I know that the novel and movie “The Notebook” contains elements similar to my experience with Cindy. A man refers to a notebook to remind a woman with dementia of their shared past and love. The symphonic slideshow I rehearse almost daily that relives our 5,000 mile walk across the country resembles this strategy of staying connected.
Because of this similarity I am not likely to ever read “The Notebook” or watch the movie. I understand many people love either or both. I understand I tend to be moved by such movies. I understand the reality of my caregiver situation differs significantly with “The Notebook” fiction. Still, the potential of the movie hitting too close to home is not a risk I am willing to take. I would watch such a movie only by accident.
Accidents happen.
I treat the period from Valentine’s Day of February 14 to Cindy’s birthday on February 19 as Romance Week. In our limited capacity for celebration we watch romantic comedies during this period. This year I selected movies we have not seen before, such as the “The Map of Tiny Perfect Things.”
The movie provided no advanced warning for capturing the feelings in my current situation as a caregiver. How could there have been? The only things I knew about the plot ahead of the time was the teenage romance that formed the genre and that it involved a time loop. I enjoy time loop movies like “Groundhog Day” and television series like “The Good Place;” this seemed like a good bet for entertainment.
The movie features a teenager pursuing a common theme with time loops, perfecting the day he is trapped in. This goes on until he discovers someone else caught in the time loop with him. He convinces her to join him in hunting and mapping all the perfect moments that could be found in that day. Eventually he wants a romantic relationship to develop, but a poignant secret holds her back.
I’ll spare you the spoiler alert of that poignant secret but, once the male protagonist discovers it, he realizes he is not trapped in his own time loop, but hers. He also realizes that he no longer can, in good conscience, impose his desires on her in the time loop. Instead, he resigns himself to his potentially infinite involvement in a time loop he cannot escape.
That feeling of resignation to a time loop beyond one’s control hit me like a brick. For eight years of my caregiver existence time progressed linearly. As Cindy declined I made adjustments to the “new normal.” Almost two years ago Cindy had her first seizure and went on hospice care. Since then I have experienced few “new normals.” Instead each day has become more like a time loop of the previous day.
Instead of a map of “tiny perfect things,” I developed a routine. These routine things help with Cindy’s will to live, my brain health and welcoming each new loop into existence. They mostly work. When I go to bed in the evening I look forward to starting the routine over again for the next “loop.”
I particularly look forward to the start of each day. After spending a few minutes changing Cindy’s mattress pad, I lift her out of be bed and hold her in my lap, where I rock her as we listen to music. I suspect this tender scene would bring a tear to the eyes of most observers. I would miss this start to my day when the “time loop” ends. Plus who knows? Maybe I am not as dedicated in my routine for brain health when the loop ends.
Yet the uncertainty from essentially being caught in Cindy’s time loop leads to this feeling of resignation, a feeling portrayed in “The Map of Tiny Perfect Things” better than anything else I have watched. I can engage with a modicum of joy in my routine of “tiny perfect things” each new day that loops around, but must resign myself to being stuck in a loop beyond my control, seemingly without end. Having stumbled upon this discovery by accident, from now on movies with time loops will set off an internal advisory label for me.
“The Map of Tiny Perfect Things” is a Prime Video original movie.
This was a morning when Cindy’s underpad needed to be changed at the start of her day. As is the routine for when this happens I pick Cindy up in my arms and sit down in the neighboring chair with her in my lap. To accomplish this same task home health aides need to rock her back and forth on the bed, but I have the strength and legal immunity to use this riskier method.
Riskier perhaps, but my method involves TLC to an extent that no nursing home can provide. I gently rock Cindy while suggesting we should relax and listen to the music for a while. The theme I picked for that morning was Andrea Bocelli. As Cindy’s head sunk into my chest I reflected on the December past, present and future of our final journey.
Ten years ago, in December of 2010, Cindy was let go from work. She probably should have been released earlier, but her advanced training and bedside manner earned her a reputation as the agency’s “Golden Girl.” They were giving her the benefit of doubt until there could be no doubt.
December 2010 thus marks the beginning of my caregiver role. A few months later we walked 5,000 miles across the country under my “care.” Cindy improved during the journey, but no further improvement occurred after the hike was over. While doctors continued to rule out Alzheimer’s because of her age I tried different things to help Cindy get better.
In the summer of 2013 I experimented with working at a nearby residential camp for six weeks, thinking she might need greater independence from me. There still was a safeguard with our son Noah also living at home and I spent all my off days at home as well. Yet my “experiment” backfired and she declined noticeably during the summer. In the fall of 2013 she finally was diagnosed as having Alzheimer’s.
In December 2013 we started our bucket list when we booked our first and only cruise, which became part of our first snowbird winter. A few months later we returned to long distance hiking on the Pacific Crest Trail, accompanied by our oldest daughter Charissa. This time the hike did not reverse her decline.
By summer 2016 Cindy could only walk a few hundred yards at a time. With donations from people reading this blog I acquired a pedicab in order to get her outside and around our pastoral town as much as possible. Many thanks, by the way, your donations enhanced our quality of life. I later acquired an adult stroller to do the same.
By December 2016 Cindy could no longer walk on her own. By putting her arm around my shoulder I could walk her places, but she could not even stand up independently. There was no task she could do for herself and she was essentially nonverbal. In other words, she had the symptoms for the last stage of dementia.
As our ten year “anniversary” approached I reacquainted myself with the seven stages of dementia known as the Reisberg Scale. I was particularly interested in how long each stage lasts on average. The first two stages are unmeasurable because they correspond to nonexistent or undetectable decline.The mild cognitive decline involved with the third stage lasts from two to seven years.
When Cindy was let go from work ten years ago she already was in the fourth stage, considered to be early dementia with moderate cognitive decline. When we started our bucket list she was in the fifth stage of moderately severe decline, with some sixth stage symptoms of severe cognitive decline as well. Reisberg estimates the average length for the combined early and middle stages of dementia to be six years, which held true for Cindy.
The average range for the final seventh stage of late dementia lasts from 1.5 – 2.5 years. Cindy has been in this stage for about twice as long as the average for the normal onset of Alzheimer’s, but for early onset these ranges are supposed to be compressed as those afflicted decline faster. Most estimates I read gave a range of 4 – 8 years for all the dementia stages combined. Cindy already has survived 25% longer than the upper range for early onset dementia, with her gains coming in the later stages. She has not shown signs yet of the three common mechanisms of death for Alzheimer’s: starvation, pneumonia or skin infections. In fact, the visiting aides and nurses continue to marvel at her appetite and skin condition.
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Andrea Boccelli starts to sing “Time to Say Goodbye” as Cindy continues to relax and listen in my lap. This was the last song in the mix tape our exchange student daughter from Germany gave us upon her departure. From that moment on this song always moved me deeply.
Living in the present is key to thriving as a caregiver, but sometimes that is not humanly possible. I do not feel like the time is near to say goodbye to Cindy, yet how can one avoid thinking about that while listening to those lyrics? That is a painful reality to our situation; there must be a hundred triggers for thinking about goodbye that are just going to keep happening. Each time will have no bearing on the present while calling to mind a sad moment in the future.
Another impossible task is to permanently tune out all the background “white noise” of caregiving. I hardly ever notice any more how the legs of my backpacker wife have atrophied, but every once in a great while that “noise” comes to the foreground. Occasionally I notice how sunken her eye sockets have become; or her lack of energy. Ironically, living in the present means these pervasive signs of decline usually fade into the background like white noise, but occasionally they rise to unpleasant consciousness of what the past once was.
Living in the present does have a downside. Ten years ago I thought I would hike around the world someday. I was gratified that nobody ever doubted me when I shared that intention, but as time past I doubted I would have the longevity. I curtailed my ambitions down to Europe, South America and Oceania. Now I do not think about any future hikes abroad, realizing in the present that is not within my control. Pining for things that may not occur is a one way ticket towards depression, better instead to dwell on the things you can control.
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Twenty years is often cited as the longest amount of time a person might be afflicted with Alzheimer’s. Ten years from now I could be writing a blog post titled “Twenty Years After.” Assuming that might become true I need to make a few adjustments in order to manage another ten years.
I never meant to retire. Studies have shown that people who do not retire have better brain health. Of course, people who do not retire remain in or start new jobs they enjoy. I had plans in my next phase of life to draw income from both music and writing, maybe even from hiking, but as time passes on I cannot assume these will happen due to physical limitations.
Thus I need to find a way to draw some income while being a caregiver. Our financial situation was dicey at one time with neither of us working. Refinancing the house, the generosity of others and a one time windfall righted the ship. We are financially stable for now but ten more years with neither of us working could put us back into a hole. Being engaged in projects is a key to caregiver health, I just need at least one of my future projects to draw income.
The symphony is finished and the plans to perform it next summer derailed by covid, but that opens the door for producing a DVD instead. Originally I had planned to donate income from the symphony to charities related to our final journey, but I may need to keep a portion for myself. I hope this project will facilitate earning income from other music as well, produced by my band The Bards of Balance. Maybe I will create new music targeted for income as well.
I stopped accumulating stuff long ago, as do most people gaining wisdom as they age. There are books still unread, board games not played, in that accumulation. As a form of closure I intended to go through our various archives of stuff in my next phase of life, some to digitize like photos and music, others to use for the first and/or last time. Now I am thinking I need to find a way to start that process now.
A variation of this archives theme is to go back and read through the entries of this blog. Those who have followed our journey for a while likely noticed the entries becoming fewer and farther in between during Cindy’s final stage of Alzheimer’s. There is less to report now with less free time to do the reporting. What I do share now is less informative or inspirational, contradicting the intended purpose of sharing.
A coming New Year approaches while potentially another decade as caregiver awaits. I still will post any new development in this blog, but also share “reruns” from the past. This exercise may also identify enough material to be book worthy, providing an opportunity to share our final journey with a larger audience and a means to draw income in my next phase of life, whether that time is far off or close at hand.
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This is the past, present and future of our final journey as Christmas approaches. A sobering tale perhaps, but fortunately without the specter of Christmas ghosts needed to guide us. Instead of ghosts there are the spirits of Cindy’s will to live and my will to persevere. Snapping out of my December themed reflections, I return Cindy to her hospital bed and continue on with the routine that helps both spirits to thrive.
After feeding the cats I return to our “bedroom” to start Cindy’s day. If her eyes are closed, droopy or alert I go about my normal routine. On this day her eyes are fixed on the ceiling in a vacant gaze, giving me cause for concern. Before I get near Cindy I chat about anything that comes to my head. I turn on the music and overhead light for more stimuli in the room. Then as I draw near I announce:
“Hey, beautiful! I’m going to give you a hug. OK? Are you ready for a nice hug? Here I come.”
Whenever I see that gaze in Cindy’s eyes now I go into these precautionary measures. A few weeks ago Cindy also had a vacant gaze in her eyes as I was about to start her day. When I walked right over and hugged her, she immediately went into seizure. Her face turned beet red, revealing intense physical and/or emotional distress.
I continued hugging Cindy while adding soothing words to lessen the seizure. I did not give her lorazepam after the seizure was over since they usually are weeks apart. Plus I have been giving the anti-anxiety medicine only at night; I keep Cindy calm by other means during the day.
A few hours after her wake-up seizure Cindy once again vacantly gazed at the ceiling. I played guitar as a strategy that has worked well in the past. Not this time, though. Her body again went rigid and she started to breath convulsively. I threw the guitar on my bed and rushed to limit the seizure activity from round two.
Now that I am concerned when I see Cindy’s vacant gaze in the morning we have reached another milestone in Cindy’s decline. I gauge her condition by her only tell-tale feature, her eyes. Her vacant gaze indicates some type of internal agitation, occasionally accompanied by spasmodic rigidity of her limbs. This upsets me even when seizure is not the result.
At times Cindy still has alert eyes. She will look around the room trying to make sense of what she sees. Sometimes they follow me or another person around. Sometimes the alert eyes are joined with a smile. Ironically, Cindy becomes most alert for the few days after a seizure, as if she has shaken the fog away from her head.
When Cindy is neither agitated nor alert her eyes are closed or drooping, revealing Cindy to be asleep or barely awake. Another milestone had been reached a few months ago when I let Cindy sleep whenever she wanted during the day. She still sleeps at night as well.
I know what to make of the vacant gaze … that’s bad … and the alert eyes … that’s good. I am never sure what to think or feel about the closed or drooping eyes. Part of me feels relief, even comfort, in knowing that Cindy is at least not going through some internal agitation. I occasionally imagine that she might even be having a pleasant dream. The other part of me recognizes the increased amount of time Cindy has a vacant gaze or sleepy eyes, rather than being alert.
I take pride in Cindy lasting so long in hospice care, now going on twenty months. I take pride in how the nurses and aides still marvel at Cindy’s appetite and skin. I take pride in Cindy’s will to live continuing indefinitely. She cannot become any more nonverbal, immobile or incapacitated than in this final stage of Alzheimer’s, but her appetite, health and will to live remain strong.
Unfortunately, a will to live can prevent dying but provides no remedy for being fully incapacitated, at least not for Alzheimer’s. A will to live does not reverse the declining alertness. A will to live may not even mean life is being enjoyed. Make no mistake, the decline continues. It’s all in the eyes.
That declaration by Cindy echoed in my mind as I pushed her in the stroller to an outdoor wedding, 3.5 miles from our home. We had planned to jog to this event for months. Lindy the bride considered us an extra set of parents, calling us Mom and Dad since high school, and our youngest daughter Serena was her maid of honor.
Three weeks ago jogging that distance would have been easy and the only foreseen obstacle to our attendance would have been weather, but within those three weeks an unforeseen obstacle was thrown in our way. The same day I fixed our broken stroller we went out for a seven mile jog. As we were nearing home, jogging up the cracked sidewalk that runs past Infinity Hall, my sandal caught in a crack and I went down. I was not going to let go of the stroller on a hill and it went down with me.
Cindy was fine; the stroller merely tipped backwards in my grip until she was situated comfortably gazing at the sky. I did not fare as well. Increasing stiffness and pain surrounded my left knee as I lay squirming on the ground. State highway workers coming down the hill in a large truck witnessed the spectacle and pulled over to help. The two of them got me standing again and I used the stroller as a walker to hobble my way back home.
Exactly two weeks later the immense swelling of my leg, indicative of a partial ligament tear, subsided enough for an outdoor test. Three days before the wedding I walked up and down the driveway ten times. Two days before the wedding I walked the few hundred yards to the village center for errands. The day before the wedding I had coverage for Cindy that allowed me to walk in the woods for at least four miles. Since pushing the stroller on roads would be less hazardous to my knee than a trail I felt I was ready.
On our way to the wedding, two thoughts crossed my mind by the time I reached the end of Laurel Way. “I’ve got this!” was my first thought. Having gone a third of the distance already I knew I could make the distance. “This is going to suck!” was my other thought. Every step was going to involve some level of discomfort.
I turned onto Route 44, a major road I usually avoid with the stroller. Fortunately, the shoulders were large and we were safer than jogging up a cracked sidewalk. I shortened my strides as most long distance hikers learn to do on the trail to prevent further injury. Shortened strides means less discomfort; less discomfort means more opportunity for my mind to wander. I reflected on the time Cindy declared “mind over matter.”
In the spring of 1980 we were part of a group training to thru-hike the Appalachian Trail that year. We were not yet a couple, but the mutual interest was strong. During a phone conversation I was filling the experienced hiker role of preparing Cindy for the worst: warning of the potential boredom, discomfort and pain. Tenderfoot though she was, Cindy’s response to my cautions was: “Mind over matter.”
For years I have joked to our kids and others that what attracted me to Cindy was the longest stride I had yet seen in a woman. In reality that was more of a first impression. “Mind over matter” was what really got me thinking about Cindy as my future life partner.
We arrived at the wedding in better time than expected. The picnic tables lined up under the broad pavilion left a wide aisle down the middle for a procession. We were early enough to pick almost any table; to catch a little sun we chose one protruding a little outside the pavilion in the rear. The rest of our family came trickling in to join us soon after. Being in the back benefited Charissa and Matt as they walked about holding Lyla. By my guess Lyla was the youngest attendee at three months old; she drew an adoring pre-ceremony crowd.
Bagpipe and drum accompanied the procession. The drummer later commented on FB that this was the most joyous wedding for which he performed. I am not sure how much of the joy Cindy could fathom but she remained alert for the entire ceremony. The recession of the wedding party ended up near us in the rear of the pavilion, where Lindy said “Hi Mom!” to Cindy.
We did not stay for the wedding buffet. Leaving before a food buffet is a drastic departure from our long distance hiking days, but by this time not even our picnic table caught any sun. Though the wedding enjoyed wonderful October weather, the air was growing chilly for Cindy and we had a long stroll to get back home. Recalling the discomfort on my way to the wedding also promoted a desire to get the return home over with sooner rather than later.
The stroll went better than expected. Having just walked this same stretch I established short term goals that accompanied my shortened strides in abetting the discomfort. I was able to place mind over matter as I again drifted back to when Cindy spoke those words.
Once our hike of the Appalachian Trail began Cindy proved her words not to be hollow. During the first half of the journey Cindy’s knees were often strained and inflamed; she often wore knee braces or wraps to sturdy her knees. Many days Cindy impressively displayed mind over matter; though one day in particular I will never forget.
A support vehicle enabled injured hikers in our group to shed much of their pack weight. The problem for people who took advantage of this was they could not stop short of where the support vehicle was going to be. For an infamous thirty-two mile day this meant we started hiking at 5:00 am. I previously hiked many thirty mile days with a full 40-60 pound pack, but none were as arduous as this one would prove to be.
Cindy’s sore knees caused a tediously slow pace. We needed 21 hours to reach our destination, arriving at the Port Clinton pavilion at 2:00 am. I nodded off while walking several times; Cindy’s discomfort kept her awake. Only by placing mind over matter could both of us prevail. Despite the ordeal, I do not recall a single cross word spoken to each other. A life partnership was forming.
Placing mind over matter helped with this final journey of ours. Other lessons learned from long distance hiking have guided us throughout our continued life together as well, but none are more valuable than this. Cindy’s continued will to live through nineteen months of hospice and my perseverance as a caregiver are both examples. I suspect any worthwhile journey must survive the test of mind over matter.
We were looking to carry on a new tradition this year on the date of our anniversary, September 19. Last year on that date I took Cindy to the top of Dennis Hill in the adult stroller. Our daughter Charissa with her husband Matt met us on top, delivering a picnic with food ordered from Woodcreek Pub and Grill. This September I planned a return outing to Dennis Hill, turning the event into an ongoing tradition.
Sometimes the fates conspire relentlessly against you. The conspiracy against the Dennis Hill tradition began on the auspicious date of September 11, when I was to donate blood to the Red Cross. For weeks my BP has been down where it should be; I was guardedly optimistic that my diastolic would meet the requirement for donation. On the other hand, I have white coat syndrome; my blood pressure is elevated by the anticipation of being monitored.
White coat syndrome won out on that day. I scheduled another appointment for September 17, two days before our anniversary. Pushing a stroller up to the top of Dennis Hill would be difficult if I succeeded at donating blood just two days prior. I made the first mental adjustment to our new “tradition,” by planning an outing to the ballfield instead.
On September 14 the frame of our adult stroller broke. I immediately sent a message to the manufacturer, Adaptive Star. Though their response was great I would need to wait for a new frame to be shipped. I could carry Cindy in my arms for a fair distance, but not to the ballfield, not after donating blood two days earlier. I started thinking in terms of having an anniversary celebration on our own lawn.
I understand the problem with planning an outdoor anniversary picnic as an ongoing tradition. Cindy now has been in hospice care for eighteen months. Such longevity has an indefinite feel. As long as her will to live thrives she could go on indefinitely, but probability suggests the tradition could be short lived. As a practical matter I intended to invite our long distance hiker community to the picnic in addition to our family.
We have a group page for announcements to our long distance hiker community, but I could not make an announcement until I knew where. I could not announce where until I knew the status of both my blood donation and broken stroller. On Thursday, September 17, the blood donation was successful while the frame was just then being shipped. I finally announced our anniversary plan for Saturday, to be held on our own lawn.
A two day notice is not much, but turned out to be too soon. I knew for days that Saturday was to be cool, in the zone where bringing Cindy outside depended on the wind chill. On Saturday morning I awoke to a forecast of high winds. Since our hiking friends did not have much notice anyways, I did not hesitate to cancel the invite in the eleventh hour.
I could make the theme of this “a series of unfortunate events,” but that would be misleading. If temperatures in the fifties with steady winds in double digits would be too cold for a lawn picnic, they certainly would have been too cold on top of Dennis Hill. Just a single factor, not a whole series, would have derailed our best laid plan.
I could make the theme of this “you can’t always get what you want but … you get what you need.” We still celebrated our anniversary indoors with family. For most of that time Cindy was fairly impassive, as she often is these days. Yet there were times she looked attentively in the direction of Lyla, our new granddaughter. How much recognition or perception was there in her gaze? I cannot answer that, but I know she paid more attention to Lyla than she would have to our hiking community, extremely dear to us that they may be.
Two years ago our family gathering would mean our three children. This year that number doubled with Charissa’s husband Matt, daughter Lyla and Serena’s fiance Enoch joining us on FaceTime. We got what we needed in terms of a special anniversary gathering, but there is something more to the theme.
Though both Cindy and I felt closer to our long distance hiker friends over any other community, there is no lineage involved in that belonging. There was no preceding community that gave rise to us long distance hikers. When the last of us pass away there will be no community to which ours “gave birth.”
Gathering around Cindy’s hospital bed, in our makeshift combo bedroom/living room, our family lineage hit home. My best laid plan went astray for Cindy, but we have family. Some day one of our children’s best laid plans for me will go astray, but they will have family. Some day Lyla will have a best laid plan go astray for her mother, but she will have family.
The best laid plans of caregivers often go astray. The series of unfortunate events, or single event, that thwarts our plans changes with the ongoing situation and times. What does not change for fortunate caregivers is the presence of family. May the circle be unbroken.
PS: The frame came for the stroller and it is fixed!
I finished orchestrating Journey, the fifth and final movement of the American Discovery symphony. As the title implies this movement for a full orchestra provides an overview of the total American Discovery experience. It also is the most touching of the movements. If you watch only one of the five movements this is the one to see in its entirety.
Now that the composition phase of American Discovery is over the production phase has begun. I will be collaborating with Kim Scharnberg, Gabriel Lofvall and folks from Yale to have the premiere of the symphony performed at the Norfolk Music Shed next summer, the tenth anniversary of when we started our walk across the country. Here is a recap of the brief for Journey.
When my wife Cindy lost her job because of early cognitive decline, we resolved to reboot her life with a long distance hike along the American Discovery Trail. We walked over 5,000 miles from the Pacific coast back home to Connecticut, over a full leap year of 366 days. The journey lived up to the name of the trail we followed; we discovered America in ways few people experience.
American Discovery uses music, photos, sound effects and interviews to portray this journey across America. Five movements of Beauty, Culture, Kindness, Joy and Journey portray different themes of discovery. As the symphony unfolds an additional theme emerges: a loving couple living life fully despite a tragic affliction.
Journey features an orchestra, acoustic guitar and vocals to portray the adventure of walking across the country. Modulations during the piece recall the themes of all the previous movements. The Spirito bulk of the final movement conveys the actual walking across 5,000 miles of America, while a Serene intro and conclusion correspond respectively to background before and reflections after the journey. The movement conveys a concluding, inspirational message of dealing with tragedy by living life fully and discovering America.
As I gave Cindy her first hug of the day, claiming instead she was giving me a hug, I asked her the usual question: “Did you sleep OK.”
Back when Cindy could answer she always said “yes” even though I knew that could not be always true. I asked the question not so much to find out how she was sleeping, but to start the day with a dose of her innocent cheerfulness. I continue to ask the question in memory of that cheerfulness.
This morning I half expected an answer. The day before Cindy was alert and frequently smiled for both our morning visitor and our afternoon home health aide. Such alertness is typical for two days after a seizure.
Since Cindy’s first seizure in March 2019 she has averaged about one a month. Sometimes they are weeks apart, sometimes months. The day following a seizure Cindy spends more time than usual resting. Then the next day, no matter how severe or mild was the seizure, Cindy shows greater clarity and good humor.
Since Cindy has been in hospice care I give her a small dose of lorazepam, included in the hospice package, when she becomes “twitchy (there are commonalities between Alzheimer’s and Parkinson’s).” Occasionally, I will give her lorazepam before bedtime to increase the odds we will sleep through the night. That was before I rediscovered that anti-anxiety drugs increase the chances of dementia, or possibly an earlier death from dementia.
I had skipped the lorazepam for a couple days before this latest seizure, even though there were a couple signs that the next seizure might occur. She was twitchy in the evening ; she did not have a bowel movement for a couple of days. When the seizure occurred I did not kick myself, but rather became hopeful for what might happen next.
I was not disappointed as she smiled frequently for both our visitor and home health aide. As I was taking Cindy’s socks off that evening I got the inspiration to play “This little piggy” with her. She cracked a pleasant smile as I went “wee, wee, wee all the way home.”
The next morning Cindy again flashed a couple of smiles, though not as many. As the day progressed she reverted to the norm. During our evening “dance” my now impassive partner got my sleeve and arm soaked with drool. A seizure can buy a couple days of alertness and humor, but not more.
This now is my biggest dilemma as a caregiver. Do I give lorazepam only after a seizure? If I do that she will have better brain health and longevity, more moments of joy. Or do I give lorazepam whenever the signs are there for a possible seizure? That means more sleep for me, less discomfort for Cindy.
I suspect most people would do everything to make a loved one comfortable in the present. Yet as long distance backpackers both of us are accustomed to discomfort as a necessary byproduct of a preferred lifestyle. If I were in Cindy’s shoes I would opt for joy over comfort. I have no doubt that is Cindy’s preference as well.
It ain’t easy watching your loved one twitch almost to the point of convulsion. It’s even worse when the convulsions start. On the other hand, my greatest moments of joy these days as a 24/7 caregiver are Cindy’s moments of joy. I fear there would be no joy left in her, plus I could be hastening her demise, if I relied too heavily on lorazepam (which actually is one of the most harmless anti-anxiety medicines).
I do use other means first to reduce twitching. I give Cindy supplements like melatonin and ashwagandha to calm the mind. I play guitar and sing for her. I read to her. We go out for long jaunts in the stroller. She never gets twitchy during one of our jaunts. Yet these strategies cannot be maintained constantly throughout a day. Giving her lorazepam every time she twitched would still amount to a couple times a day.
What a dilemma! Given the state of constant decline, no doubt I will have to give her lorazepam frequently. Did I mention that morphine also is in the hospice package? For now that’s a dirty word, an unthinkable. Ironically, if/when the situation gets to that point I can be assured that she will have slept OK, but the cheerfulness that Cindy embodies will be gone.
We discovered Aintee’s Barbecue in East St. Louis, during our walk across the country. We had just crossed the Mississippi River into Illinois on a clear day late in December, the kind of day that allows odors to travel far. An open air barbecue attracts hikers like moths to a flame.
During our journey I constantly was on the lookout for inspiring stories, Aintee’s (her real name is Lisa) was particularly heartwarming. Aintee’s Barbecue consisted of grills lying on top of 55 gallon drums cut in half, set up by the side of a convenience store. Her smile was as bright as the day as she shared with us the unique arrangement that enabled her to run her humble business.
Lisa and her Aintee’s Barbecue
Lisa, a black woman, became a self-appointed caregiver for James, a white homeless vet. He had been sleeping under a nearby bridge and occasionally mugged until Lisa was moved to intervene. She outfitted her truck so that James could sleep in it. During the day, while Lisa grills and serves ribs to her customers, James picks up trash around the convenience store lot. The appreciative convenience store owner, a Pakistani, allows Lisa to run her business by the side of his building. Bartering outside the grid with racial harmony at its finest!
The recent events sparked by the George Floyd tragedy got me thinking about this lesson in cooperation and compassion between races. This was coupled with another lesson from our experiences in East St. Louis. I chuckle to think at what my father’s reaction would be, had he still been alive.
As a teenager in the late sixties I witnessed the frequent spectacle of my father swearing at the television every time there was coverage of a riot. The target of his wrath were the rioters. Yet as an impressionable and observant lad I noticed my father had only good things to say about every single black person that lived in town. Every … Single … One.
True, there were very few blacks in our lily white, rural New England town, but whites did not have a similarly perfect record in my father’s estimation of character. This contrast between anonymous stereotypes and local reality left an enduring impression on me. You realize no demographic consists of wholly bad people once you get to know their individuals.
The American Discovery Trail brought us through a few cities. We hiked through dicey neighborhoods in Oakland, Grand Junction, Evansville and DC. The city with the worst reputation was East St. Louis. A mugging of an ADT hiker, widely known to the hiking community, once occurred there at night.
We feared no mugging as we hiked through East St. Louis. We sensibly hiked during the day and at a time of relative calm. One of my slogans in talks across the country was: “Expect trouble, find trouble. Expect kindness, find kindness.” Expecting kindness, that is what we found in East St. Louis, courtesy of Aintee’s Barbecue.
Later on in the day we had an encounter with the police. By this time we were hiking on a state road through an industrial neighborhood, Monsanto Avenue to be precise. As a person that took over 10,000 photos documenting our journey, the good and the bad, I took a picture of the factories around us. Within two minutes a squad car pulled up and two policemen rushed out towards us.
The policemen demanded I delete the photo I just took and looked over my shoulder to make sure I followed their instructions. “Homeland Security” was the reason they offered, even though any motorist could have taken the same picture without getting caught. Regardless of the absurdity of the demand, at no time did I feel threatened by the police.
This now sticks in my mind during this turbulent time: I never felt threatened in a depressed neighborhood. This also was true for every other depressed neighborhood we encountered: Oakland, Grand Junction, Evansville, DC and others. Furthermore, I never felt threatened by the police even in a depressed neighborhood where the color of my skin suggested I did not belong.
I understand this would not be true for many whites. Many would feel threatened in a depressed neighborhood of a different color. Some may have justification due to a traumatic experience in the past. Many may have fathers who swore at the television without providing the balanced perspective of local reality. All of us are bombarded with messages to encourage fear and anger, which requires great determination to resist.
Fear and anger aborts our empathy. We cannot imagine ourselves in someone else’s condition because we are too absorbed with our own, even when the threat amounts to no more than images on a television screen. Biological/hormonal evidence supports this claim, but I bet you know it to be true from experience. The more fear and anger we have, the less we empathize. A society full of fear and anger is one lacking in empathy.
For my part, my heart aches when I imagine the apprehension any black would feel if a police cruiser suddenly appears and two white officers rush out. Indeed, their apprehension extends to being in a neighborhood of a different color. Personally, I would find life to be a great burden if I was saddled with such pervasive, yet justified, apprehension. My whole life has been a counterpoint to living that way. I bet many whites with a more apprehensive lifestyle than myself would feel the same, if they applied the empathy to understand going through life with constant apprehensions.
I have a tonic for when my heart aches over such thoughts. Instead of images on a television screen, or sound bites from talk show hosts fueling fear and anger, I see images from expecting kindness and finding it all across America. Images such as Lisa of Aintee’s Barbecue, with her big heart and big, bright smile.
As a citizen from the land of steady habits, I call up the same type of music for each day of the week while I do the early morning chores. On Saturdays I call for the children’s music we played for our kids. This Saturday our favorite musician from that genre, Tom Chapin, was playing.
I change Cindy quickly and easily as she gives no resistance. From the neck down Cindy cannot move her muscles voluntarily. Above the neck she can lift or turn her head. She also can stick her tongue out. She did this as I moved her limbs for physical therapy and my face drew near to hers.
For years I assumed that Cindy sticking her tongue out was only a signal for food, even when there was none around. A few weeks ago I finally wondered if she wanted something else and kissed her. I quickly discovered that an intimate kiss was precisely what Cindy wanted, perhaps has been wanting for years.
I admit to not feeling comfortable kissing Cindy as she lay helpless physically and verbally. In no way does this feel like “old times” for me. However, since I was Cindy’s first and only boyfriend, there can be only one image in her mind for who is giving her the satisfaction of a kiss. There still must be a vibrant memory, or at least a feeling, of one particular person residing in her mind. That thought is enough for me to always oblige her with a kiss, despite the awkwardness.
I change Cindy’s disposable mattress underpad as the last thing to do in the room before leaving to make breakfast. I used to shift Cindy to a chair in order to do this. Now I use another mode of affection.
I get the new underpad unfolded and within reaching distance on the bed. Then I sit on the swivel chair next to Cindy, at about the same level as the bed. From this perch I easily slide Cindy over and onto my lap, curled up with her right cheek against my chest. I switch out the old pad with the new. Then we spend one or two songs in this position while I rub her back and talk to her.
The song “Grow in Your Own Sweet Way” by Tom Chapin starts to play. This is my favorite of all the children’s songs when our kids were young; the only song that on occasion caused a tear to shed. The title says it all, a song about the innocence and growth of your little loved ones.
Listening to the song invokes bittersweet memories. I realize no time in our lives are as innocent or free of pain as they might seem to be in retrospect. Yet the juxtaposition of holding a declining adult in my lap, instead of a blossoming child, preserves the sweetness of the song without the promise.
Still, I am grateful for our two new modes of affection over the past few weeks. Cindy appears to be grateful as well, her cheek buried into my chest. Ironically, kissing my wife now feels awkward but holding her in my lap like a child brings comfort to us both. Both modes reinforce our love during our final journey together.
After changing Cindy and going through her physical therapy I put her “dancing shoes” on and swing her legs out of the bed. Her “dancing shoes” are a pair of sandals with rubber soles gripping the floor. Her sandals are not what you would want for actual dancing, but for Cindy they keep her feet in place and I can balance her weight over them. Even so I must plant each foot in the right spot and smoothly lift and transfer her weight from sitting to standing inside my arms.
Normally Cindy is six inches shorter than I am, but she slouches lower even with my support. Still, we are able to sway gently back and forth, this morning to a playlist called “Morning Acoustic.” My computer screen is blank, allowing us to see our reflections on the screen. I do believe this comforts Cindy further. I am grateful her head is so much lower than mine as we “dance;” I can shield my tears from her.
I keep saying there is a difference between depression and sadness. During Easter I saw a post, unfortunately without the foresight to bookmark the source, relating depression to the threat of resurrection. Depression occurs when someone has little hope for or even fears what may lie ahead; they even fear a resurrection. I assure you that is not me.
My life has been a series of welcoming the unknown; that has not changed. There was a time when I doubted my ability to care for Cindy at home until she passes away, but those doubts are gone. I handle her infrequent seizures now with a level head; I believe I can handle any of the unknown ahead and still maintain my health.
My tears are caused by empathy, sadness for Cindy, though not in the present moment. Cindy appears to be content with her face buried into my chest. In fact, I feel better by focusing on how Cindy must be feeling as we “dance.”
The tears are not even for how Cindy generally feels about her current condition. A few years ago a bout of self-awareness might have caused a tear in Cindy. More recently I see occasional looks of bewilderment, sensing that something is not quite right. Yet all along her affliction carries the blessing of not fully realizing the state of her decline.
No, what most often brings about sadness these days is empathy with the “past” Cindy. While I am doing everything I can to make Cindy’s life enjoyable, even succeeding to some extent, I cannot shake the realization that this is not what Cindy would want for herself. If “past” Cindy could see through my present eyes she would be overwhelmed with grief. Feeling this grief from a “past” Cindy causes my tears.
Ironically, I know that much of her grief would be the concern for how her illness was impacting others. I wish my mind could make “past” Cindy see that this has been no great burden to me. I know what must be done to maintain my health and I have been as conscientious about that as with caring for Cindy.
I am not afraid of any form of resurrection, or the unknown, or what life will be after Cindy. This is the ultimate test for why I know I can be sad but not depressed. As we sway together, cheek to chest, I hope the unknown is not burdening her either.
