Stages of Decline series outline: fourth installment. After these outlines are posted I will provide video podcasts of the same themes in a more entertaining and informational format. Please subscribe to this blog to be alerted to each post in the series, and to help generate search engine publicity.
People associate dementia mainly with cognitive decline throughout the affliction, this stage corresponds to when that decline becomes irreversible. The following bullet points reveal the “Trials” that signaled Cindy’s cognitive decline would be permanent.
A year after our hike across the country we still did not know the cause of decline.
I left an important decision up to Cindy that she was not capable of making.
In an effort to give Cindy more independence her condition worsened.
Failing badly on a cognitive test for disability income devastated Cindy.
Cindy was diagnosed with Alzheimer’s a month after qualifying for disability income.
The lesson I learned from these “Trials” is to assume the worst and become the decision maker for someone whose cognitive decline is not improving. The next installment in the series will be “Cognitive Decline – The Tribulations.” The video podcast of this installment will be posted in a few months. Please subscribe.
This is the third outline for the Stages of Decline series. Our experiences as a dementia patient and caregiver spouse are condensed into bullet points to provide helpful insights for others who might find themselves in a similar situation. After presenting outlines for the twelve themes of the series, video podcasts will then cover each theme in a more entertaining and informational format. Please subscribe to this blog to be alerted to each post in the series, and to help generate search engine publicity.
People naturally think that early onset dementia begins with cognitive decline, but there are earlier warning signs in regards to behavioral changes in how people respond to stress. These “Tribulations” bullet points reveal how Cindy’s decline resumed after the walk across the country was over.
Cindy’s “Triumphs” from the walk across America ended with the “Tribulation” of Lyme disease.
Despite chronic stress being eliminated, no further cognitive improvement occurred.
Cindy experienced occasional heartbreaks due to her cognitive decline.
Cindy had few opportunities to socialize.
Cindy had trouble with daily living tasks.
I experienced the heartbreak of false hope.
The most important lesson from these “Tribulations” bullet points is that early onset dementia cannot be permanently cured, but rather needs to be permanently prevented through lifestyle factors. The next installment in the series will be “Cognitive Decline – The Trials.” The video podcast of this installment will be posted in a few months. Please subscribe.
This is the second outline for the Stages of Decline series. Our experiences as a dementia patient and caregiver spouse are condensed into bullet points to provide helpful insights for others who might find themselves in a similar situation. After presenting outlines for the twelve themes of the series, video podcasts will then cover each theme in a more entertaining and informational format. Please subscribe to this blog to be alerted to each post in the series, and to help generate search engine publicity.
People naturally think that early onset dementia begins with cognitive decline, but there are earlier warning signs in regards to behavioral changes in how people respond to stress. These “Triumphs” bullet points reveal that the early cognitive decline which occurs during the behavioral decline stage can be reversed.
We assumed Cindy had an anxiety disorder from too much stress.
We turned to our passion of long distance hiking for a cure.
We chose the American Discovery Trail for its length and towns.
The journey provided lifestyle factors that benefit brain health.
Cindy improved at doing daily tasks, recalling events and being social.
Cindy became optimistic about her future.
The most important lesson from these “Triumphs” bullet points is that dementia during the first stage of decline can be reversed, though a comprehensive shift in lifestyle factors may be required. The next installment in the series will be “Behavioral Decline – Tribulations.” The video podcast of this installment will be posted in a few months. Please subscribe.
This is the first outline for the Stages of Decline series. Our experiences as a dementia patient and caregiver spouse are condensed into bullet points to provide helpful insights. After presenting outlines for the twelve themes of the series, video podcasts will then cover each theme in a more entertaining and informational format. Please subscribe to this blog to be alerted to each post and to help generate search engine publicity for the series.
People naturally think that early onset dementia begins with cognitive decline, but there are earlier warning signs in regards to behavioral changes in how people respond to stress. These TRIALS bullet points covers the unfortunate behavioral changes and conditions that in hindsight signaled the beginning of early onset.
Work conditions created chronic stress for Cindy.
Personal events added a tipping point to chronic stress.
Cindy’s personality was not conducive to handling stress.
Cindy likely has a genetic predisposition for dementia as well, causing early onset.
Doctors misdiagnosed Cindy at the start, claiming she was too young.
One diagnosis misjudged Cindy’s personality and possibly made things worse.
The most important lesson from these bullet points is to identify and minimize the stress in your life. How you or a loved one is handling stress may be an indicator of cognitive decline around the corner. The next installment in the series will be “Behavioral Decline – The Triumphs.” The video podcast of this installment will be posted in a few months. Please subscribe.
During 2023 I plan to take up video casting as a project to keep me sane, starting with a series on different stages of dementia. Each stage will be broken into three sections corresponding to Trials, Triumphs and Tribulations. Until I am up and running with doing videos I first will run through a “Cliff Notes” version of the series with regular blog posts. Here is a brief outline of the upcoming series:
STAGES OF DECLINE OUTLINE
Behavioral Decline
Trials – The problems of stress
Triumphs – Our passion reduces stress and reverses cognitive decline
Tribulations – Cognitive decline resumed
Cognitive Decline
Trials – The problems of an Alzheimer’s diagnosis
Triumphs – Creating and pursuing our bucket list
Tribulations – The distance Cindy can walk steadily declines
Physical Decline
Trials – The problems of immobility
Triumphs – Creative means of getting Cindy outside
Tribulations – The decline into helplessness
Emotional Decline
Trials – The problems of hospice care
Triumphs – Preservation of the will to live in hospice care
Tribulations – The famous smile fades away
By the time I am done with the blog outline I should be ready to go through the series again with video presentations. This material will help with both a documentary and a book planned for the future. After the Stages of Decline series I will move on to other video projects, such as one for planning future journeys.
If you are interested in the series please subscribe to the blog and/or like the Humanity Hiker Facebook page. The recognition will help me out.
In 2022 I blogged about our 2011-2012 walk across the country again, this time sharing the adventure while acknowledging Cindy’s cognitive decline as a motivating factor for the journey. That ended in June and I submitted less than a handful of posts since then, claiming there was little new in our situation to share. Another reason was I had little time to write because my coverage had become sparse. I intend to reactivate this blog for 2023 with two main goals.
One is a series that elaborates on the stages of decline that occurs with dementia, hopefully with a post every month. I would like to use this series as a springboard to get into vidcasting. The information may also provide the foundation for a documentary that a filmmaker is working on.
The other goal is to share with you the logistical planning of future journeys I hope to take. One type of journey will be Pedicab Pilgrimages, with plans to provide rides to mobility challenged children, such as at children’s hospitals. The other type of journey will involve hikes in other parts of the world, encouraging others to: “Love kindness. Build community. Believe in Humanity.” I intend to make the journey planning interactive, providing readers the ability to offer suggestions and help shape the course and activities of journeys.
Photo by Jordan Rose Lee
A blogger is supposed to post 2-4 times a week. That will not happen as I continue my current caregiver journey. While I hope to have more coverage for Cindy and more time for myself in 2023, I anticipate posting at a rate more like 2-4 times a month.
The topic of nursing homes has been broached in the Sinclair family, with suggestions that I should be open to the idea of placing Cindy in one. As an important topic for almost every family at some point I share my own insights for others to consider.
My mother already had the beginnings of dementia when my father passed away. I recall sitting in Mom’s bedroom while she showed me brochures of nursing homes where she could go. With my wedding to Cindy just a few weeks away I told Mom I did not need to see the brochures; we would be taking care of her.
Mom had always been the calm, logical parent, abundant with goodwill but sparse with physical affection. When I told her we would not be sending her to a home she threw her arms around me and drew my head to her bosom in a scene I will never forget. For the sake of others she wanted to go into a home, but what she really wanted, what most people want, is to be in a place they love with people they love.
My own version of sparing loved ones the need to take care of me has been a plan to hike off into the sunset once I get to a certain point of decline. Maybe if I get into my nineties I will start to climb mountains like Denali solo. I came up with this plan decades ago, upon learning this was common practice for nomadic tribes. Yet my resolution to date have been made by a person with sound mind and body; will that still be my desire as I grow old and feeble?
Cindy and I never discussed the topic of nursing homes for either of us. After we came home from her official diagnosis of Alzheimer’s she went up into the attic to sort out which of her things she wanted to go to each daughter after she passed away, a task that proved too formidable for her state of cognitive decline. We made out a bucket list of things to do while she still could appreciate them, but neither of us mentioned assisted living or nursing homes.
On a couple of occasions Cindy encouraged me to get a mistress, which was the extent of her voiced opinion about what I should do about her decline. I take that to mean she wants me around but I should do what I need to do to live my life well and be happy. Is that not what we all wish in regards to our loved ones?
Photo from Tammy Johnson
We eventually placed my Mom in a nursing home, 4 ½ years after she rejoiced at being told we would take care of her in her own home. She stopped eating and we took heroic steps to keep her alive, which first meant a trip to the hospital and then the nursing home, where she passed away six months later. Raising our young children took precedence and, after all, she had given her blessing to being placed in a nursing home.
With the advantage of hindsight I would have kept Mom home to let her pass away sooner under her terms, in her home surrounded by loved ones. That is now my plan for Cindy if and when she stops eating. As long as she eats well I assume she enjoys life enough to continue living. Once she stops eating that tells me that not even her home and husband are making a difference. I suspect watching her final days will then be difficult for me, but at least those final days should be few.
The topic of nursing homes came up because of my recent frustrations over lack of coverage. In my last blog post I shared that I thought I was about to have the most coverage since I became a caregiver. That fell apart instead and some weeks I have had less than five hours coverage. Coverage goes in cycles, but less than ten hours per week is not enough to sustain me for long.
Going from assumed most to actual least amount of coverage taxes my patience, and I am now resolved that my next “project” will be to use whatever means to get at least twenty hours of reliable long term coverage, applying the same determination to that as I did to composing the American Discovery Symphony. For only after I get such coverage can I work on other projects and live my life as Cindy would have wanted.
Meanwhile, I have instructed that if my family detects ongoing depression, rather than situational frustration, then they should do an intervention to remove my caregiver duties, if I am not astute enough to do so myself. This experience has made me a student of brain health; I know too well that depression as a caregiver increases my own likelihood of getting dementia by sixfold. I want to uphold Cindy’s wishes to always be there, but going down the path of depression means doom for us both.
Do not worry. I guarantee depression will not find me if I find adequate coverage. For the actual caring of Cindy gives me no problem whatsoever, being her nurturer and protector actually uplifts me. I just need the time to live my life for such things as major projects … and perhaps even to date.
There are many variables involved with the twilight of a life, some that would remain hidden without discussion, such as my Mom’s hidden wishes that day she hugged me. My own preference is to pass away peacefully in the middle of some beautiful wilderness, but I am not the only person affected by my passing and that may not be what they wish. Towards the end I do want to become an undue burden in someone’s care, nor do I want to deprive them of that care should they find that rewarding. I hope sharing this prompts others to consider and discuss with their partners about such matters.
This blog began with our walk across the country from 2011-2012, revisiting that journey again last year. In between I reported on our hike of the PCT and how Cindy and I have done our best to live well despite the adversity we face. Lately I claimed there remains little for me to report on in terms of a caregiver in the face of Cindy’s slow, incremental decline, nor can I report on current journeys that reinforce the creed of “Love kindness. Build community. Believe in Humanity.”
Caregiver assistance comes and goes in cycles. From the spring until now I had very little coverage, making it very hard for me to get any new projects up and running. That appears to be changing soon as I found a new PCA who wants plenty of hours and can be flexible with when they occur. With the promise of more free time I find that, come to think of it, there are still things to share about my final journey with Cindy.
I can detail further the four stages of decline I described in this blog four years ago. Someone is now using these four stages as a framework for filming a documentary about us. Going into depth about those stages on this blog provides useful information to readers while also helping the documentary. I plan also to review some tips for caregivers, and provide a caregiver’s perspective on some other things as well.
While I still cannot go traipsing off on journeys, I can dream, turn those dreams into plans, turn those plans into logistics and report on those logistics. In fact, perhaps I can do this interactively, inviting readers to help with those plans, particularly if they live close to the routes I may take hiking or biking. Readers could help shape the route and provide suggestions for “kindness” stops along the way, where I might provide a service for others.
I would like to see this website become a platform for what I call “You Hikes,” or “You Bikes.” Borrowed from the concept of thru-hikes, where a designated trail is hiked from end to end, a You Hike is one that uses designated trails as a backbone for long distance journeys, with added roads and/or trails that satisfies the particular needs of the sojourners. An example is when we hiked the American Discovery Trail from west to east, then added a few hundred miles north to arrive at our home in Norfolk.
So stay tuned! More is to come, more frequently, at least if the current rosy outlook for caregiver assistance holds.
A year ago I began a review of our walk across the country, from May 2011-May 2012. I retold our story by being open about Cindy’s cognitive decline at the time, a decline that reversed during the hike but resumed afterwards. Here is an update of how our life stands as of June 2022.
We are entering the fourth year of my hospice care for Cindy here at home. Since the beginning of hospice care our situation and routine changes very little, one reason why I reviewed our hike across the country instead of posting infrequent updates. After the passing of months even a situation as stable as ours features a few changes.
While changing Cindy a few months ago, her foot apparently caught on the mattress and I ended up tearing a ligament in her knee. While this did not cause much pain, bruising occurred and her left calf became floppy, hanging in whatever direction gravity dictated. That injury has healed, obviously with plenty of rest among other treatments, but a permanent change to our routine resulted.
I used to stand Cindy up for a slow “dance” three or four times a day, in essence holding her up in my arms and swaying to the music, while her left leg provided some support. Half the reason for our “dances” was to maintain a modicum of Cindy’s physical strength and integrity, but without that leg providing some support holding her up required too much endurance on my part. I hold her in my lap three or four times a day instead.
Just today I noticed her left leg finally providing the proper resistance to her range of motion exercises, but we cannot go back to our old routine. At least holding her in my lap still gets her torso upright and out of bed throughout the day. The intimacy of her being on my lap is no less than our “slow dance,” in fact better, as I no longer struggle with keeping her upright when she goes slack in my arms. By the way she nuzzles and buries her face into my chest I suspect she prefers this permanent change to our routine.
Partly because of her injury I position Cindy and her pillows in ways that sometimes lead to red spots alternating between her lower back and right heel. I check for this in the morning and applying ointment always eliminates the spots by the end of the day. Skin sores leading to infections are one of the causes of death for those with advanced Alzheimer’s, but they have never threatened Cindy.
The same cannot be said for Cindy’s spreading gum disease. I dutifully administer prescribed mouthwash with cotton swabs to her gums, but the necrosis where gums meet teeth still spreads. Cindy seems to actually enjoy the swabbing of her gums, but I cringe with the knowledge that there is a higher coincidence between gum disease and dementia than there is with the beta-amyloid plaques that cause Alzheimer’s.
Cindy’s gum disease resulted from her unfocused chewing, causing food to pile up and saturate her gums. Unfocused sipping as well sometimes requires the use of tablespoons or syringes to feed her liquids. Her healthy appetite remains as we still eat the same meals, but the time to do so slowly increased over the past few months.
Meanwhile, unfocused swallowing contributes to the frequency and subsequent concern for Cindy’s rasping and coughing. Piling up at the back of her throat could be mucus, drool, liquids or a combination. Of the three most common causes of death for those with dementia—infections, starvation or pneumonia—I am most wary of the latter, but the hospice nurse has yet to find any problems with oxygen levels or congestion in her lungs.
Almost a year ago now Cindy’s coughing alarmed the hospice volunteer that sat with her one evening a week. She stopped coming, afraid that Cindy might pass away during her watch. Others have stopped coming over the past year as well, with all four of the PCAs I once hired through a Medicaid program no longer coming.
The lack of coverage for special occasions poses the most difficult challenge I face. Months ago I lined up both coverage and back ups for my recent 50th class reunion, taking advantage of both Medicare and Medicaid programs. With a couple weeks left I went through five cancellations, the last one being the morning of the reunion. Fortunately, I found coverage that same afternoon, in time to attend the evening reunion.
The difficulty with special occasional coverage, plus my regular coverage shrinking to less than ten hours a week, revives again my hope to find residential caregiver assistance. I figure if the coverage actually lives here they cannot get away (that’s a joke, sort of). Anyone who has a suggestion for who would be interested in this, please leave me a comment.
Over the past few months a couple visitors claimed they witnessed a smile from Cindy, but I think that may be wishful thinking. I have not seen a “Cindy smile” for a long while. I see her become more alert when she hears our children’s voices in the room, also looks of what seems to be pleased recognition of me, but no smiles.
This would be another reason for a residential caregiver, to have more smiles return to the house. I often can make others smile through playfulness or compliments, and I trust I still make Cindy smile inside, but more tangible expressions would do much to keep my own spirits up. Now in our fourth year of hospice care here at home, I assume my routine must be that of a permanent gig.
We hung around the Housatonic Valley Association’s office long enough to greet the staff when they came into work. They gave us each a new HVA cap, prompted to do so by the condition of my current HVA cap from wearing it for thousands of miles across the country. A group photo was taken and we headed out for quite literally the home stretch, hiking a scenic alternative to what was once my daily commute. After just a mile we stopped in at Beard’s General Store for tradition’s sake.
Throughout our marriage, Cindy and I chose not to maximize our earning potential from the three undergraduate degrees, three graduate degrees and two professional certifications earned between us. We instead prioritized the raising of our family. We chose to remain in the home and rural town where I was raised, having settled there at the start of our marriage to take care of my Mom. I would not know then that my married life would both begin and end with caring for a loved one afflicted with dementia.
We also decided that one of us should always be home and available to our kids, though there were a handful of times when our only option was to bring them to work with one of us. As a visiting nurse Cindy could not take them; they instead came with me to HVA, a watershed organization for the Housatonic River, where I worked rather unhindered as their GIS Manager. My cure for three bored kids was a trip to Beard’s for deli sandwiches.
Ever the traditionalist in our family, Charissa insisted on getting sandwiches at Beard’s, claiming that was the reason she joined us for the last four days, also pointing out the 22 miles we made her hike the day before warranted some type of compensation. We arrived to find the general store under new ownership, but the current proprietor had been alerted to our coming. Only the staff at HVA or Ky would have known our intention and schedule for dropping in, whomever the culprit also “anonymously” paid for our sandwiches.
We followed the course of the Housatonic River for the entire day. Most of our journey involved following rivers, with the notable exception of the Great Basin desert. How fitting that the last river should be the one for which I used a spatial database to make maps and address environmental concerns, the same river I followed on my daily commute.
We ended the day by getting back onto the Appalachian Trail to spend the last night of our journey at Belter’s campsite, just a stone’s throw away from Belter’s View, overlooking the Housatonic River valley we just followed. The three of us shared the shelter of Charissa’s tarp, enabling us to continue chatting after the sunset. At one point a porcupine came towards us but I growled and he acquired second thoughts.
We listened to rain fall on our protective covering for one last time, one of the most pleasing sounds of long distance hiking. I thought about the connection of this final night with other nights of our journey, all the other times when our portable home kept us comfortable no matter what the weather was doing. I also thought about the two times our tent failed to provide such comfort, during the dust storm in Kansas and the untimely deluge while setting up camp in Ohio.
Mostly though, while laying awake listening to the rain, I thought about transitions. Many long distance hikers confess that they have trouble transitioning back to “normal” life. Honestly, that was never me. I easily transitioned into long distance hiking; I easily transitioned back. Yet the future was never as uncertain as what awaited us at the end of this journey. Even if Cindy was healing, she likely would not be a nurse again, nor would I reboot a career as either an academic or a GIS specialist. We also faced the possibility that the gains Cindy made with her brain health on this journey were only temporary.
__________
We became like Pied Pipers on the final day of our journey. Our youngest daughter Serena met us at the Mountain Side Cafe to hike the thirteen miles up over Canaan Mountain and into Norfolk with us. On top of Canaan Mountain we took a long lunch break by Wangum Reservoir, where our son Noah joined us for the last four plus miles. One of our hosts from the second week of the journey, Roger Monty, also joined us at the reservoir, having flown out from California just for the occasion. With him was Bill Perry, the mutual friend who connected us with Roger to be our host, having flown in from Vancouver, Canada.
Together the six of us came down off Canaan Mountain, then took another long break at Ky’s house, which was very near our route. A few more people joined us there for the final mile into town, including Ky. She walked with us while her daughter drove the van and camper she used as our support vehicle.
At the ballfield road, just around the corner from the official end, Little Leaguers stopped their game to come over and cheer us on. Next to them was the Yale Summer School of Music Campus, where music students cheered and waved us on. This final post about our journey coincides with the premiere of my American Discovery Symphony that will be held on that same campus tonight. Seating is still available.
My brothers Bob and Ernie met us at the ballfield road and joined us as we finished the journey at our UCC chapel, with a huge banner and about forty people there waiting for us. Two of those people were Bill and Marcia Hastings, whom we first met briefly as tourists visiting the canyonlands of Utah. They continued to follow my blog afterwards and drove down from upper New York to celebrate our finish. Also at our finish were high school classmates and long distance hiking buddies.
I marveled at the contrast between our Cape Henlopen and hometown finishes. Only a handful of people joined us at Cape Henlopen, though half of them were reporters as media outlets made us front page news the next day. There were no reporters at our hometown finish, yet the outpouring of hometown support was by far the more special of the two finishes.
We moved the celebration into the chapel, where we experienced our last potluck supper of the journey. Our church choir sang a couple of songs for the occasion, including “Seasons of Love,” which I designated as our theme song after hearing it sung at a variety show in New Albany, Indiana. Unlike the choirs I dropped in on across the country they did not need to offer any incentives for me to stay, they were one of the things I missed most during our leave.
After stuffing ourselves one last time with all the delicious homemade dishes I gave my final talk, which consisted of three stories that particularly moved me during the journey: the story behind the “confuse who is giving and who is receiving” quote from Leadville, Colorado; the story of a ten year old boy from Lamar, Indiana who cried about and then helped the homeless; and the story of the Methodist Church in Sinking Springs, Ohio that expanded their membership tenfold after dedicating their mission to kindness. So many other stories were just as worthy of being told: stories of kindness to us, such as our Trail Angel Day; stories of individuals helping others, such as Debbie Syano raising the money for a library in Kenya; stories of communities helping their own, such as all the localized community programs networking together to help the less fortunate in Marion, Illinois.
I learned from a neighbor a few days later that our blog changed his outlook of people from cynical to hopeful, that even people with different political views were humane when national issues and animosities were put aside to focus on local needs and kindness. More people have since echoed this opinion. I considered our public mission a success, whether by changing some attitudes towards humanity or by giving local groups new ideas on how to structure a community meals program. Unfortunately, that message is needed now, ten years later, more than ever.
Also successful is the mission of those who maintain and publicize the American Discovery Trail. We truly discovered the broad mosaic of America as we walked 5,000 miles across the country. We discovered a wide variety of natural and cultural landscapes, as well as many sources for beauty, joy and kindness across the country. So much so that I composed the symphony to tell the story of this rich American Discovery, which I subtitle “an orchestrated travelog and love story.”
If I were to ignore hindsight I would also say we were successful in regards to our most important mission, to reboot our lives and heal Cindy. She went from a withdrawn person who could not keep a journal on her own, nor assist me with setting up camp, to being able to do both. She grew more confident and hopeful for herself with each passing week of the journey.
I bottled up the moment Cindy put the tent up by herself as a permanent memory of what hope feels like; I still flash back to those moments when Cindy proclaimed: “I feel myself getting better!” Unfortunately, such hope was short-lived. The day after our finish I brought Cindy in to see a physician, where she was diagnosed as having Lyme disease, acquired from that New Jersey tick. There happens to be a high correlation between the spirochetes responsible for Lyme and gum disease with dementia, an even higher correlation than with the amyloid plaques that mark Alzheimer’s.
We had just finished what would be the most amazing of all our journeys together, but my caregiver journey was really just beginning.
