books

SIMPLIFYING IS DIFFICULT

home library with books

Cleaning out the study of a loved one with Alzheimer's is just another difficult task for caregivers.

Today I started cleaning the office.  While it has a corner for my computer, it has always been Ken’s room – his den – inherited when the last of our boys left home.  It’s filled (as I have mentioned before) with his things: collections by the score, memorabilia from his youth, school, Navy days and of course his Marathon and fun run awards.  And books; we can’t forget the books: college books, history books, WWII books, a few novels, lots of Navy books, and binders filled to overflowing with what was important to him.  They all seem to look down upon me as I work, perhaps asking, “What now?”

Alzheimer’s is such a perplexing disease.  Our son Kenney dropped by to say hello this afternoon.  Reaching out to shake his father’s hand, Ken didn’t even look at him, but said, “No.” I tried to get his attention so he would at least glance up and smile at his son, but he didn’t.  “He looks good,” said Kenney.  And he does.  Other than that disconnected gaze often found in their eyes AD patients look very good, and normal.  So normal in fact that as I began cleaning the thought raced through my mind, “What if he wakes up tomorrow and the AD is gone.”  What if he came into the office remembering everything and asked what I had done with his engineering books, his drafting and building books, his Architectural Graphic Standards?  What would I say?  I know it’s never happened: a return from the bottomless pit of Alzheimer’s, nor do I believe it will happen, at least not in our lifetime.  Nevertheless, I sometimes find myself wondering “what if?”

Is that the reason I’ve delayed for so long to sort through a lifetime of collections and dispose of what will never be used again – even some personal items — at least not by Ken, and then asking, “What can be used by someone else?” Questions we mull over and over when downsizing. I glanced at some of the publication dates knowing full well the books were obsolete, and even if he were still Ken, most likely they would never be opened much less read.  Even he would have to admit they were outdated.  But they were his and he liked seeing them on the shelf – they were part of him – who he was and what he did.  The drafting books?  Even I know drafting is all done with computers – CADs as they are called – computer-aided drawings.  So it was almost with force that I persevered and sorted out that one section of books – with more to happen at a later date.

My friend, Bob, who had visited the earlier part of the year as he celebrated the life of his deceased wife Julie with all who knew her, called to say that he was home and his journey was complete. We talked about all of these chores that needed our attention, and Bob said that his next goal was to simplify his life.   He planned on sorting his books; technical books from his past, just like Ken, which he had always planned to review or read again, but now he needed to be honest with himself knowing that he never would.  So he planned to take them all to a place where they would be shredded and sent on to be recycled.

In our area of California we have a recycling program, and I knew that if I put the books into the recycling bin, they would be shredded and made into new paper – or whatever.  So into the bin went Ken’s tech books.  A scene from an ancient movie popped into my mind as they clattered to the bottom.  As a youth I watched the screen in a darkened theater as countless books were dumped into a burning bin because Hitler in his madness had ordered obliteration of a good part of the past in his march to world domination, and books held vast treasures of knowledge and history. Perhaps that’s why I’ve always loved books and felt a desire to protect them — treating them with great respect — wanting them to be there for future generations.  Now I was sending some of them away for destruction.  Even though I know it’s really all right and recycling is for a good purpose I felt a little guilty, consoling myself that a modern world has no use for obsolescence.

Ken loved books as well.  I suppose that’s why he had so many, but Bob is right about simplifying. I need to repeat that word over and over as I continue sorting through Ken’s and my lifetime of stuff.  The one thing I have found is that beginning is the hardest part, and once started I know with certainty that Ken isn’t going to wake up in the morning and ask what I had done with his engineering books. Alzheimer’s never pardons their prisoners.

Originally posted 2011-08-14 00:00:33.

LOST, ABANDONED AND OTHER DESPERATE FEELINGS

lost shoe

Like a long lost shoe, Alzheimer's patients often feel lonely, lost and abandoned.

“Good grief,” confessed my neighbor Ruth many years ago,  “I forgot Laurie at Mayfair’s.”  It was a few days after the fact that she mustered up enough courage to tell me she had forgotten her child while shopping at one of those supermarkets where there was a built-in Kiddie Korral, a special fenced-in corner of the store where you could leave your children for a few minutes, withour worry, while picking up groceries.  More often than not Ruth went shopping by herself, leaving the younger children with her oldest daughter, who was more than capable of keeping an eye on her younger siblings.  All of the little ones had enjoyed a few stays in the Korral, and if they caught mom heading out to buy groceries, they pleaded to go along.

“Oh please,” Laurie had begged, “Can I come with you – pleeeeease?”  How could Ruth resist such coaxing?   Laurie climbed into the car with her mother and off they went, the little girl being more excited about her visit to the Kiddie Korral than spending some one-on-one time with her mother.  Absorbed in the picture books and surrounding toys,  Laurie didn’t notice the time passing, nor did she notice her mother push the grocery cart past the fun-filled corner and out through the open glass doors of the supermarket.  Nor did Ruth remember she had brought one of her children.

“Where’s Laurie?” asked Jackie, helping her mother carry in the groceries. “Did you forget her at the store?” she joked.  That was the moment of truth.  Ruth leaped into the car and raced back to Mayfair’s. There was Laurie still looking at pictures from the pile of selected books next to her chair.  “Time to go,” said Ruth, relieved to find the little girl safe and sound just where she had left her.  For Laurie there was no trauma and no feeling she had been forgotten, much less abandoned, nor would she be scarred for life from the experience. However, Ruth wasn’t alone is losing a child.

One year we lost our three-year-old son, Kevin, at the county fair.  He didn’t want to be in the stroller, so I pushed his empty vehicle while he held his father’s hand.  Feeling independent, he soon insisted on walking alone, and when his sisters, Ken and I turned to go into an exhibit, Kevin kept going straight.  Within seconds we realized he was gone, and he was – disappeared from sight – and so quickly.  After minutes of searching and not finding any trace of him in the crowd, terrible visions began entering our minds.  Immediately we found the sheriff’s office and reported our missing son. “Wait here,” the deputy suggested, “We’ll find him.”

It wasn’t like Ruth leaving Laurie, she was pretty certain she knew where to find her little girl. We did not.  Our child was lost in a world filled with strangers – and they could be dangerous strangers.  My little boy was alone and frightened somewhere out there.  We were near panic.  It seemed like forever before another deputy appeared before us holding our crying and frightened child, his precious face streaked with smudged tears, his small arms stretching forward to me as we both sobbed; Kevin’s tears from being lost, my tears because he was found and safe in my arms.  “No need for positive identification,” said the sergeant in charge. “Looks like she’s the mother.”

Ruth, nor I, nor Ken, were bad parents, neither were the number of other friends we knew who had misplaced, lost or forgotten one of their children during those years of transition from toddler to an independent human being, especially in a large family. Fortunately, all of our lost children were found.

One couple we know drove 50 miles before they realized their small son was not in Uncle John’s car, but back at the dam.  The return trip was a little frantic, but Steven was safe  in the capable care of the park rangers even though he probably felt lost, abandoned and fearful.  Another family outing involving multiple cars arrived home, hours away from their excursion site, before they realized one little boy was still at the aquarium in San Francisco’s Golden Gate Park.  A quick phone call and Uncle Gene who lived in the City came to his rescue, once again finding the lost child safe with aquarium staff.

Those desperate emotions are always within us and rise to the surface when we feel threatened; possibly in preparation for our own defense.   I suppose they belong to the “Fear Family,” often made worse when fear itself is mixed with believing you are alone and lost.  However, with a diseased mind, those same fears of emptiness and desperation can be a constant in addition to other instinctive feelings that bring unimagined misery to the mindless.  Is it any wonder they can rage, become angry and combative?  Occasionally, I look into Ken’s eyes and see fear and entrapment.  I understand how frightening life can be for AD victims when there is no reasoning power to comfort their own confused state.  Reassurance, however, can come from someone else or something: a familiar voice, a caring touch, pleasant music, soft words, company and many other soothing actions or words.

A few weeks ago I walked through our living room on my way to do a few quick errands.  Ken was sitting comfortably in a chair with Ben beside him.

“Where are you going,” Ken asked.

“I have to go to the bank, I’ll be back soon.”

“No, you won’t” he retorted.

Once again I pled my case, “I’ll be right back – really I will.”

“You’re just saying that,” he insisted.  “You won’t ever come back.”

I looked into his handsome face.  Written clearly was that look of abandonment.  Incredible sadness filled his eyes and demeanor.   I felt astonished to read him so well.  I could see the disappointment, the sorrow, the acceptance of my leaving forever as I moved toward the door.  He was convinced that I wouldn’t be coming back.  I was leaving him alone – abandoning him – in his immediate need for comfort and assurance.

“I can do this tomorrow,” I said to Ben, removing my coat and putting my purse aside.  Ken said nothing more as I sat down, but his face showed relief.  Did he know me?  Was he having a Ken moment?  I don’t know the answers.  What I do know is that for a brief period of time he wanted me nearby.  He wanted that feeling of security — to be with someone familiar — even vaguely familiar.  In much the same way as my three-year-old son had buried his wet face in my shoulder, his arms desperately clinging to my neck Ken too wanted to feel safe, knowing that he was found.  This I could give him with my presence.  Even if it lasted for only a little while, I wanted him to be comforted in that moment knowing he had not been abandoned.

Originally posted 2011-03-21 23:17:12.

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