The ADT Journey – Week 04

Posted on June 29, 2021 by admin

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

Posted on June 21, 2021 by admin

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

Posted on June 16, 2021 by admin

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

Posted on June 10, 2021 by admin

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

Posted on June 8, 2021 by admin

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

Posted on February 26, 2021 by admin

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.

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Ten Years After

Posted on December 19, 2020 by admin

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.

*******

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.

*******

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.

*******

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.

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All in the Eyes

Posted on November 20, 2020 by admin

After feeding the cats I return to our “bedroom” to start Cindy’s day. If her eyes are closed, droopy or alert I go about my normal routine. On this day her eyes are fixed on the ceiling in a vacant gaze, giving me cause for concern. Before I get near Cindy I chat about anything that comes to my head. I turn on the music and overhead light for more stimuli in the room. Then as I draw near I announce:

“Hey, beautiful! I’m going to give you a hug. OK? Are you ready for a nice hug? Here I come.”

Whenever I see that gaze in Cindy’s eyes now I go into these precautionary measures. A few weeks ago Cindy also had a vacant gaze in her eyes as I was about to start her day.  When I walked right over and hugged her, she immediately went into seizure. Her face turned beet red, revealing intense physical and/or emotional distress.

I continued hugging Cindy while adding soothing words to lessen the seizure. I did not give her lorazepam after the seizure was over since they usually are weeks apart. Plus I have been giving the anti-anxiety medicine only at night; I keep Cindy calm by other means during the day.

A few hours after her wake-up seizure Cindy once again vacantly gazed at the ceiling. I played guitar as a strategy that has worked well in the past. Not this time, though. Her body again went rigid and she started to breath convulsively. I threw the guitar on my bed and rushed to limit the seizure activity from round two.

Now that I am concerned when I see Cindy’s vacant gaze in the morning we have reached another milestone in Cindy’s decline. I gauge her condition by her only tell-tale feature, her eyes. Her vacant gaze indicates some type of internal agitation, occasionally accompanied by spasmodic rigidity of her limbs. This upsets me even when seizure is not the result.

At times Cindy still has alert eyes. She will look around the room trying to make sense of what she sees. Sometimes they follow me or another person around. Sometimes the alert eyes are joined with a smile. Ironically, Cindy becomes most alert for the few days after a seizure, as if she has shaken the fog away from her head.

When Cindy is neither agitated nor alert her eyes are closed or drooping, revealing Cindy to be asleep or barely awake. Another milestone had been reached a few months ago when I let Cindy sleep whenever she wanted during the day. She still sleeps at night as well.

I know what to make of the vacant gaze … that’s bad … and the alert eyes … that’s good. I am never sure what to think or feel about the closed or drooping eyes. Part of me feels relief, even comfort, in knowing that Cindy is at least not going through some internal agitation. I occasionally imagine that she might even be having a pleasant dream. The other part of me recognizes the increased amount of time Cindy has a vacant gaze or sleepy eyes, rather than being alert.

I take pride in Cindy lasting so long in hospice care, now going on twenty months. I take pride in how the nurses and aides still marvel at Cindy’s appetite and skin. I take pride in Cindy’s will to live continuing indefinitely. She cannot become any more nonverbal, immobile or incapacitated than in this final stage of Alzheimer’s, but her appetite, health and will to live remain strong.

Unfortunately, a will to live can prevent dying but provides no remedy for being fully incapacitated, at least not for Alzheimer’s. A will to live does not reverse the declining alertness. A will to live may not even mean life is being enjoyed. Make no mistake, the decline continues. It’s all in the eyes. 

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Mind over Matter

Posted on October 22, 2020 by admin

“Mind over matter.”

That declaration by Cindy echoed in my mind as I pushed her in the stroller to an outdoor wedding, 3.5 miles from our home. We had planned to jog to this event for months. Lindy the bride considered us an extra set of parents, calling us Mom and Dad since high school, and our youngest daughter Serena was her maid of honor. 

Three weeks ago jogging that distance would have been easy and the only foreseen obstacle to our attendance would have been weather, but within those three weeks an unforeseen obstacle was thrown in our way. The same day I fixed our broken stroller we went out for a seven mile jog. As we were nearing home, jogging up the cracked sidewalk that runs past Infinity Hall, my sandal caught in a crack and I went down. I was not going to let go of the stroller on a hill and it went down with me.

Cindy was fine; the stroller merely tipped backwards in my grip until she was situated comfortably gazing at the sky. I did not fare as well. Increasing stiffness and pain surrounded my left knee as I lay squirming on the ground. State highway workers coming down the hill in a large truck witnessed the spectacle and pulled over to help. The two of them got me standing again and I used the stroller as a walker to hobble my way back home.

Exactly two weeks later the immense swelling of my leg, indicative of a partial ligament tear, subsided enough for an outdoor test. Three days before the wedding I walked up and down the driveway ten times. Two days before the wedding I walked the few hundred yards to the village center for errands. The day before the wedding I had coverage for Cindy that allowed me to walk in the woods for at least four miles. Since pushing the stroller on roads would be less hazardous to my knee than a trail I felt I was ready.

On our way to the wedding, two thoughts crossed my mind by the time I reached the end of Laurel Way. “I’ve got this!” was my first thought. Having gone a third of the distance already I knew I could make the distance. “This is going to suck!” was my other thought. Every step was going to involve some level of discomfort.

I turned onto Route 44, a major road I usually avoid with the stroller. Fortunately, the shoulders were large and we were safer than jogging up a cracked sidewalk. I shortened my strides as most long distance hikers learn to do on the trail to prevent further injury. Shortened strides means less discomfort; less discomfort means more opportunity for my mind to wander. I reflected on the time Cindy declared “mind over matter.”

In the spring of 1980 we were part of a group training to thru-hike the Appalachian Trail that year. We were not yet a couple, but the mutual interest was strong. During a phone conversation I was filling the experienced hiker role of preparing Cindy for the worst: warning of the potential boredom, discomfort and pain. Tenderfoot though she was, Cindy’s response to my cautions was: “Mind over matter.”

For years I have joked to our kids and others that what attracted me to Cindy was the longest stride I had yet seen in a woman. In reality that was more of a first impression. “Mind over matter” was what really got me thinking about Cindy as my future life partner.

We arrived at the wedding in better time than expected. The picnic tables lined up under the broad pavilion left a wide aisle down the middle for a procession. We were early enough to pick almost any table; to catch a little sun we chose one protruding a little outside the pavilion in the rear. The rest of our family came trickling in to join us soon after. Being in the back benefited Charissa and Matt as they walked about holding Lyla. By my guess Lyla was the youngest attendee at three months old; she drew an adoring pre-ceremony crowd.

Bagpipe and drum accompanied the procession. The drummer later commented on FB that this was the most joyous wedding for which he performed. I am not sure how much of the joy Cindy could fathom but she remained alert for the entire ceremony. The recession of the wedding party ended up near us in the rear of the pavilion, where Lindy said “Hi Mom!” to Cindy. 

We did not stay for the wedding buffet. Leaving before a food buffet is a drastic departure from our long distance hiking days, but by this time not even our picnic table caught any sun. Though the wedding enjoyed wonderful October weather, the air was growing chilly for Cindy and we had a long stroll to get back home. Recalling the discomfort on my way to the wedding also promoted a desire to get the return home over with sooner rather than later.

The stroll went better than expected. Having just walked this same stretch I established short term goals that accompanied my shortened strides in abetting the discomfort. I was able to place mind over matter as I again drifted back to when Cindy spoke those words.

Once our hike of the Appalachian Trail began Cindy proved her words not to be hollow. During the first half of the journey Cindy’s knees were often strained and inflamed; she often wore knee braces or wraps to sturdy her knees. Many days Cindy impressively displayed mind over matter; though one day in particular I will never forget.

A support vehicle enabled injured hikers in our group to shed much of their pack weight. The problem for people who took advantage of this was they could not stop short of where the support vehicle was going to be. For an infamous thirty-two mile day this meant we started hiking at 5:00 am. I previously hiked many thirty mile days with a full 40-60 pound pack, but none were as arduous as this one would prove to be.

Cindy’s sore knees caused a tediously slow pace. We needed 21 hours to reach our destination, arriving at the Port Clinton pavilion at 2:00 am. I nodded off while walking several times; Cindy’s discomfort kept her awake. Only by placing mind over matter could both of us prevail. Despite the ordeal, I do not recall a single cross word spoken to each other. A life partnership was forming.

Placing mind over matter helped with this final journey of ours. Other lessons learned from long distance hiking have guided us throughout our continued life together as well, but none are more valuable than this. Cindy’s continued will to live through nineteen months of hospice and my perseverance as a caregiver are both examples. I suspect any worthwhile journey must survive the test of mind over matter.

Posted in Alzheimer's Love Story, Caregiver Journal, Journeys | Tagged , , | 5 Comments

Best Laid Plans

Posted on September 24, 2020 by admin

We were looking to carry on a new tradition this year on the date of our anniversary, September 19. Last year on that date I took Cindy to the top of Dennis Hill in the adult stroller. Our daughter Charissa with her husband Matt met us on top, delivering a picnic with food ordered from Woodcreek Pub and Grill. This September I planned a return outing to Dennis Hill, turning the event into an ongoing tradition.

Sometimes the fates conspire relentlessly against you. The conspiracy against the Dennis Hill tradition began on the auspicious date of September 11, when I was to donate blood to the Red Cross. For weeks my BP has been down where it should be; I was guardedly optimistic that my diastolic would meet the requirement for donation. On the other hand, I have white coat syndrome; my blood pressure is elevated by the anticipation of being monitored.

White coat syndrome won out on that day. I scheduled another appointment for September 17, two days before our anniversary. Pushing a stroller up to the top of Dennis Hill would be difficult if I succeeded at donating blood just two days prior. I made the first mental adjustment to our new “tradition,” by planning an outing to the ballfield instead.

On September 14 the frame of our adult stroller broke. I immediately sent a message to the manufacturer, Adaptive Star. Though their response was great I would need to wait for a new frame to be shipped. I could carry Cindy in my arms for a fair distance, but not to the ballfield, not after donating blood two days earlier. I started thinking in terms of having an anniversary celebration on our own lawn.

I understand the problem with planning an outdoor anniversary picnic as an ongoing tradition. Cindy now has been in hospice care for eighteen months. Such longevity has an indefinite feel. As long as her will to live thrives she could go on indefinitely, but probability suggests the tradition could be short lived. As a practical matter I intended to invite our long distance hiker community to the picnic in addition to our family.

We have a group page for announcements to our long distance hiker community, but I could not make an announcement until I knew where. I could not announce where until I knew the status of both my blood donation and broken stroller. On Thursday, September 17, the blood donation was successful while the frame was just then being shipped. I finally announced our anniversary plan for Saturday, to be held on our own lawn.

A two day notice is not much, but turned out to be too soon. I knew for days that Saturday was to be cool, in the zone where bringing Cindy outside depended on the wind chill. On Saturday morning I awoke to a forecast of high winds. Since our hiking friends did not have much notice anyways, I did not hesitate to cancel the invite in the eleventh hour.

I could make the theme of this “a series of unfortunate events,” but that would be misleading. If temperatures in the fifties with steady winds in double digits would be too cold for a lawn picnic, they certainly would have been too cold on top of Dennis Hill. Just a single factor, not a whole series, would have derailed our best laid plan.

I could make the theme of this “you can’t always get what you want but … you get what you need.” We still celebrated our anniversary indoors with family. For most of that time Cindy was fairly impassive, as she often is these days. Yet there were times she looked attentively in the direction of Lyla, our new granddaughter. How much recognition or perception was there in her gaze? I cannot answer that, but I know she paid more attention to Lyla than she would have to our hiking community, extremely dear to us that they may be.

Two years ago our family gathering would mean our three children. This year that number doubled with Charissa’s husband Matt, daughter Lyla and Serena’s fiance Enoch joining us on FaceTime. We got what we needed in terms of a special anniversary gathering, but there is something more to the theme.

Though both Cindy and I felt closer to our long distance hiker friends over any other community, there is no lineage involved in that belonging. There was no preceding community that gave rise to us long distance hikers. When the last of us pass away there will be no community to which ours “gave birth.”

Gathering around Cindy’s hospital bed, in our makeshift combo bedroom/living room, our family lineage hit home. My best laid plan went astray for Cindy, but we have family. Some day one of our children’s best laid plans for me will go astray, but they will have family. Some day Lyla will have a best laid plan go astray for her mother, but she will have family.

The best laid plans of caregivers often go astray. The series of unfortunate events, or single event, that thwarts our plans changes with the ongoing situation and times. What does not change for fortunate caregivers is the presence of family. May the circle be unbroken.

PS: The frame came for the stroller and it is fixed!

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