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Archive for the ‘memory’ Category

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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Ken was always a talker and so at ease with people.  When we met that was the first thing I liked about him.  Had he been Irish I would have guessed he kissed the Blarney Stone, but he wasn’t and so he didn’t  Ken was just blessed with the gift of gab. During our marriage I sometimes wondered if he really liked people or if he liked them because they listened?  I doubt he ever analyzed himself, and even if he did what would that prove?  Possibly that he liked to talk and he also liked people; making the question and answer come to a full circle.

For years he volunteered his spare time serving as cub master, scout master, Little League coach, manager, League president, Sunday school teacher, and the list goes on.  During that time Ken was the middle-aged man working with youth and loving every minute.  How gratifying it was to see the boys, eagerness filling their young faces asking, “Mr. Romick, did you me catch that ball?”  And to see 8-and-9-year-old Cub Scouts saluting and grinning from ear to ear as they not only received an award, but words of praise as well. Whether they were eight or 18 Ken always had some special compliment for “his” boys.

It was years later when someone called out from across the street or the mall, “Hey, Mr. Romick, how ya doing?” that we realized how quickly time had passed. Looking into the unfamiliar face of an obvious acquaintance, these typical middle-aged men with receding hairlines and mid-sections telling they were well fed and cared for, were Ken’s “boys.”  We were always amazed to acknowledge that the “boys” had grown up while we were growing older.   Meeting them once again, and watching as they grabbed Ken’s hand shaking it vigorously, I became aware of the great affection these men still had for my husband.  “It’s me, Mr. Romick, Steve from Little League,” or it could be Mark from scouts or Aaron from his old Sunday School class; all of them genuinely happy to once again meet this “mentor” from the past.

I doubt Ken ever thought of himself as anyone’s mentor.  It wasn’t just about what he did, but more who he was and what he said.  How it touches my heart even now when one of his former “boys” tells me how much Ken had impacted their life, how he had made them feel they were “somebody,” and they could do anything, meet life’s challenges and reach their best potential because Mr. Romick had faith in them and said he knew they could do it.  To many, his words were a gift.

Alzheimer’s eventually robs its victims of just about everything they ever had or held dear.  Communication with Alzheimer’s patients varies, and even conversation with the same patient differs from day to day and from night to night.

In his recent book, “Adventures Of An Incurable Optimist – Always Looking Up,” Michael J. Fox tells about his sleeping experience.   Apparently, with his Parkinson’s the tremors stop when the brain is at rest.  When I heard him speak of this during an interview, I thought about the differences with Ken when he had been asleep for a time.  

I have no doubt that the disease saps energy.  For several years, Ken went to bed well before I did (except when he is extremely agitated or disturbed).  Once he was settled I knew it was my turn to get settled.  No matter what his mood swing might have been just before bedtime, or whether he knew me or not, when I climbed into bed he turned to me, barely opening his eyes and lovingly asked, “Is that you dear?”  I assured him it was me and he followed up with something like, “I love you.  Goodnight.”  For those moments he was Ken, and in retrospect, I can’t help but wonder if his resting brain, like Michael’s resting brain, might permit the tangles to relax enough for a bit of normalcy to return allowing stored and familiar memories to emerge.   As a lay person, all I can do is observe and speculate.  For me, his asking questions during those small snippets of time, and accepting the appropriate answers were good, but brief, conversations.

However, with Alzheimer’s change is constant.  After several months, I found I was no longer able to “settle in.”  Even though he still asked, “Is that you dear?” falling back into slumber within a few minutes, I learned very quickly there was more to come.  Peace and tranquility prevailed until one night our comfortable routine developed a glitch.  Ken began talking in his sleep just about the time I was dozing off.  While it didn’t occur every night, it happened often enough to sabotage a good night’s sleep.

The interesting thing about him talking in his sleep was the articulation and sentence construction, which were clear and concise; actually better than some of what we were able to experience during the day.  I sat up in bed and listened.  At first I chuckled to myself, remembering how much he loved to talk.  So here he was deep in sleep having great conversations.  Ken would make a statement, pose a question, or wait for an answer. The timing was so on target I almost expected to hear another voice.  No doubt he was dreaming, and the person in his dream furnished the other half of the dialogue.  Because of the clarity I couldn’t help but think once again about the possibility of his resting brain allowing him to even laugh during his unlabored middle-of-the-night chats.

 Nevertheless, these outbursts of talking did nothing for my period of sleep and rest.   “Shhhh,” I would whisper.”  His talking continued.  “Be quiet,” I requested, my voice becoming louder.  “Buddy, stop talking,” I commanded in the voice of his mother.  “You stop talking,” he countered.  I tried the voice of a teacher calling him Ken, Bud, Buddy, Kenneth and Hey You, all to no avail.  He always had an answer, and the answer told me he was not going to stop talking.

As the filibuster continued, I picked up my pillow, closed the bedroom door and retired to the couch in the family room, which I didn’t mind.  The couch, a warm blanket and I had been friends for a long time dating back to hot flashes and sudden awakenings of years gone by.  The silence was golden as I adjusted the pillow, snuggled into my blanket, and smiled as I thought of the noisy convention in the bedroom.

Perhaps, I mused, Ken may have managed to play a trick on the devil disease by skirting around the pitfalls of daytime consciousness, taking refuge either in the subconscious or somewhere in his resting, relaxed brain.  I don’t have any answers, but wherever he might be during those happy hours of nocturnal conversations he’s in his best element.

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