Cindy and I wanted this blog to inform and inspire others who may find themselves in a similar situation. I never considered that to be the telling of a love story, though a few readers commented they have that impression. I never thought of ourselves as fitting the dramatic or romantic mold of the lovers in The Titanic; we are more like Jim and Pam from The Office. Yet I concede our story reveals lasting love.
Sixteen years into Cindy’s care, I find less informative or inspiring aspects of that care to write about. Now I intend to deliberately share more of our “love story.” Occasional vignettes will share my experiences and feelings in the moment. I also will fill in some of the back story of our lasting love.
Sometimes we become attached to places like we do with people. Lasting love for both a place and a person involves caring, responsibility and loyalty. A shared sense of place strengthens the bond with a loved one. Some future posts will flesh out our sense of place for both our home town and wilderness trails.
We started living in the house where I was raised to take care of my Mom who had dementia. We stayed here because of Cindy’s choice, not mine. As a nurse Cindy could have found employment anywhere. As a trained GIS specialist and program researcher with four degrees I could have found more lucrative employment elsewhere. We stayed because of the humanity, beauty and culture embedded in the pastoral village of Norfolk, Connecticut. Her love for this place is true, as is mine. I hope some of my future posts convincingly reflects this love.
This is the last of my cornerstone content posts. To recap, they were about the five major themes of this blog: Journeying, Humanity, Brain Health, Home Care Journal and Lasting Love. The next post will be in the New Year, following the plan I presented with the cornerstone content.
Please spread the word to anyone who might be interested in one of these themes. Encourage them to subscribe, as well as to share and like posts. Help me spread the content to those who will benefit.
For a few years I resisted using the words caregiver or caregiving on this blog. In my mind I simply was helping my best friend. As I came to terms with offering caregiver advice, I still struggled with what that category should be called. Recently I came across the term “care partners” in an AARP article. I immediately thought: “That’s it!” This home care journal is about two care partners, not one caregiver.
“Caregiver” sounds so one-sided to me. While this might apply for a person being hired to provide care, I do not feel this correctly describes my relationship with Cindy. Throughout our marriage we cared for each other without really thinking about that as caring. She helped me with this, supported me with that, and I did the same for her. You know, like best friends do.
I consider us still to be partners while realizing that life is not fair. No one should keep score in regards to who goes last and/or longest as care partners. Or, at the least, best friends should not. Plus I view life being unfair mainly to Cindy, not me. I just have to learn and grow in different ways than I had planned.
In a sense, we still are partnering during Cindy’s final stage of early onset Alzheimer’s. Though incapable of communicating, she continues to demonstrate an incredible will to live. How do you think that makes me feel? Like I make sticking around worth it for her. To this day I still view what I do as easy, because of the type of “help” my partner provides.
While new “care partner” insights or vignettes that differ from the previous thousand posts may be scarce, I will continue using this website as my home care journal. If you appreciate them, please subscribe, share or like. Ask a friend to do the same.
After Cindy’s diagnosis of early onset Alzheimer’s in September of 2013, we decided to share that part of our journey on our blog. We knew that lifestyle factors during our American Discovery Trail journey helped reversed Cindy’s cognitive decline. Unfortunately, she declined again after the journey. I set Google Alerts to “brain health” and “Alzheimer’s” in order to provide useful information on brain health and lifestyle factors.
Right from the start there was much chaff to sift from the wheat. The “Alzheimer’s” alerts listed articles mainly intended for an investment audience. In addition to the fact that I am not an investor, my interest in combating Alzheimer’s focused mainly on “Living Well with Adversity.” My announcement page featured that title on this website at the time. Lifestyle factors were my focus, not the potential investment profits from medical cures.
The “brain health” alerts featured more university research, less drug trials by pharmaceuticals. Press releases aimed to simply report on the research and legitimize the university researchers conducting them. A variety of brain health matters in addition to dementia were covered, ranging from genetic to environmental factors. These tangents occasionally provided useful information as well.
Early on I created a few brain health features compiled from research articles. Over time noteworthy new information became scarce. One month an article would be about exercise boosting brain health, as would be the case for the next month and the month after that. The research varied in terms of type of exercise, workout intensity and length, and the time spent. The articles featured a common subtext of finding the minimum necessary for a society too busy doing other things.
Then there are the mice. Lots of mice studies! All touting the potential of some new drug, treatment or environmental condition … as long as we find a way to transfer the findings to humans. Their promises never being met provided a lesson that maybe beta amyloid plaques are not the ultimate problem.
I do not wish to sound like a total cynic about cures for Alzheimer’s and dementia that involve profits. I have encountered some interesting research related to mRNA and how the immune system functions in relation to brain cells. Yet I still apprehend the profit angle and a subtext of what can be done so lifestyles do not have to change.
I understand that at any moment in time there are people new to familiarizing themselves with brain health. To that end I will continue to receive Google Alerts and link or embed articles for others to read. I may include research into medical treatments, but no mice studies. The previous decades of mice studies provided enough rabbit holes.
The tagline for this website … “Love kindness. Build community. Believe in humanity.” … expresses my humanitarian creed. I developed the creed for our American Discovery Trail walk across the country from May 2011 – May 2012. Since we were keeping Cindy’s cognitive decline at the time private, observing and reporting on kindness and community became our public mission.
By the time I revealed Cindy’s condition on this website I had learned both kindness and community benefited brain health. This calls for continued emphasis on kindness, community and humanity as they relate to other major themes. I also set Google Alerts to “trail magic” and “trail angels” for the humanitarian experiences of other hikers.
Meanwhile, the humanitarian creed will be a major focus of my other website, The Unenlightened Wisdom Project: Journeying from Brain Health to Democracy. If you subscribe to that website you can download the White Paper, with cartoons provided by the Speed Bump cartoonist Dave Coverly. The White Paper provides the road map for the ten year project.
Meanwhile, I have more info about the timeshare deal I am offering. The precise value and vacation depends on the choice of room type, location and time of year, averaging around $2500. This amounts to a %40 off vacation deal. Spread the word to someone who might be interested. Thanks!
As always, please subscribe, like and share. Ask one friend to do likewise.
After a frustrating year in which neither the coverage nor the transportation I had expected fell into place, things are looking up. The most important and exciting thing I plan to do with my improving situation is to give presentations titled “Music and Readings for Humanity,” drawing upon both essays I am writing and music I composed (along with some covers).
The only problem now is that December and January are the costliest months of the year. In addition to Christmas and taxes, I have the maintenance and club fees for the timeshare we own. Now I face one more additional cost of purchasing the transportation for my presentation goals (and let’s face it, some recreational endeavors as well).
I have not been able to use the timeshare the last ten years for myself, giving it instead to family members, or twice losing the availability. “Why not,” I say to myself now, “trade use of the timeshare next year for the cost of maintenance and club fees?”
The cost amounts to $1500. The benefit depends upon where, when and for how many. The locations where the timeshare can be used stretches from the Caribbean to Hawaii, with additional locations in South Carolina, Florida, Arizona, Colorado and California. The timeshare can be a studio, one bedroom (good for four), or two bedroom (good for six). In a prime location like Hawaii, a two bedroom likely can only be for one week during off peak. For a studio and/or less than prime location like Myrtle Beach, the vacation can be for two weeks. Considering that all of these timeshare resorts have full kitchens and other amenities, the value significantly exceeds the cost of $1500.
The time, place and type of timeshare must fall within next year, 2026. Let’s make a deal that provides you a vacation for below normal cost, while helping me acquire the transportation needed for humanitarian and recreational ends. Leave a comment if interested, or if you know someone who would be.
This website began with documenting a 5,000 mile hike along the American Discovery Trail, a year long journey. Three years later I reported on journeying along Pacific Crest Trail to earn Cindy the Triple Crown of long distance hiking. Instead, Cindy likely became the only person awarded an Honorary Triple Crown. Ten years after our ADT journey the website retold our those experiences, adding the perspective of her cognitive decline.
Regarding the value of journeys, here is an excerpt from an essay I wrote recently*:
For years I compared these journeys to a way of life for inquiring minds who were curious or mistaken, filled with the rewards, challenges and routines that all ways of life involve. Now I am struck by how life resembles a journey. With both our lives and journeys we seek to explore, learn and grow along the way.
My long distance journeys brought me into frequent contact with strangers who turned into instant friends. The kindness strangers extended to me, the kindness communities provided to their own and the belonging I felt with other long distance hikers during these journeys shaped the mantra that guides my journey of life:
“Love kindness. Build community. Believe in humanity.”
Cindy and I once planned to hike continuously around the world. Even though that is no longer an option I still hope to go on long distance journeys. If life continues to make that impossible, then I have a plan for doing so vicariously. Please provide suggestions for rural or beautiful places to go during a hike around the world. In response I will research the suggestions and post about the beauty, culture, kindness and joy to be discovered. I hope someday to used your suggestions and report on those experiences. Just leave your suggestion as a comment.
My vicarious journeying will extend to following the other humanity hiker. Unfortunately, his last Instagram post was 36 weeks ago, so I am not sure if he intends to complete his journey. Maybe sharing some of his past posts on here will provide an incentive to resume his journey. I also will check in occasionally on the Trail Journals website.
Journeying, Past and Future is the first of a series of articles explaining the major themes for this website. I will finish this series before the New Year and then embark on the “Future” posts for the various themes moving forward. If you look forward to posts with this journeying theme, please subscribe if you have not done so, or encourage a friend to subscribe as well. Liking and sharing posts would be a great help to me.
I am still working out the coverage kinks as I look forward to a time when I can post regularly on here and even go out to do presentations. The first two-thirds of this year was spent working out the bureaucracy kinks, seemingly the full last third will be spent obtaining the coverage. I have not exhausted all my options yet, so I remain hopeful.
In the meantime my plan is to squeeze out posts on the five major themes of this website, which I listed in the post The Other Humanity Hiker (since edited, the one advantage of “treading water” so long). To recap, those themes are Journeying, Humanity, Brain Health, Care Partners and True Love. These next five posts will cover how each theme was covered in the past and will be covered in the future.
I will be going over all my previous posts to double check how they fit into each of these main themes, along with how well they fit into search engine criteria and how well they were received. Since there are over 900 posts I assume this will take at least one year, but I will continue to make new posts as well … as long as I have adequate coverage. Besides making this website more visible this process will also lead to publishing a book in 2027 … if I have adequate coverage. As of now I plan to make each of the major themes a section of the book.
Coming up next: Journeying, Past and Future. Please subscribe to this blog if you haven’t yet; encourage a friend to subscribe if you already have. Like, comment and share posts to show which ones you appreciate most, which will help my visibility and indicate what should go into the book. I truly believe people can benefit from our experiences being shared. Let me know if you feel that way as well.
At the beginning of the year I laid out an optimistic ten year vision for my future as a permanent caregiver. The vision was predicated on Cindy turning 65 in February, making her eligible for the state’s Home Elderly Care program. The amount of coverage I could have expands dramatically with this change, allowing me to plan and engage in a variety of projects for the next ten years.
The best laid plans often go astray. Throughout this year I actually averaged less coverage than I had in 2024, due to too many cosmic tricks being played. Perhaps I should have expected that bureaucratic channels meant Cindy’s new eligibility would not take effect until August. Unexpected were complications with existing home health aides that actually reduced our coverage for the year.
In late August I finally had expanded coverage which led me to post “Full Steam Ahead!” Alas, that coverage lasted for only one month and I have yet to find replacements due to a wide variety of “tricks” continuing to be played. I learned one lesson from this that might prove helpful when looking to hire home health aides.
I do not need full time help for my particular situation, but only being able to offer a part time position creates a problem for aides that work multiple jobs to pay their bills. We are likely to be the farthest commute for most of them, which means we are the logical choice for an aide to quit first when they need to reduce their workload for their family … or sanity. I anticipated that offering full time hours to an aide would provide the incentive needed to reduce attrition. To sweeten the deal I used a payroll provider to set a higher hourly pay rate than set by health aide agencies.
Unfortunately, my incentives do not include a benefits package. Aides that worked here part time would have to obtain health benefits through other employment. Now if someone works here full time they will not work enough elsewhere to get health benefits. The answer may be to go through a healthcare agency after all. That is what I am working on now.
In the meantime I could use a few treats. I can think of none better than new subscribers to this website. Each subscriber provides a little psychological treat to me while making the site more visible to search engines. As awareness for my caregiving and journeying content grows the demand increases for my writings, music and presentations. Then some day, some day, I will have enough coverage to get out and give presentations with humanitarian and caregiver content.
If you already have subscribed, please encourage one friend to do the same. Also like and share the blog posts you find worthy. Right now I could really use some more treats.
If you subscribed to the blog after August, you should have received a confirmation email that would have then allowed you to download the song Humility, Faith, Courage. By confirming you also started receiving notifications of the posts I have made recently. Last week I completed the process of adding past subscribers to the new subscriber platform. Previous subscribers should now get notifications of posts, including this one. What I am unsure about is whether you also received a confirmation email that provided you the opportunity to download that digital song.
One way to find out is for you to comment to let me know whether you received that confirmation email. If many have not I will send out an email to all subscribers allowing you to make that download. Receiving emails for anything besides post notifications will not be common practice; I do not want to flood your email box like a political party during elections! This blanket email happens to be the only way I know at present to make sure that subscribers past and present have access to the download.
Speaking of commenting, this helps the visibility of the blog, as does hitting the like or share buttons. To reward subscribers who also comment I will provide another digital download via email, this one for the song American Dream. Since there are over 1,000 comments to sort through this will take some time, but if my coverage shortage gets rectified soon this should be completed by the end of the year. If you have not commented before, just letting me know now that you are getting post notifications and the opportunity to download Humility, Faith, Courage will get you on the list.
From the Music/Bards of Balance menu you can listen to these and other songs. I hope you enjoy them!
If you have not yet subscribe please do so. Like and share content. Encourage one friend to do the same. Help me reach out to other journeyers and caregivers.
As I looked over the problematic path, assessing whether I should go that way with Cindy in the adult stroller, I involuntarily chuckled out loud. “Of course we should not go this way,” was my assessment. “But of course we will,” was the thought that prompted amusement.
When we first acquired the adult stroller for Cindy I occasionally ventured onto woods roads unfit for vehicular travel. We went on the woods road that ran along the Bobolink Preserve. We went on the woods road that climbed the back of Haystack Mountain up to the tower on top. We went on the woods road that went up Beech Hill. We went on each of these woods roads only once, because once was quite enough for both the effort and nerves required.
Six years later, the string of mild autumn days and recent setbacks in coverage created a desire to get Cindy off the beaten path like the good ol’ days. Her and me against the world, gaining peace and solace in the surroundings we loved best. We entered Barbour Woods from the Lovers Lane trailhead and were soon rewarded by a woodsy scene reminiscent of a Robert Frost poem.
The woods road runs from Lovers Lane to Shepherd Road, the latter trailhead located only a few hundred yards from our house, but I intended to take the path only up to the top of Beech Hill and back down. Blocking the way to Lovers Lane for an adult stroller was a fallen stone bridge over a forest stream. The alternate aluminum bridge and beaten path back to the woods road were fine for foot traffic, but dicey for pushing an adult stroller.
After arriving at Beech Hill I decided to go on further until the brook crossing. The leaves had not reached their peak fall colors, but they were on their way. We appeared to be the only people out in these woods on this pleasant afternoon, providing the same feeling of solitude Cindy and I often experienced in the midst of a wilderness landscape. The hilly return trip also would give me a little extra exercise. We had plenty of time on our hands; why not prolong our woods outing by turning back at the brook?
Once we arrived at the brook I could see the aluminum bridge was wide enough for the stroller and the small steps on either side of the bridge would be easy to roll over as well. On the other side of the bridge loomed a choice between near insurmountable short steepness for a stroller or a sloped switchback that could tilt the stroller over. I left Cindy on the Beech Hill side of the brook to take a closer look at the options.
I ruled out the short steep route immediately, then hovered near the sloped switchback. “Yup,” I thought, “the path is sloped enough by the retaining wall to tip the stroller over if I am not careful.” Then it dawned on me that my choice between going back the way we came or risking the switchback had been predetermined before I made my assessment. I found myself chuckling out loud over this realization about myself. Of course I was going to make the risky choice regardless of what my analytical mind had to say about the matter. Just like I was going to take Cindy on a 5,000 mile walk across the country when she first experience cognitive decline.
I indeed struggled to prevent the stroller from tipping over as we went up the path along the wall, forcing me to move the stroller from the downward side rather than from behind, but I succeeded. The satisfaction gained from not having to backtrack, something no self-respecting long distance hiker likes to do, added to the contentment of our woods road journey on a spectacular fall day. In looking back I am reminded of the saying:
“Boldness has magic, genius and power.”
For years I thought that saying was attributed to Goethe. Then research suggested maybe Sir Edmund Hillary? More research in turn suggested perhaps a companion of Hillary’s. At this point I have adopted the saying as my own.
Boldness sharpens the mind, a distinction between that and foolishness. Risking the switchback sharpened my mind and nerves for the task. Risking the path again next year likely would have the same result. The real risk comes if I turned that route into a habitual outing. Over time the perceived risk would lessen, as would the sharpness of the mind. With the “magic, genius and power gone,” the boldness then transitions to foolishness. I would not have succeeded as a journeyer or a caregiver without boldness; so far I have stopped short of foolishness … usually.
Speaking of boldness, I am boldly attempting to broaden my outreach even as my caregiver journey appears permanent, all the bolder from the continuing coverage struggles I encounter along with rebuilding the subscriber base from scratch. Please assist me with this by subscribing to this website. Like and share content. Encourage at least one friend to do the same. Help me inspire other caregivers and journeyers.
