MISSING PERSON

[Photos are irrelevant to the text.  They’re only decoration.]

An impossibly romantic garden ornament.  (Spain)

November 2007

The very first time it happened we were in Puerto Natales.  It’s a small city in Chilean Patagonia, a jumping off spot for trekking Torres Del Paine National Park which we were planning to do in the days to follow.  Puerto Natales is a windswept place with everyday gusts often strong enough to knock over anyone not holding onto something.  Trying to pull open the door of a restaurant you would be convinced there was someone on the other side pulling it closed.  Anyway, we hadn’t yet done our trek, an expedition that was appearing more formidable the closer we got to the start. Then, too, most of our fellow hikers were younger than we were.  We were to cover some 65 kilometers over five days, and the weather might be awful even though it was spring, going on summer.  We had already encountered snow on our first trek near Chaltén, in Argentina.  It was intimidating. 

Ken and I and our seven fellow trekkers were booked into a somewhat threadbare hotel. The electricity went off once or twice, and our small room didn’t encourage staying indoors, so we had spent our spare time walking around the town, covering most of it in a half hour’s stroll.  Early one evening Ken said he was going to take a short walk.  “Back soon.”  I stayed in, reading, more than likely.  A longer time than “soon” passed before he returned.  He told me he’d had a memory lapse.  For a short time he completely forgot where we were staying.  Or where he was.  It was all a blank.  Finally something familiar along the way caught his eye, and he found his way back.  We were both shocked. I cried.  We hugged each other.  I believe at that moment we both recognized this was the beginning of something, and whatever it was, it was going to matter. 

Then we put it out of our minds.  The trek went well, the weather was beautiful.

It wasn’t until weeks later that I thought back on an odd moment during our first trek, the one in Argentina.  We had been hiking there with fellow trekker Bill Kan (who ended up with us in Chile as well) and our guide, photographer David Albert.  On the last leg of our final day’s walk the three of us noticed Ken walking crookedly, in a kind of comma position.  The obvious reason should have been a misaligned pack, a muscle cramp, a backache––something.  But, no, there was no problem. Ken could easily straighten up, but he said he didn’t want to.  He wanted to walk this way.  Of course we all laughed about it, but it nagged at me.  David was worried about how Ken would manage our next trek, and arranged for him to get a set of trekking poles the next day.

When the mind begins to take odd turns, does it also affect the body?

April 2012

A lot of what you do when you’re at home is mixed up with the routine, ordinary stuff.  Travel, on the other hand, sometimes sharpens the focus on behavior that doesn’t fit the pattern.

One Sunday, a day before we were to fly to Vienna and St. Petersburg, Ken suddenly had trouble walking.  There was no identifiable cause or source of pain.  He said he needed a cane, and right away.  It was short notice as we were flying out later that day.  But we managed to find one.  Once in Vienna he was able to walk, with the cane, but very, very slowly.   Was he able to move a bit faster?  No, because a slow walk “feels good.”  There was no use trying to pinpoint a cause. We flew on to St. Petersburg where at first Ken continued to walk very, very slowly, at moments hardly moving at all.  It took fifteen minutes to complete one short block.  A day later his walking speed picked up.  By the time we left Russia five days later the cane was a thing of the past. Back again in Vienna the next week his walking was completely normal.  We walked everywhere.  The cane has collected dust ever since.

Was this a physical manifestation sign of something in the mind? 

On other trips between 2007 and 2012 nothing unusual happened.  No, wait.  There were incremental changes.  By 2012 I realized Ken was growing more dependent upon me for planning and recalling details of our itinerary.  By 2013 he might have an idea of where he wanted to go, but the arrangements were all up to me. 

Part of the perennial garden, late June

2007?

The further you look back, the more you see.

As early as 2006 or the beginning of 2007 Ken first became aware of his memory lapses.  These lapses weren’t confusions or mix-ups; they were literally missing pieces of short-term data.  His doctor at the time in Lexington, Massachusetts, referred him to a neurologist at Boston’s Brigham Hospital who administered a battery of memory tests.  Ken made short work of lists of numbers but didn’t do as well with lists of objects.  There were other tests, too, that indicated the tell tale signs of memory loss.  I saw this as aged-related memory loss, not the kind of confusion that comes with Alzheimer’s. 

In June that year Ken volunteered for a study looking for the causes of Alzheimer’s disease and testing a potential curative drug.  (It wasn’t.)  He was to take the experimental drug (or placebo) for several months and the results, or lack thereof, were to be measured.  One month into the study his gastrointestinal reaction to this drug (no placebo, for sure) was so severe he was almost hospitalized, and I persuaded him to get out of the study.  (It’s worth noting, since he was diagnosed with colon cancer in 2013, that the study doctors did a colonoscopy during his recovery to determine whether the drug had damaged his gastrointestinal system. The results were negative. The colon was clean.)  Measurements made while he was in the study showed that his brain has the same kind of plaques associated with Alzheimer’s and other types of dementia.   But Ken had his wits about him, even though he forgot things.  He read scientific journals, discussed issues, and still had a powerful wit.  It wasn’t Alzheimer’s.  But it was memory loss all the same.  His hearing loss was what began to isolate him in social settings. 

It was around this time that he began losing his ability to distinguish different actors’ faces on the television. An actor who appeared in one scene and was dressed differently in another he might think was someone different.  I remember the moment when he first asked me who was who.  

When you look back, there are usually signs that point in a certain direction, except when they don’t:  Putting objects in ‘safe’ places where they will later be hard to find; losing track of objects like keys (who hasn’t done this!), tickets (hard to find because, as with many guys, he has too many pockets to put them in!), becoming more “absent-minded” (isn’t the “absent-minded professor” just a personality type?) forgetting to pack needed items like shirts for a trip (haven’t we all done that sat least once?).  It's a question of frequency.  

He never learned our phone number when we moved to Vermont in 2011.  Or remembered our zip code.  Or mastered his smart phone.

Our friends from Kentucky on Buck Mountain in July, 2016

September 2014

Cambodia and Vietnam would probably be our last major trip, I figured.  Ken had been through chemo and surgery for colon cancer by this time.  We had been to London in May for a short visit, and his stamina was notably down.  (He also got lost in the British Museum.  This was posted on nonewsfromhere.blogspot.com, “Lost in the British Museum.”)  I was wary about the Southeast Asia trip, but I thought if it could be made comfortable enough for him, it would work.  And it did.  We walked a lot, even kayaked, traveled in every mode of transport––motor rickshaws, pedal rickshaws, wagons, buses, boats––and had fun.  His participation in conversation had lessened (hearing? understanding?) but he was in touch.  He forgot things:  he lost his binoculars in one place and his iPad in another.  At gate for our flight in Tokyo he said he “wanted to stretch his legs for a bit” (uh-oh!) and before I knew it he was off.  I was pinned in place with our luggage.  Nerve-wracking minutes went by.  Boarding was announced.  I asked that he be paged, then remembered it wouldn’t do any good because he wouldn’t be able to hear the page.  At nearly the very last moment he reappeared as if by magic.  It was almost funny.  Next time, I thought to myself, he’s not taking off alone, ever.  No, this time I said it out loud.

This year's crop of swallows at fledging time.  There were four in all.

December 2015 and June 2016

Which is worse, what happens in the body or in the mind? 

Southeast Asia wasn’t our last trip after all.  We managed to get to the Galapagos in December, spend a weekend in New York, and go to Spain in May.   But they were near things.  Each trip had at least a small worry or distraction: a sudden weakness in the Whitney Museum, fainting in Seville  (“The Rain in Spain” post on nonewsfromhere.blogspot.com), incontinence in the Galapagos.  It wasn’t until we were home in June that things fell apart. 

Ken may have been more uncomfortable physically than he let on before June.  But it was clear by that month that he needed more pain medication for the colon cancer.  About which there is little to be done.  Radiation is long over and can’t be repeated a third time.  Surgery did not stop the cancer.  Chemotherapy did not stop the cancer.  Drastic therapies are out of the question.  So the cancer has free rein.  The trick is providing the right amounts of medication for comfort.  A nurse from hospice visits regularly.  That is the physical part. 

What is harder to experience and see is the mental part.  The confusion.  Memory has been slipping away slowly for such a long time that to see it suddenly slipping faster is almost disorienting.  It was a long time ago when actors in different clothing or scenes first appeared to Ken to be different people.  Now the story line is often incomprehensible.  Ken still takes up the science journals, but will forget what he has read shortly after reading.  He will probably not be able to discuss what he has read.  Worst of all are the waves––and they are exactly that, waves that well up and then recede––of a mixture of confusion, anxiety, and despair all together.  Why are we here?  How did we get here?  What’s happening?  He calls all this “feeling spacey.”  I don’t really know what that means, but it’s not a terrific feeling. 

There are also good, kind of "normal," days.

We went for a short hike recently.  He took it slow.  Afterwards he was weary, yet happy to have done it.  He was in good spirits.  Towards the very end I had noticed he was walking crooked, slanting to the left.  This was the first time I’d seen him canted like this since our trek in Patagonia.  Once again there was nothing physically wrong.  “It feels good to walk this way.”

He never wanted to be like this.