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Posts Tagged ‘memory’

Full winter moon peeks through bare branches

Do people with Alzheimer's remember nature?

I watch the moon on these crisp and clear winter nights as it wanes and waxes just as I have watched it during all of the seasons.  For me, though, it is most beautiful during the fall when it appears to be closer to the earth than at any other time.  In reality it isn’t, it just looks that way.

The Harvest Moon as they refer to its splendor is almost frightening when it’s full, appearing bigger than life, as it peeks up over the hills east from where we live.  For years, at first sighting whether by me or Ken one would nudge the other excitedly saying, “Oh, look at the moon.  It’s so magnificent!”  It was as though if we didn’t stop what we were doing and look right then and there the other would miss it all together – as if neither of us had ever seen the moon before.

It’s understandable why the ancients of long ago were frightened of what they saw in the skies; why they had moon gods and superstitions, worshipping and fearing what they could not comprehend.  The moon itself with its many changes would be awesome enough, but imagine what terror was evoked when something unknown changed the appearance of their moon.

Ken and I have property in the foothills of the Sierra Nevada Mountains where we were able to spend some wonderful times several years ago before Alzheimer’s spread its destruction across his brain.  A lunar eclipse had been announced, but because of fog we wouldn’t be able to see it in the San Francisco Bay Area.  Not to matter, we had already planned to spend those days on the property and looked forward to the heavenly show.

Taking our folding chairs and flashlights from the trailer we walked up to the top of the hill as darkness fell and the telling hour approached.  Facing eastward we waited longer than we had expected to see some sign of the moon.  Nothing was happening.  Had the fog followed us to the foothills?  Looking straight up, directly overhead, we found the heavens filled with bright, sparkling stars and yet there was no moon.  Had the universe canceled the show?  Finally common sense prevailed and we stood up and moved to the right of where we had been sitting.  There it was in all of its celestial glory: the lunar eclipse.  Much to our chagrin we had been sitting behind a tree – a distant tree – but a tree nonetheless that reached skyward into the blackness just enough to block our vision.

“Wow!” was the word, spectacular beyond description.  We had lived so many years under hazy skies and city lights such sights had long eluded us.  We spoke of the Indians who had lived here so many years before and wondered what they thought of such a phenomenal happening.   It would have been beyond frightening without knowledge, and having only mystical beliefs they could know little of their moon-god and that Mother Earth could produce a shadow.

I wonder if it would frighten Ken if he saw an eclipse tonight, or is his thinking so far gone that even the moon itself is unknown to him. I wonder if he remembers the sun or the stars, the heavens or the universe.  Does he grasp feeling heat or cold, light or darkness – even day or night? Would he know of things once held dear to his heart: the ocean’s roar, the cry of a gull, the wind coming in from the sea, the feel of damp sand beneath his bare feet or the wetness of a lacy edged wave spilling over his toes?  I wonder if he remembers our four seasons with the moon.

It was under a spring moon that we met, falling in love among the stars and moon on balmy summer nights, a solitaire diamond offered in the brilliance of fall’s golden moon, and we married as winter’s pale moon slipped away behind storm-leaden clouds.

We looked out from our window into a gray dawn watching the rain and wind banter with the last few leaves hanging on skeletal trees in a nearby grove, and I thought of my new husband while promising me, “I’ll remember you in winter.”  And now I look up at the soft moon remembering him – us — January. Perhaps, somewhere deep in Ken’s lost mind and crippled neurons a memory flickers – and then again — perhaps not — but more importantly I want him to know deep in his soul that he knew love and is loved — still.  Happy Anniversary Ken.  January 21.

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Janus

Even without the two faces of Janus, AD caregivers often see their tomorrows filled with the repetition of their yesterdays.

It’s January again and at times I want to ask, “Didn’t we just do January?” The answer coming back would be, “No.  That was last year and 11 months have transpired in between.”  I really know that, but there was something about that first day of 2012 which brings about thoughts of Janus the Roman God of New Beginnings after whom the month was named.  Being who he was it is said that he had two faces: one looking forward and the other looking back.  While Janus probably didn’t have my caregiving assignment, or if he did he never mentioned it, I see a disheartening sameness in my life while looking in either direction.

Being able to look back is a good thing, and in that respect we are much like the mystical god, but better because we who are mentally healthy can look back without needing a second face.  We have memory and can learn from history – especially our own.  We learn from making mistakes, taking wrong turns in the road, and what works and what doesn’t.  Furthermore, we can look ahead making daily plans, and plan for the future. My problem is constantly seeing more of the same thing coming in my tomorrows as filled my yesterdays.

Suppose that by looking back and ahead we see only repetition.  I guess that’s where I was as this New Year began; living in “Groundhog Day” – the movie – without the romance.  Bill Murray’s character Phil, an angry, arrogant, conceited jerk, had to keep repeating February 2, until his attitude changed, or until he got it right.  Andie Macdowell’s Rita, the love interest, eventually helped him through his maze of repetition producing a new, reformed and lovable Phil; a delightfully funny movie which Ken and I enjoyed together long before his Alzheimer’s was even suspected.

Remembering the movie, though, I found I was identifying with Phil’s frustration of constant repetition – without the laughs.  It’s true that I’m not tied to a stockade then released to perform certain duties, but it is the repetition of those twice-daily duties from which there is no escape: getting Ken up, cleaned and ready for breakfast each morning, and getting him cleaned and ready for bed in the evening.  (It is much more complicated and emotionally wrenching than it appears in my simple sentence, but long ago I promised myself to always be discreet in my writings about my husband.)

My caregivers, wonderful though they are, cannot do these chores alone.  I am their assistant, and I know I am blessed beyond measure to have them.  I also know that having Ken home is so much better for him, and me, than placing him in a care facility. Yet, the schedule inhibits my planning a totally free day.  No matter what I’m doing I must stop at designated times and with my cell phone in a pocket I’m always on call for undesignated times, which can put a damper on my project regardless if it’s at a crucial point or not, and help the caregivers.  That’s when I feel as if I’m living in “Groundhog Day” – the movie.

Admitting to me that I dread the routine I also recognize that the dread causes a buildup of resistance in planning my day.  Recognition is a first step.  While I understand that the day will be interrupted, it’s the accepting of the interruption that is difficult – and I ask myself – why?  After all, once involved in any project we can be interrupted in anything we do; altering our focus by a phone call, a visitor, a question, or a problem with the project itself.  Then I realized those interruptions are, not only easily accepted, but often welcomed as a mini-break because they were never built into the day’s plan as a constant, as is my husband’s clean-up time.

When Ken retired we became very spontaneous, often ditching less-important, flexible plans for some fun times spent together.  I suppose that loss of spontaneity is rather debilitating adding to the lack-luster feeling of sameness.  Actually, it can be rather hellish when time offers us no opportunity for change in our life; little variety,  few surprises, no rewards, no excitement and not much in the way of looking forward.

With that in mind, and as a caregiver who has been putting break time on hold during the past Holidays, I need to move headlong into the tomorrows and make positive plans for this coming year, and I’m the only one who can do it.  Not resolutions, just plans, even sketchy plans including projects and fun, but in the doing I’ll still need to schedule those time periods to accommodate my daily duties as assistant to Ben and Crizaldo which is a must, and learn to conquer my feelings of dread and resistance.  A recent email message offered a really great motivational shove: “Life has no remote.  Get up and change it yourself.”

It is essential for my own well-being to get out more with my movie group, my lunch group, and with Madalyn where we meet at Wendy’s for a baked potato with extra sour cream, butter and no salt because periodically we deserve a two-hour, carefree lunch.  I might even plan on painting the living room.

I know I don’t have all the answers to lighten up the tedious work of caregiving and the reality of losing my husband to this cruel disease.  What I do know is that I don’t want to live my life in the sameness of “Groundhog Day” – the movie – no matter how funny it was — because even never-ending funny without any hope for change can be hellish.

Photo courtesy of http://www.flickr.com/photos/forresto/4258770494/

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A WALK IN THE COUTRY

“I think I’ll take the Scouts on a 50-Miler,” said my Scoutmaster husband many years ago.  “We’ve been to Scout camp for the past few years, but I’d like to challenge them a bit more.”  For prerequisites, Ken’s troop of eager young men, ranging in age from 17 down to 12-year-olds, strapped a full pack on their backs, laced up their boots and hiked the lowlands in preparation of California’s Sierra Nevada Mountains.  So for several years the troop, with Ken and a few other adult leaders, braved the rutted trails, thunder storms, peaks and valleys and dehydrated food so they could unroll a sleeping bag, toss it on a bumpy terrain and gaze up at a pitch black sky dotted with billions of stars.   The young men soon learned why it was unwise to go barefoot in camp, to identify certain rocks and rock formations, to fish the lakes and respect the land, to hike in groups, wait for the others when the trail forked, and to watch out for your friends who would took every opportunity to play practical jokes on one another.   A week later the troop  arrived home dirty, bandaged, bedraggled, smelling of camp-fire smoke, pine and sweat and gloriously happy for the experience.  They had climbed the mountains because they were there and both men and boys were better and stronger for it.

When our boys had completed Scouting, Ken was reluctant to give up the mountain adventure.  So for Christmas he bought me  my own light-weight aluminum backpack with a bright red nylon covering and a pair of hiking boots.  “Good grief,” said my friend Sofia, “are you going to like that.”  “Well,” I answered, “it’s more adventurous than two weeks at the Holiday Inn.”   Having sons who still hiked the high places, we were often joined by any one of them or all three. We also had grandchildren who wanted to come.  Like the Scouts, they had to be 12 to qualify.  John, Peter and Sean tramped the trails of The Three Sisters in Oregon with us and our oldest son, Kevin.

Kevin led the way, with Sean and Pete close behind.  Their taut young bodies springing ahead as if to blaze a trail for we who lagged behind with our aging dog, Bruiser.  Feeling our years just a bit, our packs seemed to grow heavier each trip.   Never getting to far ahead, we always found the others waiting around the bend, rested and ready to continue.   In between the front and rear guard, was John who finally decided to stay behind with us.  He felt no need to rush ahead, and if truth be told, I believe he was sensitive to us: his grandparents and Bruiser.  Whether we needed him or not, I’ll never know, but it was another joy to have him close by to share the adventure; to see which plants attracted more butterflies, to sit for a while with our feet dangling in the cool water of a mountain stream and to get better acquainted with this third generation.  Crossing the creeks Ken would hold out his strong, firm hand helping me and John, guiding us step by step to the solid rocks and logs until we reached the other side and the continuing trail.  Ken was ever the Scoutmaster at heart, still agile and experienced in his acquired knowledge of the wilderness, which he loved.

Out last backpack trip was to British Columbia with Pete and John, their parents, Julie and Tim, and two other grandchildren: Pam and Jeff.  Promises were left with the younger ones, “It will be your turn next time,” but next time never came.  The back packs were stored in the garage and gathered dust while the grandchildren grew up and married and had children of their own.  Ken’s Alzheimer’s descended like a gathering storm and he now shuffles like the frail old man he has become. 

It has been nearly impossible to talk him into much of any kind of adventure, but as Labor Day weekend approached and John and his wife, Marisol, with their little ones, and parents planned to camp on our acreage in the foothills, I longed to join them, if only for the day.    Ken sleeps very late in the morning and I didn’t want to make a 200-mile round trip for just an hour.  Being realistic, I hadn’t planned on going.  However, he surprised me at 9:30 agreeing to get ready and come with me for a ride, which he really enjoys.  But of course, once he was ready, he had forgotten about the ride, refusing to get into the car claiming he had too much responsibility at home.  I have learned to play the “waiting game,” and after a while I was able to coax him into the passenger seat and off we went.  How good it felt to once again be on the open road going somewhere, even if it was just a mini day trip.

We found the family at everyone’s favorite camp spot and they were surprised and pleased to see us.   Accepting some refreshments and pulling a camp chair into the shade, we settled in for the day planning an afternoon of relaxation before dinner.  The trip, mixed with country fresh air, seemed to bring out the best in Ken even if his remarks were often off the wall and  unrelated to the conversation, it was good to have him participate.    Someone mentioned a sight to see at the top of the hill, not much further than a walk around the block, but with a more difficult terrain.  A few of us accepted the challenge.  Together, we were four generations with 3-year-old Maya asking me if I could pick her up.  I did, then put her down suggesting we hold hands.  She did.  Single file, we began our walk in the country to the top of the hill.  Ken behind me and John following, bringing up the rear, making sure his grandfather would be all right.  This time I knew we  needed him. 

 Mostly a cow trail, we ducked under low-hanging branches, stepped over rocks, twigs and cow plops, and then dipped down an embankment where a very small creek ran forming a muddy bog on either side.  For the sure-footed, it was easy: from dry land to a rock to the opposite side.   The two of us were no longer sure-footed, but as Ken watched the others cross over, a scrap of memory struggled free from his tangled mind, and he said, “I used to do this with my Scouts.”  For some strange reason I am always thrilled when he has a spark of memory.  Meanwhile, John found a sturdy log and making it secure, he held out a strong, firm hand and guided Ken across.   My turn next, but as I watched John, no longer a boy, but a grown man — a father — with children of his own — now the strong one  helping his grandfather cross over the small expanse of mud and water to “safety”  I was warmed with gratitude.  What a blessing  it is to see the continuing generations of family right before my eyes.  Evidence that a  tiny bit of me and Ken will go on with our progeny yet come.  Joyfully, the cycle of life continues.

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It’s the 22rd of December and, as always, there are a few things I needed to buy.  Early evenings are a perfect time to shop.  Everyone — at least a lot of people go home for dinner.  We shopped, stopped for a quick bite to eat and were home before 8:00.

It didn’t work that well on December 23.  The parking lot was packed, the stores crowded and the lines long, but we endured.   Another man standing behind us in line, much younger than Ken, began a conversation asking what he did before retirement.   In no time at all, Ken was telling him about his former work — high rise construction — then moving to a company that made locking devices for jails.  Our in-line time passed quickly and our fellow shopper was totally impressed by Ken’s career;  “so interesting and diversified,” Ken’s new friend had commented.

I was absolutely amazed that my husband remembered so much.  Is there a magic door to memory which can be triggered to open with certain words, certain times or places, questions?  I don’t have the secret key which periodically unlocks that mysterious entrance. It just happens with no explanation.  More often than not Ken glances at me when asked about his life’s work pausing at the stranger’s question and looking a little bewildered.  When that’s the case I fill in a few of the important spots hoping to jump start some recall from Ken, adding jibs of encouragement such as, “You remember that, Hon.”  At times it worked, but other conversations ended with me explaining that he had Alzheimer’s.  “Sorry,” was the usual reply.  But not this night.  It’s been such a long time since he was able to speak of his career, to tell his own story, talk about himself and what he had accomplished with his life.  I was not only amazed, I was delighted.  For a small space in time I had my husband back.

We didn’t stop for dinner this night, but broke away from the crowds and came home to eat.  As we neared the house Ken said, “This is where I live.  I wonder if my wife is at home?”  Memory vanished just as quickly as it had appeared.

I felt it wise to leave our packages in the car and he didn’t notice in the dark which is good.  If I bring in several purchases, some of them disappear.   One night I noticed he looked into a bag containing several battery-operated candles.  “These are mine,” he stated.  I didn’t challenge him, wondering if he had plans for them or even if he knew what they were.  Quietly I followed him down the hall as he went into our bedroom.  Peeking around the corner I watched where he hid them; up on a shelf in his closet.  I would get them later.  Possession for Ken means ownership.  In the confusion of his AD Ken seems to believe everything we buy is for him.  We play hide-and-seek — he hides and I seek — searching for my son’s shirt and books for the grandchildren.   We play this game often, but AD isn’t a game, searching has become a necessity.  So it’s just easier to leave as much in the car as possible until I’m ready to wrap and put them under the tree. Interesting that he doesn’t bother a wrapped gift.

I’m grateful for moments like standing in line, when he’s lucid, even if it’s only for a little while.  During that time we are a couple — a husband and wife — out buying Christmas presents for those we love, and it feels so good — almost like being “normal.”

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