darkness

THE SECONDARY CAREGIVER

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.

Originally posted 2010-06-07 05:56:21.

ICE AND THE PITIFUL BIRD

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 one’s children.  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, this 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 well into the night until Keith arrived.  Watching the night turn to day his shift was finished when Sabina, his wife, arrived to relieve him as soon as she dropped their daughter off at school.

Keith is a no-nonsence kind of guy, the middle son, a fixer, the organizer, the silent one who steps forward to calm the storm. Using the same organizational skills he uses in his business he scheduled the shifts and balances all else that falls to pieces when one’s world  tips upside down, advising his business associates he was taking a two-month leave.  He then focused on his dad, our home and finding a cregiver for Ken.  With my husband still in the hospital that chore could wait until Deborah arrived from Utah. Then, without hesitation, Keith said to his sister, “Your job is to find a caregiver for dad.”

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.

Originally posted 2010-05-24 05:19:40.

A WINTER’S EVE — FEBRUARY 15, 2010

A WINTER’S EVE — FEBRUARY 15, 2010

It was still daylight when Ken and I left our house to do a bit of shopping on that brisk Monday.  Daylight, yes, but darkness comes quickly in winter.  I had hardly parked the car in front of Radio Shack as dusk fell.  I needed only two small items: a new cord for one phone and an extension line for another, and then we were off to enjoy dinner with our friend, Jayne, at 6:30.

Getting Ken ready and out of the house to go anywhere was becoming more and more difficult as he slipped further into Alzheimer’s.  Nevertheless, he always liked getting out once he was dressed.  I believe winter is often a problem with dementia and related illnesses, the season having so much gloom — so few blue skies and sunshine.  The world had been very gray this season with lots of rain, which California has so badly needed, but the storms came one following another, often without a break.  Ken does better when the days are long, light and bright.  Each year, it has become more of a struggle getting through the dark months.  I’ve often said December 21, is my favorite day of the year because the sun begins its return journey “home” to our house.

I looked at the time — a little before six — time enough to stop a few doors from Radio Shack and pick up a few more items at CVS Drugs.  While we were out, we might as well get everything on my list, I thought to myself, and no crowds.  I’ve always liked to shop during the dinner hour; it seems that everyone is either at home cooking or eating.  With no one in line, we moved along quickly, and then headed back to the car.

Inside our older 1995 Ford Explorer I buckled my seat belt.  “Do you have your seat belt on?” I asked Ken.  “Yes,” he answered, pointing to the belt around his waist.  When his focus is on the belt holding his pants in place, I know I can’t change his thinking.  I don’t even try.  Unbuckling my own seat belt, I leaned over with one arm around his back and the other in front of him, I handed my left hand his seat belt, guiding the locking piece into its slot.  Then, I rebuckled my own seat belt.

I made ready to exit the parking lot, waiting until traffic from both directions had cleared, and then began my left turn, crossing the clear west-bound lane, flowing easily into the medium strip, and then turning and merging into the inner east-bound lane.

Glancing to my left I noticed the solid double line of cars coming from the direction of the freeway.  How odd they looked in the blackness — almost surreal.  Blending together, the moving vehicles appeared to be a horde of great prowling beasts with enormous yellow eyes, appearing almost liquid in their pack-like movement.  Suddenly one of the automobiles — a maverick of sorts — pulled out from the mass of cars, crossing into the medium lane.  I wondered if the fool planned to pass the unyielding line of west-bound vehicles using what was an illegal passing lane for him, but also noted he hadn’t made the necessary hard-right turn which would have placed him parallel with that line of traffic.  Rather, he was pointed in a diagonal path toward me.  I was not concerned as he was a distance from me, with time and space to correct his direction.  Convinced he would make the adjustment, I turned my eyes to my own traffic lane.  Within mere moments my world went black.

Originally posted 2010-05-06 20:15:29.

THE HALLOWEEN FACE IN THE BATHROOM

Carved pumpkin

Pumpkin carving, a Halloween tradition.

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

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

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

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

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

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

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

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

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

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

Originally posted 2010-10-30 21:44:16.

WHERE AM I? AND A PROMISE KEPT

Our first visit to the neurologist was January of 2004.  He examined Ken, talked with me, and then both of us together. His findings were inconclusive and I mentioned that I would like to avoid the “A” word even though there was a high probability Ken’s future was headed in that direction.  The doctor prescribed Aricept advising it might help.

Near summer’s end we decided to take a road trip through the southwest seeing people and places we would doubtfully visit again.  Ken drove having just renewed his driver’s license in June passing the tests with flying colors.  His reflexes were still good and he was an alert and safe driver.

Our trip was wonderful as we managed to see everyone and everything we had on our agenda.  But twice as we drove along some of the older, more scenic highways Ken would say, “I don’t have the slightest idea where we are or where we are going – where am I?”  I told him not to worry.  “We’re on vacation heading west on the old Highway 40 and it’s okay because I’m the navigator and know exactly where we are and where we’re going”  When in doubt, I would give him directions.  Furthermore, I drove through the cities to eliminate any confusion.  He trusted and believed me.

The following year in early spring he was requested to retest at the DMV.  He failed the written test so badly they disallowed any further testing.  Regardless of how well he had done the year before new tests were required following January’s firm diagnosis of Alzheimer’s.  Conclusion: driver’s license revoked.  More and more obvious signs of memory loss and confusion were beginning to appear even though most of the time; he was “so” Ken.

Over Labor Day weekend in 2006 our daughter Deborah and her husband Mark joined us on our property located in the Sierra-Nevada foothills, where we kept our trailer.  They also brought a group of young women from our church to enjoy the splendor of fall’s beginning and some outdoor camping experience.

We had purchased the land in the mid 90s with a country-retirement home in mind.  The site overlooked a valley of greenery and lakes, and in the evening we could sit where the house would be and watch the sun set.  With a septic tank, well, graded site and roads most everything was ready and waiting for the building to begin. The trailer was intended to be a weekend vacation place, a mini home where we could stay during construction, and for family to enjoy when we weren’t there.

We added an attached screened porch, doubling the floor space, and a deck under the trees.  It was our getaway while the county offices insisted on plan revisions, PG&E scheduled us for the 12th of never, and we encountered enough red tape to outfit the local high school’s marching band.  Then, once again, we began to notice the ever-increasing signs of Alzheimer’s.

That Labor Day with Debbie, Mark and the young women was the last weekend we spent in the trailer.  As the sun dipped out of sight and the merriment from the group of girls reminded me of other times and other camp outs with own family, twilight brought further confusion to Ken.  After dark he became extremely disoriented.  “Let’s go,” he urged.  “We’re here,” I told him, “we’ll be spending the night right here in our trailer.”  I reminded him of all we had done to make it comfy and cozy, and how our sons Keith and Kenny had enclosed the area with split-rail fencing to keep the cattle away.  Nothing I said sparked a memory.

We unfolded the built-in beds and covered the mattresses with sleeping bags.  “I don’t want to sleep here,” he complained.  I made every effort to assure him that we had spent many nights in the trailer, our home away from home, but he remained unconvinced.  Finally, he accepted the fact that I was going to stay and, unhappily, he climbed into bed.  I could see in his face he was worried and a little frightened with his accommodations saying, “I don’t even know where I am.”  “You’re with me in our trailer,” I told him.

His disorientation had been a night thing.  The next morning he arose finding himself very much at home enjoying the group of young women, the country and our children, but I was certain the previous evening’s experience must have been terrifying – to be lost and not know how to be found.  Time in the country used to be invigorating and restful, but no more.  I guess it wasn’t/isn’t always a good idea to bring such an unfamiliar change to an already confused mind.

Up until recently any confusion about where he was could be easily set aside with a few comforting comments, but as his Alzheimer’s worsens familiar things and places seem to be vanishing before our eyes.  “Where’s the bathroom?” he will ask. “Is this my house? My backyard?  Where am I?” he questioned getting out of bed.  I reassured him, “You are home.  This is your bedroom, your backyard.”

Ken’s decline since February has been dramatic which I measure from month to month while others who don’t see him as often are surprised at how quickly he has digressed down from one plateau to another.  Alzheimer’s takes its victims to that place of no return one step at a time.  Even though it’s his journey, I walk beside him, and there are times when even I ask myself, “Where are we on this road that leads him to nothing?”

As unsure and as slow as he is, his health is fairly good; his upper body is especially strong.  Still, with Alzheimer’s there is no way of calculating life expectancy.  Former President Reagan suffered with the disease for 10 years, and according to an Alzheimer’s research letter, people can live with it up to 20 or more years. Without being maudlin I sometimes think about the “Where” question with application to another venue, “Where are we?” as we drift aimlessly along life’s conveyor belt asking yet an additional question, “What’s next?” For some questions there appears to be no answers.

In the beginning when Ken and I talked of his disease, it was with a lot of trepidation, but he said, “We can get through this together.” At the time, I agreed with him asking if he would promise me just one thing, “Always believe and trust me.”  Eagerly and with the same true sincerity as his wedding vow he answered, “I promise.”  It was, however, a promise he is no longer capable of keeping.  Sometimes, I will extend my hand asking if I can help.   Usually, he waves me aside wanting no interference from a stranger. But occasionally I am surprised when he reaches out accepting me and my help.  Holding tightly he pulls and pushes himself from a chair, continuing to hold my hand.  Briefly, he is kind and grateful.  For me, in those moments, it’s a promise kept.  My husband believes and trusts me even if it’s only a fragment of time.  If he were to ask, “Where am I?”  I would answer, “With me.”

Originally posted 2010-10-23 18:59:34.

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