  

    Not even time off for good behavior. 

    Grin and bear it.

Mom’s eighty-year old soul is alive within her. 

    No rest-in-peace uttered.

    No closing hymn sung.

    No benediction given. 

    No pipe-organ postlude played.

    No formal celebration of her life. 

    No funeral procession to the cemetery. 

    No grave-digger employed. 

    No final goodbye appropriate. 

I do mourn.  I mourn the passing of that dirty-white-purse and live with the loss - often longing for its return.

"Peace I leave with you; my peace I give you. I do not give to you as the world gives.  Do not let your hearts be troubled and do not be afraid."  Book of John, 14:27