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Posts Tagged ‘darkness’

man lost in woods
People with Alzheimers may wander away, never to be seen again.

A while back I wrote for the magazine section of our local newspaper’s  Sunday edition, aptly titled “Brightside.”  

The articles were to be just that: bright and happy stories, good-news stories about people; what they were doing, interesting hobbies or talents, about gardens – either beautifully filled with flowers or vegetables, do-it-yourself projects or whatever was out there to make someone smile.  The section was all about people found to be on the “Brightside” of life.

 

It was before conglomerates gobbled up all of the family-owned newspapers pulling them into vast impersonal syndications buying most of their stories from a news service.  It was a less-hurried time when people actually read the bulging paper tossed on their front porch.

One of the very interesting people who appeared in the section was a librarian whose career spanned most of her adult life.  It wasn’t until she was in her later years that she decided to become a writer.  Surrounded by books all day, every day she knew where the “holes” were on the shelves.  Time after time children came up to her desk and asked about bugs.  Search though she did, there were no books about bugs for children. Finding a “hole” she began to fill it.

Doing her own research through adult scientific material, she translated the intricate entomology facts into “kid” stuff.  Successfully, she wrote, while the publisher’s artist illustrated, a series of charming children’s books about bugs.  Someone tagged her The Bug Lady.

Our editor thought her a delightful prospect for a Brightside article.  We writers all wanted the assignment, but it went to someone other than me who happened to be one of her friends.  Several of us got to meet this self-made bug expert who did look like a story-book librarian.  Wrapped in a warm cardigan sweater, a plain skirt, sensible shoes and very thick glasses she made all who met her feel like a child gaining knowledge as she shared her story.  She mentioned that her books didn’t make her very much money, but it was something she loved doing, and better than money her reward came as she watched the wide-eyed children smile and marvel at the informative, colorful books she helped create.

When we met, The Bug Lady was near retirement and ready for the change it would bring to her life.  She and her husband lived locally in a modest home, and soon settled into the comforts of just being themselves without the pressures of going to work each day.  Brightside ran the article and we writers found other people with interesting stories to tell.

Several years later I read about her again in the newspaper.  This time it was sad and shocking.  The Bug Lady had contracted Alzheimer’s.  Understanding the disease as I do now, it must have been a rapid decline for her because she was still very physically active and when she walked, some of her friends stated, she walked very fast.  Somehow, she had left her home and disappeared.   My friend and I went to visit with her grief-stricken husband to see if there was any way we could help.  Teary-eyed he could only relate what he knew.  She was gone.  There was a short blurb about her disappearance on TV news and a few continuing articles in the paper, but there was never a hint to her whereabouts – missing without a trace.  What could possibly be worse than having Alzheimer’s?  Having AD and disappearing never to be seen again.

During the past seven-plus years I have been thankful that Ken didn’t wander, but just because wandering wasn’t part of his habits didn’t mean that he might not scurry off if given the opportunity – not so much an opportunity – but a reason.  One night, a few years ago he had both.  After dinner with our friend Jayne, he and I headed for our car.  It was very dark, but Jayne followed us out to say goodnight.  I opened the car door and climbed into the driver’s seat, and then reached across to unlock the other door so Ken could get in.  Jayne and I talked for a few moments and when I turned to see if Ken was settled in, I was stunned to see he wasn’t there.  Leaping out of the car I looked up and down the driveway.  He was gone.  Apparently, with my quick disappearance into the car in the surrounding darkness, he must have forgotten where he was and, I suppose, began looking for me.  Glancing around I could see him walking quickly down the sidewalk as if he had some place urgent to go.  Already a good 200 feet away he was headed in the direction of a main thoroughfare with bright lights and activity.   I ran after him calling his name.  Still, he didn’t stop.  Instead he seemed to pick up speed hurrying toward the intersection.  Reaching him I grabbed his sleeve commanding loudly, “Ken, stop!”  “What?” he questioned in return, looking at me in surprise.  “Come back and get into the car so we can go home,” I prompted.  He asked where the car was as I turned him around so we could walk in the right direction.  Grumbling and complaining he came with me as I ushered him into the passenger seat making sure the seat belt was buckled.  “Goodnight, Jayne,” I called.  She waved and went into the house.

The experience had been a bit disconcerting, but because I could see him I didn’t panic, and he had a distance to go before he came to the intersection so there was no immediate danger.  The incident, though, taught me a good lesson: make sure he gets into the car, especially realizing how quickly he could have vanished into the dark night.

When Ben came as his caregiver, security at our house became even better than it had been before, and while Ken’s strength is now at a point where I doubt he would get very far before having to sit down and rest we don’t take chances with the outside doors which are double locked with us holding all the keys.

What could be more terrifying or devastating, more heart-wrenching or guilt-ridden to a family than having their loved one who is stricken with any of the Dementia-related illnesses lost in a confusing, often cruel and sometimes evil world?  At times I have wondered if Ben wasn’t being too careful about the doors always being double-locked, but then I tell myself that double locks are a good thing remembering the old saying, “Better safe than sorry.”

Photo courtesy of  http://www.flickr.com/photos/mysza/

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Throughout our marriage whenever I got the sniffles — or worse — a full-blown cold, Ken was at his worst.  A nurturer he was not.  “Mom — or mom-in-law,” he would plead into the phone, “Could you come out and help for a few days.  She’s sick.”  “She,” of course meaning me.  The mothers were wonderful and at their best as caregivers and baby sitters while he continued wringing his hands with worry all the while whining and wondering when I would get better.  Once I was on the mend and after the chosen mother had gone home, I often felt a little miffed that he was so incapable of  caring for me.  Sometimes I would tell Ken that it was too bad his investment in a marriage license wasn’t paying off:  Heaven forbid — his wife caught colds!  “Does an occasional bout with poor health entitle you to a refund?’  I teased.  It was a good thing I actually had a constitution of iron and was seldom sick.

In retrospect, I do believe he was terrified when I became ill.  He never said so, but I came to that conclusion because when I was in the hospital and “my primary care” was assumed by someone else, someone he didn’t know and a professional, he became a knight to behold.  My husband was the first one to arrive when the clock pointed to the beginning of visitor’s hours and he was the last one to leave when the nurse growled, “Sir!  Visiting hours are over!”

I was envied in the maternity wards as Ken sat by my bed being the best father and most attentive husband in the land.  He would pull his chair as close to my bed as he could get looking starry eyed and smiling while we talked.  Holding my hand in both of his, he periodically kissed my finger tips and told me how much he loved me.  I suppose the hospital knight canceled out the home klutz because when my colds were gone I always forgave him his incapability, and through the many years of our marriage I have concluded that’s exactly what it was:  Ken was emotionally incapable of stepping into that primary caregiving role.  A secondary support system was something altogether different, and in that role Ken shined like a new penny.

Following the automobile accident, and were he not stricken with a diseased mind, he would have been a permanent fixture next to my bed.  I missed not having him close by, and there were times during the twilight hours when I imagined him near.  With that thought in mind I drifted off into a deep sleep and dreamed about us.

We were celebrating; possibly my birthday which was in the first week of March.  Arm in arm, we were jaunty, each of our steps clicking in unison, tapping out a rhythm along the streets of San Francisco.  I suppose we were looking for the perfect restaurant.  He looked wonderful, his gray hair giving him an air of distinction — and to please me he wore a coat and tie.  He looked so handsome.  The weather was balmy, and I was dressed for an evening on the town; the two of us made a perfectly matched pair.  We were “us” in my dream, strong mature adults with grown children, grandchildren and even great grandchildren, enjoying every precious moment of our life together.  I felt good — and happy — even though we didn’t seem to be reaching any destination.

Block after block we walked, peeking around corners and passing many suitable places to eat, yet we kept going.  Suddenly, and without warning, we passed a darkened doorway and there in the corner was Ken.  Not the mature adult whose arm I had just held in my dream, but Ken the way he is — really is:  Ken with Alzheimer’s — confused and alone.  Were we meeting spirit to spirit? Or was my dream reminding  me that in reality Ken would not be my hospital shining knight, nor would he be my devoted secondary caregiver kissing my finger tips and telling me how much he loved me.  Alzheimer’s had taken that Ken from me, and coming out of the twilight where dreams can be momentarily bright and consoling — then gone like a puff of smoke — I was left to remember that my husband would not be part of my recovery.

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When I’m thirsty there is nothing more refreshing and satisfying than a tall glass of water with lots of ice, but after the accident both were temporarily denied, and for good reason.

Once stablized I asked for two things: a few extra blankets for warmth and some water.  “I am so thirsty,” I pleaded.  The blankets came immediately, but not the water.  Someone explained that I shouldn’t have anything to eat or drink until further examination to make sure I wouldn’t choke.  Nevertheless, I was still thirsty and begged for water.  Finally, Nurse Keven relented saying, “Try giving her a little ice.”  The droplets trickled down my throat like fresh summer rain on a hot afternoon; cool and gratifying.  I felt rejuvenated — until the next thirst — requesting more ice.

Care couldn’t have been better than in ICU, but the family decided one of them would be with me 24/7 despite the assurance of staff that my needs would be met.  All the same, it was agreed there would be a schedule of six-hour shifts so I was never alone:  My caregivers main function:   watching me sleep and feeding me ice.  Looking back I must agree with staff:  My physical needs were taken care of very well.  However, without Ken sitting near my bedside, there is nothing that fills the vacancy or heals the spirit more than family.  Kevin, our first boy and third child is big and burly like my father, and like his brothers is very good looking.  Casual, laid-back, and a bit detached; at 18 he too had experienced a life-threatening automobile accident.  “Mom,” he asked, “Are you trying to outdo me?” all the while trying to make light of a serious situation.  Kevin’s shift was taken from part of his work day and busy political life.

Kenney, our youngest, is the comic, covering the hurts of life with something amusing or a joke.  He made me laugh even with broken ribs, and despite the pain it felt good to laugh reminding me that life could still be funny.  Yet, my son can be serious and thinks deeply, philosophizing about everything from work to our messed-up world.  He and Keith are in business together.  Kenney came in the evening and stayed until Keith arrived.

Keith is a no-nonsence kind of guy, the middle son, the fixer, the silent one who steps forward to calm the storm.  His shift finished the night and as soon as his wife, Sabina, dropped off their daughter at school, she relieved him.

I slept most of the time, awakened periodically by staff or by thirst.  “Ice,” I would ask, and before me one of my caregivers appeared, a cup of ice in one hand and a spoon in the other.  Gently, the crushed refreshment was placed into my open mouth.  Usually, three spoonfuls were enough and I would  return to sleep.

In my dreams I could see a nest in a tree and in the nest was the most pitiful looking bird imaginable.  It remained seated in a half-broken shell, looking upward; the feathers — lots of feathers — were still wet and stuck together forming a scattering of points sticking out from its skinny body.  The head was round with human eyes and a demanding beak-mouth which was always open.  I thought of the creature as me, constantly calling for ice, and constantly fed.  In retrospect my sons and daughter-in-law would have made wonderful bird parents.

In the darkness I was aware the shift had changed.  Kenney was on his way home for a few hours of sleep before beginning the day.  Keith was the papa bird feeding me ice.  “Mom,” he said, making sure I was awake and listening.  I mumured a soft acknowledgement.  “Mom,” he said once again.  “You need to know that everyone here is working extremely hard to make you better and you’re not cooperating.”   I looked up at him silhouetted against the light from the hall; not even seeing his handsome, troubled face I could hear the worry.  Recognizing that he was scolding me as if I were a naughty child, I still didn’t understand why.  A touch of irritation in his voice caught my attention as he whispered, “You’re not breathing the way you should.  Breathe, mom, breathe — really deep.”  “Hurts,” I burbled.  “That’s why you’ve  got to take the pain medication then it won’t hurt so much.  Now take a deep breath.”  “Okay,” I mumbled.  “Tomorrow.”

With my thirst quenched and the scolding over, I drifted back to sleep; the needy, pitiful bird with its enormopus mouth once again filling my mind.  Yet, another thought continued to nag, and somewhere in that misty place between conscious and unconscious I reasoned that I had better cooperate and begin to breathe deeply because if I didn’t there remained a strong possibility that Keith might not give me any more ice.

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