The ADT Journey – Week 07

As a long distance hiker you hear things about those who have hiked the trail before you.  I knew that lack of water along the Nevada ADT occasionally forced hikers to take an alternate northern route along US 50 instead.  We ended up taking an alternate route into Ely, Nevada as well, but ours was a southern detour caused by too much water.

On the third day of our seven day stretch heading out of Carvers, thunderstorms and my continued lethargy from bad water caused us to stop short at a backcountry campground, featuring the grand attraction of an outhouse to accommodate my frequent visits. The next day I felt better but more thunderstorms plus, um, backtracking from a wrong turn caused us to stop short again. More thunderstorms caused more setbacks, creating a dilemma.

I was scheduled to present my second talk to a Lions Club in Ely, Nevada.  At our current pace I would miss that talk, with the possibility of more thunderstorms and obscure routes preventing us from arriving on time.  Heading south to US 6 would add miles, but we would be able to make up ground quickly by walking a reliable route.

We passed an outhouse early in our detour.  Though the outhouse was private I could not resist making a contribution, still afflicted by intestinal difficulties. The owner of the small ranch came by and, rather than scold us, invited us to lunch and to bathe in the hot springs on her property.  We learned we were not the first ADT travelers she encountered, though personally I had not heard of anyone taking a southern detour before.

Our goal for the southern detour was US 6, which we would then follow into Ely.  A watering trough for cattle awaited us there, allowing us to take a lunch break and fill up with water, knowing that this would be the last source until we reached Blackrock Station in the middle of the next day.  Actually, we did encounter more water that afternoon, in the form of yet another thunderstorm.

At a turn out in the road, featuring a large gravel pile, we huddled with our packs under a groundcloth.  After waiting out the storm for over an hour we made camp behind the gravel pile, the only feature in the open desert that could block our view from motorists.  Not that we had much to worry about.  When we hiked along US 50, the alleged loneliest highway, a vehicle would pass us about every 5-10 minutes.  Along US 6 the gap was 15-20 minutes during the day and at night I doubt more than a handful of vehicles passed our “campsite.”

The next morning the lack of traffic became a problem.  With Blackrock Station still a couple hours away we ran out of water.  We could have hiked two hours without water even in the desert, but memories of heat exhaustion along the Pony Express Trail forbade me from risking that.  Whenever I saw or heard the sound of a vehicle I held up a water bottle as we continued hiking.  Three vehicles passed us without stopping, then I figured that my gesture might have been mistaken for a sort of “toast.”  I instead held the water bottle upside down with the lid open and the next vehicle stopped to give us water.

Blackrock Station on US 6 was a far cry from Middlegate Station on US 50.  At one time the Blackrock Station provided gas and supplies to motorists traveling between Tonopah and Ely, but now the one building there was a single family residence for the owners.  Fortunately, they were home and provided us with water and snacks.  I also used their landline to call Ky and tell her that Blackrock Station was our new rendezvous point.  During our seven day stretch Ky had returned to California to spend time with her sister.  We camped on nearby BLM property that evening.

We slackpacked the 75 miles from Blackrock Station to Ely in three days, with Ky meeting us along the way.  After a couple days without thunderstorms the occasional puddle greeted us along the side of the road, though midafternoon temperatures surpassed 100 degrees.  Thankfully, when a thunderstorm did occur we now were able to wait it out in Ky’s camper.

As each vehicle that passed us was miles away from the next vehicle, we got a good sense of which drivers were friendliest to vagabonds on the (real) loneliest highway.  All truckers gave us a wide berth, which usually was sufficient to avoid blowing off our caps with their draft, and honked their horns in friendly greeting.  Motorcyclists were the next friendliest.  Cars and pick up trucks seemed not to even notice us and sometimes tested our nerves.

My Lions Club contact in Ely was also the high school principal and allowed us access to the school during our rest days there.  We “camped” in the school foyer but could use the showers and other school property during a window of hours.  The talk went well but, as was often the case, I learned as well as presented.  I learned about Ely that a former boom and bust mining town revived itself by diversifying its economy.  After witnessing the devastating effects of boom and bust economies across the state I retained this lesson on the importance of diversification in my memory banks.

Nothing noteworthy about Cindy occurred during this stretch.  I continued to set up the tent, cooked the meals and recalled each day’s events for her journal.  Fortunately, she was able to use the showers at the school without my assistance.

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The ADT Journey – Week 06

Week 06 found us heading into the mountains of central Nevada, namely the Arc Dome Wilderness area and Jefferson Summit.  The wet weather that took a break while we hiked across the desert returned to us in the mountains.  The straightforward route finding was replaced by trails hard to find and hard to follow, and the day packs were replaced with full packs.  As I reminisce about this week, what sticks out in my mind are three campsites and one very special day.

The ADT route suggested a jeep road into the Arc Dome wilderness, but our FS map showed a parallel trail.  Hey!  We’re hikers!  We are going to hike on trails when available!  That is when I received my first lesson about alleged Nevada “trails.”  The trail petered out to nothing, leaving us to traverse the rugged side of a ridge like billy goats. With evening approaching we headed down to a willow-choked creek for camp.

The next morning made this campsite memorable.  As a light sleeper I am awake at first light.  Around 6:00 am, when Cindy first began to stir, she asked me if I heard two women talking as they walked by our tent.

I pointed out the folly of how we arrived at our isolated campsite, literally as far off the beaten path as possible.  Could she imagine two women choosing a route that traversed steep, rocky ridges and/or slashed up through willow choked creeks for miles as part of their daily morning walk?  We both had a good laugh at that.  I sometimes share the story as an amusing anecdote, while yet wondering whether Cindy’s condition accounted for such a hallucination.

The next day we made our way back to the official ADT route, which now followed a trail, a designated National Recreation Trail in fact.  As we hiked up through a narrow, V-shaped valley the trail doggedly stayed in the creek bed.  The overgrowth of willows and other vegetation suggested the trail had not been maintained for years, maybe decades.  The frequent crossings of the creek, a definite hindrance to hikers, suggested the trail was created for horse riders.

We crossed the creek almost twenty times in just three miles.  The water was often knee high or higher due to all the wet weather the west had been having.  Eventually we just left our boots on for the crossings, instead of wasting time constantly taking them off and putting them on.  The wet vegetation soaked them anyway.

Rain came down intermittently while dark storm clouds blanketed Arc Dome and the high pass towards which we were heading.  We stopped hiking early when we hit the upper limits of shrub sized vegetation, avoiding the exposed higher elevations before the impending storm let loose.  That turned out to be the right call as thunder exploded around us that evening and during the night.  In the morning we awoke to ice and snow outside the tent.

A few days later we camped just below a pass near Jefferson Summit.  After a long day of ascending out of Carvers we stopped at a high altitude grassland, near a small stream and with an open view towards the setting sun.  I spent the evening taking pictures of the scenic panorama while Cindy wrote in her journal, sitting comfortably amidst the grass.

Our campsite embodied the purpose of our trip, providing a stress free environment for Cindy, surrounded by the natural beauty and wildness she loves.  I suspected this campsite would rank in the top five for our trip; in hindsight I was right.  Yet in order to write in her journal Cindy needed my continual input as to what happened the past couple days.  In essence I was writing in her journal for her.

Our route the next day followed dirt roads up over the pass, down to a high desert and on to a campground.  As the day was Saturday, July 3rd we encountered a surprising amount of recreationalists for backcountry dirt roads in Central Nevada.  As the day came at the tail end of a heat wave, the majority of those recreationalists stopped to offer their assistance.

I subsequently referred to that day as “Trail Angel Day” in talks and writings about the ingredients that elicit kindness.  Backpackers across a desert on the last day of a three day heat wave engages people’s empathy.  People recreating on a Fourth of July weekend were not too hurried by their busy lives.  As they encountered us separately from each other there was not the diffusion of responsibility that occurs in mass societies and urban living.  The result was gifts of water, food, smiling encouragement and even a monetary donation!

My intestinal problems that day may have contributed to a pathetic look that invoked empathy.  I believe in the well-supported hygiene hypothesis, which essentially claims that the immune system benefits from a workout like other parts of our body.  The hygiene hypothesis provides an explanation for why the Spanish flu perplexingly ravaged younger adults instead of old and why hygienic city folk have more allergies.  The hypothesis explains why people get sicker when they drink bad water the more they try to prevent the possibility through filtration.

In 1975, the year of my first long distance hike, my “filtration system” was dipping a Sierra cup into whatever lake or small stream I encountered.  No one filtered back then, yet no one in my circle of hikers became sick.  By the 1980s the comeback of beavers and the increase of a bacterial infection known as “beaver fever” led to the common practice of filtering water.  For many hikers this meant filtering all water; for me that meant assessing the surroundings and filtering only when I thought prudent.

Over 20,000 miles of backpacking later, after drinking from countless sources of unfiltered water, I have felt ill three times from bad water: once on the Continental Divide Trail in 1985; once on the Wonderland Trail in 2005; and now on the ADT, likely from water in the Arc Dome area.  Two of those three times I suspect, from the symptoms of extended lethargy and diarrhea, that I had “beaver fever.” However, each time my symptoms were mild enough to allow me to continue hiking without any medical intervention or prolonged rest.

Upon looking back, I now realize that Cindy was with me on each of those occasions, drank from the exact same unfiltered sources and never got sick at all.  I realize as well that Cindy seldom suffered from colds.  Her immune system appears to be mightier than mine, yet not mighty enough to ward off dementia.

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The ADT Journey – Week 05

To start our fifth week we headed into the expansive and usually dry Great Basin. For the next two months we would be hiking through high desert … during July and August!  My focus shifted from “How well can Cindy handle this?” to “How well can we handle the hottest, driest hiking we likely will ever experience?”

Why on earth would we choose to hike the desert portion of the ADT during the summer months?  Deciding to start west and hike home, and to do so over the course of a full calendar year, led to our May start date.  Our experience with blizzards in the Rockies during our Continental Divide hike made September 22, the date the first blizzard trapped us at 10,000+ feet in the Arapaho Wilderness, as our target for being well beyond the Divide and heading into Denver.  I was more apprehensive of autumn blizzards in the mountains than summer heat in the desert.

Most of our previous desert hiking occurred during cooler fall temperatures.  Between the two of us Cindy tolerated heat better; I better tolerated water scarcity over long distances.  Neither of us previously suffered heat exhaustion from hiking.  That was about to change.

Our route early on followed the historic Pony Express Trail.  The original users of the trail had the advantage of riding horses as “the mail must go through;” we had the advantage of meeting Ky, allowing me to wear a daypack and resupply our water at the end of the day.  I filled my daypack with water bottles, but lacked a tent, tarp or any other means of creating man-made shade.

We met our first desert trail angels, Matt and Miriam.  Every year they arrive from Switzerland to explore a historic trail in America, renting a Land Rover to aid in their exploration. After having met they turned into trail scouts for us.  Once we arrived at a dirt road junction just as they were backtracking from taking the wrong turn.  Another time they drove back a considerable distance just to advise us which route to follow.  They also left us a gallon of water.

Even with the additional water I misjudged how much water Cindy needed, essentially providing the same amount for both of us.  Towards the end of that first shadeless day Cindy had a touch of heat exhaustion.  The next day I made sure she drank enough water, but I experienced heat exhaustion instead.

Towards the end of the day, after going over a slight rise in the topography, our destination of meeting Ky at US 50 came into view in the distance.  The Pony Express Trail intersected the major road at an angle, like the hypotenuse of a triangle from where we were. My heat-addled mind opted to head on a right angle to US 50, a deviation that in theory would add slightly more miles to the overall route but end the current day quicker.

Unfortunately, I had not recalled the lesson I learned from my previous desert hiking, that distances in the desert deceive.  The distance from our position to US 50 was at least three miles over salt flats.  Having drunk plenty of water that day, Cindy comfortably eased into the lead over the salt flats while I plodded along behind, my foggy head acting like an autopilot to force me on.

Once on US 50, billed as the loneliest highway in America, we continued to day pack until we reached the “town” of Middlegate Station.  The “town” consisted of a rustic motel, an all-purpose store and a few trailers in the back.  Yet every Saturday evening bikers flocked to Middlegate Station for their all-you-can eat steak barbecue and live entertainment.  Guess which evening we managed to arrive there.  There is nothing like an all-you-can eat anything for long distance hikers.

We considered our good fortune in Middlegate State as a reward for surviving our first excursion through the shadeless desert in 100 degree heat.  Our desert tribulations were not quite over, though.  Heading east from Middlegate Station we alternated between ridges and ever higher desert.  We still were day packing, had plenty of water and the temperature was a little cooler, but often found ourselves heading into a stiff 30-40 mph southerly desert wind.

I never had a problem with chapped lips before, despite hiking over snowfields at 10,000+ feet, despite never using chapstick.  By the time we reached Berlin-Ichthyosaur State Park, from where we would acquire our full packs and start heading into mountain wilderness, my lips were chapped and bloody.  Cindy, with sensitive skin normally prone to sun and heat afflictions, spared herself a similar fate through her habitual application of chapstick.  Another week down, another week during which Cindy overall fared better physically.

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The ADT Journey – Week 04

We had not intended to stay in Foresthills.  Instead, we packed with the intention to meet Ky four days later, on the other side of the Sierra Nevada.  As we reached the outskirts of town we encountered Mary in her yard, who hailed us over for a chat.  She marveled at an older couple hiking together wearing full backpacks and lamented never yet having with anyone the kind of relationship we had.  We went no further than Mary’s yard that evening.

The next morning she drove us to the ranger station in town, where we learned about the 15-40 foot snowpack in the Sierra Nevada on June 14.  Hiking on top of spring snow presents only a mild obstacle.  Hike too early in the day and the snow is icy; hike too late and the snow is mushy; a little inconvenient but not a big deal.  The problem with large snowpacks are the large snowbridges that one might fall through.  We eventually caught up to an ADT hiker who reported falling through a 12 foot snowbridge, passing through a week earlier than us.  That was not a chance I could take with Cindy.

Assisted by the rangers and their maps, I first devised Plan A and B to avoid the heavy snowpack.  Unfortunately, this meant crossing the American River, now raging from the snowmelt.  That led to Plan C, then Plan D, which we intended to follow when we left Foresthills.  One day out of Foresthills, beginning the fourth week of our hike, I needed to devise a Plan E..

Plan E brought us on a trail to cross the raging American River over a sturdy bridge, after which the trail ascended steeply for over a thousand feet.  Clouds of mosquitoes fueled by the spring snowmelt shortened our one break to catch our breath.  We were now headed northwest, north of I-80 even, away from our eventual destination and adding miles.  Yet a combination of trails, obscure roads, railbeds, power lines and cross country work kept the snow we faced to a minimum.

At one point during our cross country work we came to the intersection of a rocky crag with I-80. We could struggle over the crag or cross the guardrail onto I-80 and run like hell for about 50 yards.  We chose the latter.  Later that day we came to the road that would bring us south of I-80 again and on to Donner Pass.

Snow depth near Donner Pass, June 18, 2011

We stopped at a Forest Service campground our last night of the four-day stretch.  The campground was still closed for the season and we had an inclination to move on, but a sudden cloudburst found us scrambling to throw a ground cloth over ourselves and gear.  When the storm ended we decided to “make camp” in the concrete entrance way for an outhouse.

The whole four day stretch, with its maverick route finding and unconventional camps, hearkened us back to our Continental Divide Trail journey.  Forty percent of that trail was unfinished when our group thru-hiked it in 1985 with Cindy becoming the first woman to do so.  Our group recommended to the Continental Divide Trail Society that existed at the time to never finish the trail, to preserve the pioneering element of such a journey.  Those were the good ol’ days!

My foot felt better due to the shorter mileage days, but our support person Ky had a physical mishap while we were day packing towards Lake Tahoe.  While pursuing her hobby of geocaching a pointed stick got the better of her shin.  She came to meet us and have us treat her.  

Ky declined to seek a doctor’s help, as none of us had health insurance during the journey.  Cindy’s specialty certification as a nurse was wound ostomy; a couple years ago she would have been an ideal choice, better than a doctor.  The task fell upon me instead.

Mindful of everyone’s lack of health insurance, I aggressively cleaned out Ky’s deep puncture wound, using iodine in liberal qualities, while Ky stoically sat through the ordeal.  She suspected I was having too much fun, but I just wanted to prevent infection, knowing as well the apprehension she felt from lacking health insurance.  One month into the journey and even the support person experienced greater physical difficulties than Cindy.

A glorious day greeted our entry into Nevada, going up and over the Carson Range.  Snow blanketed the top of the range, but not at the depth of the Sierra Nevada the week before.  Instead, just enough snow provided glissading fun in forested areas, but mainly disappeared when the forests did.  With only fourteen miles intended for the day this was shaping up to be the greatest day of hiking on the journey … until I made a navigational error.

We went three miles too far north near the crest before I concluded “this is not right.”  I recharted a course to head cross country down to a FS road, from where I knew how to get back on track.  In total we added about 5-6 miles to our “relaxing” day.  Once we were on the FS road I cussed myself for my blunder and apologized profusely to Cindy for making our day so much longer.  She interrupted me during my tirade to calmly say:

“I’m not worried. You’ll find the way. You always do.”

Cindy once used maps and compass to navigate the unfinished Continental Divide Trail on her own, though whenever we hiked together I navigated.  One consequence of dementia is not being fully aware of one’s new limitations.  Though Cindy no longer could navigate with map and compass, she likely was not aware of that. Her expression of complete trust was one of the nicest things she said to me … and a sign to me our journey alleviated her stress.

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The ADT Journey – Week 03

When we stayed with our Lions Club hosts in Sacramento we had the opportunity to take showers.  As Cindy went to take hers I hung out in the kitchen to work on a blog entry.  No one else was around, which was fortunate when Cindy came running out of the bathroom in a panic, only partially covered by a towel.  She needed my assistance to turn on the shower.

The shower was not complicated, basically you pull and turn the faucet.  The situation stymied and panicked Cindy nonetheless because of her cognitive decline.  Cindy was doing well physically, but small events such as the shower left no doubt of her affliction.

Our route east from Sacramento first followed the American River bike path.  During this section we stayed in the evening at the home of Roger and Barbara.  Roger originally was from Norfolk, though of a different generation.  Another Norfolk native and mutual friend used the Internet to connect the two of us from afar for our stopover.

Ky transported us to our hosts as well as to REI for purchasing a tent.  We had been using a tarp up until this point, but the continuing rain and cool temperatures in the lowlands meant snow up in the Sierra Nevada mountains.  Why we did not bring or use one of the tents we already owned I cannot say in hindsight.

Setting up our new tent in our host’s yard proved to be an impossible task for Cindy.  We used to do this together, but that was not to be.  I showed her how to put a tent peg in one corner to anchor the tent, but she was unable to repeat this in subsequent corners. I ended up assembling the tent by myself.

As we hiked along the north shore of Folsom Lake we were stopped by a mild-mannered yet jovial man, out for a day hike with his wife and a friend.  As we approached each other from opposite directions he pointed to our packs and said: “Looks like you are hiking a long ways.”

We all introduced ourselves and chatted. I told him just how long we were hiking.  Carlos responded that he and his wife Mariana once hiked a long ways as well, during the 1986 peace march across the country.  An instant bond formed that continues to this day.

Carlos invited us to stay with him that evening, which we were able to do.  In hindsight I do not recall why we were full packing that stretch, yet still managed to meet Ky at the end of the day.for transport.  I do remember I was not going to miss out on an opportunity to learn about someone who not only went on the 1986 peace march, but also organized the following year’s peace march that occurred in the Soviet Union.  He also kayaked along the Central American coast for peace.

After Folsom Lake we ascended steadily towards the town of Foresthills and the foothills of the Sierra Nevada.  We could see the mountain range blanketed in white as we neared.  A trail crew we passed warned us that the minimum depth of snowpack crossing the range was fifteen feet.  The ranger station in Foresthills confirmed that on June 14th the snowpack on the trails over the Sierra Nevada ranged from 15 – 40 feet.

Evidently we had some problem solving to do.

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The ADT Journey – Week 02

We left Ken and Marcia’s fine hospitality to tackle Mt. Diablo, our first real climb of the journey.  Near the start of the climb we encountered two women on horseback who invited us to their nearby ranch for lunch. We appreciatively declined.  There was a time in our younger days of long distance hiking when we would accept any trail magic detour, with confidence in our youthful bodies to get back on track as needed.  I had no such confidence in the early stage of our journey to reboot our lives and brain health.

Continuing on turned out to be the correct decision.  A steady rain mixed with the natural clay of the Mt. Diablo State Park trail, plus the abundant addition of horse manure, formed a trail glop I have not seen before nor since.  Imagine the impact of wet snow on improperly waxed cross-country skis.  We either slip-slided our way along the trails or the glop started to attach and build up on our boots, causing frequent stops to declog them.  The grade of the climb was easy; the trail conditions kicked our butts.

We arrived at Antioch into the evening of the next day, later than planned.  Ky called our previous hosts out of concern and they assured her that likely the trail surprised us and we would still get there.  Either they were astutely aware of the unique trail conditions under a steady rain, since they were experienced hikers from the area, or they were going from the image of our packs and my bum left foot when we left their house.

While in Antioch we learned of yet another major rainstorm coming.  We combined the two 16 mile days we planned into one, hiking for the most part along a levee by the Sacramento River, in order to take a rest day in Locke during the storm.  This became the longest mileage day of our journey and the worst one for my foot, confirming that distance instead of weight would be the bane for this unusual injury.

A few kindness firsts occurred in Antioch.  For the first time we were taken out to dinner by strangers who met us.  When we stopped at a 7-11 while hiking through town, the proprietors became the first business to comp us food.  The combined Community Presbyterian and First Congregational Church of Antioch became our first church hosts for spending the night.

Our stay in Locke added to this list the first community garden and community meal we experienced.  Locke started out as a Chinese enclave, created for workers in the fields by the levee.  Now artists and artisans inhabited the quaint town.  The community meal was a small, informal affair of neighborhood townsfolk gathered around a fire and sharing their home cooked wares.  We humbly contributed a large batch of our trail mix, which actually turned out to be a hit among the artisan locals.

We ended our second week in Sacramento, where my talk to a Lions Club during our third rest day became yet another first for the hike.  My original goal for these Lion Club talks was to share tales of kindness and community from previous hikes, but two weeks in and already I had material from the current journey we were on.  We stayed with the president of the Lions Club our first night in Sacramento and with a church secretary that Ky met on the second night.  

Cindy had no physical problems that second week with either the Diablo climb or the 32 miler.  I had problems with my foot, Ky with an allergic reaction to a bee sting, but the one person of greatest concern was doing fine.  Continuing rain also created problems those first two weeks and would continue to do so as we hiked through California.

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The ADT Journey – Week 01

We started our journey from Point Reyes with temperatures in the forties and driving rain.  Both of us started the hike relatively out of shape, but without full packs we went the first 6 ½ miles without stopping.  At that point my nephew Tom joined us for the rest of the day, which eventually cleared up.  That first day eliminated concerns about Cindy’s physical ability.

Adrenaline alone often carries a long distance hiker through the first day out, but then there can be hell to pay the next day.  Cindy still was doing fine, but her cognitive difficulty surfaced.  As we walked along a ridge with a spectacular view of the Pacific Ocean I asked Cindy, with my digital recorder in hand, about how she felt on the second day out.  

Friends in Cindy’s hiking circle called her “Gabby Galvin,” after her maiden name and her ease at conversing with anyone, anytime.  Any number of her hobbies, or her reactions to nature, could spur a warm gabfest from Cindy.  The question I asked should have been a lob for her to hit out of the park, but she gave a timid, restrained answer instead.  This was a consequence of the insecurities instilled by her affliction.  I seldom would be using my digital recorder with Cindy during the journey.

Our first week on the ADT provided a significant contrast to the wilderness trails Cindy or I hiked in the seventies and eighties.  We “camped” the third night out at the Hayes Valley Inn in San Francisco, arranged by Dennis, a Lions Club connection who managed the Inn.  The fourth day out we hiked through three different cities, each culturally distinct from the others.  The farmer’s market on the wharf in San Francisco bustled with activity, while on the other side of a ferry ride across the bay brought us to seemingly deserted Oakland.  By the end of the day we had passed through the college town of Berkeley.  Nope, this was not like hiking in the wilderness at all.

The first week of breaking in to long distance hiking can be tough, but we had company to boost our emotions.  Leslie, a high school classmate of mine, joined us for hiking the first twelve miles of our fifth day out. Then we were hosted at the end of the week by legendary hikers Ken and Marcia.

Our hosts gave no indication they detected something amiss with Cindy.  Perhaps unlike Marty, a hiking buddy from the seventies, they had no frame of reference for gauging her decline.  Or they may have been focused on what they considered to be my own cognitive shortcomings.

Though Ken and Marcia took up long distance hiking later in life, they were already the first two people to complete the Grand Slam of long distance trails.  I would become the third when we finished the ADT, but I hiked the other three trails decades ago.  We were of similar ages and similar achievements, but adapted to much different hiking cultures.

Most of my previous hiking was done in the era when “weight is no object” for long distance hikers.  Part of the reason for this mantra, scorned by most modern hikers, was to go long stretches in between supply stops, to maximize time spent in wilderness in proportion to the time spent in town. I also had much of the heavier gear used in that earlier era.  Hikers like Ken and Marcia now generally walk more miles per day, with much lighter packs.

At the end of our stay, our legendary and generous hosts gave me skeptical glances as I packed to begin our second week of hiking.  The weight I had in my bulky, external pack for two days equaled what they might pack for a week.  I also hobbled along with a foot injury that felt like I had gout.  I would learn over the course of the journey that too many miles in a day aggravated my left foot, not too much pack weight, but our hosts may have placed bets as to when we were destined to quit the hike shortly after we left behind the good graces of their hospitality.

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Ten Years Ago – Preparing to Hike the ADT

Ten years ago, on May 25th, Cindy and I started our 5,000 mile, year long hike along the American Discovery Trail.  At the time my blog posts kept Cindy’s cognitive decline private, focusing instead on observing and sharing tales of kindness and community.  Over the course of this anniversary year I will revisit my posts from ten years ago, this time being open about our real mission to improve Cindy’s brain health by returning to our passion.

We were accompanied on our hike by friend and townsfolk Ky Byrne, driving her van as a support vehicle and towing a camper we helped her purchase.  Publicly, the reason given for support was to help me with arranging and publicizing speaking engagements I would give across the country.  The more important reason was making the hike easier for Cindy and providing insurance for anything that might go wrong.  Meanwhile, Ky always wanted to cross the country at the “speed of a covered wagon” and this provided her that opportunity.  She also wanted to find a cowboy that could be boyfriend material.

On our drive out to Point Reyes, California to start the journey, Ky attempted to get a “Thelma and Louise” vibe going with Cindy.  She even asked me to compose a song about the two of them while suggesting I was going to be, literally, the odd man out.  As I look back on that dynamic ten years later I fault myself for neglecting to fully explain the situation to Ky.  She knew about Cindy’s cognitive decline, of course, but neither the full extent nor what would be some of the consequences.  “Thelma and Louise” was not going to happen.

Thelma and Louise?

Cindy’s decline was obvious to our hosts Marty and Fran, whom we stayed with in Novato just before beginning our journey.  They suspected Cindy had Alzheimer’s and were understandably concerned.  I countered that five different doctors concluded Cindy was too young to have Alzheimer’s; one lab technician showed me her MRI and declared her brain probably was healthier than mine.  We assumed Cindy had an anxiety disorder instead and we hoped that turning to our passion for long distance hiking would reboot our lives and her brain health.

I aim to revisit our journey on a weekly basis, though I already am starting two weeks behind and will need to do a little catching up.

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The Routine of Tiny Perfect Things

I know that the novel and movie “The Notebook” contains elements similar to my experience with Cindy. A man refers to a notebook to remind a woman with dementia of their shared past and love. The symphonic slideshow I rehearse almost daily that relives our 5,000 mile walk across the country resembles this strategy of staying connected.

Because of this similarity I am not likely to ever read “The Notebook” or watch the movie. I understand many people love either or both. I understand I tend to be moved by such movies. I understand the reality of my caregiver situation differs significantly with “The Notebook” fiction. Still, the potential of the movie hitting too close to home is not a risk I am willing to take. I would watch such a movie only by accident.

Accidents happen.

I treat the period from Valentine’s Day of February 14 to Cindy’s birthday on February 19 as Romance Week. In our limited capacity for celebration we watch romantic comedies during this period. This year I selected movies we have not seen before, such as the “The Map of Tiny Perfect Things.”

The movie provided no advanced warning for capturing the feelings in my current situation as a caregiver. How could there have been? The only things I knew about the plot ahead of the time was the teenage romance that formed the genre and that it involved a time loop. I enjoy time loop movies like “Groundhog Day” and television series like “The Good Place;” this seemed like a good bet for entertainment.

The movie features a teenager pursuing a common theme with time loops, perfecting the day he is trapped in. This goes on until he discovers someone else caught in the time loop with him. He convinces her to join him in hunting and mapping all the perfect moments that could be found in that day. Eventually he wants a romantic relationship to develop, but a poignant secret holds her back.

I’ll spare you the spoiler alert of that poignant secret but, once the male protagonist discovers it, he realizes he is not trapped in his own time loop, but hers. He also realizes that he no longer can, in good conscience, impose his desires on her in the time loop. Instead, he resigns himself to his potentially infinite involvement in a time loop he cannot escape.

That feeling of resignation to a time loop beyond one’s control hit me like a brick. For eight years of my caregiver existence time progressed linearly. As Cindy declined I made adjustments to the “new normal.” Almost two years ago Cindy had her first seizure and went on hospice care. Since then I have experienced few “new normals.” Instead each day has become more like a time loop of the previous day.

Instead of a map of “tiny perfect things,” I developed a routine. These routine things help with Cindy’s will to live, my brain health and welcoming each new loop into existence. They mostly work. When I go to bed in the evening I look forward to starting the routine over again for the next “loop.”

I particularly look forward to the start of each day. After spending a few minutes changing Cindy’s mattress pad, I lift her out of be bed and hold her in my lap, where I rock her as we listen to music. I suspect this tender scene would bring a tear to the eyes of most observers. I would miss this start to my day when the “time loop” ends. Plus who knows? Maybe I am not as dedicated in my routine for brain health when the loop ends.

Yet the uncertainty from essentially being caught in Cindy’s time loop leads to this feeling of resignation, a feeling portrayed in “The Map of Tiny Perfect Things” better than anything else I have watched. I can engage with a modicum of joy in my routine of “tiny perfect things” each new day that loops around, but must resign myself to being stuck in a loop beyond my control, seemingly without end. Having stumbled upon this discovery by accident, from now on movies with time loops will set off an internal advisory label for me.

“The Map of Tiny Perfect Things” is a Prime Video original movie.

Posted in Alzheimer's Love Story, Home Caregiver Chronicles | Tagged , | 7 Comments

Ten Years After

This was a morning when Cindy’s underpad needed to be changed at the start of her day. As is the routine for when this happens I pick Cindy up in my arms and sit down in the neighboring chair with her in my lap. To accomplish this same task home health aides need to rock her back and forth on the bed, but I have the strength and legal immunity to use this riskier method.

Riskier perhaps, but my method involves TLC to an extent that no nursing home can provide. I gently rock Cindy while suggesting we should relax and listen to the music for a while. The theme I picked for that morning was Andrea Bocelli. As Cindy’s head sunk into my chest I reflected on the December past, present and future of our final journey.

Ten years ago, in December of 2010, Cindy was let go from work. She probably should have been released earlier, but her advanced training and bedside manner earned her a reputation as the agency’s “Golden Girl.” They were giving her the benefit of doubt until there could be no doubt.

December 2010 thus marks the beginning of my caregiver role. A few months later we walked 5,000 miles across the country under my “care.” Cindy improved during the journey, but no further improvement occurred after the hike was over. While doctors continued to rule out Alzheimer’s because of her age I tried different things to help Cindy get better.

In the summer of 2013 I experimented with working at a nearby residential camp for six weeks, thinking she might need greater independence from me. There still was a safeguard with our son Noah also living at home and I spent all my off days at home as well. Yet my “experiment” backfired and she declined noticeably during the summer. In the fall of 2013 she finally was diagnosed as having Alzheimer’s.

In December 2013 we started our bucket list when we booked our first and only cruise, which became part of our first snowbird winter. A few months later we returned to long distance hiking on the Pacific Crest Trail, accompanied by our oldest daughter Charissa. This time the hike did not reverse her decline.

By summer 2016 Cindy could only walk a few hundred yards at a time. With donations from people reading this blog I acquired a pedicab in order to get her outside and around our pastoral town as much as possible. Many thanks, by the way, your donations enhanced our quality of life. I later acquired an adult stroller to do the same.

By December 2016 Cindy could no longer walk on her own. By putting her arm around my shoulder I could walk her places, but she could not even stand up independently. There was no task she could do for herself and she was essentially nonverbal. In other words, she had the symptoms for the last stage of dementia.

As our ten year “anniversary” approached I reacquainted myself with the seven stages of dementia known as the Reisberg Scale. I was particularly interested in how long each stage lasts on average. The first two stages are unmeasurable because they correspond to nonexistent or undetectable decline.The mild cognitive decline involved with the third stage lasts from two to seven years.

When Cindy was let go from work ten years ago she already was in the fourth stage, considered to be early dementia with moderate cognitive decline. When we started our bucket list she was in the fifth stage of moderately severe decline, with some sixth stage symptoms of severe cognitive decline as well. Reisberg estimates the average length for the combined early and middle stages of dementia to be six years, which held true for Cindy.

The average range for the final seventh stage of late dementia lasts from 1.5 – 2.5 years. Cindy has been in this stage for about twice as long as the average for the normal onset of Alzheimer’s, but for early onset these ranges are supposed to be compressed as those afflicted decline faster. Most estimates I read gave a range of 4 – 8 years for all the dementia stages combined. Cindy already has survived 25% longer than the upper range for early onset dementia, with her gains coming in the later stages. She has not shown signs yet of the three common mechanisms of death for Alzheimer’s: starvation, pneumonia or skin infections. In fact, the visiting aides and nurses continue to marvel at her appetite and skin condition.

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Andrea Boccelli starts to sing “Time to Say Goodbye” as Cindy continues to relax and listen in my lap. This was the last song in the mix tape our exchange student daughter from Germany gave us upon her departure. From that moment on this song always moved me deeply.

Living in the present is key to thriving as a caregiver, but sometimes that is not humanly possible. I do not feel like the time is near to say goodbye to Cindy, yet how can one avoid thinking about that while listening to those lyrics? That is a painful reality to our situation; there must be a hundred triggers for thinking about goodbye that are just going to keep happening. Each time will have no bearing on the present while calling to mind a sad moment in the future.

Another impossible task is to permanently tune out all the background “white noise” of caregiving. I hardly ever notice any more how the legs of my backpacker wife have atrophied, but every once in a great while that “noise” comes to the foreground. Occasionally I notice how sunken her eye sockets have become; or her lack of energy. Ironically, living in the present means these pervasive signs of decline usually fade into the background like white noise, but occasionally they rise to unpleasant consciousness of what the past once was.

Living in the present does have a downside. Ten years ago I thought I would hike around the world someday. I was gratified that nobody ever doubted me when I shared that intention, but as time past I doubted I would have the longevity. I curtailed my ambitions down to Europe, South America and Oceania. Now I do not think about any future hikes abroad, realizing in the present that is not within my control. Pining for things that may not occur is a one way ticket towards depression, better instead to dwell on the things you can control.

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Twenty years is often cited as the longest amount of time a person might be afflicted with Alzheimer’s. Ten years from now I could be writing a blog post titled “Twenty Years After.” Assuming that might become true I need to make a few adjustments in order to manage another ten years.

I never meant to retire. Studies have shown that people who do not retire have better brain health. Of course, people who do not retire remain in or start new jobs they enjoy. I had plans in my next phase of life to draw income from both music and writing, maybe even from hiking, but as time passes on I cannot assume these will happen due to physical limitations.

Thus I need to find a way to draw some income while being a caregiver. Our financial situation was dicey at one time with neither of us working. Refinancing the house, the generosity of others and a one time windfall righted the ship. We are financially stable for now but ten more years with neither of us working could put us back into a hole. Being engaged in projects is a key to caregiver health, I just need at least one of my future projects to draw income.

The symphony is finished and the plans to perform it next summer derailed by covid, but that opens the door for producing a DVD instead. Originally I had planned to donate income from the symphony to charities related to our final journey, but I may need to keep a portion for myself. I hope this project will facilitate earning income from other music as well, produced by my band The Bards of Balance. Maybe I will create new music targeted for income as well.

I stopped accumulating stuff long ago, as do most people gaining wisdom as they age. There are books still unread, board games not played, in that accumulation. As a form of closure I intended to go through our various archives of stuff in my next phase of life, some to digitize like photos and music, others to use for the first and/or last time. Now I am thinking I need to find a way to start that process now.

A variation of this archives theme is to go back and read through the entries of this blog. Those who have followed our journey for a while likely noticed the entries becoming fewer and farther in between during Cindy’s final stage of Alzheimer’s. There is less to report now with less free time to do the reporting. What I do share now  is less informative or inspirational, contradicting the intended purpose of sharing.

A coming New Year approaches while potentially another decade as caregiver awaits. I still will post any new development in this blog, but also share “reruns” from the past. This exercise may also identify enough material to be book worthy, providing an opportunity to share our final journey with a larger audience and a means to draw income in my next phase of life, whether that time is far off or close at hand.

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This is the past, present and future of our final journey as Christmas approaches. A sobering tale perhaps, but fortunately without the specter of Christmas ghosts needed to guide us. Instead of ghosts there are the spirits of Cindy’s will to live and my will to persevere. Snapping out of my December themed reflections, I return Cindy to her hospital bed and continue on with the routine that helps both spirits to thrive.

Posted in Alzheimer's Love Story, Home Caregiver Chronicles, Journeys, Stages of Decline | Tagged , , , | 6 Comments