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Or perhaps I’ll call it The Fourteen Days of Christmas.  Today, as I am writing, it is January 6, 2011, a little off my usual schedule because we’ve been celebrating a long Christmas, but now it’s over.  And you know what?  I really like Christmas spread  o  u  t,  taking as much of  December as it needs.

If you are among the generations of through-and-through Americans whose big days are Christmas Eve and Christmas Day your holiday ended at midnight, December 25th, just as ours did before this year.  Craming so many celebrations into such a small space of time, it would seem the date was more important than the day.  After weeks, and even months of preparation Christmas is over in a flash, and now it’s gone for another year. The jolly old elf, his reindeer, and all of his helpers are taking a well-deserved rest, and that includes moms and dads everywhere.

However, if you don’t live in the USA customs for the celebration of the birth of our Lord, Jesus Christ can be different, and are actually more in keeping with the authentic event than all the frantic madness we impose upon ourselves. 

Don’t think I’m a Scrooge grumbling “Bah-Humbug” through this wonderful season of merriment and joy. I’m not.  I love Christmas, the carols, the cards, the parties, the well wishes and even the shopping.  And more; before AD, Ken and I so looked forward to driving through the neighborhoods seeing the decorated homes, malls and the beautiful displays on the grounds of churches everywhere, especially the live nativity scenes where we could let our imaginations go and become part of what occurred more than 2,000 years ago: the birth of a tiny baby whose life and teachings have changed the world.   Yes, Christmas is a beautiful and unique celebration – and different – as we all know elsewhere in the world.

My family and friends who have close ties to Mexico tell me that it is January 5, when the children leave their shoes out to be filled with gifts – not their stockings, but their shoes – and gifts not coming from our white-bearded friend – but from the Three Wise Men who arrive on January 6.  Think about it; isn’t the tradition of gift giving at Christmastime based on The Three Wise Men who traveled from afar bringing the Christ Child gold, frankincense and myrrh as they worshipped the New Born King?

Leading up to the 24th and 25th of December there are posadas and celebrations where loved ones reenact the blessed event, with Christmas Eve and Christmas Day being a more reverent time.  But no matter what the custom or tradition, it is a joyous celebration for Christians everywhere.

This year I have found wonderful flexibility in December.  Perhaps taking a bit of the customs from south of the border.  Singing The Twelve Days Of Christmas, while being a delightful carol, sounds a little much for me.  Who needs all of those maids amilking and noisy French horns?  But 14 days of Christmas with some light festivities, and then a few days of rest in between parties is perfect.  When Ken was well, it was tradition to spend Christmas Eve at daughter Julie’s house, Christmas morning at our house, and Christmas afternoon at grandson Sean’s house.  It seemed we spent as much time in the car as we did with family.

Ken no longer travels well, so I declined all invitations to leave our home.  “Then we’ll come to your house,” said Sean.  “What evening would be good?”  I gave him a date and beginning the Tuesday before Christmas we dined and relaxed with those who could attend, and then opened gifts with no rush in having to get the kids home and in bed, or dropping someone off at the next stop.  A few days later we did it all over again with other members of our family.

“How joyful it has been to spread out the Holiday,” I emailed our cousin, Penny, whose family has also multiplied over the years, living in various parts of Oregon.    She agreed, saying  they also spread the Holiday over several days, commenting on how well it has worked for their family.   Christmas Day can be any day we choose.

If any of these changes mattered to Ken it’s highly unlikely.   He no longer has any curiousity or interest in brightly wrapped gifts, decorations, or colorful lights, and has no understanding of the holiday.  But always a social person, he still seems to enjoy having people around him, and especially the little ones.  Our last Christmas celebration was Monday evening with daughter Julie, husband Tim; son John and wife Marisol, and their two little ones, Joaquin and Maya.  The eight of us represented four generations, and when Ken looked at four-year-old Maya, seeing her beautiful brown eyes and dark hair, he exclaimed, “What a little doll.”

With no memory of who she is or where she fits into this vast puzzle we call family, Alzheimer’s has not taken away his appreciation of the beauty of children, and for that I am grateful. 

So after all is said and done, the gifts opened, hugs and kisses for everyone, and the last guest drove out of sight what did we get for Christmas?  The best gift of all:  Family and friends – in and out of our home — bringing their presents and presence, giving us their gifts of time and themselves.  Who could ask or want for anything more?

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A block print by Irene Weeks, the mother of Ann Romick who also suffered from Alzheimer's

Last year, a week or so before Christmas, I flipped through our church magazine stopping at an article titled, “Be The Answer To Someone’s Prayer.”  Captivated by the thought I read the article through.

As a woman of faith and active in my church I have always striven to do those requests asked of me, but never have I through of my acts as being an answer to someone’s prayer.  I believe in prayer, that prayers are answered, and yes, I believe “angels” help many people.  My favorite Christmas movie is “It’s A Wonderful Life,” but “me” as an answer to a prayer – it’s never even been a consideration.  So my answer would have to be – I’m not sure.

Please don’t misunderstand.  I believe I am, for the most part, a charitable person donating to many worthy causes, dropping money into the Salvation Army’s kettle, helping others, and I loved all of the old TV angel programs often to the point of shedding a few tears at the happy endings.  I have also been known to hand money to a guy carrying a gas can who asks for help in getting his car filled and the family back home.  “It’s a scam, Mom,” I was repeatedly told by any one of my adult sons.  “That’s all right,” I have answered.  “If it is a scam, then he has a problem, but I did the right thing in helping.”  Is that an answer to someone’s prayer – again I’m not sure – or am I a sucker for a scam?

I also received an email about a hospice physician living in Colorado who was forced out of a rainy evening’s traffic into a gas station because his car kept stalling. (I’m not sure if the writer was a man or woman as it was written in first person, and it really doesn’t matter.  However, for the sake of clarity I’ll refer to the person as male.)

Somewhat exasperated he looked around only to find himself stalled near a very troubled woman who appeared to have fallen down next to a gas pump.  Asking if she needed help, the tearful, haggard woman said she didn’t want her children to see her cry.  Our Good Samaritan noticed the older car filled with stuff and three kids in the back – one in a car seat.  Summing up the situation he took his credit card and sliced it through the machine nearest her gas pump saying, “I’m the answer to your prayer.”  She looked at him with surprise, and he followed with, “You were praying, weren’t you?”

As the car filled he went next door to a McDonald’s coming back with two large bags of food for the kids and a cup of coffee for her.  The kids tore into the burgers and fries like young wolves.  The woman shared her story of being abandoned by a worthless boy friend, and was now hoping to make a new start by returning home to her parents with whom she had been estranged for more than five years. They were looking forward to her and the children with open arms, and offered to help until she got back on her feet.

Feeling much better, she thanked her benefactor, and then asked, “What are you – some kind of angel?”  “No,” he chuckled.  “This time of year the angels have a lot to do, so sometimes God has to use regular people.”

He was the answer to her prayers.  And by the way, when he tried to start his car the motor turned over immediately and purred like a kitten.

Christmas: the time of year when we begin to think about being kinder, more charitable, more aware of mankind and their problems, and thoughtfully wonder, “How can I help others?”  And then we get busy writing cards, shopping, wrapping, getting presents ready for mailing so loved ones will receive their packages on time.  In a whirlwind of doing good, we often find excuses for not taking the time to think of doing “more good.”  Such was the case one blustery evening a week before Christmas last year.

It was near dusk, but light enough outside to see the wind blowing the never-ending rain of leaves from our trees when the door bell rang.  Before me stood a man in his 30s holding a rake; he spoke with an accent, but his English was good.  “May I remove the leaves from your lawn for a donation?” he asked.  My thoughts were not kind. Ken was in a bad mood, and I was busy trying to prepare dinner, needing to get back into the kitchen before something burned.  “Oh bother” I thought, “I just raked them yesterday, and I’m busy, and my husband has Alzheimer’s, and I need to see if he’s getting into something, and you’re here to rake leaves?  Why now?”

I all but said, “No thank you,” just to have him gone, and then I remembered the magazine article and the email tale of the physician and the down-trodden woman – whether it was fact or fiction – it didn’t matter — it was a beautiful story.  Before I could speak my uncaring thoughts, sending him away with his rake, a kinder, gentler thought raced into my mind.  “Perhaps you can be an answer to his prayer.”

“Sure,” I said. “Go ahead. There’s a recycle can next to the house.  Put the leaves in that.”  Suddenly, I felt better, less harried – less annoyed – a little more in tune with the season.

From my purse I took two matching bills placing each in a front pocket of my jeans.  If he did a sloppy job I would give him one, I decided.  For a good job he’d get both.  Returning to the kitchen it wasn’t long before the bell rang once again.  It was darker now, but still with enough light to see the lawn was perfectly clear except for the still-fluttering leaves falling to the ground.  With both hands I reached into my pockets and handed him the two bills.  “Good job,” I added.  “Thank you,” he said with a broad smile, “and have a Merry Christmas.”

In the realm of Sister Teresa’s life it certainly wasn’t a big deal, but maybe he didn’t need a big deal.  Perhaps he needed just a few more dollars – for whatever.  Was I an answer to his prayer?  I don’t know, but I felt good.

This year of 2010 has not been my favorite year.  There has been illness and death among our friends and family.  Ken’s Alzheimer’s has continued to plateau downward making his care increasing difficult, and the automobile accident in February which nearly took my life are not experiences I would like to repeat  Yet from the ashes of sadness and disaster I have found blessings.  And yes, I must acknowledge the abundant answers to my prayers through – not only God’s angels – but through the human angels He has sent to answer not only my prayers, but the prayers of those near and dear to me.

What better example is there about being the answer to the prayers of others than words from the Lord Himself as he reminds his disciples in the Bible (King James) —  Matthew 25:35-40 when he says, “For I was hungred, and ye gave me meat; I was thirsty, and ye gave me drink; I was a stranger, and ye took me in; Naked and ye clothed me; I was sick, and ye visited me; I was in prison, and ye came unto me.

“Then shall the righteous answer him, saying, ‘Lord, when saw we thee hungered, and fed thee? Or thirsty, and gave thee drink?  When saw we thee a stranger, and took thee in? or naked, and clothed thee?  Or when saw we thee sick, or in prison, and came unto thee?

“And the King shall answer and say unto them, ‘Verily I say unto you, Inasmuch as ye have done it unto one of the least of these my brethren, ye have done it unto me.'”

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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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There’s seems to be one strong emotion that remains in the psyche of Alzheimer’s patients long after many of the others are gone.  Well, actually a few more than one remain.  Of course, anger is there – front and center – demonstrated often when Ken is frustrated or confused, but that’s not the one I have in mind.  I’m not certain if he experiences or even understands happiness or sorrow at this point in time.  Nor am I very sure about love even when he knows me he is reluctant to be close.  He might allow a quick kiss or let me to hold his hand once in a while, but there are no hugs, no passion, no embraces spurred by memories from long ago, and there appears to be no tenderness or compassion.  Outwardly, he seldom laughs, which is sad, because he was a great laugher and truly enjoyed a good joke. Even watching “America’s Funniest Videos” he sees no humor.  There are times, however, when he chuckles while talking to himself, or at night when he talks in his sleep he might chuckle again. What he does possess more than anything is feeling independent, and I’m not even sure if independence is considered an emotion.

He often refuses to do something just because it’s been requested.  “Ken, come and have breakfast.”  “No,” might be the ready reply followed with, “I’m tired of you telling me what to do.”  So we try another approach, showing him the plate filled with food asking him if he would like to eat.  Not waiting for a reply, choices follow.  “We’re going to put your breakfast on the table and you can eat it or not.  It’s your decision.”  Then we step aside, but ready to help is the need arises.

It’s usually Ben or David preparing the meals, but when I hear him demonstrating his stubborn streak I step in making an effort to help and encourage Ken to do what is best for everyone, and whatever works.  

We all like to be independent, to make our own choices, to master our own ship so to speak.  That kind of tenacity for freedom, that self-determination doesn’t necessarily wait to appear in old age.  Often it begins with a baby’s first step – or before — or anytime thereafter.

The first word out of the mouth of our granddaughter Elizabeth was, “NO!”  I wasn’t there but I imagine her first sentence might have been, “Me do it.”  From the time she managed to wiggle into a tee shirt and pants she insisted on dressing herself, not only dressing, but choosing the clothes.  The haphazard combination of choices pulled from her drawer was often laughable, and worn any which way — inside-out or backwards — or both.   Elizabeth’s original “look” would never appear in a fashion layout even for most avant-garde of children’s wear.  Her selections were adequate for home and playing in the backyard sandbox, but there were times when Mom and Dad wanted this beautiful tow-headed child put together as if someone cared.

Waking from her nap one afternoon, Mom already had the outfit laid out.  “Here,” said Mom, “put these on.”  “NO!” came the quick answer as Elizabeth ran to the dresser pulling out whatever came first. “We have to hurry,” advised Mom.  “We’re going to your brother, Sean’s, Little League game.  Let me help you.”  It was a tussle, but Mom won.  Elizabeth was not happy.

At times you don’t try to reason with a three-year-old, you just firmly do what needs to be done.  Into the car filled with waiting family Elizabeth continued to cry grabbing at the tee shirt and shorts, “Dod like deeze.”  Minutes later she was still making a fuss as they pulled into a parking space at the ball park next to the stands.  “Let’s go,” instructed Dad, “everybody out.”  “No.  Not going,” the child protested with tears and sobs still evident.  “Let her cry it out,” instructed Mom.  “Elizabeth knows where we are.  She can see us and we can see her.”

The game had started: fouls, tips, a few hits, dropped balls, over-ran bases with few scores and lots of outs while the crowd roared as only Little League parents can cheer.  Suddenly the rooting stopped and the air was filled with laughs, giggles, and a few ahhhhs. Leaving Mom’s choice of clothing in the car Little Miss Independence had stripped down to her birthday suit and was on her way to sit with the family wearing a smile and exactly what she chose: nothing.

I often think of Liz and her I-can-do-this-myself attitude when it’s clean-up time for Ken.  Not that independence is something new for him.  After all, he left home to join the Merchant Marines at age 15, sailing the South Pacific in a sea-going tugboat at the begining of WWII.  A little less of that self-sufficiency would be helpful at this point in time.

Clean-up is a two-person job, and our previous care helper, Mel, was fortunate enough to find full-time work.  Good for him, but not good for me and Ben.  However, I felt sufficiently recovered from the accident to take Mel’s place as helper.  Ben does the hard part, while all I do is hold his already restrained hands to keep him from clubbing Ben with his fists if he’s in a combative mood.

Once Ben gets him into the shower Ken is content.  Unrestrained, the water runs over him like warm rain, and he almost purrs, “That feels so good.”  Mission accomplished, Ben hands him a towel.  Dripping wet, Ken looks for arm holes and a place for his head.  “No, no, not a shirt,” Ben instructs.  “It’s a towel, dry yourself.”  Eventually Ken gets the idea and dries himself finally wrapping the towel around his waist, tucking in the end to hold it in place; a guy thing and something he has done all of his life.  Handing him a sweat shirt, Ben continues, “This is your shirt.  Put it on.”  Stubbornness kicks in once again and he throws the shirt into the hall.  “This is not my shirt, and I’m not going to wear it.”

True, it isn’t the type of shirts he wore in the past; the ones with a collar and buttons down the front, but the sweat shirt is practical for the caregivers; easy on, easy off and easy to wash and dry.  So the uniform for most days is sweat clothes.

Eventually he accepts the shirt looking at it as if for the first time, he asks, “Is this mine?”  “Yes,” we both agree, “put it on.”  That he can do all by himself, but requires help with the rest of the clothing: “underwear,” baggy, high-water sweat pants, white socks and moccasins.  His glasses were resurrected from the past: heavy horn rims from another era replacing his newest ones lost in the accident.  The big ugly ones are held in place with a thick red elastic rope coming from the ear pieces to the back of his head.   He doesn’t look at all like the suave Ken, tall and slim with a flat stomach, who wore Wranglers, a good-looking shirt, real shoes, and totally cool glasses.  “Grandpa looks a little dorky,” comments Kristina, who lives with us.  “I agree,” I tell her, “but there are times when we have to settle for sensible.”  However, I wouldn’t be at all surprised if one day he grabbed at the dorky clothes and said, “Don’t like these!”

And Elizabeth?  From one sailor to another, Grandpa would be so proud of her.  Liz has been grown up for a number of years, finished her education and is now sailing the Mediterranean as part of the crew on a private yacht.  Tall and graceful as a willow wand, she still has hair the color of golden flax, puts herself together like a fashion model, and remains Miss Independence to the “enth” degree. You might say she inherited that from her grandfather.

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Ken, Mabel and his daughters Julie and Debbie and daughters-in-law, Mary and Sabina at his 80th birthday 2005

This is, possibly, my last guest post. My mom should be back here writing next week – or soon thereafter.  Debbie Schultz

One of the blessings that came from my turn at caregiving was a chance to become reacquainted with my dad. Obviously he is not the strong, but gentle man, who raised me, helped me through a divorce, get back into school, and proudly watched me graduate from college at the age of 41. This man is definitely different, interesting in his babbling, making sense only in fragments. He was always a great storyteller, but even that aspect is gone from his tangled brain. I see his personality in layers. Some of the facial expressions I remember as a little girl, the mannerisms are still there. When I first arrived here from my home in Utah, he was lying in a hospital bed, mumbling in heavily sedated sleep. He seemed so very old and vulnerable to me. I softly stroked his head and muttered my good byes, thinking that might be the end. But like my mother, he has a tremendous will to live, and two weeks out of the hospital, he is gradually becoming his old pre-accident, self.

The disease is horrifying, taking a person a bit at a time, but in a somewhat detached way, it is also fascinating. What makes a personality? What bits and pieces of one’s history stick, and why do they stick? What jogs memories? Why do some things stand out, while others are forgotten? When asked, he will say he has no children. He confuses me with my mother, but I correct him and tell him that I am his daughter and I love him. I  especially use the technique when I am doing things he doesn’t want done, like showers. Looking in his eyes and telling him seems to calm him. I call it speaking spirit to spirit. And when my daughter goes to move something of mine, he says, “Don’t touch that, it’s my daughter’s.” For a brief moment I am remembered.

He knows he was in an accident. The first few days he was home from the hospital he complained about being stiff and sore. He told me that he hurt because a truck hit him. He knows, when he remembers, that my mother is in the hospital. His love for her, despite the forgetfulness is so evident. Besides often asking where his wife is, there is wistfulness in his wanderings. He sleeps on his side of the bed, waiting for her to come. He asks me if she is working and if so, when will she return home?   Although my voice may sound the same, my reactions are different than hers. He is confused by the similarities.

I am grateful for the opportunity that I have been given to get to know my father all over again. I have more feelings for him as I have served him these past few months. I miss the man that he once was, but I love this frail, funny, shuffling person he has become. Who knows why we go through the things we do in this life? As hateful as this disease is, it often brings out the best in the people that it touches. I have gained a new appreciation for my mother and all she has gone through as she cared for the other members of our family, who were also struck down by Alzheimer’s. The positive side of this negative situation is the opportunity I have been given to serve my father and make some effort to understand what has happened to change him. Without caring for him, there would not have been the reconnection I have felt.  When he is truly gone I will not only mourn the man my father was, I will also mourn who he has become. I am indebted for the chance that I got to know that other man.

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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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THE HIGHEST OF HONORS

Most of the people with whom Ken and I have shared our adult lives made the choice, following marriage, to have children — lots of them.   The trend, which was very popular after World War II and the Korean Conflict was to have large families.  As part of that trend, we are the parents of five offspring:  two girls and three boys — stragglers of the “Baby Boomer Generation.”   Our years of rearing children were the best years of our lives, nothing out of the ordinary: normal, I would say.  We did PTA, Dads’ Club, Little League, Scouts — boy and girl — church with all of its youth programs and activities, enjoyed their friends: good and tolerated the bad; we endured sick days, happy days, school days, vacation days, holidays and rebel days.  We angst through the 60s and worried about drugs, hippies and all the ramifications that went with young people coming of age during such a tramatic period of history and being faced with choices where their lives could have been damaged, ruined or even claimed by death, but they survived and so did we.

The growing years went by in a blur as if we had pushed the fast-forward button of a VCR.  Some of our brood went to college, others did not, but in any event, they all did the same — and the normal thing — as young adults they picked up their lives and went their chosen way.  Normal — and happy:  that’s what we wanted, yet as each one left the nest they left an empty spot in our hearts.  For most of the years which followed, they have lived close by with their growing families, and we consider that a blessing.  While we are no longer the strong beacon of influence we hope to have been, we treasure  the grown-up relationship we have with all of them.

Parenting, however, is still such a constant, and while Ken and I had rediscovered “us” and had moved on into our retirement years, we wanted that safety net to remain for these grown children: the knowledge that we were and are still “there” for them — in every way.   It isn’t because they really “needed” us, it’s their knowing that counts.  I’ve often compared us, “mom and dad,” (other moms and dads as well) to the stove and refrigerator — even the washer and dryer — the house, the car — home; “there,” we’re just “there.”   We are part of that security, that solidarity which they have known “always,” and will, hopefully, remember in a good and loving and “normal” way.

So what do we, as parents, expect in return?   Actually nothing, but cards and perhaps a few flowers, or some other small token of love on birthdays, Mothers’ and Fathers’ Day; love and respect and occasional phone calls — and visits.  But accolades?  I don’t think so, believing myself and Ken to be ordinary people. Yet, to my surprise my daughter, Debbie, nominated me for “Caregiver of The Year” through a website out of Chicago: http://www.caregiving.com with Diane Brown as the host of the site, and her own internet/radio program.  I am one of the five recipients to receive the award and I am honored and humbled.  When I read Debbie’s letter of nomination, and her description of what she has observed over the years, I cried.   Such a high compliment to receive:  for her to see me not only as her mother, but as a wife, a person — an individual in my own right — someone who has had a life and has, posssibly, made some kind of contribution to mankind and the world in which we all live, and for her to want me honored is an honor in itself.  The following is her letter of nomination:

“I am writing about my father’s caregiver, my mother.  Given all the other service-oriented activities she has been part of:  PTA, Scouts, Little League, and church, this would not be out of the ordinary, but my father is the fourth family member with Alzheimer’s that she has given or directly supervised their in-home care.

“Her first experience with the disease came with my father’s parents.  I cannot remember when they were stricken, or what their ages were.  I remember their 50th wedding anniversary; my grandmother was 68, and my grandfather 12 years older.  They both seemed fine at the event, but shortly after the celebration, my mother began to make more and more visits to their home.  They lived about 40 miles away and my mother made several trips a month to take them to the doctor, for haircuts, or to make sure they had food in their cupboard and refrigerator.  My father’s sister lived a few blocks away from them, but because she was a single mother and worked full-time, she had little time left to spare. 

“My mother was truly the sandwich generation, as I had three younger brother’s still living at home.  I know that she was devoted to home and child care, but she was also realizing some success as a freelance writer.  However,  by unspoken agreement between my father, his sister and herself  it was a given, because she didn’t “work,” the responsibility of caring for my father’s aging parents would belong to her.  Even though the current social climate touted women’s rights, liberation and the importance of career, my mother’s dreams of being a writer were squeezed between appointments, errands and all the other aspects of her busy life and giving nature.  She had no time to think about whether she was liberated. 

“With the death of my paternal grandparents, the needs of her own parents soon crept in and once again began to take over her life.  When her own mother developed the same symptoms that her in-laws had shown, she moved them from their country home, which was two hours away, to another home just a mile from her own.  Her older sisters lived two states away, and the burden of care for their mother fell on mom’s shoulders.  Once again her time was spent in the busyness, stress and exhaustion of caring for an Alzheimer’s patient.  As her mother’s condition worsened, they tried a care facility.  Its effects were devastating not only to her mother, but also to her father who could not handle the toll the confusion and foreign surroundings brought on his wife which only added to his own despair.  Luckily my mother found a dear friend who took over much of the burden of caring for the older couple the last few years of their lives.  Despite the help, mom was very much involved in their care.  She was continually at their home doing what she could and again, the sole driver for appointments and outings, which continued until the elderly couple passed.

“Following a few years respite, the ugly signs of Alzheimer’s appeared in our family once again, this time afflicting my father.  After her experience with her mother and in-laws, one might think she would be an expert, but not so.  Everyone is different and seeing your parents change into people you no longer knew, cannot be the same as having your beloved spouse of almost 60 years, not only not recognize you, but demand that you leave your own home.

“My mother has risen to this challenge with fortitude, determination and a sense of humor.  She has become somewhat of an expert on the holistic treatment of this disease, and in a sense, she has won.  Whether it is the day-to-day battle or the full war, only time will tell.  After six years my father continues to live at home.  Each day he takes a handful of pills and vitamins that may have allowed him to retain enough of his personality to care for his physical needs, and for the most part functions as a young boy in their home, with small moments of time as my father.  The war will be over when he is taken to his Heavenly home.  Hopefully that will happen sometime in his sleep and then my mother will be victorious, as she has finished this last act of marital service and love.  I cannot imagine the emotional pain this has wrought on her, and the torture she has felt as she has lost her soul mate, bit by bit.  Her perseverance and optimism are amazing.  Her example reminds me that we are never given more than we can handle.  And through this all, she has developed her talents and her career.  The disease and her life have given her a story which she shares in a blog.  Eventually there will be a book — an example of courage and service for other caregivers and her legacy of service and love to her family.”

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