My Caregiver Dilemma

Posted on July 13, 2020 by Humanity Hiker

As I gave Cindy her first hug of the day, claiming instead she was giving me a hug, I asked her the usual question:  “Did you sleep OK.”

Back when Cindy could answer she always said “yes” even though I knew that could not be always true. I asked the question not so much to find out how she was sleeping, but to start the day with a dose of her innocent cheerfulness. I continue to ask the question in memory of that cheerfulness.

This morning I half expected an answer. The day before Cindy was alert and frequently smiled for both our morning visitor and our afternoon home health aide. Such alertness is typical for two days after a seizure.

Since Cindy’s first seizure in March 2019 she has averaged about one a month. Sometimes they are weeks apart, sometimes months. The day following a seizure Cindy spends more time than usual resting. Then the next day, no matter how severe or mild was the seizure, Cindy shows greater clarity and good humor.

Since Cindy has been in hospice care I give her a small dose of lorazepam, included in the hospice package, when she becomes “twitchy (there are commonalities between Alzheimer’s and Parkinson’s).” Occasionally, I will give her lorazepam before bedtime to increase the odds we will sleep through the night. That was before I rediscovered that anti-anxiety drugs increase the chances of dementia, or possibly an earlier death from dementia.

I had skipped the lorazepam for a couple days before this latest seizure, even though there were a couple signs that the next seizure might occur. She was twitchy in the evening ; she did not have a bowel movement for a couple of days. When the seizure occurred I did not kick myself, but rather became hopeful for what might happen next.

I was not disappointed as she smiled frequently for both our visitor and home health aide. As I was taking Cindy’s socks off  that evening I got the inspiration to play “This little piggy” with her. She cracked a pleasant smile as I went “wee, wee, wee all the way home.”

The next morning Cindy again flashed a couple of smiles, though not as many. As the day progressed she reverted to the norm. During our evening “dance” my now impassive partner got my sleeve and arm soaked with drool. A seizure can buy a couple days of alertness and humor, but not more.

This now is my biggest dilemma as a caregiver. Do I give lorazepam only after a seizure? If I do that she will have better brain health and longevity, more moments of joy. Or do I give lorazepam whenever the signs are there for a possible seizure? That means more sleep for me, less discomfort for Cindy.

I suspect most people would do everything to make a loved one comfortable in the present. Yet as long distance backpackers both of us are accustomed to discomfort as a necessary byproduct of a preferred lifestyle. If I were in Cindy’s shoes I would opt for joy over comfort. I have no doubt that is Cindy’s preference as well.

It ain’t easy watching your loved one twitch almost to the point of convulsion. It’s even worse when the convulsions start. On the other hand, my greatest moments of joy these days as a 24/7 caregiver are Cindy’s moments of joy. I fear there would be no joy left in her, plus I could be hastening her demise, if I relied too heavily on lorazepam (which actually is one of the most harmless anti-anxiety medicines).

I do use other means first to reduce twitching. I give Cindy supplements like melatonin and ashwagandha to calm the mind. I play guitar and sing for her. I read to her. We go out for long jaunts in the stroller. She never gets twitchy during one of our jaunts. Yet these strategies cannot be maintained constantly throughout a day. Giving her lorazepam every time she twitched would still amount to a couple times a day.

What a dilemma! Given the state of constant decline, no doubt I will have to give her lorazepam frequently. Did I mention that morphine also is in the hospice package? For now that’s a dirty word, an unthinkable.  Ironically, if/when the situation gets to that point I can be assured that she will have slept OK, but the cheerfulness that Cindy embodies will be gone.

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Aintee’s Barbecue Revisited

Posted on June 22, 2020 by Humanity Hiker

We discovered Aintee’s Barbecue in East St. Louis, during our walk across the country. We had just crossed the Mississippi River into Illinois on a clear day late in December, the kind of day that allows odors to travel far. An open air barbecue attracts hikers like moths to a flame.

Here is the original Aintee’s Barbecue post from the journey.

During our journey I constantly was on the lookout for inspiring stories, Aintee’s (her real name is Lisa) was particularly heartwarming. Aintee’s Barbecue consisted of grills lying on top of 55 gallon drums cut in half, set up by the side of a convenience store. Her smile was as bright as the day as she shared with us the unique arrangement that enabled her to run her humble business. 

Lisa and her Aintee’s Barbecue

Lisa, a black woman, became a self-appointed caregiver for James, a white homeless vet. He had been sleeping under a nearby bridge and occasionally mugged until Lisa was moved to intervene. She outfitted her truck so that James could sleep in it. During the day, while Lisa grills and serves ribs to her customers, James picks up trash around the convenience store lot. The appreciative convenience store owner, a Pakistani, allows Lisa to run her business by the side of his building. Bartering outside the grid with racial harmony at its finest!

The recent events sparked by the George Floyd tragedy got me thinking about this lesson in cooperation and compassion between races. This was coupled with another lesson from our experiences in East St. Louis. I chuckle to think at what my father’s reaction would be, had he still been alive.

As a teenager in the late sixties I witnessed the frequent spectacle of my father swearing at the television every time there was coverage of a riot. The target of his wrath were the rioters. Yet as an impressionable and observant lad I noticed my father had only good things to say about every single black person that lived in town. Every …  Single … One.

True, there were very few blacks in our lily white, rural New England town, but whites did not have a similarly perfect record in my father’s estimation of character. This contrast between anonymous stereotypes and local reality left an enduring impression on me. You realize no demographic consists of wholly bad people once you get to know their individuals.

The American Discovery Trail brought us through a few cities. We hiked through dicey neighborhoods in Oakland, Grand Junction, Evansville and DC. The city with the worst reputation was East St. Louis. A mugging of an ADT hiker, widely known to the hiking community, once occurred there at night.

We feared no mugging as we hiked through East St. Louis. We sensibly hiked during the day and at a time of relative calm. One of my slogans in talks across the country was: “Expect trouble, find trouble. Expect kindness, find kindness.” Expecting kindness, that is what we found in East St. Louis, courtesy of Aintee’s Barbecue.

Later on in the day we had an encounter with the police. By this time we were hiking on a state road through an industrial neighborhood, Monsanto Avenue to be precise. As a person that took over 10,000 photos documenting our journey, the good and the bad, I took a picture of the factories around us. Within two minutes a squad car pulled up and two policemen rushed out towards us.

The policemen demanded I delete the photo I just took and looked over my shoulder to make sure I followed their instructions. “Homeland Security” was the reason they offered, even though any motorist could have taken the same picture without getting caught. Regardless of the absurdity of the demand, at no time did I feel threatened by the police.

This now sticks in my mind during this turbulent time: I never felt threatened in a depressed neighborhood. This also was true for every other depressed neighborhood we encountered: Oakland, Grand Junction, Evansville, DC and others. Furthermore, I never felt threatened by the police even in a depressed neighborhood where the color of my skin suggested I did not belong. 

I understand this would not be true for many whites. Many would feel threatened in a depressed neighborhood of a different color. Some may have justification due to a traumatic experience in the past. Many may have fathers who swore at the television without providing the balanced perspective of local reality. All of us are bombarded with messages to encourage fear and anger, which requires great determination to resist.

Fear and anger aborts our empathy. We cannot imagine ourselves in someone else’s condition because we are too absorbed with our own, even when the threat amounts to no more than images on a television screen. Biological/hormonal evidence supports this claim, but I bet you know it to be true from experience. The more fear and anger we have, the less we empathize. A society full of fear and anger is one lacking in empathy.

For my part, my heart aches when I imagine the apprehension any black would feel if a police cruiser suddenly appears and two white officers rush out. Indeed, their apprehension extends to being in a neighborhood of a different color. Personally, I would find life to be a great burden if I was saddled with such pervasive, yet justified, apprehension. My whole life has been a counterpoint to living that way. I bet many whites with a more apprehensive lifestyle than myself would feel the same, if they applied the empathy to understand going through life with constant apprehensions.

I have a tonic for when my heart aches over such thoughts. Instead of images on a television screen, or sound bites from talk show hosts fueling fear and anger, I see images from expecting kindness and finding it all across America. Images such as Lisa of Aintee’s Barbecue, with her big heart and big, bright smile.

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Modes of Affection

Posted on June 5, 2020 by Humanity Hiker

As a citizen from the land of steady habits, I call up the same type of music for each day of the week while I do the early morning chores. On Saturdays I call for the children’s music we played for our kids. This Saturday our favorite musician from that genre, Tom Chapin, was playing.

I change Cindy quickly and easily as she gives no resistance. From the neck down Cindy cannot move her muscles voluntarily. Above the neck she can lift or turn her head. She also can stick her tongue out. She did this as I moved her limbs for physical therapy and my face drew near to hers.

For years I assumed that Cindy sticking her tongue out was only a signal for food, even when there was none around. A few weeks ago I finally wondered if she wanted something else and kissed her.  I quickly discovered that an intimate kiss was precisely what Cindy wanted, perhaps has been wanting for years.

I admit to not feeling comfortable kissing Cindy as she lay helpless physically and verbally. In no way does this feel like “old times” for me. However, since I was Cindy’s first and only boyfriend, there can be only one image in her mind for who is giving her the satisfaction of a kiss. There still must be a vibrant memory, or at least a feeling, of one particular person residing in her mind. That thought is enough for me to always oblige her with a kiss, despite the awkwardness.

I change Cindy’s disposable mattress underpad as the last thing to do in the room before leaving to make breakfast. I used to shift Cindy to a chair in order to do this. Now I use another mode of affection.

I get the new underpad unfolded and within reaching distance on the bed. Then I sit on the swivel chair next to Cindy, at about the same level as the bed. From this perch I easily slide Cindy over and onto my lap, curled up with her right cheek against my chest. I switch out the old pad with the new. Then we spend one or two songs in this position while I rub her back and talk to her.

The song “Grow in Your Own Sweet Way” by Tom Chapin starts to play. This is my favorite of all the children’s songs when our kids were young; the only song that on occasion caused a tear to shed. The title says it all, a song about the innocence and growth of your little loved ones.

Listening to the song invokes bittersweet memories. I realize no time in our lives are as innocent or free of pain as they might seem to be in retrospect. Yet the juxtaposition of holding a declining adult in my lap, instead of a blossoming child, preserves the sweetness of the song without the promise.

Still, I am grateful for our two new modes of affection over the past few weeks. Cindy appears to be grateful as well, her cheek buried into my chest. Ironically, kissing my wife now feels awkward but holding her in my lap like a child brings comfort to us both. Both modes reinforce our love during our final journey together.

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Empathy and Resurrection

Posted on May 9, 2020 by Humanity Hiker

After changing Cindy and going through her physical therapy I put her “dancing shoes” on and swing her legs out of the bed. Her “dancing shoes” are a pair of sandals with rubber soles gripping the floor. Her sandals are not what you would want for actual dancing, but for Cindy they keep her feet in place and I can balance her weight over them. Even so I must plant each foot in the right spot and smoothly lift and transfer her weight from sitting to standing inside my arms.

Normally Cindy is six inches shorter than I am, but she slouches lower even with my support. Still, we are able to sway gently back and forth, this morning to a playlist called “Morning Acoustic.” My computer screen is blank, allowing us to see our reflections on the screen. I do believe this comforts Cindy further. I am grateful her head is so much lower than mine as we “dance;” I can shield my tears from her.

I keep saying there is a difference between depression and sadness. During Easter I saw a post, unfortunately without the foresight to bookmark the source, relating depression to the threat of resurrection. Depression occurs when someone has little hope for or even fears what may lie ahead; they even fear a resurrection. I assure you that is not me.

My life has been a series of welcoming the unknown; that has not changed. There was a time when I doubted my ability to care for Cindy at home until she passes away, but those doubts are gone. I handle her infrequent seizures now with a level head; I believe I can handle any of the unknown ahead and still maintain my health.

My tears are caused by empathy, sadness for Cindy, though not in the present moment. Cindy appears to be content with her face buried into my chest. In fact, I feel better by focusing on how Cindy must be feeling as we “dance.”

The tears are not even for how Cindy generally feels about her current condition. A few years ago a bout of self-awareness might have caused a tear in Cindy. More recently I see occasional looks of bewilderment, sensing that something is not quite right. Yet all along her affliction carries the blessing of not fully realizing the state of her decline.

No, what most often brings about sadness these days is empathy with the “past” Cindy. While I am doing everything I can to make Cindy’s life enjoyable, even succeeding to some extent, I cannot shake the realization that this is not what Cindy would want for herself. If “past” Cindy could see through my present eyes she would be overwhelmed with grief. Feeling this grief from a “past” Cindy causes my tears.

Ironically, I know that much of her grief would be the concern for how her illness was impacting others. I wish my mind could make “past” Cindy see that this has been no great burden to me. I know what must be done to maintain my health and I have been as conscientious about that as with caring for Cindy.

I am not afraid of any form of resurrection, or the unknown, or what life will be after Cindy. This is the ultimate test for why I know I can be sad but not depressed. As we sway together, cheek to chest, I hope the unknown is not burdening her either.

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Joyful Thursday

Posted on May 1, 2020 by Humanity Hiker

Here begins Joyful Thursday, prompted by the fourth movement of the American Discovery symphony, title Joy. As we walked across the country we witnessed much joy in both nature and the people we met along the way. In these troubled times we all could use a little more joy. Joyful Thursday is part of the plan to set up a social, positive and active media platform.

American Discovery uses music, photos, sound effects and interviews to portray this journey across America. Five movements of Beauty, Culture, Kindness, Joy and Journey portray different themes of discovery. As the symphony unfolds an additional theme emerges: a loving couple living life fully despite a tragic illness.

Joy features a woodwind ensemble and classical guitar in a mashup of “Ode to Joy” and “Adore Te.” The full version with vocals also includes the lyrics “Joy of living, joy of life, everywhere there’s joy,” which provide a framework for the movement. The “joy of living” segment corresponds to the changing of seasons over the year; the “joy of life” segment corresponds to the wildlife encountered; and the “everywhere there is joy” segment conveys the joy of friendships made.

Hear American Discovery – Joy

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Kindness Wednesday

Posted on April 22, 2020 by Humanity Hiker

This week begins Kindness Wednesday, the third in a series that so far includes Beautiful Monday and Cultural Tuesday. These are based on the movements of the American Discovery symphony. The goal of this series is to provide a platform for social, positive and active media.

Kindness features a string ensemble to portray good deeds witnessed across America. The movement starts by conveying humanitarian issues America faces, transitions to trail angels encountered during the journey and concludes with a folk song about the many forms of community kindness. At times the instrumentals withdraw to the background as interviews from the journey relate tales of kindness.

This version of Kindness is without the vocals and lyrics that accompany the live version. Here are the lyrics:

Can kindness change the world? Yes it can. Oh yes it can.
Can kindness change the world? You know it can.
It can cure you of a frown, turn your life around.
Can kindness change the world? Yes it can.

Can children change the world? Yes they can. Oh yes they can.
Can kindness change the world? You know they can.
They can show us how to care, with a breath of fresh air.
Can children change the world? Yes they can.

Can a village change the world? Yes it can. Oh yes it can.
Can a village change the world? You know it can.
It can take care of its own, no need to be alone.
Can a village change the world? Yes it can.

Can we all change the world? Yes we can. Oh yes we can.
Can we all change the world? You know we can.
We can feel the pain of others, treat them like our brothers.
Can we all change the world? Yes we can.

You will find American Discovery – Kindness inspiring. Here it is:

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Cultural Tuesday

Posted on April 14, 2020 by Humanity Hiker

Tuesday content will be set aside for culture, based on the movements of the American Discovery Symphony. Others will contribute as well, first on the Humanity Hiker Facebook Page, later on this blog when set up for that. Here is a recap of the journey, symphony and movement behind Cultural Tuesday.

When Cindy lost her job because of early cognitive decline, we resolved to reboot her life with a long distance hike along the American Discovery Trail. We walked over 5,000 miles from the Pacific coast back home to Connecticut, over a full leap year of 366 days. The journey lived up to the name of the trail we followed; we discovered America in ways few people experience.

American Discovery uses music, photos, sound effects and interviews to portray this journey across America. Five movements of Beauty, Culture, Kindness, Joy and Journey portray different themes of discovery. As the symphony unfolds an additional theme emerges: a loving couple living life fully despite a tragic illness.

Culture features an acoustic rock ensemble to portray the different rhythms of culture across America. The movement transitions through themes of railroads, agriculture, cities, small towns, rivers and rail trails with differences in tempo and melodies. Witness the grand mosaic of cultural diversity across America taking shape. Here is the orchestrated version of American Discovery – Culture.

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Beautiful Monday

Posted on April 6, 2020 by Humanity Hiker

We need ways to uplift our lives during these trying times. My symphony, American Discovery, portrays five themes of discovery that might infuse a little beauty, culture, kindness, joy and adventure into your lives, even as you stay home. Mondays will be the day for Beauty.

I recently finished what I consider to be the final draft of the first movement, American Discovery – Beauty. This final version adds two instruments to the previous version I shared, cornet and bass trombone. The music portion starts at the 1:30 mark if you want to skip the narrative.

In future weeks I will introduce the other movements. For example, next week I will start Cultural Tuesday. Only the last movement awaits full orchestration as of right now. Will it be ready in a month?

The idea eventually is to encourage you all to contribute your own photos or stories on Beautiful Monday, Cultural Tuesdays etc. Initially these contributions will be solicited on the Humanity Hiker Facebook page, as this blog is not set up for that yet. Someday it will be. That is part of my ongoing plan for my next phase of life.

I now present to you Beautiful Monday.

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Couch Potato Counseling

Posted on March 28, 2020 by Humanity Hiker

We have been “social distancing” now for over three years, since the time that Cindy no longer could walk. Given her overall health and will to live, we could be social distancing even after restrictions are lifted. Just when I was running out of inspiring or informative material to share about caregiving and brain health, here comes this golden opportunity to offer my counsel as an expert couch potato.

First, a precaution. Folks, there is a downside to becoming accomplished at sitting in front of a television. In this time when the health of your immune systems becomes critical, being a couch potato can be very bad for your health. I feel like I should add a warning “don’t try this at home,” but that does not quite fit here.

As a nation this is something for which we need to be particularly mindful. The last I knew we were 43rd in the world in life expectancy. When I went to double check on that statistic I discovered I am wrong, we are 46th. When I first researched this statistic more than a decade ago, as part of researching how our social systems worked, we were 35th. An article in Lancet projects the USA to be in the sixties for life expectancy by the year 2040, based on United Nations data. We are by far the worst of any developed country, even worse than some less developed countries, and trending down.

I am not aware of world rankings for immune systems, but there is other data to suggest this is correlated to our life expectancy. Measles are ten to a hundred times more fatal in this country, depending on the dataset, than they are to someone in Japan. Not all infectious diseases are the same, but that provides a good reason and a projection that our younger population is likely to be affected more by COVID-19 than any other developed country. If our immune systems are lower, our fatality rate will be higher.

One of the major factors undermining the immune systems in this country is stress. Certainly economic stress has risen with five decades of increasing wealth disparity, but we also tend to become stressed over a number of divisive issues. This includes tackling a pandemic, or acknowledging that one exists. Other factors contributing to a weakened immune system are being sedentary and socially isolated. The potential solution to COVID-19 is also one of this country’s biggest problems.

That is why I caution, if you join me in a couch potato revelry, that you still go for nature walks if you can, the best kind of walk for your health. I also suggest you snuggle with whomever you are quarantined. Never mind if there is awkwardness or you fear the wrong message is being sent, agree that this is best for your health and put your arm around the person sitting next to you on the couch.

Our preferred social distancing activity.

Regardless of your normal preferences, choose shows more likely to release dopamine than adrenaline. Adrenaline and cortisol are our fight or flight hormones, very useful in small doses, but toxic in quantity. Dopamine and oxytocin are the hormones you want to encourage right now to boost your immune system. Go ahead, watch a chick flick! Or an inspirational story! No one needs to know.

Being a couch potato also might alleviate your stress by distracting you from the antisocial, stressful combativeness of divisive issues on “social” media. I am guilty of this as well. As I share with you my couch potato expertise, and as I prepare for an eventual new phase of life, I have ideas for changing this.

On Facebook I am starting a Couch Potato Corner geared mainly towards trivia, such as what show has won the most Emmys? Polls such as best sitcom romance will be solicited. I am working out some other activities as well. Meanwhile, this blog is not designed for social media activity and I will be fixing that. I am looking into BuddyPress as a companion to the WordPress I use. I welcome anyone with BuddyPress experience to give me some tips.

When converted, my blog will not be a social media platform, at least not like the ones that so often become antisocial platforms. Instead I aim for a social, positive and active media platform. You know, like the main ingredients for good brain health. One idea is to use the symphony I am composing about American Discovery as a starting point for people sharing the beauty, culture, kindness and joy of their own personal journeys.

In addition to this blog, I am working on a series of writings that provide a model for finding our way through the complexities of society, based on a destination of combined brain and social health. I hope to make the esoteric yet practical readable. I include approaches towards knowledge, society, freedom, addiction and wisdom that will assist on a journey towards wellness.

Why not assist me with these writings? Help me make the esoteric yet practical for wellness readable by reviewing my writings on finding our way. Just send me a message and I will provide a copy of the first essay to read. If that engages you I will send you the next one.

After all, reading is a respectable activity for a couch potato.

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Shared Memories

Posted on February 28, 2020 by Humanity Hiker

Last week I made a Facebook announcement for Cindy’s birthday, calling her my Expedition Woman. I am proud of Cindy, a woman who has hiked thousands of long distance miles, but that pales in comparison to the pride Cindy has in herself. An anecdote I frequently share with friends and family underscores this.

We were on a practice hike for hiking the Pacific Crest Trail with our daughter Charissa. Cindy now was diagnosed with Alzheimer’s and, though she could still hike, she needed to be assisted with everything else, including nature breaks. Unlike our previous hike of the American Discovery Trail, Cindy would not be getting better during our upcoming journey.

As we were setting up camp I made the mistake saying Charissa is the Expedition Woman now. The dirty look Cindy gave me made clear that SHE alone held that title. I never again made the mistake of calling anyone else an Expedition Woman in her presence.

After I posted the birthday wish to “my Expedition Woman” on Facebook I got to thinking about why her reputation was important to both of us? The answer lies in the experiences shared.

Experiences like hiking an unfinished trail for months, applying our map and compass skills frequently.

Experiences like camping on a snowfield above 10,000 feet in six below weather.

Experiences like hiking 25 miles in the desert with the temperature climbing as high as 130 degrees.

Experiences like many thirty plus mile days wearing 40-60 pound backpacks.

Experiences like going over two weeks in between supply stops.

Experiences like being sheltered from rainstorms, windstorms, dust storms and blizzards in our tent.

Experiences like crouching on our sleeping pad for insulation in the middle of an exposed desert as lightning strikes around us.

Experiences like the miles upon miles upon miles of conversations and games played as we distracted our minds from hiking over nondescript terrain.

Experiences like the miles upon miles upon miles of breathtaking beauty making music to our souls in harmony.

Experiences like the thrill of treacherous water crossings, hazardous snowfields and wet, rocky descents.

Experiences like the peace of forest streams, alpine lakes and brilliant sunsets.

Experiences like hiking 100 miles around one of the most beautiful mountains in the country with our three children. 

Experiences like pedicab rides and adult stroller jaunts of up to ten miles no matter what my Expedition Woman’s condition is, because that is what we both need.

As I recalled all these rich memories of shared experiences I realized the delight in calling Cindy my Expedition Woman was not about pride. I call her that as a reminder of our life together.

Happy 60th to my Expedition Woman!

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