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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.

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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 campouts 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 Kenney 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 questions getting out of bed.  I reassure 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.”

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“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 unpleasantries 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 agitative 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 out me 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 dispersment.  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 direct 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….

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