Charissa comes to visit on most Fridays, making that a day I can go outside by myself for exercise. My usual route takes me up to the top of Lovers Lane and back, about four miles. The second mile is all uphill on a dirt road through the woods. Even if I walk the other three miles, running up this one mile gives me all the workout I need and still be back in under an hour.
This time I finished my “walk” by going to the pub to order supper for Cindy, Charissa and myself. As I waited for our meals to be prepared I sat at the bar and had a beer. First I struck up a conversation with the bartender, pointing out that moving a particular bottle on a shelf to the left would make it less likely to be knocked off. I admitted I was an obsessive kind of guy that way.
A couple at the end of the bar overheard the conversation and chimed in they were similarly obsessed, indeed had made the same observation about the bottle. In short order I was sitting next to John and Maria and they were treating me to another beer. Since I do not get out at all a second beer loosened an already fairly loose tongue.
I am adept at meeting and chatting with strangers, to the point where I am seldom strangers with anyone for long. From all my long distance journeys I have extensive practice at this, but I also have the right attitude. I believe people are social.
Early on this belief was merely part of my inherent nature. Then I engaged in social systems research and found out our “uncivilized” condition was much more social than our “civilized” condition. The social ideal of “being civilized” drips with irony. More recently I am engaged in brain health research and the same conclusion pops out: we are meant to be social, since being social makes us healthier.
We are not as social as could be because by nature we also tend to live up or down to the expectations of others. Our society is a mess in regards to how little we expect from others, particularly others of a different country, culture or demographic. What should be normal social behavior driven by empathy we praise as heroic, while antisocial behaviors proven bad for our hormones are considered normal. At the root of this cynicism are authorities that nurture our distrust of humanity because we will then place greater trust in authorities and heroes.
At one point in our conversation the topic of kindness came up. Maria shared a story about her father once asking her what was most important for a person. Maria at first responded “intelligence,” but her father countered with “kindness.” This profoundly affected her.
I have a similar question for folks as Maria’s father. If you were to form a society where everyone had one particular trait in common, what would that trait be? Many civilized folks would answer “intelligence,” or the “best and brightest,” those who best facilitate progress. I go with what our natural selves would seek as the one trait everyone in my society should have: loving. That might mean a few less civilized gadgets and comforts achieved, progress would be less revered, but to the benefit of our brain and societal health.
My order to go came out as we chatted. I told John and Maria not to worry, my daughter Charissa would readily forgive her Dad being delayed by this rare occasion, being out on the town, being social. Yet as our conversation continued Charissa eventually called to find out what was going on. I put her call on speaker phone and John charitably covered for me, speaking to Charissa as if a daughter of his friend was also his friend.
After Cindy passes away my blog and writings will continue. Perhaps I can help some folks believe, for the sake of both brain and societal health, how natural that being friends with others, even strangers, can be. …. Or let’s meet at the pub and chat.
“Are you hungry?” I asked before leaving our “bedroom” to make breakfast.
“Yes,” she replied in her barely audible manner these days.
Cindy responds to a question occasionally, though not very often. In fact, she infrequently makes any verbal sounds that would be attempts at communicating. I attempted to put Kirk Jr. in her arms before leaving, but she appeared to be resisting. I asked:
“Do you want Kirk Jr.”
“No,” she responded breathlessly.
Now this was uncharted territory. Two responses minutes apart, rather than a week apart, was cause for notice. After breakfast we did her exercise routine, then I balanced Cindy on her feet to “dance.” She clutches her arms to her chest as always in her initial stance. I need to pry them loose and wrap them behind my back for the sake of our “dance.”
“Let’s get this arm around me where it belongs,” I say, as I often do:
“Uh-huh,” she responds for the third time in the same morning. Cindy also giggled and smiled frequently during the morning, almost like the “old” days (a few years ago) when I could get Cindy to smile simply by smiling at her first. Now this was something worth writing a blog post about.
Now for the bad news. Cindy’s lucidity came the second morning after she had another seizure, even though I gave her anti-seizure medicine right before the 2:30 am episode. No subsequent seizure has been as bad as the first, but this one was up there. She bit her tongue, causing blood to trickle out of her mouth, the second time in a row that has happened from her seizures.
I do not think Cindy is near death, but there is a phenomena called paradoxical lucidity that occurs to some people who do. The week or so before they pass away their cognition becomes much clearer. Could there be some relationship between a seizure assaulting the mind and the clarity that sometimes occurs before death?
Cindy has experienced about ten seizures since the first one last March. After each one Cindy was most likely to respond to a question; most likely to show recognition of people; most likely to smile brightly. This observation comes with no definitive insight, but there must be more than coincidence to this.
A partial explanation could be the supplements I give Cindy to mitigate general twitching and occasional seizures. At least I can claim that no seizure has been as bad as the first one nine months ago. I do not claim that these, nor any supplements automatically enhances brain health, for reasons I will cover in a subsequent post. However, the mechanism of action for the supplements I use are certain and the results may be more than coincidence. Considering that none of them have harmful side effects, others might give them consideration.
I give melatonin as a noted brain hormone. People usually take melatonin to help with sleep, but it has known anti-seizure properties and facilitates removal of brain toxins as well. I give ashwagandha, an herb also with anti-seizure properties and proven to lower blood pressure. Admittedly, I am the one in need of lowered blood pressure, but lower blood pressure also means better flow to the brain.
I give Cindy a choline supplement, more for brain enhancement than an anti-seizure measure. Most Alzheimer’s medicines to date are anticholinase inhibitors. That is a fancy way of saying they allow choline to be processed by the brain more effectively. I do not propose with any certainty that a choline supplement will reverse or slow down dementia, but as an essential nutrient for the brain I figured it does not hurt.
Other supplements I give Cindy are Vitamins C and D, though these are more for general health. Three years ago Cindy could no longer walk; nine months ago she became fully incapacitated an placed on hospice care. Yet here she is, still enjoying life to the extent that she can. I share may approach with supplements not as a proposed cure but as possibly enhancing the quality of life during this tragic affliction.
Rather than New Year’s Resolutions I believe in New Year’s Directions.
A new direction for me this year is the lack of direction in Cindy’s decline. For the start of the past few years I was uncertain whether Cindy would still be around for the next. Yet here she is, now on hospice care, not much worse than when hospice started last March. She has lived four months longer than the default time frame for hospice care, with no further decline in sight. That leads me to now look at her condition more like indefinite permanence rather than unrelenting decline towards an end.
This new direction for Cindy’s condition means new directions for me as a caregiver. In past years I would not incorporate some activities into a routine because of the uncertainty of continual decline. I am ready to change that for my New Year’s Directions, using my favorite brain health mantra of “Be Social. Be Positive. Be Active” as a guide. I also make these directions public, as I welcome anyone to assist with these new directions.
This new year I want to take advantage of our adult stroller for small gatherings around our dining room table, sharing meals, light-hearted games or conversation. The stroller fully supports Cindy when she sits, expanding what we can do. We recently attended our first Christmas Eve service in a few years, thanks to the stroller.
Earlier in her decline, Cindy used to enjoy watching people have a good time together; I believe she still can soak in some of those vibes. We have many communities to approach: family, neighbors, hikers, nurses, etc. This new direction improves my social life as well.
Greater positivity in the new year will require less time spent on traditional social media. Software exists to turn one’s blog into their own social media platform akin to Facebook. This Humanity Hiker blog started with the tagline: “Love kindness. Build community. Believe in humanity.” Lately from my brain health research I have adopted the motto: “Be social. Be positive. Be active.” Over the year I will take steps in the direction of providing a social media platform guided by both my tagline and motto, a platform with positive, affirming interactions between members.
Another direction I will continue to follow for being active composing the American Discovery Symphony and creating the accompanying slideshow. Last year I orchestrated first drafts for the first four movements of the symphony. This year I will orchestrate the “grand finale” movement and continually take steps towards turning all the drafts into a final, polished project. I feel confident that the American Discovery Symphony will provide a touching tribute to Cindy, an inspiring call to discover America, and even a little insight on brain health.
Care to assist me? If you are in the area, let us have a game night. If you are tired of the negativity on traditional social media platforms let me know and I will keep you in the loop about mine. If you want a preview of any part of the American Discovery symphony drop on by, or maybe I can arrange for a small “gig” at your place.
There is another new direction for this year. Our daughter Charissa is due for our first grandchild in July.
Those are my directions this new year to be social, positive and active. What are yours?
Towards the end of my first thru-hike I encountered a coal-miner, also nearing the end of his thru-hike. We took a break and chatted awhile, as back in the seventies thru-hikers encountered each other much less than they do now. He confided he had black lung disease and had expected he would pass away during the thru-hike, before reaching the northern terminus of the Appalachian Trail. Now that Mt. Katahdin loomed imminently before both of us I asked the obvious question of what he would do once he finished. His reply:
“Keep on goin’ I s’pose.”
Coal miners once used canaries as carbon monoxide detectors. Their rapid breathing and heart rates provided an advance warning when conditions in the mine became life-threatening. Us caregivers can benefit from our own “canary in a coal mine.
My previous post about having constant dreams about hiking, along with an occasional dream about Cindy, prompted a few comments of concern or support. One of them was apprehensive that I should be looking into a professional caregiver and begin the letting go process. Please know that my own “canary” does not yet indicate an unhealthy situation. Blood pressure is my indicator.
I have a family history of hypertension, plus my situation is conducive to stress. Vascular dementia results from poor blood flow, which correlates with blood pressure. To address this concern I acquired a blood pressure monitor and made lifestyle changes to keep my blood pressure down. I could take pills instead, but there is a greater benefit from using lifestyle factors. If I keep blood pressure down artificially by pills then that no longer serves as an indicator that my situation is unhealthy. I mitigate the immediate threat of hypertension, but not the overall threat of an unhealthy situation, while introducing an element of risk not associated with lifestyle factors.
One of the important lifestyle factors for both blood pressure and brain health is the deep sleep that allows the brain to eliminate toxins. Though some dreams can occur during deep sleep, they mostly occur during the REM stage, particularly the dreams one remembers. C. S. Lewis in his Narnian fantasy was onto something.
Excessive dreaming indicates you are not getting enough deep sleep. The excessive dreaming that prompted my last post did indeed correspond to a rise in my blood pressure. Fortunately, I have managed my routine to obtain a healthy blood pressure range again and the dreaming has decreased a little as well.
Admittedly, keeping blood pressure down with lifestyle factors is not easy, yet lifestyle factors are as effective as pills. In the past I have been able to reduce blood pressure from an all time high of 172/123 down to 120/78, in a little over a month. My problem is keeping blood pressure down without relapse, like dieting this can be difficult (the two are related, of course). A regular routine with taking pills is much easier to maintain.
Yet keeping my blood pressure down with lifestyle factors I must (and speaking like Yoda I do), because I do so for two people. No one can take better care of Cindy than me if I stay healthy, but only if I stay healthy. Only through the pursuit and success of lifestyle factors will I know that is happening. Once again, lifestyle factors are as effective than pills, certainly are healthier, as long as one perseveres. I am perseverent; I just need to keep up with everything in the necessary routine. For those who have expressed concern, if eventually I cannot succeed at managing blood pressure naturally I will start the process of “letting go.”
To each their own as family history and situation dictates, but I suspect blood pressure would work well for many caregivers as their “canary.” However, the goal for effective caregivers should not be knowing when to escape, but to know which, when and how conditions and routines must be changed to make escape unnecessary. Escaping from an unhealthy coal mine is one thing; an escape that risks the health of another when you are the best person for the job is another.
One can imagine why the coal miner chose the Appalachian Trail for his final journey. Cooped up in the dust filled mine that plagued his lungs for most of his life, he no doubt desired to spend his remaining days in the open air. Who of us can even imagine such a craving? We can understand as well why he was so nonchalant about reaching Katahdin. The Appalachian Trail was not a bucket list item to cross off; he just wanted to keep tasting fresh air.
In the coal miner’s incidental wisdom lies the key to success for all long journeys. I have hiked thousands of miles with many long distance hikers; I have met a great many more. Not a single one of us dwells on the destination, that would be overwhelming. Besides, the success of a journey really lies in the journey. So does the true motivation. The destination merely signals, like the “canary in the coal mine,” when one needs to “let go” of one journey and begin a different one. Until my own “canary” signals otherwise this caregiver will “Keep on goin’ I s’pose.”
“Good night. Sleep tight. Don’t let the bedbugs bite. If they bite, squeeze them tight and save the blood for another night.”
I fondly recall my father saying that to me at bedtime, delivering the last line with an impish grin. I passed the tradition on, reciting both lines for our kids. I oftenwished them “sweet dreams” at bedtime as well.
Lately I am having what might be considered “sweet dreams” almost every night. Like the one where a hiker friend of ours showed me his artwork. On one page of a spiral bound pad was a Berenstain Bear type character nodding his head, on another page was a car backing out of a parking spot, both with actual movements as if they were gifs on a printed page. Pretty sweet!
There were other sweet elements of that dream, as well as the others I am having. They all involve some type of adventure, usually hiking, always outdoors. Many include Cindy partially recovering from Alzheimer’s.
The persistence of these “sweet dreams” becomes a little disconcerting over time. I am reminded of the Narnian island of dreams driving shipwrecked sailors crazy. They became desperate for the chance to sleep without dreams again. I am developing that same longing. They say dreams are the subconscious processing what the waking conscious does not or will not, but I get the message already.
I used to think about hiking every day until a few years into our marriage. Then I focused on the daily routines of family, community and work to the exclusion of past memories or future fantasies of adventure. I eventually questioned whether I would be long distance hiking again or not.
Walking across the country to reboot Cindy’s life and brain health revived my thirst for adventure. For the next few years I fantasized about future long distance hikes. Then the daily routine of a full time caregiver began to crowd out those fantasies once again, the cycle renewed.
Only this time I know the thirst for adventure will come back to me when the situation permits. Until then my subconscious dreams keep percolating what my waking conscious neglects. I suppose that being an adventurer defines so much of who I am that my mind will not, cannot, let me abandon that entirely. So I dream.
Ah, but why does Cindy’s recovery visit a few of these dreams … and why only a few? What does my mind need to process with her occasional visits? My best guess is striking a balance between hope and false hope.
Some people claim that false hope is better than no hope. Others warn not to encourage false hope. Based on personal experience, I side with the latter. False hopes are prone to being dashed, which can be devastating.
False hope for something in the future also detracts from living fully in the present. I trust that if you live fully in the present, the future will be better as well. On a long distance hike you focus on the journey, not obsess over the destination.
So I focus on my caregiver journey with Cindy and leave the future to my dreams, with an occasional miracle thrown in. Even so, I am nearing a threshold. I long for nights when, rather than “sweet dreams,” I can “sleep tight” … preferable without the bedbugs.
We may have gone for our last long outing of the year. Our adult stroller may allow us to continue on shorter outings as late fall and winter arrives, but I will have to balance the health advantages of being outdoors with the comfort disadvantages for Cindy. For now, the fall colors were vibrant still as we went on our ten mile route.
Cindy is most verbal during these outings, reminding me of our early days as a couple. Our circle of long distance hiking friends used to call her “Gabby Galvin” (her maiden name) for her ease and frequency of chatting while hiking with others. Usually she would talk about hers or someone else’s hobbies—such as cooking, gardening, pressing flowers—but not always.
During a town stop in the midst of a seven month hike Cindy caught up on the “news,” discovering that Cher had purple hair. That became her topic of choice for the next stretch. That she was talking to a bunch of unkempt, literally down-to-earth, mountain men/women did not matter. We never let her forget her obsession with Cher’s hair afterwards (mostly I never let her forget, but others as well).
Yet even when talking about the color of Cher’s hair, Cindy was pleasing to hear chat. A close friend of Cindy’s, from the days of raising our families, recalls how they would go for trail runs together. She reports fondly on conserving her breath during these runs, while Cindy would chat away as if they were out for a leisurely stroll.
Once Cindy’s cognitive decline started so did her chatting, an unavoidable consequence of people becoming less sure of themselves. As we walked across the country to reboot Cindy’s life people often remarked we must have much to talk about while hiking. My stock answer was we had little to talk about, since we both were witnessing the same things all the time.
Yet there were still moments of Cindy’s old chatty self, such as whenever we stopped to check the map. The conversation would be one-sided, my mind focused on finding our way while Cindy observed and talked about our surroundings. Our “conversations” went something like this:
My mind: (Where in hell are we?!)
Cindy: “These are nice flowers over here.”
My mind: (Oh, here we are. How did we end up here?!)
Cindy: “I am going to take a picture of these.”
My mind: (There’s no water for the next ten miles!)
Cindy: “What a colorful rock! I will add it to my collection.”
Cindy was one of the few long distance hikers who collected and packed rocks! Only now I was often the one packing them for her. No matter, we walked across the country to remove Cindy’s stress. Experiences and “conversations” like these seemed to indicate the strategy was working. I would carry any amount of rocks for that.
At this point in Cindy’s decline “verbal” means barely audible mumbling, void of distinct words. If Cindy was a mere acquaintance I pushed around in the stroller I would not have any idea what her mumbling was about. Given our past experiences of Cindy marveling at flowers and rocks, while I worried about being lost, I am fairly confident her mumbling while outdoors is a good thing.
Our ten mile route includes a side trip to Wood Creek Pond, a nice place to take a break. Wood Creek Pond was the setting for my blog post titled “I uv oo,” made a year ago. By that time she already was fully incapacitated and I had not heard her utter more than one word at a time. She pleasantly surprised me by instinctively returning my three word expression of love. I suspect being surrounded by natural beauty helped.
A similar thing happened a year later. These days I do not hear even a single word enunciated properly. However, as we paused to observe the fall colors I commented: “Isn’t this a nice place?”
“Yeah,” Cindy replied in a barely audible voice, but very distinctly enunciated.
Much of dementia follows a gradual decline, barely perceptible from one day to the next. Occasionally, there are markers of decline, such as the markers I noted for how far Cindy could walk. The decline in her gift for gab provides another set of tangible markers.
Thirty-five years ago Cindy was known as Gabby Galvin and chatted about things like Cher’s hair. Twenty-five years ago she loved to chat even while trail running. Ten years ago her decline had begun but she could carry on a one-sided conversation when moved by the beauty around her. A year ago she could utter a three word expression of love. Last week she uttered a simple “yeah.”
Taken in sequence these markers paint a sad picture of inevitable decline. Yet each one, considered only in the moment, provided a moment of elation. That is the way with Alzheimer’s, a condition for which a simple “yeah” will do.
4:12 am – I am awake. Whether Cindy woke me or not I seldom know for sure, but I do know she appears agitated, which sometimes occurs around this time of night. Her hospital bed does not align seamlessly with my regular bed but I am able to reach over and hold one of her hands. Her fist is clenched at first but over time relaxes and her fingers slip into mine. We continue holding hands even as one or both of us slip back into sleep. I awake again, find Cindy to be sleeping peacefully and withdraw my hand to assume a more comfortable sleeping position.
7:00 am – My alarm goes off. I quickly do the birthday rounds on Facebook, then carry my overnight urine bottle upstairs to dump the contents in the commode and add some more. I come back downstairs to feed the cats in the kitchen to stop their complaining.
I return to our “bedroom” and adjust the room from the “night arrangement” to the “day arrangement,” first pushing my bed back against the wall to allow maneuvering room on both sides of the hospital bed. Today I have Segovia playing on Amazon music. Sometimes I will pick an artist, sometimes a composer like Beethoven, but always a genre of soothing instrumentals for Cindy’s waking.
I turn my attention towards Cindy and tell her “I need a hug.“ Not “I want to give you a hug” mind you. I do what I can to make her feel like she is giving rather than receiving, even though she is fully incapacitated now. Usually she flashes a hint of a smile when I do this, but this morning something feels different. I see the hint of a tear and I sense she is experiencing regret, not for her situation as a whole, but regretting that she is incapable of controlling her arms to hug me. I proceed to change her as usual, then cheerfully suggest to her I ought to make us some breakfast.
7:36 am – Monday mornings I cook eggs to go along with toast, tea and a banana. If we have desserts in the house this is when I serve them. Today we still have some chocolate chip cookies our daughter baked for us.
8:03 am – I place the serving tray on the swivel table we use for our meals and sit in the chair next to Cindy’s bed. I put on the show that we watch for breakfast, which currently happens to be “Psych.” This is the perfect breakfast show for us, lighthearted and zany with a touch of romance. I put the towel I use for a bib in place and go through our eating routine: one bite for Cindy, one bite for me, one sip for Cindy, one sip for me, until we finish everything on the tray. I mean everything. I take delight in how much everyone is surprised by Cindy’s continuing appetite.
8:47 am – I help Cindy with her range of motion exercises: 110 repetitions of various stretches for her arms and legs. After the exercises I change her again, this time putting on her pants and “dancing sandals.” Fortunately, this morning we still have time for a dance before someone from town visits to keep Cindy company. I play the Temptations on Amazon Music and hold Cindy in my arms as we sway back and forth. I tell her things like “this feels really nice,” and “you belong in my arms.” Her face is buried in my chest but I still can see a hint of a contented smile.
9:16 am – The friend who is visiting Cindy arrives. This happens every weekday morning around this time. For the next two hours I wash dishes, tackle some household chores, then prep for lunch. About midway through the visit I hear: “There’s that smile! You’ve made my day!”
Every regular visitor has that same goal, to see a smile from Cindy before they leave. Usually, but not always now, she delivers. Her smile brightened days when she was healthy as well. I often joke about how I could charge admission for Cindy’s smile, at least for the folks in town.
11:17 am – After our guest leaves I figuratively cross my fingers as I go to change Cindy. This is often the time of day that Cindy has a bowel movement, but I must change her in time to have lunch before the home health aide comes (when I am lucky, her BM comes during the home health aide visit). Fortunately, I am able to change her quickly. We start watching a movie from our videotaped collection while we eat our lunch, consisting mainly of fruits and vegetables.
11:59 am – The home health aide arrives. She comes on Mondays, Wednesdays and Fridays. Our routine for the rest of the day will be different now from Tuesdays and Thursdays, when no aide comes, and from the weekend, when no visitors come in the morning.
The aide’s most important function is to sponge bathe Cindy, since we no longer are upstairs where we can shower together. This was the biggest reason for placing Cindy in hospice care, as part of the package for moving downstairs where I can get her outside more. An added bonus has been the braiding of Cindy’s hair after a shampoo. While the home health aide cares for Cindy I work in the kitchen, cooking up a big batch of chicken, broccoli and rice that will be our suppers until Friday.
1:27 pm – I return to our downstairs “bedroom” and sign our aide’s timesheet. She is both very warm and professional at her job and we hope she continues on with us. People from agencies generally are not as reliable as visitors from town, but the hospice program has proven different. I place my computer on top of the swivel table again and switch the TV input to the computer. I practice movements of the American Discovery Symphony, set to slides of our journey, like I have done thousands of times before. While I practice Cindy gets to view, perhaps relive, the most amazing of all our journeys together.
2:28 pm – After the third movement I check and find out Cindy needs to be changed. Practicing the symphony was also a means of stalling, to make sure Cindy is freshly changed before we go out in the adult stroller. I again put on her dancing sandals and we have another “dance” after changing. This time she buries and rubs her face in my chest. I do not know if this is an act of comfort or if her nose just itches.
2:43 pm – I finish strapping Cindy into the stroller and we are ready for the seven mile jog we typically do on the days when the home health aide comes. On Tuesdays and Thursdays we often do a ten mile route, the weekend whatever I feel like. Every outing is weather permitting; today is dry with temperatures in the seventies.
The stroller has an awning for the sun, but with a window I can see through. Cindy’s eyes remain open for the whole time we are out. Already the time seems long ago when I took Cindy out in the pedicab; people would smile and wave at Cindy and she would smile back. I do not see her smile during our jog but she mumbles occasionally, which I interpret as enjoyment with being outside.
4:19 pm – We arrive back home, easily negotiating the driveway and the ramp I built for the porch. My ineptitude as a carpenter is legendary, but I can build things that are functional. I carry her from the stroller to her bed through the porch door installed just for this purpose. I put on an episode of the Great British Baking show while I unwind from the jog, take a shower and get supper ready.
The last time I showered with Cindy was many months ago, which now seems like many years despite it being a chore. Meanwhile, taking a shower by myself has become one of my few simple pleasures. Of course, there was a time when taking a shower with Cindy also would be pleasurable, but the last time that happened was about a decade ago.
5:15 pm – We eat supper while watching more of the movie we started at lunch. In addition to some of the chicken, broccoli and rice I prepared earlier we also have our usual supper fare of Greek yogurt with chia seeds and apple cider with apple cider vinegar added. Though eating food is not a problem for Cindy, I struggle at getting liquid in her without it dribbling out of her mouth.
6:02 pm – I change Cindy and go through the range of motion exercises again.
6:22 pm – I put on a family slideshow and place my computer on the swivel table one more time to work on my symphony composition. I currently work on the second movement, the one about culture, the one orchestrated with percussion. My progress on this gives me my greatest satisfaction these days. If someone told my younger self I would compose a symphony someday I would be incredulous. Who has the patience for that?! My situation breeds patience. Silver linings.
7: 29 pm – I start to play the video game “World of Warcraft” (WoW) or, as I like to tell my family, I embark on saving the world. The appeal of the game is less about the quests and more about the exploration of new lands. I am a little embarrassed to admit I am a “gamer,” but this is how I address the explorers itch I otherwise satisfy through long distance hiking. The interactive video game also seems to command Cindy’s attention, keeping her awake better than the Netflix fare.
9:03 pm – I brush Cindy’s teeth, give her melatonin and do range of motion exercises one last time. I do these chores now instead of right before bedtime as a means of keeping her awake just a little while longer. I keep her awake during the day as much as possible so that she will sleep at night as much as possible. Sleep management is one of many distinct advantages of caring for Cindy in her own home.
9:19 pm – We watch a few episodes of a sitcom to wind down the evening for Cindy. She falls asleep while we do this, which is OK now. I should watch only two episodes before moving on to the final evening chores, but I am prone to vegging out at this point in our routine. I just can’t seem to leave the chair while a third episode airs. Still, I figure I do pretty well at avoiding the ennui that might overcome many caregivers.
10:43 pm – I put the room back to its night arrangement then wash the dishes. I practice guitar to strengthen my muscle memory for some riffs, also calming the minds of both Cindy and myself.
11:23 pm – I read the cartoon book Dilbert under soft light until I start feeling sleepy. Cartoon books are the best sleep aid for me. Each lighthearted “chapter” is but a few panels, thus not engaging my attention for long. I give Cindy a kiss on the forehead, tell her ‘I love her,” and turn out the light to close another routine day.
On Thursday, September 19, Cindy and I celebrated our 33rd anniversary. I planned to make this day special by pushing Cindy in the stroller up the old wagon road to the peak of Haystack Mountain. From there I would carry her up the stairs of Haystack Tower to the top, providing for her one last panoramic view of the town she loves.
I did some advanced preparation for this. Our oldest daughter and son-in-law were coming down for the occasion to help out as needed. A week earlier I went through a trial run of pushing Cindy up to the base of the tower. The day before I enlisted a friend from college, whom I had not seen for forty years, to stand in for Cindy as I practiced different ways of carrying her up a few steps of the tower. My remaining need was for the weather to cooperate.
Things do not always go as planned. In this case, the weather was too perfect, about 68 degrees, not a breath of wind, not a cloud in the sky. I faced the reality that, while carrying Cindy up the tower might make for a good story, she might not enjoy the experience of being carried up so many stairs. Nor could we spend much time on top enjoying the view.
I changed the plan, jogging with Cindy up to the broad table land on top of Dennis Hill. Dennis Hill does not provide the panorama of Haystack, but you do not need to climb a tower to get the view. Cindy and I spent well over an hour on top of Dennis Hill, eventually joined by our “support crew” bringing the food we ordered from the pub for a nice picnic. This was part of spending our anniversary as if we were “living each day as our last.”
The charge to live each day as your last prompts some skeptical questions. How does one do that? For how long is that realistically possible? Ironically, if one could do that every single day then doesn’t that become routine? Does living each day as your last become anticlimactic?
Routine has been my friend in this situation. Routine helps me do caregiver tasks in an efficient manner. Routine helps me incorporate brain health elements into each day. Routine gives me mileposts that keep the day from dragging. I do not know if I could do this without routine. Yet following a routine does not come to mind as the goal for living each day as your last.
In my mind, the desired alternative would be to “live each event as our last.” In May of 2015 we had a wonderful long distance hiker’s reunion and celebrated Cindy’s distinction as an Honorary Triple Crown recipient. She wept with joy at the presentation. In February of 2016 we had a large birthday celebration for Cindy, well representative of the various communal hats Cindy wore. She again was moved deeply.
These and other events were prompted by concerns of having limited time left. Indeed, three years ago I started planning for Cindy’s memorial service. I feel a little sheepish about that now but, on the other hand, this premature mindset dictates how I approach each event in our lives.
Three years ago we celebrated our thirtieth anniversary with me confessing I had doubts Cindy would last that long. In theory our 33rd anniversary should be our last, considering that Cindy is on hospice. In theory we could start treating each day as our last, as the probability increases for that happening, but who knows. No matter whether the time left is long or short, my approach will stay the same. We will adhere to a daily routine that makes the best of our situation, while experiencing joy from living each event as our last.
Everything is in place now from our move downstairs. Most mornings I transfer Cindy from the hospital bed in our “bedroom” to enjoy the outdoors on our porch. Facilitating this transfer is our new door to the porch that Cindy’s brother built for us.
Most afternoons we use the ramp l built for the porch to get Cindy on the road and about town. The final piece of the puzzle was an adult stroller to wheel down that ramp. For those that know me well, no need to snicker, the ramp actually is sturdy and works well.
The stroller makes a big difference over the wheelchair for both of us. The final leg of all our walks involve going up our stone driveway. In the wheelchair this often was difficult. Whenever the small swivel wheels hit a rock we would come to a jarring stop. One of those wheels blew out, similar to the shredded tires from an 18-wheeler you see on a highway. That probably does not happen often to wheelchairs, only those used daily for seven mile jogs.
The stroller is easier to push on all surfaces and grades. I had been constrained this summer to just one route when I wanted to go on a longer excursion. Since the arrival of the stroller I have expanded our routes onto more rugged surfaces, like the wagon road of a local Land Trust trail, and steeper grades, such as ascending to the top of Dennis Hill.
The stroller looks good as well. A neighbor hailed it as the Maserati of mobile seating. I immediately embraced that. Whenever townsfolk see us in the stroller for the first time I shout: “How do you like our new wheels!” I brag about our “Maserati,” adding how looking good and status are so important to Cindy and me. When people know you are unconcerned about appearances you can get away with that kind of “bragging.”
Returning to pragmatic considerations, the stroller provides a more comfortable ride for Cindy. She nuzzles better into the seat, with greater support to maintain fairly good posture. I am able to use pillows and a headrest to extend the support further.
I also put a stuffed polar bear in Cindy’s lap, carefully wrapping her arms around the bear and rewrapping them periodically if the bear slides out. The rotund bear is Kirk Junior. I tell people that Cindy either hugs or chokes Kirk Jr., depending on her mood and the ride I give her.
The inspiration for Kirk Jr. came earlier on with Cindy’s affliction. One day I saw her holding the stuffed bear in her lap, both looking very contented. Since then I have used Kirk Jr. both as a comfort for Cindy and to keep her clinched arms a bit more outstretched. I used to keep the bear between us at night as well, in order to create the space for me to sleep better.
There is a difference of opinion as to which one of our children once possessed the bear, but Kirk Jr. is our possession now. After Cindy passes away Kirk Jr. will undergo a gender change, an easy thing for stuffed animals. Then she will be Cindy Jr., accompanying me on adventures. At least a few of these adventures will involve the use of the pedicab and/or adult stroller to give rides to folks that could use them.
I woke up around 4 am thinking about a caregiver I met online whose situation is worse than mine. I mentioned this is an important ingredient for staying healthy, being more concerned for others than myself. Still, any health benefits would be negated if I continued to stay awake rather than get proper rest, also very important for brain health.
I sent the person an email to sympathize and offered some advice about melatonin. Melatonin has come up in conversation several times recently. Known mainly for sleep benefits, melatonin actually provides a variety of known “brain services,” minimizing seizures being one of them. I started giving Cindy melatonin after her first seizure and have been slowly increasing the dosage because of yet another hypothesized benefit, reducing dementia symptoms. I shared this info with my acquaintance in the wee hours and went back to sleep.
Thinking that melatonin is making a difference may be wishful thinking, but I do have corroboration. A string of morning visitors have commented recently that Cindy appeared to be more alert to them. No doubt that is why I could not go back to sleep until I sent my caregiver acquaintance my experience with melatonin. No doubt that also explains the dream I had once I got back to sleep.
In the dream Cindy was lying in bed and I was adjusting her pillow, everyday occurrences in reality. She pointed to her lips with the unmistakable message that she wanted me to kiss them. Now the dream was going beyond the bounds of reality.
Anything near Cindy’s mouth, including an intended kiss, causes her mouth to instinctively open to be fed. Our kisses come when I kiss her forehead, or when she kisses me on the chest as I hold her up to “dance.” The last real kiss on the lips was years ago, as was Cindy using her fingers to signal anything. The only realistic part was her inability to verbalize what she wanted. Still, I continued with the dream without yet being aware this was a fantasy.
I turn my back and in the blink of an eye, or in the scene change of a dream, I notice that Cindy was no longer in bed. I looked around the house, except the house was more like a nursing home ward. I eventually found Cindy wandering around aimlessly. Aimless wandering normally signals an advanced stage of dementia but, considering Cindy has not walked for over two years, this was a sign of hope.
A sign too good to be true, of course. A sign that alerted me to the fact that this was not reality, but a dream. I woke up again, now aware I was destined for a poor night’s sleep, in addition to experiencing the let down when one finds out they were mistaken about good news.
Currently I am giving Cindy 15 mg of melatonin. I plan to cap her dosage at 20 mg. The most serious side effect of high dosage is thwarting the body’s own ability to make melatonin. That is a side effect I gladly risk at this stage.
Do I think my dream will come true? Unfortunately, I do not. My review of the literature leads me to believe that dementia does not result directly from an invasion of amyloid plaques, but rather a metabolic poisoning from free radicals. No organ can withstand continued poisoning, not even an organ meant to neutralize poisons, such as the liver.
I encountered one academic in the literature who swears by the miraculous properties of melatonin for brain health, yet with only anecdotal evidence to offer. I give Cindy melatonin mainly with the hope that she does not continue to have seizures, or at least to reduce their severity. Hope springs eternal though, even if only manifested in dreams.
